His claims decrying vaccines have roiled scientists and medical experts and stoked anger over whether his work harms children. He has made suggestions about the cause of covid-19 that he acknowledges sound racist and antisemitic.

Bolstered by his famous name and family’s legacy, his campaign of conspiracy theories has gained an electoral and financial foothold. He is running as an independent — having abandoned his pursuit of the Democratic Party nomination — and raised more than $15 million. A political action committee pledged to spend between $10 million and $15 million to get his name on the ballot in 10 states.

Even though he spent the past two decades as a prominent leader of the anti-vaccine movement, Kennedy rejects a blanket “anti-vax” label that he told Fox News in July makes him “look crazy, like a conspiracy theorist.”

But Kennedy draws bogus conclusions from scientific work. He employs “circumstantial evidence” as if it is proof. In TV, podcast, and political appearances for his campaign in 2023, Kennedy steadfastly maintained:

• Vaccines cause autism.
• No childhood vaccines “have ever been tested in a safety study pre-licensing.”
• There is “tremendous circumstantial evidence” that psychiatric drugs cause mass shootings, and the National Institutes of Health refuses to research the link out of deference to pharmaceutical companies.
• Ivermectin and hydroxychloroquine were discredited as covid-19 treatments so covid vaccines could be granted emergency use authorization, a win for Big Pharma.
• Exposure to the pesticide atrazine contributes to gender dysphoria in children.
• Covid-19 is “targeted to attack Caucasians and Black people. The people who are most immune are Ashkenazi Jews and Chinese.”

For Kennedy, the conspiracies aren’t limited to public health. He claims “members of the CIA” were involved in the assassination of his uncle, John F. Kennedy. He doesn’t “believe that (Sirhan) Sirhan’s bullets ever hit my father,” former Attorney General Robert F. Kennedy. He insists the 2004 presidential election was stolen from Democratic candidate John Kerry.

News organizations, including PolitiFact, have documented why those claims, and many others, are false, speculative, or conspiracy-minded.

Kennedy has sat for numerous interviews and dismissed the critics, not with the grievance and bluster of former President Donald Trump, but with a calm demeanor. He amplifies the alleged plot and repeats dubious scientific evidence and historical detail.

Will his approach translate to votes? In polls since November of a three-way matchup between President Joe Biden, Trump, and Kennedy, Kennedy pulled 16% to 22% of respondents.

Kennedy’s movement exemplifies the resonance of conspiratorial views. Misinformers with organized efforts are rewarded with money and loyalty. But that doesn’t make the claims true.

Robert F. Kennedy Jr.’s campaign based on false theories is PolitiFact’s 2023 Lie of the Year.

How an Environmental Fighter Took Up Vaccines

Kennedy, the third of 11 children, was 9 when he was picked up on Nov. 22, 1963, from Sidwell Friends School in Washington, D.C., because Lee Harvey Oswald had shot and killed Uncle Jack. He was 14 when he learned that his father had been shot by Sirhan Sirhan following a victory speech after the California Democratic presidential primary.

RFK Jr., who turns 70 in January, wouldn’t begin to publicly doubt the government’s findings about the assassinations until later in his adulthood.

As a teenager, he used drugs. He was expelled from two boarding schools and arrested at 16 for marijuana possession. None of that slowed an elite path through higher education, including Harvard University for his bachelor’s degree and the University of Virginia for his law degree.

He was hired as an assistant district attorney in Manhattan in 1982 but failed the bar exam and resigned the next year. Two months later, he was arrested for heroin possession after falling ill on a flight. His guilty plea involved a drug treatment program, a year of probation, and volunteer work with a local anglers’ association that patrolled the Hudson River for evidence of pollution that could lead to lawsuits.

Kennedy’s involvement with Hudson Riverkeeper and the Natural Resources Defense Council ushered in a long chapter of environmental litigation and advocacy.

An outdoorsman and falconer, Kennedy sued companies and government agencies over pollution in the Hudson River and its watershed. (He joined the New York bar in 1985.) He earned a master’s degree in environmental law at Pace University, where he started a law clinic to primarily assist Riverkeeper’s legal work. He helped negotiate a 1997 agreement that protected upstate New York reservoirs supplying New York City’s drinking water.

In 1999, Kennedy founded the Waterkeeper Alliance, an international group of local river and bay-keeper organizations that act as their “community’s coast guard,” he told Vanity Fair in 2016. He stayed with the group until 2020, when he left “to devote himself, full-time, to other issues.”

On Joe Rogan’s podcast in June, Kennedy said that virtually all of his litigation involved “some scientific controversy. And so, I’m comfortable with reading science and I know how to read it critically.”

PolitiFact did not receive a response from Kennedy’s campaign for this story.

He became concerned about mercury pollution from coal-burning power plants; methylmercury can build up in fish, posing a risk to humans and wildlife. As he traveled around the country, he said, women started appearing in the front rows of his mercury lectures.

“They would say to me in kind of a respectful but vaguely scolding way, ‘If you’re really interested in mercury contamination exposure to children, you need to look at the vaccines,’” Kennedy told Rogan, whose show averages 11 million listeners an episode.

Kennedy said the women sounded “rational” as they explained a link between their children’s autism and vaccines. “They weren’t excitable,” he said. “And they had done their research, and I was like, ‘I should be listening to these people, even if they’re wrong.’”

He did more than listen. In June 2005, Rolling Stone and Salon co-published Kennedy’s article “Deadly Immunity.” Kennedy told an alarming story about a study that revealed a mercury-based additive once used in vaccines, thimerosal, “may have caused autism in thousands of kids.” Kennedy alleged that preeminent health agencies — the Centers for Disease Control and Prevention, the Food and Drug Administration, the World Health Organization — had colluded with vaccine manufacturers “to conceal the data.”

Kennedy’s premise was decried as inaccurate and missing context. He left out the ultimate conclusion of the 2003 study, by Thomas Verstraeten, which said “no consistent significant associations were found between [thimerosal-containing vaccines] and neurodevelopmental outcomes.”

Kennedy didn’t clearly state that, as a precaution, thimerosal was not being used in childhood vaccines when his article was published. He also misrepresented the comments of health agency leaders at a June 2000 meeting, pulling certain portions of a 286-page transcript that appeared to support Kennedy’s collusion narrative.

Scientists who have studied thimerosal have found no evidence that the additive, used to prevent germ growth, causes harm, according to a CDC FAQ about thimerosal. Unlike the mercury in some fish, the CDC says, thimerosal “doesn’t stay in the body, and is unlikely to make us sick.” Continued research has not established a link between thimerosal and autism.

By the end of July 2005, Kennedy’s Salon article had been appended with five correction notes. In 2011, Salon retracted the article. It disappeared from Rolling Stone.

Salon’s retraction was part of a broader conspiracy of caving “under pressure from the pharmaceutical industry,” Kennedy told Rogan. The then-Salon editor rejected this, saying they “caved to pressure from the incontrovertible truth and our journalistic consciences.”

Kennedy has not wavered in his belief: “Well, I do believe that autism does come from vaccines,” he told Fox News’ Jesse Watters in July.

David Remnick, editor of The New Yorker, interviewed Kennedy for a July story. Noting that Kennedy was focusing more on vaccine testing rather than outright opposition, Remnick asked him whether he was having second thoughts.

“I’ve read the science on autism and I can tell you, if you want to know,” Kennedy said. “David, you’ve got to answer this question: If it didn’t come from the vaccines, then where is it coming from?”

How Covid-19 Helped RFK Jr.’s Vaccine-Skeptical Crusade

In 2016, Kennedy launched the World Mercury Project to address mercury in fish, medicines, and vaccines. In 2018, he created Children’s Health Defense, a legal advocacy group that works “aggressively to eliminate harmful exposures,” its website says.

Since at least 2019, Children’s Health Defense has supported and filed lawsuits challenging vaccination requirements, mask mandates, and social media companies’ misinformation policies (including a related lawsuit against Facebook and The Poynter Institute, which owns PolitiFact).

From the beginning, the group has solicited stories about children “injured” by environmental toxins or vaccines. This year, it launched a national bus tour to collect testimonials. The organization also produces documentary-style films and books, including Kennedy’s “The Wuhan Cover-Up and the Terrifying Bioweapons Arms Race” and “The Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health.”

In 2020, Children’s Health Defense and the anti-vaccine movement turned attention to the emerging public health crisis.

Kolina Koltai, a senior researcher at Bellingcat, an investigative journalism group, had seen anti-vaccine groups try to seize on Zika and Ebola outbreaks, with little success. But the covid-19 pandemic provided “the exact scenario” needed to create mass dissent: widespread fear and an information vacuum.

Children’s Health Defense published articles in March and April 2020 claiming the “viral terror” was an attempt to enact the “global immunization agenda” and a “dream come true” for dictators. The group echoed these points in ads and social media posts and grew its audience, including in Europe.

On X, then known as Twitter, Children’s Health Defense outperformed news outlets that met NewsGuard’s criteria for trustworthiness from the third quarter of 2020 to the fourth quarter of 2021, according to a report by the German Marshall Fund think tank, even as Children’s Health Defense published debunked information about covid-19 and vaccines.

In 2019, Children’s Health Defense reported it had $2.94 million in revenue, and paid Kennedy a $255,000 salary. Its revenue grew 440% through 2021, according to IRS filings, hitting $15.99 million. Kennedy’s salary increased to $497,013. (Its 2022 form 990 for tax disclosure is not yet public. Kennedy has been on leave from the organization since he entered the presidential race in April.)

On social media, the message had limits. Meta removed Kennedy’s personal Instagram account in February 2021 for spreading false claims about covid-19 and vaccines, the company said, but left his Facebook account active. A year and a half later, Meta banned Children’s Health Defense’s main Facebook and Instagram accounts for “repeatedly” violating its medical misinformation policies. Several state chapters still have accounts.

As the group’s face, Kennedy became a leader of a movement opposed to masks and stay-at-home orders, said David H. Gorski, managing editor of Science-Based Medicine and a professor of surgery and oncology at the Wayne State University School of Medicine.

“The pandemic produced a new generation of anti-vaxxers who had either not been prominent before or who were not really anti-vax before,” Gorski said. “But none of them had the same cultural cachet that comes with being a Kennedy that RFK Jr. has.”

Rallying a crowd before the Lincoln Memorial on Jan. 23, 2022, Kennedy protested covid-19 countermeasures alongside commentator Lara Logan and anti-vaccine activist Robert Malone. The crowd held signs reading “Nuremberg Trials 2.0” and “free choice, no masks, no tests, no vax.” When Kennedy took the stage, mention of his role with Children’s Health Defense prompted an exuberant cheer.

In his speech, Kennedy invoked the Holocaust to denounce the “turnkey totalitarianism” of a society that requires vaccinations to travel, uses digital currency and 5G, and is monitored by Microsoft Corp. co-founder Bill Gates’ satellites: “Even in Hitler’s Germany, you could cross the Alps into Switzerland. You could hide in an attic like Anne Frank did.”

Days later, facing criticism from his wife, the actor Cheryl Hines, Jewish advocacy groups, and Holocaust memorial organizations, Kennedy issued a rare apology for his comments.

Asked about his wife’s comment on Dec. 15 on CNN, he said his remarks were taken out of context but that he had to apologize because of his family.

Recycle. Repeat. Repeat.

When he’s asked about his views, Kennedy calmly searches his rhetorical laboratory for recycled talking points, selective research findings, the impression of voluminous valid studies, speculation, and inarguable authority from his experience. He refers to institutions, researchers, and reports, by name, in quick succession, shifting points before interviewers can note what was misleading or cherry-picked.

There is power in repetition. Take his persistent claim that vaccines are not safety-tested.

• In July, he told “Fox & Friends,” “Vaccines are the only medical product that is not safety-tested prior to licensure.”
• On Nov. 7 on PBS NewsHour, Kennedy said vaccines are “the only medical product or medical device that is allowed to get a license without engaging in safety tests.”
• On Dec. 15, he told CNN’s Kasie Hunt that no childhood vaccines have “ever been tested in a safety study pre-licensing.”

This is false. Vaccines, including the covid-19 vaccines, are tested for safety and effectiveness before they are licensed. Researchers gather initial safety data and information about side effects during phase 1 clinical trials on groups of 20 to 100 people. If no safety concerns are identified, subsequent phases rely on studies of larger numbers of volunteers to evaluate a vaccine’s effectiveness and monitor side effects.

Kennedy sometimes says that some vaccines weren’t tested against inactive injections or placebos. That has an element of truth: If using a placebo would disadvantage or potentially endanger a patient, researchers might test new vaccines against older versions with known side effects.

But vaccines are among “the most tested and vetted” pharmaceutical products given to children, said Patricia Stinchfield, a pediatric nurse practitioner and the president of the National Foundation for Infectious Diseases.

Kennedy encourages parents to research questions on their own, saying doctors and other experts are invariably compromised.

“They are taking as gospel what the CDC tells them,” Kennedy said on Bari Weiss’ “Honestly” podcast in June.

Public health agencies have been “serving the mercantile interests of the pharmaceutical companies, and you cannot believe anything that they say,” Kennedy said.

Experts fret that the Kennedy name carries weight.

“When he steps forward and he says the government’s lying to you, the FDA is lying to you, the CDC is lying to you, he has credence, because he’s seen as someone who is a product of the government,” said Paul Offit, a pediatrics professor in the Children’s Hospital of Philadelphia’s infectious diseases division and the director of the hospital’s Vaccine Education Center. “He’s like a whistleblower in that sense. He’s been behind the scenes, so he knows what it looks like, and he’s telling you that you’re being lied to.”

Kennedy name-drops studies that don’t support his commentary. When speaking with Rogan, Kennedy encouraged the podcaster’s staff to show a particular 2010 study that found that exposure to the herbicide atrazine caused some male frogs to develop female sex organs and become infertile.

Kennedy has repeatedly invoked that frog study to support his position that “we should all be looking at” atrazine and its impact on human beings. The researcher behind the study told PolitiFact in June that Kennedy’s atrazine claims were “speculation” given the vast differences between humans and amphibians. No scientific studies in humans link atrazine exposure to gender dysphoria.

In July, Kennedy floated the idea that covid-19 could have been “ethnically targeted” to “attack Caucasians and Black people. The people who are most immune are Ashkenazi Jews and Chinese.” The claim was ridiculously wrong, but Kennedy insisted that it was backed by a July 2020 study by Chinese researchers. That study didn’t find that Chinese people were less affected by the virus. It said one of the virus’s receptors seemed to be absent in the Amish and in Ashkenazi Jews and theorized that genetic factors might increase covid-19 severity.

Five months later, Kennedy invoked the study and insisted he was right: “I can understand why people were disturbed by those remarks. They certainly weren’t antisemitic. … I was talking about a true study, an NIH-funded study.”

“I wish I hadn’t said them, but, you know, what I said was true.”

Kennedy answered using scientific terms (“furin cleave,” “ACE2 receptor”), but he ignored explanations found in the study. He didn’t account for how the original virus has evolved since 2020, or how the study emphasized these potential mutations were rare and would have little to no public health impact.

Public health experts say that racial disparities in covid-19 infection and mortality — in the U.S., Black and Hispanic people often faced more severe covid-19 outcomes — resulted from social and economic inequities, not genetics.

Kennedy says “circumstantial evidence” is enough.

Antidepressants are linked to school shootings, he told listeners on a livestream hosted by Elon Musk. The government should have begun studying the issue years ago, he said, because “there’s tremendous circumstantial evidence that those, like SSRIs and benzos and other drugs, are doing this.”

Experts in psychiatry have told PolitiFact and other fact-checkers that there is no causal relationship between antidepressants and shootings. With 13% of the adult population using antidepressants, experts say that if the link were true they would expect higher rates of violence. Also, the available data on U.S. school shootings shows most shooters were not using psychiatric medicines, which have an anti-violence effect.

Conspiracy Theories, Consequences, and a Presidential Campaign

The anti-censorship candidate frames his first bid for public office as a response to “18 years” of being shunned for his views — partly by the government, but also by private companies.

“You’re protected so much from censorship if you’re running for president,” Kennedy told conservative Canadian podcaster and psychologist Jordan Peterson in June.

In June, Kennedy’s Instagram account was reinstated — with a verified badge noting he is a public figure. Meta’s rules on misinformation do not apply to active political candidates. (PolitiFact is a partner of Meta’s Third Party Fact-Checking Program, which seeks to reduce false content on the platform.)

In July, he was invited to testify before the Republican-led House Select Subcommittee on the Weaponization of the Federal Government. He repeated that he had “never been anti-vax,” and railed against the Biden White House for asking Twitter to remove his January 2021 tweet that said Baseball Hall of Famer Hank Aaron’s death was “part of a wave of suspicious deaths among elderly,” weeks after Aaron, 86, received a covid-19 vaccine. The medical examiner’s office said Aaron died from unrelated natural causes.

Throughout 2023, alternative media has embraced Kennedy. He has regularly appeared on podcasts such as Peterson’s, and has also participated in profiles by mainstream TV, online, and print sources.

“You’re like, ‘But you’re talking right now. I’m listening to you. I hear your words. You’re not being censored,’” said Whitney Phillips, an assistant professor in the School of Journalism and Communication at the University of Oregon who researches how news media covers conspiracy theories and their proponents. “But a person can believe they’re being censored because they’ve internalized that they’re going to be,” or they know making the claim will land with their audience.

Time will tell whether his message resonates with voters.

Kyle Kondik, managing editor of Sabato’s Crystal Ball at the University of Virginia Center for Politics, said Kennedy may be a “placeholder” for voters who are dissatisfied with Trump and Biden and will take a third option when offered by pollsters.

The only 2024 candidate whose favorability ratings are more positive than negative? It’s Kennedy, according to FiveThirtyEight. However, a much higher percentage of voters are unfamiliar with him than they are with Trump or Biden — about a quarter — and Kennedy’s favorability edge has decreased as his campaign has gone on.

Nevertheless, third-party candidates historically finish with a fraction of their polling, Kondik said, and voters will likely have more names and parties on their fall ballots, including philosopher Cornel West, physician Jill Stein, and a potential slate from the No Labels movement.

Kennedy was popular with conservative commentators before he became an independent, and he has avoided pointedly criticizing Trump, except on covid-19 lockdowns. When NBC News asked Kennedy in August what he thought of Trump’s 2020 election lies, Kennedy said he believed Trump lost, but that, in general, people who believe elections were stolen “should be listened to.” Kennedy is one of them. He still says that the 2004 presidential election was “stolen” from Kerry in favor of Republican George W. Bush, though it wasn’t.

American Values 2024 will spend up to $15 million to get Kennedy’s name on the ballot in 10 states including Arizona, California, Indiana, New York, and Texas. Those are five of the toughest states for ballot access, said Richard Winger, co-editor of Ballot Access News.

Four of Kennedy’s siblings called Kennedy’s decision to run as an independent “dangerous” and “perilous” to the nation. “Bobby might share the same name as our father, but he does not share the same values, vision or judgment,” the group wrote in a joint statement.

Kennedy brushes it off when asked, saying he has a large family and some members support him.

On her podcast, Weiss asked whether Kennedy worried his position on autism and vaccines would cloud his other positions and cost him votes. His answer ignored his history.

“Show me where I got it wrong,” he said, “and I’ll change.”

In a campaign constructed by lies, that might be the biggest one.

PolitiFact researcher Caryn Baird contributed to this report.​

PolitiFact’s source list can be found here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The Host

Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Even without covid dominating the headlines, 2023 was a busy year for health policy. The ever-rising cost of health care remained an issue plaguing patients and policymakers alike, while millions of Americans lost insurance coverage as states redetermined eligibility for their Medicaid programs in the wake of the public health emergency.

Meanwhile, women experiencing pregnancy complications continue to get caught up in the ongoing abortion debate, with both women and their doctors potentially facing prison time in some cases.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Sandhya Raman of CQ Roll Call, and Joanne Kenen of Johns Hopkins University and Politico Magazine.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• As the next election year fast approaches, the Biden administration is touting how much it has accomplished in health care. Whether the voting public is paying attention is a different story. Affordable Care Act enrollment has reached record levels due in part to expanded financial help available to pay premiums, and the administration is also pointing to its enforcement efforts to rein in high drug prices.
• The federal government is adding staff to go after “corporate greed” in health care, targeting in particular the fast-growing role of private equity. The complicated, opaque, and evolving nature of corporate ownership in the nation’s health system makes legislation and regulation a challenge. But increased interest and oversight could lead to a better understanding of the problems of and, eventually, remedies for a profit-focused system of health care.
• Concluding a year that saw many low-income Americans lose insurance coverage as states reviewed eligibility for everyone in the Medicaid program, there’s no shortage of access issues left to tackle. The Biden administration is urging states to take action to help millions of children regain coverage that was stripped from them.
• Also, many patients are all too familiar with the challenges of obtaining insurance approval for care. There is support in Congress to scrutinize and rein in the use of algorithms to deny care to Medicare Advantage patients based on broad comparisons rather than individual patient circumstances.
• And in abortion news, some conservative states are trying to block efforts to put abortion on the ballot next year — a tactic some used in the past against Medicaid expansion.
• This week in health misinformation is an ad from Florida’s All Family Pharmacy touting the benefits of ivermectin for treating covid-19. (Rigorous scientific studies have found that the antibacterial drug does not work against covid and should not be used for that purpose.)

Also this week, Rovner interviews KFF Health News’ Jordan Rau about his joint KFF Health News-New York Times series “Dying Broke.”

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: Business Insider’s “‘I Feel Conned Into Keeping This Baby,’” by Bethany Dawson, Louise Ridley, and Sarah Posner.

Joanne Kenen: The Trace’s “Chicago Shooting Survivors, in Their Own Words,” by Justin Agrelo.

Rachel Cohrs: ProPublica’s “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding if They’ll Pay for Care,” by Patrick Rucker, The Capitol Forum; and David Armstrong and Doris Burke, ProPublica.

Sandhya Raman: Roll Call’s “Mississippi Community Workers Battle Maternal Mortality Crisis,” by Lauren Clason.

Also mentioned in this week’s episode:

• Stat News’ “Humana Used Algorithm in ‘Fraudulent Scheme’ to Deny Care to Medicare Advantage Patients, Lawsuit Alleges,” by Casey Ross and Bob Herman.
• USA Today’s “Cigna Denied a Lung Transplant for a Cancer Patient. Insurer Now Says That Was an Eerror.’ By Ken Alltucker.
• Politico’s “Conservatives Move to Keep Abortion off the 2024 Ballot,” by Alice Miranda Ollstein and Megan Messerly.
• The New York Times’ “Why Democracy Hasn’t Settled the Abortion Question,” by Kate Zernike.

click to open the transcript

Transcript: 2023 Is a Wrap

KFF Health News’ ‘What the Health?’Episode Title: 2023 Is a WrapEpisode Number: 327Published: Dec. 21, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Dec. 21, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.

We are joined today via video conference by Joanne Kenen of the Johns Hopkins University and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Jordan Rau, co-author of a super scary series done with The New York Times about long-term care. It’s called “Dying Broke.” But first, this week’s news. I thought we would try something a little bit different this week. It just happened that most of this week’s news also illustrates themes that we’ve been following throughout the year. So we get a this-week update plus a little review of the last 12 months, since this is our last podcast of the year. I want to start with the theme of, “The Biden administration has gotten a ton of things done in health, but nobody seems to have noticed.”

We learned this week that, with a month still to go, Affordable Care Act plan sign-ups are already at historic highs, topping 15 million, thanks, at least in part, to extra premium subsidies that the administration helped get past this Congress and which Congress may or may not extend next year. The administration has also managed to score some wins in the battle against high drug prices, which is something that has eluded even previous Democratic administrations. Its latest effort is the unveiling of 48 prescription drugs officially on the naughty list — that’s my phrase, not theirs — for having raised their prices by more than inflation during the last quarter of this year, and whose manufacturers may now have to pay rebates. This is something in addition to the negotiations for the high-priced drugs, right, Rachel?

Cohrs: Yeah, this was just a routine announcement about the drugs that are expected to be charged rebates and drugmakers don’t have to pay immediately; I think they’re kind of pushing that a little further down the road, as to when they’ll actually invoice those rebates. But the announcement raised a question in my mind of — certainly they want to tout that they’re enforcing the law; that’s been a big theme of this year — but it brought up a question for me as to whether the law is working to deter price hikes if these companies are all doing it anyway, so just a thought.

Rovner: It is the first year.

Cohrs: It is. This started going into effect at the end of last year, so it’s been a little over a year, but this is assessed quarterly, so the list has grown as time has gone on. But just a thought. Certainly there’s time for things to play out differently, but that’s at least what we’ve seen so far.

Rovner: They could say, which they did this week, it’s like, Look, these are drugs because they raised the prices, they’re going to have to give back some of that money. At least in theory, they’re going to have to give back some of that money.

Cohrs: In Medicare.

Rovner: Right. In Medicare. Some of this is still in court though, right?

Cohrs: Yes. So I think at any moment, I think this has been a theme of this year and will be carrying into next year, that there are several lawsuits filed by drugmakers, by trade associations, that just have not been resolved yet, and I think some of the cases are close to being fully briefed. So we may see kind of initial court rulings as to whether the law as a whole is constitutional. It is worth noting that most of those lawsuits are solely challenging the negotiation piece of the law and not the inflation rebates, but this could fall apart at any moment. There could be a stay, and I expect that the first court ruling is not going to be the last. There’s going to be a long appeals process. Who knows how long it’s going to take, how high it will go, but I think there is just a lot of uncertainty around the law as a whole.

Rovner: So the administration gets to stand there and say, “We did something about drug prices,” and the drug companies get to stand there and say, “Not yet you didn’t.”

Cohrs: Exactly. Yes, and they can both be correct.

Rovner: That’s basically where we are.

Cohrs: Yes.

Rovner: That’s right. Well, meanwhile, in other news from this week and from this year, the Federal Trade Commission, the Department of Justice, and the Department of Health and Human Services are all adding staff to go after what Biden officials call “corporate greed” — that is their words — in health care. Apparently these new staffers are going to focus on private equity ownership of health care providers, something we have talked about a lot and so-called roll-ups, which we haven’t talked about as much. Somebody explain what a roll-up is please.

Kenen: Julie, why don’t you?

Rovner: OK. I guess I’m going to explain what a roll-up is. I finally learned what a roll-up is. When companies merge and they make a really big company, then the Federal Trade Commission gets to say, “Mmm, you may be too big, and that’s going to hurt trade.” What a roll-up is is when a big company goes and buys a bunch of little companies, so each one doesn’t make it too big, but together they become this enormous — either a hospital system or a nursing home system or something that, again, is not necessarily going to make free trade and price limits by trade happen. So this is something that we have been seeing all year. Can the government really do anything about this? This also feels like sort of a lot of, in theory, they can do these things and in practice it’s really hard.

Cohrs: I feel like what we’ve seen in this space — I think my colleague Brittany wrote about kind of this move — is that the corporate structures around these entities are so complicated. Is it going to discourage companies from doing anything by hiring a couple people? Probably not. But I think the people power behind understanding how these structures work can lay the groundwork for future steps on understanding the landscape, understanding the tactics, and what we see, at least on the congressional side, is that a lot of times Congress is working 10 years behind some of the tactics that these companies are using to build market power and influence prices. So I think the more people power, the better, in terms of understanding what the most current tactics are, but it doesn’t seem like this will have significant immediate difference on these practices.

Kenen: I think that the gap between where the government is and where the industry is is so enormous. I think the role of PE [private equity] in health care has grown so fast in a relatively short period of time. Was there a presence before? Yes, but it’s just really taken off. So I think that if those who advocate for greater oversight, if they could just get some transparency, that would be their win, at the moment. They cannot go in and stop private equity. They would like to get to the point where they could curb abuse or set parameters or however you want to phrase it, and different people would phrase it in different ways, but right now they don’t even really know what’s going on. So, even among the Democrats, there was a fight this year about whether to include transparency language between [the House committees on] Energy and Commerce and Ways and Means, and I don’t think that was ever resolved.

I think that’s part of the “Let’s do it in January” mess. But I think they just sort of want not only greater insight for the government, but also for the public: What is going on here and what are its implications? People who criticize private equity — the defenders can always find some examples of companies that are doing good things. They exist. We all know who the two or three companies we hear all the time are, but I think it’s a really enormous black box, and not only is it a black box, but it’s a black box that’s both growing and shifting, and getting into areas that we didn’t anticipate a few years ago, like ophthalmology. We’ve seen some of these studies this year about specialties that we didn’t think of as PE targets. So it’s a big catch-up for roll-up.

Rovner: Yeah, and I think it’s also another place that the administration — and I think the Trump administration tried to do this too. Republicans don’t love some of these things either. The public complains about high health care costs. They’re right; we have ridiculously high health care costs in this country, much higher than in other countries, and this is one of the reasons why, is that there are companies going in who are looking to simply do it to make a profit and they can go in and buy these things up and raise prices. That’s a lot of what we’re seeing and a lot of why people are so frustrated. I think at very least it at least shows them: It’s like, “See, this is what’s happening, and this is one of the reasons why you’re paying so much.”

Kenen: It’s also changing how providers and practitioners work, and how much autonomy they have and who they work for. It’s in an era when we have workforce shortages in some sectors and burnout and dissatisfaction. There are pockets at least, and again, we don’t really know how big, because we don’t have our arms around this, but there are pockets; at least we do know where the PE ownership and how they dictate practice is worsening these issues of burnout and dissatisfaction. I’m having dinner tomorrow night with a expert on health care antitrust, so if we were doing this next week, I would be so much smarter.

Rovner: We will be sure to call on you in January. Workforce burnout: This is another theme that we’ve talked about a lot this year.

Kenen: It’s getting into places you just wouldn’t think. I was talking to a physical therapist the other day and her firm has been bought up, and it’s changing the way she practices and her ability to make decisions and how often she’s allowed to see a patient.

Rovner: Yeah. Well, another continuing theme. Well, yet another big issue this year has been the so-called Medicaid unwinding, as states redetermine eligibility for the first time since the pandemic began. All year, we’ve been hearing stories about people who are still eligible being dropped from the rolls, either mistakenly or because they failed to file paperwork they may never have received. Among the more common mistakes that states are making is cutting off children’s coverage because their parents are no longer eligible, even though children are eligible for coverage up to much higher family incomes than their parents. So even if the parents aren’t eligible anymore, the children most likely are.

This week, the federal government reached out to the nine states that have the highest rates of discontinuing children’s coverage, including some pretty big states, like Texas and Florida, urging them to use shortcuts that could get those children’s insurance back. But this has been a push-and-pull effort all year between the states and the federal government, with the feds trying not to push too hard. At one point, they wouldn’t even tell us which states they were sort of chiding for taking too many people off too fast. And it feels like some of the states don’t really want to have all these people on Medicaid and they would just as soon drop them even if they might be eligible. Is that kind of where we are?

Raman: You can kind of look to see the tea leaves at what some of these states are. The states that the health secretary wrote to, that have 60% of the decline in the kids being disenrolled, align pretty well with the states that have not expanded Medicaid. So they’re already going to have much fewer people enrolled than states where the eligibility levels are a lot more generous. So it’s not surprising, and some of these states have been just a little bit more aggressive from the get-go or said that they wanted to do the eligibility redeterminations a lot faster than some of the other states that wanted to take the longer time, reevaluate different ways to see if someone was still eligible, whether they were maybe getting SNAP [Supplemental Nutrition Assistance Program] benefits or other things like that. So it’s not surprising.

Rovner: You mean do it more carefully.

Raman: Yeah, yeah, so I think that the letter is one step, but if those states are really going to take up implementing these other strategies to kind of decrease that drop-off, unclear, just because they have been pretty proactive about doing this in a quick process.

Rovner: I also noticed that the states that the HHS secretary wrote to kind of tracked with the states that didn’t expand Medicaid under the Affordable Care Act, but interestingly, that meant that there would’ve been fewer parents who were eligible in the first place. So there shouldn’t have been as many children cut off, because there weren’t as many parents who ever got onto Medicaid in those states, which is why it made me raise my eyebrows a little bit. Again, I think this is something that we shall continue to follow going into next year.

Kenen: But we should also point out that even the more pro-Medicaid, liberal states have not done a great job with unwinding. It’s been bumpy pretty much across the board. It’s been very problematic. It’s a clumsy process in a normal year, and trying to catch up on three years’ worth — this is a population where people’s income varies a lot. Are you just over the line? Are you just under the line? It’s fluctuating, the eligibility changes. But you try to do three years at once after all the chaos, with political undercurrents such as the nonexpansion states, and it makes it harder and messier.

Rovner: Which was predicted and came true. So yet another theme from this year is what I’m calling the managed care backlash redux. In the late 1990s, when lots of people were herded into managed care for the first time, there were lots of horror stories about patients being denied care, doctors being put through bureaucratic hoops, unqualified people making medical decisions. There’s a bipartisan bill that almost came to fruition in 2001 for what was called a patient’s bill of rights, but it was pushed off the agenda by 9/11. Most of the protections in that bill, however, were eventually included in the Affordable Care Act.

So now it’s 2023, and lo and behold, those same issues are back. A top issue for the American Medical Association this year is reining in prior authorization requirements, which require doctors to actually get permission before their patients can get recommended care. In one particularly painful story recently, a woman who’d been approved for a lung transplant had her surgery canceled by her insurer, literally on the way to the OR [operating room]. Later, and not coincidentally after a public outcry, the insurer, Cigna, called the whole thing, quote, “An error.” So she did finally get her lung transplant. Joanne, you covered the patient’s bill of rights fight with me back in the day. Most things that are being complained about now are now illegal. So why are we seeing so much of it again?

Kenen: Because there’s confusion about — patients don’t know what their rights are. All of us are savvy and all of us have had something in our own insurance that we don’t understand, or maybe we end up navigating it, but it’s not ever easy. Things like prior authorization — they say, “Well, we have to make sure people are getting appropriate care.” There is an element of truth there; there is overuse in American health care. There are people who get things they don’t really need or should try something less intrusive and less expensive first. So you have this genuine issue of overtreatment, back surgery being the classic example. Many people will do just as well with physical therapy and things like that than they will with an $80,000 operation. In fact, they might do better with the PT and not with the $80,000 operation.

So is there any validity to the idea of making sure people get appropriate care? Yes, but they say no to stuff that they should be covering. That’s clear, and that patients don’t always know what the right pathway is, because doctors also have incentives, or just the way they’re trained and the way they look at their — surgeons like to cut. It’s what they’re trained to do. They trained for years. So it’s really complicated, because there’s this collision between overuse and overtreatment and overcharging and all the over, over, over stuff that comes from the provider world and the no, no, no, no, no, no, no, “you can’t have that” stuff that comes from the insurer world, sometimes appropriately, but often not appropriately.

Rovner: Then I guess you load onto that the private equity and now the providers whose overlords are in it to make a profit. Then you have sort of private equity butting heads with insurance, which is one of the reasons I think we are sort of ending up here. But it certainly does feel very reminiscent of things that I’ve been through before. We’re seeing yet a similar story with Medicare Advantage, which is the private Medicare managed care program that now enrolls more than half of the Medicare population and makes lots of money for its private insurance companies that offer them.

Rachel, your colleagues wrote about a Humana algorithm that was being used to deny care after a patient had received it for, quote-unquote, “an average period of time, regardless of the patient’s condition,” meaning that if patient is sicker than average, they were saying, “Too bad, we’re only going to give this to you for 18 days because that’s what the average patient needs. If you need more, sorry about that.” So Congress is now trying to get into the act, trying to ensure that Medicare patients, who tend to vote in disproportionate numbers, get their needed care. The insurance industry is pushing back against the pushback. What’s the outlook for Congress actually getting something done on this issue? I’ve heard a lot of talk. I haven’t seen a whole lot of action.

Cohrs: Yeah, I mean certainly there has been talk — and just to point out that the Humana lawsuit is related to the UnitedHealth Group lawsuit that we saw earlier; it’s the same company making the algorithm. Bob and Casey’s reporting was just more focused on UnitedHealth Group, because they got internal documents showing the correlation between the quote-unquote “recommendation” of this algorithm and care decisions and denials and people being cut off from their rehab services. So I think certainly, I think there has been a lot of outcry. We’re seeing this play out in the legal system beforehand. This is an issue that we’ve discussed as well.

Are we going to regulate through the courts, because everything else is too slow? I think AI is certainly a hot topic on the Hill at the moment, and there is lawmaker interest, but this is just a very complicated space. Lawmakers, though they might try their best, are not the most tech-savvy people. These are very powerful interests that I would imagine would oppose some of these regulations if they were to actually materialize. So, there’s nothing imminent. Certainly if we see these lawsuits keep piling up, if we see discovery, if we see some more examples of this happening where other companies are using the algorithms as well, a groundswell — as you mentioned, Medicare patients are an important constituency — I think we could see some action, but it’s not looking imminent at this time.

Kenen: The other thing is there’s been a number of reports from a number of media outlets, Stat and others, that these algorithms are being used without any people to work with them. Like, OK, here’s this algorithm and it’s doing these batches of like, I’m going to say no to 50,000 people in 20 seconds. I’m exaggerating a little bit there, but yes, is there legitimate questions about what is appropriate treatment? Yes.

Or you hear these stories about people told, “You can’t have this drug; you have to have that drug at first,” but they would try that drug and it didn’t work for them, and there’s just no way of — the reason we have five or six similar drugs is that in some cases, those slight differences, people respond differently, mental health being a huge example of that, right? Where it could be very hard to get people on the right drugs, if person A doesn’t respond the same way as person B, even if they have the same condition. But 50,000, I don’t know if that’s the right number, but I think I remember reading one where it was 50,000 going through an algorithm. That’s not appropriate use; that’s mass production of saying no to some legitimate needs.

Rovner: Sandhya, I see you nodding there. I know that this is something that’s kind of bipartisan, right? Members of Congress get complaints about Medicare, which is something that they do, members of Congress, oversee. It is a government program, even though these are being run by private companies. I’m sort of wondering when this is going to reach a boiling point that’s going to require something to be done.

Raman: I think with some of these issues that we face that are kind of evergreen here, there has been a bipartisan push to find kind of ways to reform the prior authorization process. We’ve had people as different as Sen. Elizabeth Warren (D-Mass.) and Sen. Mike Crapo (R-Idaho) say they want reform, or Sen. James Lankford (R-Okla.) is very different from Rep. Pramila Jayapal (D-Wash.), and they’ve both said that, similar things that …

Rovner: Some of the most conservative and the most liberal members of Congress.

Raman: Yeah, so we’ve got a broad stretch, but I think at the same time, if you look at some of the other things that we have to deal with here — Congress is out for the year, but for next year, we are fairly behind in that we have a long list of things that need to be extended by mid-January. Then we have just funding all of HHS and a number of other government things by early February. So getting something from start to finish next year, which is also an election year, is going to be tough. So I think that there’s interest there, but I don’t know that getting something hashed out is going to be the easiest next year of all years.

Rovner: Yeah, I think it’s fair to say that Congress took an incomplete in most subjects this year. Well, finally this week, the topic that I think has been in every podcast this year, which is abortion. One of the threads that has wound through this year’s coverage is the strong support for abortion rights from voters, even in red and red-ish states. This year, Ohio voters affirmed a right to abortion, twice actually; there was a technical vote back in the summer. And in Virginia, Democrats flipped the legislature by running against Republican promises to impose a compromise 15-week ban, which apparently did not seem to be a compromise to most of the voters. That was after a half a dozen states voted in favor of the abortion rights position in the 2022 midterms. So this week we have a pair of stories, one from Politico and one from The New York Times, about how anti-abortion forces are working to keep future abortion-related questions off of the ballot in states where there’s still that possibility, including Florida, Missouri, Arizona, and Nevada.

One Republican Missouri lawmaker said that the right to life, quote, “should not be taken away because of a vote by a simple majority,” which frankly felt a little breathtaking to me. He has filed a bill that would require ballot measures to pass not just statewide, but with a majority in more than half of the state’s congressional districts. So basically in the really red parts of the states, a majority there would also have to vote for this. These people are getting very creative in their attempts to stop these votes from happening, maybe because they don’t think they can win them if it’s just straight up or down.

Raman: I think one thing to look at is kind of how we see some of these similar tactics in the same way that we saw with Medicaid. When Medicaid expansion started winning on different ballots, there were states that tried to put in measures to kind of tamp that down, saying, “You need a higher threshold,” and maybe that doesn’t pass, but still putting in different tactics to reduce the likelihood of that passing. I think that’s kind of what we’ve been seeing here, whether or not it’s Ohio trying to change its threshold, or we’ve had states say that even if something passed, let’s try to tear that back so that it doesn’t actually get implemented, or ahead of the ones for next year, let us find tactics to reduce the likelihood they’ll get the signatures to be on the ballot or reduce the likelihood of it passing by changing the language or pushing for challenging the language.

So there’s kind of what we saw right after the Dobbs decision, which was just a very “throw spaghetti at the wall, see what sticks,” just kind of ramp up things and see what will work, given that the last — all of the elections that we’ve had post-Dobbs have been in the favor of abortion rights. Even when we’ve tried to pass an anti-abortion measure, it’s not passed at the ballot. In the stories that you mentioned, there was another quote that stuck out to me, where they’d also mentioned that maybe this should not be subject to majority vote, I think in the Politico piece as well. So I think that’s something that is interesting that I haven’t really seen vocalized before, that this should be done in a different manner rather than this is how the majority of people feel one way or the other.

Rovner: Yeah, it felt so ironic because when in the Dobbs decision, Justice [Samuel] Alito wrote, “Well, now we’re turning this back to the states to be decided by their voters.” Well, here are their voters deciding, and it turns out the anti-abortion side don’t like the way the voters are voting, so they’re going to try to not have the voters vote, basically. We will see how this one all plays out. The other continuing story this year is women being prosecuted basically for bad pregnancy outcomes. Last week we talked about the case of Brittany Watts, an Ohio woman who was sent home from a hospital emergency room twice, had a miscarriage, and this week had formal charges filed against her for, quote, “abusing a corpse.” This case hasn’t gotten nearly the attention of the case of Kate Cox, the Texas woman whose fetus was diagnosed with fatal defects and who filed suit to be allowed to have an abortion.

She eventually had to go to another state, and that was even before the permission that had been granted by a lower-court judge was overturned by the Texas Supreme Court. It may be at least in part because Brittany Watts is black, or that she didn’t put herself out in public the way Kate Cox did, but this is a way that prosecutors can punish women even in states where abortion remains legal. Remember Ohio voted twice this year to keep abortion legal, and this wasn’t even an abortion; it was a miscarriage. The medical examiner determined that the fetus was already dead when it passed. What are the prosecutors trying to do here? We talk about chilling effects. This is kind of the ultimate chilling effect, right?

Raman: It really is, because here we have someone that was not, as you said, seeking an abortion. She miscarried, and I think that she was 21 weeks and five days pregnant, and then they had the 21-week cutoff. So it gets sent into really murky waters here because I’m not sure what they’re going for, kind of picking this case to prosecute and go with. We’ve had this happen before where people have self-managed or miscarried, and then they’ve ended up being prosecuted. But at this point, I’m not sure why they’re making a case out of this particular woman, kind of dragging this into the debate.

Rovner: Yeah, there was a famous case in Indiana — 2013, may have been even before that — a pregnant woman who tried to kill herself and failed to kill herself, but did kill her fetus, and she was put in jail for several years. There have been, at least there was sort of the question there, were you trying to self-abort at that point? But there was nothing here. This was a woman with a wanted pregnancy whose pregnancy ended via natural circumstances, which happens, I think we’ve discovered now, a lot more than people realize.

I think people don’t talk about unhappy pregnancy outcomes, so people don’t realize how common they actually are. But I wonder — and I’ve been saying this all year — again, if women are fearing prosecution, even women who want babies, they may fear getting pregnant. I’ve seen some stories about more permanent types of birth control happening because women don’t want to get pregnant, because they don’t want to end up in a place where their health is being risked or they’re trying to get health care they need and their doctor or they could be facing prison time.

Kenen: And in this case, she had gone to the hospital. It’s complicated. She went in and out of the hospital. She went to the ER; they sent her home. I think then once they sent her home another time, she left against medical advice, but she wasn’t trying to get an abortion. She was having pregnancy complications. It’s documented. She was in and out of medical care. Pregnancies can fail, and early, the first trimester, it’s a very high rate. It’s less common later on, but it still happens. There are times when an early miscarriage, you might not even know that it’s a miscarriage. It’s early. You don’t know what’s even going on with your own body, or you’re not certain. So she didn’t know what to do at home when she did miscarry. It seems very punitive. Did she behave in an absolutely ideal, textbook-perfect, the way you wish she might have? But she did what she could do at the time.

Rovner: Yeah, it’s hard to know what to do. Well, we will watch this case, I think, even though it’s not, as I say, it’s not getting quite the attention of some of the other cases. Our final this week in health information of 2023 goes to an ad that came to my email from the All Family Pharmacy in Boca Raton, Florida. The headline is “Miracle Drug Ivermectin for Covid-19 Could Save Lives,” and it claims that, quote, “a growing body of evidence from dozens of studies worldwide demonstrates ivermectin’s unique and highly potent ability to inhibit SARS-CoV-2 replication and aid in the recovery from covid-19.”

That sounded not quite right to me, so I looked up some of the studies that they cited and found that most had been thoroughly debunked, that ivermectin is not really good treatment for covid-19. I even found one study from an open-access journal that had to publish a correction, noting that two of its authors were paid consultants to ivermectin manufacturers, though they had failed to disclose that conflict. Meanwhile, if you don’t want ivermectin or hydroxychloroquine, which the All Family Pharmacy also sells, they will also sell you semaglutide, which is the scientific name of the hard-to-get weight loss drug Ozempic. And they say their price even includes a doctor consult. I will post the links in the show notes. All right, that is this week’s news. Now we will play my interview with Jordan Rau about his long-term care financing series. Then we’ll come back with our extra credits.

I am pleased to welcome to the podcast my KFF Health News colleague Jordan Rau. I asked Jordan to join us to talk about his latest project, “Dying Broke,” done in partnership with The New York Times. It’s about the growing expense of long-term care and the declining ability of Americans to pay for it. Jordan, welcome to “What the Health?”

Jordan Rau: Glad to be here, Julie.

Rovner: So I want you to start with the 30-second elevator pitch about what you found working on this, for two years?

Rau: Just about. The big-picture view is that when you’re elderly, if you need long-term care, by which we’re talking about nonmedical things, like personal aides, if you need help in your daily activities going to the bathroom or eating or such, or if you have a cognitive impairment like dementia, it’s exceedingly expensive, except if you are destitute. The private market solutions, which are long-term care insurance, really don’t work, and most people don’t hold it. The government solution, which is Medicaid, is only available to you once you’ve exhausted just about all of your assets and have very low income. And that’s led the vast majority of people out on their own financially to either rely on themselves or their family or other people to take up the burden. And that burden is significant for the children of older people.

Rovner: So it’s not just nursing home care that costs more than all but the richest can afford; assisted living and home care, which people assume are going to be a lot cheaper and that maybe their retirement savings will cover — they’re also increasingly out of reach. Why has the price of long-term care gone up so much faster than Americans’ retirement savings?

Rau: All of medical inflation has gone up enormously, but I think a lot of it is that there’s so little regulation on prices. There’s frankly no regulation on prices of assisted living, and you don’t have a large payer that can control prices. That’s one of the good things about Medicare, is that they set their own prices and that’s helped keep prices down. That’s why it’s less expensive for Medicare to send someone to a nursing home than for someone to pay out-of-pocket. But there’s none of that. So the prices have just gone where they’ve gone, and now you have a scarcity of workers as well. So that’s driving up wages.

Rovner: People who’ve been socking away money and thinking they’re going to be able to pay for this themselves get kind of a rude awakening when they need, and it’s not — as you say, it’s not even medical long-term care; it’s just help with activities of daily living.

Rau: Yeah, yeah, yeah. I think one of the problems is that people assume they have the best-case scenario when they’re envisioning their retirement. They’re going to be off golfing, they’re going to be playing around with their grandkids, they’re going to be taking trips. The fact is, you’re very likely — if you live well into your 80s and 90s, as many people do — to not be able to live independently anymore, to need help with at least a little bit of things, and in worst-case scenario everything. People just don’t expect that that’s going to happen.

Rovner: So why do so many Americans still not know that Medicare doesn’t pay for long-term care? I feel like I’ve been saying this since 1980-something.

Rau: I wonder how much of it would’ve been different if they had decided to name Medicaid something that isn’t so close to Medicare. Maybe that would’ve helped, but realistically, everyone I think has a sense. Well, first of all, who’s paying attention to this stuff when you’re in your 30s and 40s, right? You’re not thinking about what’s going to happen to you in the 60s. And then I think that people just don’t expect that this is going to happen to them, and Medicare has a well-earned reputation as being pretty comprehensive. It doesn’t cover certain things, and there is a “donut hole” situation, so you’ve got to get supplemental. But people know that for the most part, it’s covered. And people don’t understand that long-term care, the nonmedical side, is — not just here, everywhere — it’s the backwater of health care. It’s not even considered health care in some ways.

So you just assume — I mean, I would assume, right, if Medicare is going to cover my heart transplant, why would I not think that it’s going to cover someone to come to my house a couple hours a day to help me with stuff or to put me in an assisted living facility if it covers nursing home care? It’s such a complicated, Byzantine system. You and I, we’ve been doing this probably combined, well, I don’t want to say how long, but it’s been a long time, and it’s hard for us to untangle exactly what is covered and what overlaps with what and what are the eligibility rules. So to expect a regular person, who isn’t paid to do this 50 hours a week, to know it is highly unrealistic.

Rovner: Yeah, and I was going to say the fact that Medicare actually has a home care benefit and it has a nursing home benefit; they’re just super limited. I think that sort of adds to the confusion too, doesn’t it?

Rau: Yeah. Well, even Medicare is confused about its home care benefit, right? There’s the whole Jimmo case and a whole debate about what you need to qualify for it.

Rovner: So listeners will know that long-term care and our country’s complete lack of a long-term care policy is a pet issue of mine and has been since I started writing about it in 1986. It isn’t like the government hasn’t tried to do something. There was the ill-fated Medicare Catastrophic Coverage Act in 1988 that ended up getting repealed. There were efforts to subsidize private long-term care insurance in the 1990s that didn’t really go anywhere, and there was the CLASS [Community Living Assistance Services and Supports] Act that was briefly part of the Affordable Care Act when it passed in 2010, only to be abandoned as financially unfeasible. Why has this been such a hard issue to address from a policy point of view?

Rau: The one-word answer obviously is money. It’s incredibly expensive. So to have that type of lift, it would be to expand either Medicaid or Medicare or to create a new program; would be inordinately expensive. But beyond that, I think basically, to do this, you either have to tag on something to one of those existing programs, which is a major expansion, or you have to have a mandatory insurance program. It could be a public one; it can be a private one. I think that it’s hard because it’s not universal. Auto insurance — everybody drives, right? So if you say, OK, you all know you’re going to drive, and people know like, Oh, I may get into an accident. So then you have a functioning insurance market.

Health insurance, sort of the same thing. Everyone knows that they’re going to need health insurance maybe next year. So that’s an easier sell. Even that, right, with the Affordable Care Act — that passed by just one vote. That was a heavy lift. So here you’re saying, here’s something that you may need but you very well may never tap. By the way, we want you to pay for it now or buy into it now, and it’s not relevant for your life until 30 years. I just think that’s a hard sell politically to the population, to the political system. It’s a hard sell.

Rovner: So if there was just one message that you hope people take away after reading this exhaustive series, what do you think it should be?

Rau: Printing the series out and frame it and put it on your wall would be my main message. But I would say that this stuff is so unpredictable that you really have to have some flexibility in your expectations and planning, because you can’t plan to not get early-onset dementia. You can’t plan to need help. So I think that you need to — people obviously need to have as much of a cash cushion as they can, and they need to bone up on this before it’s a crisis, because by the time it’s a crisis — and this is a problem, right, with health insurance too. By the time you’ve got the emotional and health issues, to throw on top of it a bureaucratic sort of financial issue is just so hard for most people to juggle. So there isn’t an easy solution, but it is important for people to realize that this is as much of a risk as smashing your car into a telephone pole and that you cannot have one answer.

Your answer cannot be like, “Oh, well I’m just going to stay in my house, because you may not be able to stay in your house.” Or your answer can’t be, “Well, I’m going to go into a fancy assisted living facility with a great chandelier and great food,” because unless you save an inordinate amount of money, even if you go in there, you may not be able to afford to stay there. So it’s really a recognition that you can’t really concretely plan for this, but you may very well not be able to live independently if you are lucky enough to live into your eighth and ninth decade.

Rovner: Great. Jordan Rau, anything I didn’t ask?

Rau: Never. Never, Julie.

Rovner: Jordan Rau, thank you so much for joining us.

Rau: Great to see you.

Rovner: OK. We are back, and it’s time for our last extra credit segment of the year. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Rachel, why don’t you go first this week?

Cohrs: Sure. The story I chose is in ProPublica. The headline is “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding If They’ll Pay for Care,” by Patrick Rucker at The Capitol Forum and David Armstrong and Doris Burke at ProPublica. I think this article very much fits into the larger theme we were talking about earlier about insurance denials. This was pretty shocking still to me, of these instances of doctors with big malpractice settlements that had been disciplined by medical boards failing up essentially and getting jobs. If they can’t practice anymore, then they’re getting jobs in insurance companies instead, deciding whether a much larger volume of patients get care. So I think it was just a fascinating, really well-done investigation. It sounded like it was really difficult to match up all the records with the lawsuits and the settlements, and there aren’t necessarily databases that exist of what doctors work for insurance companies. So it was just really well done and just a really important space that we’ll continue to talk about.

Kenen: That was a great piece. These doctors are making $300,000 to $400,000 a year, these people who failed up, as Rachel just put it. Yeah.

Rovner: Yeah. That’s the perfect phrase. Sandhya.

Raman: My extra credit this week is called “Mississippi Community Workers Battle Maternal Mortality Crisis,” and it’s from my colleague at Roll Call Lauren Clason. This story also illustrates a combination of themes from this year. It touches on some of the maternal health inequities, the racial inequities, and rural health inequities, and how politics kind of comes into all of that. Mississippi Black women die at a rate four times higher than white women, and the state also leads in infant mortality rates nationwide. At the same time, it’s also a nonexpansion state for Medicaid. So Lauren went to Mississippi to look at some of the community and state-led groups that are trying to reduce these inequities that are caused by the different racial, socioeconomic, and access factors that are happening at the same time that an increasing number of hospitals are closing in the state.

Rovner: Also another really good story. Joanne?

Kenen: The theme of the day is yearlong, or decades-long in some cases, but ongoing health stories that have dominated the year. Another one that we didn’t touch on today but clearly is an ongoing multiyear health crisis is gun violence, which is a public health problem as well as a criminal justice problem. The Trace did a fantastic end-of-year project by Justin Agrelo. It’s called “Chicago Shooting Survivors, in Their Own Words.” They worked with both people who had survived shootings as well as people who had lost family members to shootings, and they worked with them about how to write and tell stories.

These five stories are in these people’s own words, and it was partnered with a bunch of other Chicago-based publications. They’re very powerful. In the introduction, they wrote that the Chicago media has been really good about trying to cover every homicide but that these people end up being defined by their death, not everything else about their life. These essays, they didn’t just talk about grief, which is obviously a huge — grief and trauma — but also the lives, not just the deaths. It’s really, really worth spending some time with.

Rovner: Yeah, and we haven’t talked as much as we probably should have about gun violence, but we will put that on the list for 2024. My extra credit this week is from Business Insider. It’s called “I Feel Conned Into Keeping This Baby.” It’s by Bethany Dawson, Louise Ridley, and Sarah Posner. It’s about an anti-abortion group that promised pregnant women financial support for their babies if they agreed not to get an abortion. But even though the women signed contracts, the group, called Let Them Live, did not provide the aid promised. Apparently they promised more money than they could raise in contributions. Now, I have heard of pregnancy crisis centers promising things like diapers and formula, but this group said it would help with groceries and rent and other significant expenses until it didn’t. Apparently the small print in the contract said the benefits could be reduced or stopped at any time. This was supposed to help answer the criticism that anti-abortion groups don’t actually care about the women, particularly after they give birth, except maybe promising things that you can’t deliver isn’t the best way to do that.

OK. That is our show for this week and for this year. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Sandhya, where are you on social media these days?

Raman: I’m @SandhyaWrites on both X and Bluesky.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X, @rachelcohrsreporter on Threads.

Rovner: Joanne.

Kenen: @joannekenen1 on Threads. I’m occasionally on X — or, as you all know, I’ve been calling it Y — @JoanneKenen.

Rovner: We will be back in your feed in 2024. Until then, have a great holiday season, and be healthy.

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Thousands of readers reacted to the articles in the “Dying Broke” series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.

In more than 4,200 comments, readers shared their struggles in caring for spouses, older parents, and grandparents. They expressed anxieties about getting older themselves and needing help to stay at home or in institutions like nursing homes or assisted living facilities.

Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.

Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.

“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller in Placitas, New Mexico, commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”

“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.

Other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.

What Other Nations Provide

Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.

Marsha Moyer, 75, a retired teaching assistant in Memphis, Tennessee, said she spent 12 years as a caregiver for her parents in San Diego County and an additional six for her husband. While they had advantages many don’t, Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”

By contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career, and helping her healthy but very old mother,” Moyer said. “She could have both. I had to choose.”

Birgit Rosenberg, 58, a software developer in Southampton, Pennsylvania, said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”

Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650-a-month long-term care policy because care is so much more affordable south of the border. Brad, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.

“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, they address her as Mom or Barbarita, little Barbara.”

Insurance Policies Debated

Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.

“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer in Fancy Gap, Virginia.

Derek Sippel, 47, a registered nurse in Naples, Florida, cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit[s], but it makes me feel better knowing that I have it if I need it,” he said in his comment. He said he could not make that kind of money by investing on his own.

“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”

Pleas for More Immigrant Workers

One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive in Woodside, California, said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello, people — we need more immigrants! Who do you think does most of this work?”

Victoria Raab, 67, a retired copy editor in New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”

“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Raab said.

Federal Fixes Sought

Other readers called for the federal government to create a comprehensive, national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.

“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care.”

John Reeder, 76, a retired federal economist in Arlington, Virginia, called for a federal single-payer system “from birth to senior care in which we all pay and profit-making [is] removed.”

Other readers, however, argued that people needed to take more responsibility by preparing for the expense of old age.

Mark Dennen, 69, in West Harwich, Massachusetts, said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding, “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”

Questioning the Value of Life-Prolonging Procedures

A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.

Thomas Thuene, 60, a consultant in Boston’s Roslindale neighborhood, described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”

Joan Chambers, 69, an architectural draftsperson in Southold, New York, said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.

“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years, but we have to stop this cruelty.

“We have to remember that even though we are grateful to our health care professionals, they are not our friends. They are our employees and we can say no.”

One physician, James Sullivan, 64, in Cataumet, a neighborhood of Bourne, Massachusetts, said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.

Considering ‘Assisted Dying’

Others went further, declaring they would rather arrange for their own deaths than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen Clodfelter, 65, a library assistant in St. Louis. “When the money runs out, I will take myself out of the picture.” Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”

Some suggested that medically assisted death should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, of Sunnyvale, California, said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Related Links

• Police Blame Some Deaths on ‘Excited Delirium.’ ER Docs Consider Pulling the Plug on the Term.

  Oct 2, 2023

• California Bans Controversial ‘Excited Delirium’ Diagnosis

  Oct 12, 2023

• Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway.

  Oct 16, 2023

Quinto, 30, had been pinned on the ground for at least 90 seconds by police in California and stopped breathing. He died three days later.

Now his relatives are asking a federal judge to exclude any testimony about “excited delirium” in their wrongful death case against the city of Antioch. Their case may be stronger than ever.

Their push comes at the end of a pivotal year for the long-standing, nationwide effort to discard the use of excited delirium in official proceedings. Over the past 40 years, the discredited, racially biased theory has been used to explain away police culpability for many in-custody deaths. But in October, the American College of Emergency Physicians disavowed a key paper that seemingly gave it scientific legitimacy, and the College of American Pathologists said it should no longer be cited as a cause of death.

That same month, California’s Democratic Gov. Gavin Newsom signed the nation’s first law to ban the term “excited delirium” as a diagnosis and cause of death on death certificates, autopsy reports, and police reports. Legislators in other states are expected to consider similar bills next year, and some law enforcement agencies and training organizations have dropped references to excited delirium from their policy manuals and pulled back from training police on the debunked theory.

Despite all that momentum, families, attorneys, policing experts, and doctors say much remains to be done to correct the mistakes of the past, to ensure justice in ongoing trials, and to prevent avoidable deaths in the future. But after years of fighting, they’re heartened to see any movement at all.

“This entire thing, it’s a nightmare,” said Bella Collins, Angelo’s sister. “But there are silver linings everywhere, and I feel so fortunate to be able to see change happening.”

Ultimately, the campaign against excited delirium seeks to transform the way police deal with people undergoing mental health crises.

“This is really about saving lives,” said Joanna Naples-Mitchell, an attorney who worked on an influential Physicians for Human Rights review of excited delirium.

Changing Law Enforcement Training

The use of the term “excited delirium syndrome” became pervasive after the American College of Emergency Physicians published a white paper on it in 2009. It proposed that individuals in a mental health crisis, often under the influence of drugs or alcohol, can exhibit superhuman strength as police try to control them, and then die suddenly from the condition, not the police response.

The ACEP white paper was significant in catalyzing police training and policy, said Marc Krupanski, director of criminal justice and policing at Arnold Ventures, one of the largest nonprofit funders of criminal justice policy. The theory contributed to deaths, he said, because it encouraged officers to apply greater force rather than call medical professionals when they saw people in aggressive states.

After George Floyd’s 2020 death, which officers blamed on excited delirium, the American Medical Association and the American Psychiatric Association formally rejected it as a medical condition. Then came disavowals from the National Association of Medical Examiners and the emergency physicians’ and pathologists’ groups this year.

The moves by medical societies to renounce the term have already had tangible, albeit limited, effects. In November, Lexipol, a training organization used by thousands of public safety agencies in the U.S., reiterated its earlier move away from excited delirium, citing the California law and ACEP’s retraction of the 2009 white paper.

Lexipol now guides officers to rely on what they can observe, and not to guess at a person’s mental status or medical condition, said Mike Ranalli, a lawyer and police trainer with the Texas-based group. “If somebody appears to be in distress, just get the EMS,” he said, referring to emergency medical services.

Patrick Caceres, a senior investigator at the Bay Area Rapid Transit’s Office of the Independent Police Auditor, successfully pushed to remove excited delirium from the BART Police Department’s policy manual after learning about Quinto’s death in 2020 and seeing the American Medical Association’s rejection of it the following year.

Caceres fears that rooting out the concept — not just the term — more broadly will take time in a country where law enforcement is spread across roughly 18,000 agencies governed by independent police chiefs or sheriffs.

“The kinds of training and the kinds of conversations that need to happen, we’re still a long way away from that,” said Caceres.

In Tacoma, Washington, where three police officers have been charged with the 2020 death of Manuel Ellis, The Seattle Times reported that local first responders testified as recently as October that they still “embrace” the concept.

But in Colorado, the state’s Peace Officer Standards and Training board ruled on Dec. 1 to drop excited delirium training for new law enforcement officers, KUSA-TV reported.

And two Colorado lawmakers, Democratic state Reps. Judy Amabile and Leslie Herod, have drafted a bill for the 2024 legislative session banning excited delirium from other police and EMS training and prohibiting coroners from citing it as a cause of death.

“This idea that it gives you superhuman strength causes the police to think they should respond in a way that is often completely inappropriate for what’s actually happening,” Amabile said. “It just seems obvious that we should stop doing that.”

She would like police to focus more on de-escalation tactics, and make sure 911 calls for people in mental health crisis are routed to behavioral health professionals who are part of crisis intervention teams.

Taking ‘Excited Delirium’ Out of the Equation

As the Quinto family seeks justice in the death of the 30-year-old Navy veteran, they are hopeful the new refutations of excited delirium will bolster their wrongful death lawsuit against the city of Antioch. On the other side, defense lawyers have argued that jurors should hear testimony about the theory.

On Oct. 26, the family cited both the new California law and the ACEP rebuke of the diagnosis when it asked a U.S. District Court judge in California to exclude witness testimony and evidence related to excited delirium, saying it “cannot be accepted as a scientifically valid diagnosis having anything to do with Quinto’s death.”

“A defense based on BS can succeed,” family attorney Ben Nisenbaum said. “It can succeed by giving jurors an excuse to give the cops a way out of this.”

Meanwhile, advocates are calling for a reexamination of autopsies of those who died in law enforcement custody, and families are fighting to change death certificates that blame excited delirium.

The Maryland attorney general’s office is conducting an audit of autopsies under the tenure of former chief medical examiner David Fowler, who has attributed various deaths to excited delirium. But that’s just one state reviewing a subset of its in-custody deaths.

The family of Alexander Rios, 28, reached a $4 million settlement with Richland County, Ohio, in 2021 after jail officers piled on Rios and shocked him until he turned blue and limp in September 2019. During a criminal trial against one of the officers that ended in a mistrial this November, the pathologist who helped conduct Rios’ autopsy testified that her supervisor pressured her to list “excited delirium” as the cause of death even though she didn’t agree. Still, excited delirium remains his official cause of death.

The county refused to update the record, so his relatives are suing to force a change to his official cause of death. A trial is set for May.

Changing the death certificate will be a form of justice, but it won’t undo the damage his death has caused, said Don Mould, Rios’ stepfather, who is now helping to raise one of Rios’ three children.

“Here is a kid that’s life is upside down,” he said. “No one should go to jail and walk in and not be able to walk out.”

In some cases, death certificates may be hard to refile. Quinto’s family has asked a state judge to throw out the coroner’s findings about his 2020 death. But the California law, which takes effect in January and bans excited delirium on death certificates, cannot be applied retroactively, said Contra Costa County Counsel Thomas Geiger in a court filing.

And, despite the 2023 disavowals by the main medical examiners’ and pathologists’ groups, excited delirium — or a similar explanation — could still show up on future autopsy reports outside California. No single group has authority over the thousands of individual medical examiners and coroners, some of whom work closely with law enforcement officials. The system for determining a cause of death is deeply disjointed and chronically underfunded.

“One of the unfortunate things, at least within forensic pathology, is that many things are very piecemeal,” said Anna Tart, a member of the Forensic Pathology Committee of the College of American Pathologists. She said that CAP plans to educate members through conferences and webinars but won’t discipline members who continue to use the term.

Justin Feldman, principal research scientist with the Center for Policing Equity, said that medical examiners need even more pressure and oversight to ensure that they don’t find other ways to attribute deaths caused by police restraint to something else.

Only a minority of deaths in police custody now cite excited delirium, he said. Instead, many deaths are being blamed on stimulants, even though fatal cocaine or methamphetamine overdoses are rare in the absence of opioids.

Yet advocates are hopeful that this year marks enough of a turning point that alternative terms will have less traction.

The California law and ACEP decision take “a huge piece of junk science out of the equation,” said Julia Sherwin, a California civil rights attorney who co-authored the Physicians for Human Rights report.

Sherwin is representing the family of Mario Gonzalez, who died in police custody in 2021, in a lawsuit against the city of Alameda, California. Excited delirium doesn’t appear on Gonzalez’s death certificate, but medical experts testifying for the officers who restrained him cited the theory in depositions. 

She said she plans to file a motion excluding the testimony about excited delirium in that upcoming case and similar motions in all the restraint-asphyxia cases she handles.

“And, in every case, lawyers around the country should be doing that,” Sherwin said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

With other GOP presidential candidates following Donald Trump’s lead in calling for an end to the Affordable Care Act, Democrats are jumping on an issue they think will favor them in the 2024 elections. The Biden administration almost immediately rolled out a controversial proposal that could dramatically decrease the price of drugs developed with federally funded research dollars. The drug industry and the business community at large are vehemently opposed to the proposal, but it is likely to be popular with voters.

Meanwhile, the Supreme Court hears arguments in a case to decide whether the Sackler family should be able to shield billions of dollars taken from its bankrupt drug company, Purdue Pharma, from further lawsuits regarding the company’s highly addictive drug OxyContin.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Alice Miranda Ollstein of Politico, and Rachana Pradhan of KFF Health News.

Panelists

Anna Edney
Bloomberg

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Alice Miranda Ollstein
Politico

@AliceOllstein

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Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories

Among the takeaways from this week’s episode:

• The ACA may end up back on the proverbial chopping block if Trump is reelected. But as many in both parties know, it is unlikely to be a winning political strategy for Republicans. ACA enrollment numbers are high, as is the law’s popularity, and years after a failed effort during Trump’s presidency, Republicans still have not unified around a proposal to replace it.
• Democrats are eager to capitalize on the revival of “repeal and replace.” This week, the Biden administration announced plans to exercise so-called “march-in rights,” which it argues allow the government to seize certain patent-protected drugs whose prices have gotten too high and open them to price competition. The plan, once largely embraced by progressives, could give President Joe Biden another opportunity to claim his administration has proven more effective than Trump’s heading into the 2024 election.
• The Senate voted to approve more than 400 military promotions this week, effectively ending the 10-month blockade by Republican Sen. Tommy Tuberville of Alabama over a Pentagon policy that helps service members travel to obtain abortions. At the state level, the Texas courts are considering cases over its exceptions to the state’s abortion ban, while in Ohio, a woman who miscarried after being sent home from the hospital is facing criminal charges.
• Meanwhile, the Supreme Court soon could rule on whether EMTALA, or the Emergency Medical Treatment and Active Labor Act, requires doctors to perform abortions in emergencies. And justices are also considering whether to allow a settlement deal to move forward that does not hold the Sacker family accountable for the harm caused by opioids.
• “This Week in Medical Misinformation” highlights a lawsuit filed by Texas Attorney General Ken Paxton accusing Pfizer of failing to end the covid-19 pandemic with its vaccine.

Also this week, Rovner interviews Dan Weissmann, host of KFF Health News’ sister podcast, “An Arm and a Leg,” about his investigation into hospitals suing their patients for unpaid medical bills.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Wisconsin State Journal’s “Dane, Milwaukee Counties Stop Making Unwed Fathers Pay for Medicaid Birth Costs,” by David Wahlberg.  

Anna Edney: Bloomberg News’ “Tallying the Best Stats on US Gun Violence Is Trauma of Its Own,” by Madison Muller.  

Alice Miranda Ollstein: Stat’s “New Abortion Restrictions Pose a Serious Threat to Fetal Surgery,” by Francois I. Luks, Tippi Mackenzie, and Thomas F. Tracy Jr. 

Rachana Pradhan: KFF Health News’ “Patients Expected Profemur Artificial Hips to Last. Then They Snapped in Half,” by Brett Kelman and Anna Werner, CBS News.

Also mentioned in this week’s episode:

• Bloomberg News’ “The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is in Its Way,” by Anna Edney and Riley Griffin.
• Ars Technica’s “Texas Sues Pfizer With COVID Anti-Fax Argument That Is Pure Stupid,” by Beth Mole.

Click to open the transcript

Transcript: Democrats See Opportunity in GOP Threats to Repeal Health Law 

KFF Health News’ ‘What the Health?’Episode Title: Democrats See Opportunity in GOP Threats to Repeal Health LawEpisode Number: 325Published: Dec. 7, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest reporters in Washington. We’re taping this week on Thursday, Dec. 7, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Anna Edney of Bloomberg News.

Anna Edney: Hello.

Rovner: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Good morning, Julie.

Rovner: Later in this episode we’ll have my interview with Dan Weissmann, host of our sister podcast, “An Arm and a Leg.” Dan’s been working on a very cool two-part episode about hospitals suing their patients that he will explain. But first, this week’s news. So now that former President [Donald] Trump has raised the possibility of revisiting a repeal of the Affordable Care Act, all of the other Republican presidential wannabes are adding their two cents.

Florida Gov. Ron DeSantis says that rather than repeal and replace the health law, he would “repeal and supersede,” whatever that means. Nikki Haley has been talking up her anti-ACA bona fides in New Hampshire, and the leading Republican candidate for Senate in Montana is calling for a return to full health care privatization, which would mean getting rid of not only the Affordable Care Act, but also Medicare and Medicaid.

But the Affordable Care Act is more popular than ever, at least judging from this year’s still very brisk open enrollment signups. Alice, you wrote an entire story about how the ACA of 2023 is not the ACA of 2017, the last time Republicans took a serious run at it. How much harder would it be to repeal now?

Ollstein: It would be a lot harder. So, not only have a bunch of red and purple states expanded Medicaid since Republicans took their last swing at the law — meaning that a bunch more constituents in those states are getting coverage they weren’t getting before and might be upset if it was threatened by a repeal — but also just non-Medicaid enrollment is up as well, fueled in large part by all the new subsidies that were implemented over the last few years. And that’s true even in states that resisted expansions.

DeSantis’ Florida, for instance, has the highest exchange enrollment in the country. There’s just a lot more people with a lot more invested in maintaining the program. You have that higher enrollment, you have the higher popularity, and we still haven’t seen a real replacement or “supersede” plan, or whatever they want to call it. And folks I talk to on Capitol Hill, Republican lawmakers, even those that were pretty involved last time, do not think such a plan is coming.

Rovner: It did get asked about at the “last” Republican presidential primary debate last night, and there was an awful lot of hemming and hawing about greedy drug companies and greedy insurance companies, and I heard exactly nothing about any kind of plan. Has anybody else seen any sign of something that Republicans would actually do if they got rid of the Affordable Care Act?

Pradhan: No. There was a time, immediately after the ACA’s passage, that health care was a winning political issue for Republicans, right? It was multiple election cycles that they capitalized on Obamacare and used it to regain House majorities, Senate majorities, and the presidency eventually. But that has not been true for multiple years now. And I think they know that. I think establishment Republicans know that health care is not a winning issue for the party, which is why Democrats are so eager to capitalize on this reopening of ACA repeal, if you will.

Rovner: What a perfect segue, because I was going to say the Biden administration is wasting no time jumping back into health care with both feet, trying to capitalize on what it sees as a gigantic Republican misstep. Just this morning, they are rolling out new proposals aimed at further lowering prescription drug prices, and to highlight the fact that they’ve actually gotten somewhere in some lowering of prescription drug prices.

Now they would like to make it easier to use government “march-in rights,” which would let the government basically tell prescription drug companies, “You’re going to lower your price because we’re going to let other people compete against you, despite your patent.” They’re also doing, and I will use their words, a cross-government public inquiry into corporate greed in health care. Now, some of these things are super controversial. I mean, the march-in rights even before this was unveiled, we saw the drug industry complaining against. But they could also have a real impact if they did some of this, right? Anna, you’ve watched the drug price issue.

Edney: Yeah, I think they definitely could have an impact. This is one of those situations with the march-in rights where we don’t have any clue on where or how exactly, because we haven’t been told that this drug or this class of drugs are kind of what we’re aiming at at this point. It sounds like maybe there’s a little bit more of the plan to be baked, but I am sure there are a lot of progressives, particularly, who had pushed for this that, over the years, who are very excited to even see it mentioned and moving in some sort of way, which hasn’t really happened before.

And, clearly, the Biden administration wants to, like you said, capitalize on health care being part of the campaign. And they’ve done a lot on drug prices, at least a lot in the sense of what can be done. There’s negotiation in Medicare now for some drugs. They kept insulin for Medicare as well. So this is just another step they can say, “We’re doing something else,” and we’d have to see down the line exactly where they’d even plan to use it.

And, of course, as pharma always does, they said that this will hurt innovation and we won’t get any drugs. Not that things have been in place that long, but, clearly, we haven’t seen that so far.

Rovner: Yes, that is always their excuse. I feel like this is one of those times where it doesn’t even matter if any of these things get done, they’re putting them out there just to keep the debate going. This is obviously ground that the Biden campaign would love to campaign on — rather than talking about the economy that makes people mostly unhappy. I assume we’ll be seeing more of this.

Edney: Yeah. Your food prices and other things are very high right now. But if they can talk about getting drug prices lower, that’s a totally different thing that they can point to.

Ollstein: And it’s an easy way to draw the contrast. For people who might be apathetic and think, “Oh, it doesn’t matter who wins the presidential election,” this is an area where the Biden administration can credibly claim, based on what Trump recently said, “This is what’s at stake. This is the difference between my opponent and me. The health care of millions is on the line,” which has been a winning message in past elections.

And what’s been really striking to me is that even talking to a bunch of conservatives now, even though they don’t like the Affordable Care Act, they even are starting to argue that full-scale repeal and replace — now that it’s the status quo — that’s not even a conservative proposal.

They’re saying that it’s more conservative to propose smaller changes that chip around the edges and create some alternatives, but mainly leave it in place, which I think is really interesting, because for so long the litmus test was: Are you for full repeal, root and branch? And we’re just not really hearing that much anymore — except from Trump!

Rovner: The difficulty from the beginning is that the basis of the ACA was a Republican proposal. I mean, they were defanged from the start. It’s been very hard for them to come up with a replacement. What it already is is what Mitt Romney did in Massachusetts. Well, let us turn to the other big issue that Democrats hope will be this coming election year, and that’s abortion, where there was lots of news this week.

We will start with the fact that the 10-month blockade of military promotions by Alabama Republican Sen. Tommy Tuberville is over. Well, mostly over. On Tuesday, the Senate approved by voice vote more than 400 promotions that Tuberville had held up, with only a few four-star nominees still in question. Tuberville’s protests had angered not just Senate Democrats and the Biden administration, who said it was threatening national security, but increasingly his own Senate Republican colleagues.

Tuberville said he was holding up the nominations to protest the Biden administration’s policy of allowing active-duty military members and their dependents to travel out of state for an abortion if they’re stationed where it’s illegal, like in, you know, Alabama. So Alice, what did Tuberville get in exchange for dropping his 10-month blockade?

Ollstein: So, not much. I mean, his aim was to force the Biden administration to change the policy, and that didn’t happen — the policy supporting folks in the military traveling if they’re based in a state where abortion is banned and they need an abortion, supporting the travel to another state, still not paying for the abortion itself, which is still banned. And so that was the policy Tuberville was trying to get overturned, and he did not get that. So he’s claiming that what he got was drawing attention to it, basically. So we’ll see if he tries to use this little bit of remaining leverage to do anything. It does not seem like much was accomplished through this means, although there is a lot of anxiety that this sets a precedent for the future, not just on abortion issues, but, really, could inspire any senator to try to do this and hold a bunch of nominees hostage for whatever policy purpose they want.

Rovner: I know. I mean, senators traditionally sit on nominees for Cabinet posts. And the FDA and the CMS [Centers for Medicare & Medicaid Services] didn’t have a director for, like, three administrations because members were angry at the administration for something about Medicare and Medicaid. But I had never seen anybody hold up military promotions before. This was definitely something new. Rachana, you were going to add something?

Pradhan: Oh, I mean, I was just thinking on Alabama specifically. I mean, I don’t claim to know, even though there was rising anger in Sen. Tuberville’s own party about this move. I mean, I’m not saying I know that this is a factor or not, but in Alabama, regardless of what he tried to do, I think that the attorney general in Alabama has made it clear that he might try to prosecute organizations that help people travel out of state to get abortions.

And so, it’s not like this is only the last word when you’re even talking about military officers or people in the military. Even in his home state, you might see some greater activity on that anyway, which might make it easier for him to honestly, in a way, give it up because it’s not the only way that you could presumably prosecute organizations or people who tried to help others go out of state to access abortion.

Rovner: Yeah, it’s important to say that while he irritated a lot of people in Washington, he probably had a lot of support from people back home in Alabama, which he kept pointing out.

Ollstein: Right. And I saw national anti-abortion groups really cheering him on and urging their members to send him thank-you letters and such. And so definitely not just in his home state. There are conservatives who were backing this.

Rovner: Well, moving on to Texas, because there is always abortion news out of Texas, we have talked quite a bit about the lawsuit filed by women who experienced pregnancy complications and couldn’t get abortions. Well, now we have a separate emergency lawsuit from a woman named Kate Cox, who is currently seeking an abortion because of the threat to her health and life.

Both of these lawsuits aren’t trying to strike the Texas ban, just to clarify when a doctor can perform a medically needed abortion without possibly facing jail time or loss of their medical license. Alice, I know the hearing for Kate Cox is happening even now as we are taping. What’s the status of the other case? We’re waiting to hear from the Texas Supreme Court. Is that where it is?

Ollstein: Yeah. So oral arguments were the other day and a bunch of new plaintiffs have joined the lawsuit. So it’s expanded to a few dozen people now, mostly patients, but some doctors as well who are directly impacted by the law. There was some interesting back and forth in the oral arguments over standing.

And one of the things the state was hammering was that they don’t have standing to sue because they aren’t in this situation that this other woman is in today, where they’re actively pregnant, actively in crisis, and being actively prevented from accessing the health care that they need that their doctor recommends, which in some circumstances is an abortion. And so I think this is an interesting test of the state’s argument on that front.

Rovner: Also, the idea, I mean, that a woman who literally is in the throes of this crisis would step forward and have her name in public and it’s going to court in an emergency hearing today.

Ollstein: Right, as opposed to the other women who were harmed previously. By the time they are seeking relief in court, their pregnancy is already over and the damage has already been done, but they’re saying it’s a threat of a future pregnancy. It’s impacting their willingness to become pregnant again, knowing what could happen, what already happened. But the state was saying like, “Oh, but because you’re not actively in the moment, you shouldn’t have the right to sue.” And so now we’ll see what they say when someone is really in the throes of it.

Rovner: In the moment. Well, another troubling story this week comes from Warren, Ohio, where a woman who experienced a miscarriage is being charged with “abuse of a corpse” because she was sent home from the hospital after her water broke early and miscarried into her toilet, which is gross, but that’s how most miscarriages happen.

The medical examiner has since determined that the fetus was, in fact, born dead and was too premature to survive anyway. Yet the case seems to be going forward. Is this what we can expect to see in places like Ohio where abortion remains legal, but prosecutors want to find other ways to punish women?

Ollstein: I mean, I also think it’s an important reminder that people were criminalized for pregnancy loss while Roe [v. Wade] was still in place. I mean, it was rare, but it did happen. And there are groups tracking it. And so I think that it’s not a huge surprise that it could happen even more now, in this post-Roe era, even in states like Ohio that just voted overwhelmingly to maintain access to abortion.

Pradhan: Julie, do we know what hospital? Because when I was looking at the story, do we know what kind of hospital it was that sent this person away?

Rovner: No. The information is still pretty sketchy about this case, although we do know the prosecutor is sending it to a grand jury. We know that much. I mean, the case is going forward. And we do know that her water broke early and that she did visit, I believe, it was two hospitals, although I have not seen them named. I mean, there’s clearly more information to come about this case.

But yeah, Alice is right. I mean, I wrote about a case in Indiana that was in 2012 or 2013, it was a long time ago, about a woman who tried to kill herself and ended up only killing her fetus and ended up in jail for a year. I mean, was eventually released, but … it’s unusual but not unprecedented for women to be prosecuted, basically, for pregnancy loss.

Ollstein: Yeah, especially people who are struggling with substance abuse. That’s been a major area where that’s happened.

Pradhan: I would personally be very interested in knowing the hospitals that are a part of this and whether they are religiously affiliated, because there’s a standard of care in medicine for what happens if you have your water break before the fetus is viable and what’s supposed to happen versus what can happen.

Rovner: There was a case in Michigan a few years ago where it was a Catholic hospital. The woman, her water broke early. She was in a Catholic hospital, and they also sent her home. I’m trying to remember where she finally got care. But yeah, that has been an issue also over the years. Well, meanwhile, back here in Washington, the Supreme Court is likely to tell us shortly, I believe, whether the 1986 Emergency Medical Treatment and Active Labor Act, known as EMTALA, requires doctors to perform abortions in life-threatening situations, as the Biden administration maintains.

Alice, this case is on what’s known as the “shadow docket” of the Supreme Court, meaning it has not been fully briefed and argued. It’s only asking if the court will overturn a lower court’s ruling that the federal law trumps the state’s ban. When are we expecting to hear something?

Ollstein: It could be after justices meet on Friday. Really, it could be whenever after that. As we’ve seen in the last few years, the shadow docket can be very unpredictable, and we could just get, at very odd times, major decisions that impact the whole country or just one state. And so, yes, I mean, this issue of abortion care and emergency circumstances is playing out in court in a couple different states, and the federal government is getting involved in some of those states.

And so I think this could be a big test. Unlike a lot of lawsuits going on right now, this is not seeking to strike down the state’s abortion ban entirely. It’s just trying to expand and clarify that people who are in the middle of a medical emergency shouldn’t be subject to the ban.

Rovner: It’s similar to what they’re fighting about in Texas, actually.

Ollstein: Yeah, exactly. And this is still playing out at the 9th Circuit, but they’re trying to leapfrog that and get the Supreme Court to weigh in the meantime.

Rovner: Yeah, and we shall see. All right, well, while we’re on the subject of “This Week in Court,” let us move on to the case that was argued in public at the Supreme Court this week about whether the Sackler family can keep much of its wealth while declaring bankruptcy for its drug company, Purdue Pharma, that’s been found liable for exacerbating, if not causing much of the nation’s opioid epidemic.

The case involves basically two bad choices: Let the Sacklers manipulate the federal bankruptcy code to shield billions of dollars from future lawsuits or further delay justice for millions of people injured by the company’s behavior. And the justices themselves seem pretty divided over which way to go. Anna, what’s at stake here? This is a lot, isn’t it?

Edney: Yeah. I mean, it’s interesting how it doesn’t exactly break down on ideological lines. The justices were — I don’t want to say all over the place, because that sounds disrespectful — but they had concerns on many different levels. And one is that the victims and their lawyers negotiated the settlement because for them it was the best way they felt that they could get compensation, and they didn’t feel that they could get it without letting the Sacklers off the hook, that the Sacklers basically would not sign the settlement agreement, and they were willing to go that route.

And the government is worried about using that and letting the Sacklers off the hook in this way and using this bankruptcy deal to be able to shield a lot of their money that they took out of the company, essentially, and have in their personal wealth now. And so that’s something that a lot of companies are, not a lot, but companies are looking to hope to use the sign of bankruptcy protection when it comes to big class-action lawsuits and harm to consumers.

And so I think that what the worry is is that that then becomes the precedent, that the ones at the very top will always get off because it’s easier to negotiate the settlement that way.

Rovner: We’ll obviously have to wait until — as this goes a few months — to see the decisions in this case, but it’s going to be interesting. I think everybody, including the justices, are unhappy with the set of facts here, but that’s why it was in front of the Supreme Court. So our final entry in “This Week in Court” is a twofer. It is also “This Week in Health Misinformation.”

Texas Attorney General Ken Paxton has filed suit against Pfizer for allegedly violating Texas’ Deceptive Trade Practices Act because its covid vaccine did not, in fact, end the covid epidemic. Quoting from the attorney general’s press release, “We are pursuing justice for the people of Texas, many of whom were coerced by tyrannical vaccine mandates to take a defective product sold by lies.” It’s hard to even know where to start with this, except that, I guess, anyone can sue anyone for anything in Texas, right?

Edney: Yeah, that’s a very good point. The entire concept of it feels so weird. I mean, a vaccine doesn’t cure anything, right? That’s not the point of a vaccine. It’s not a drug. It is a vaccine that is supposed to prevent you from getting something, and not everybody took it. So that feels like the end of the story, but, clearly, the attorney general would prefer attention, I think, on this, and to continue to sow doubt in vaccines and the government and the Food and Drug Administration seems to be maybe more of the point here.

Rovner: I noticed he’s only suing for, I think, it’s $10 million, which is frankly not a ton of money to a company as big as Pfizer. So one would assume that he’s doing this more for the publicity than for the actual possibility of getting something.

Pradhan: Yeah, I think Pfizer’s CEO’s annual salary is more than the damages that are being sought in this case. So it’s really not very much money at all. I mean, more broadly speaking, I mean, Texas, Florida, I think you see especially post-public-health-emergency-covid times, the medical freedom movement has really taken root in a lot of these places.

And I think that it just seems like this is adding onto that, where doctors say they should be able to give ivermectin to covid patients and it helped them and not be at risk of losing their license. And that’s really kind of an anti-vaccine sentiment. Obviously, it’s very alive and well.

Rovner: We are post-belief-in-scientific-expertise.

Edney: Well, I was going to say, I appreciated The Texas Tribune’s story on this because they called out every time in this lawsuit that he was twisting the truth or just completely not telling the truth at all in the sense that he said that more people who took the vaccine died, and that’s clearly not the case. And so I appreciated that they were trying to call him out every time that he said something that wasn’t true, but was just completely willing to put that out in the public sphere as if it was.

Rovner: There was also a great story on Ars Technica, which is a scientific website, about how the lawsuit completely misrepresents the use of statistics, just got it completely backwards. We’ll post a link to that one too. Well, while we are talking about drug companies, let’s talk about some drugs that really may not be what companies say they are.

Anna, you have a new story up this week about the Pentagon’s effort to ensure that generic drugs are actually copies of the drugs they’re supposed to be. That effort’s running into a roadblock. Tell us a little about that.

Edney: Yeah, thanks for letting me talk about this one. It’s “The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is in Its Way.” So the FDA is the roadblock to trying to figure out whether the drugs, particularly that the military and their family members are taking, work well and don’t have side effects that could be extremely harmful. So what’s going on here is that the Defense Department and others, the White House even, has grown skeptical of the FDA’s ability to police generic drugs, largely that are made overseas.

We did some analysis and we found that it was actually 2019 was the first time that generic drug-making facilities in India surpassed the number of those in the U.S. So we are making more, not just active ingredients, but finished products over in India. And the FDA just doesn’t have a good line into India. They don’t do many unannounced inspections. They usually have to tell the company they’re coming weeks in advance. And what we found is when the Defense Department started looking into this, they partnered with a lab to test some of these drugs.

They got some early results. Those results were concerning, as far as the drug might not work, and also could cause kidney failure, seizures. And even despite this, they’ve been facing the FDA around every corner trying to stop them and trying to get them not to test drugs. They say it’s a waste of money, when, in fact, Kaiser Permanente has been doing this for its 12.7 million members for several years.

And it just seems like something is going on at the FDA and that they don’t want people to have any questions about generic drugs. They really just want everyone to accept that they’re always exactly the same, and they even derail the White House effort to try to look into this more as well. But the Pentagon said, “Thank you very much, FDA, but we’re going forward with this.”

Rovner: Yeah. I mean, I could see that the FDA would be concerned about … they’re supposed to be the last word on these things. But, as you point out and as much of your reporting has pointed out over the last couple of years, the FDA has not been able to keep up with really making sure that these drugs are what they say they are.

Edney: One thing I learned that was interesting, and this is that in Europe, actually, there’s a network of 70 labs that do this kind of testing before drugs reach patients and after they reach patients. So it’s not a totally unusual thing. And for some reason, the FDA does not want that to happen.

Rovner: Well, finally on the drug beat this week, CVS announced earlier that it would overhaul its drug pricing to better reflect how much it pays for the drugs, all of which sounds great, but the fact is that how much CVS pays for the drugs doesn’t have all that much effect on how much we end up paying CVS for those same drugs, right? They’re just changing how they get the drugs from the manufacturers, not necessarily how they price it for the customers.

Pradhan: I think my main question would be, what does that mean for a patient’s out-of-pocket cost for prescriptions? I don’t know how much of this has to do with … for CVS as the pharmacy, but we have CVS Caremark, which is a major PBM, and how this affects the pricing models there. And PBMs, of course, have been under scrutiny in Congress. And there’s outside pressure too, right? The story that you highlighted, Julie, talks about Mark Cuban’s affordable-drug effort. And so, yeah, I don’t know. I mean, I think it sounds good until maybe we see some more details, right?

Rovner: I saw one story that said, “This could really help lower drug prices for consumers,” and one that said, “This could actually raise drug prices for consumers.” So I’m assuming that this is another one where we’re going to have to wait and see the details of. All right, well, that is this week’s news.

Now we will play my interview with Dan Weissmann of the “Arm and a Leg” podcast, and then we will come back with our extra credits. I am pleased to welcome back to the podcast Dan Weissmann, host of KFF Health News’s sister podcast, “An Arm and a Leg.” Dan has a cool two-part story on hospitals suing patients for overdue bills that he’s here to tell us about. Dan, welcome back.

Dan Weissmann: Julie, thanks so much for having me.

Rovner: So over the past few years, there have been a lot of stories about hospitals suing former patients, including a big investigation by KFF Health News. But you came at this from kind of a different perspective. Tell us what you were trying to find out.

Weissmann: We were trying to figure out why hospitals file lawsuits in bulk. Investigative reporters like Jay Hancock at KFF [Health News] have documented this practice, and one of the things that they note frequently is how little money hospitals get from these lawsuits. Jay Hancock compared the amount that VCU [Health] was seeking from patients and compared it to that hospital system’s annual surplus, their profit margin, and it looked tiny. And other studies document essentially the same thing. So why do they do it?

And we got a clue from a big report done by National Nurses United in Maryland, which, in addition to documenting how little money hospitals were getting compared to the million-dollar salaries they were paying executives in this case, also noted that a relatively small number of attorneys were filing most of these lawsuits. Just five attorneys filed two-thirds of the 145,000 lawsuits they documented across 10 years, and just one attorney filed more than 40,000 cases. So we were like, huh, maybe that’s a clue. Maybe we found somebody who is getting something out of this. We should find out more.

Rovner: So you keep saying “we” — you had some help working on this. Tell us about your partners.

Weissmann: Oh my God, we were so, so lucky. We work with The Baltimore Banner, which is a new daily news outlet in Baltimore, new nonprofit news outlet in Baltimore, that specializes in data reporting. Their data editor, Ryan Little, pulled untold numbers of cases, hundreds of thousands of cases, from the Maryland courts’ website and analyzed them to an inch of their life and taught us more than I could ever have imagined.

And Scripps News also came in as a partner and one of their data journalists, Rosie Cima, pulled untold numbers of records from the Wisconsin court system and worked to analyze data that we also got from a commercial firm that has a cache of data that has more detail than what we could pull off the website. It was a heroic effort by those folks.

Rovner: So what did you find? Not what you were expecting, right?

Weissmann: No. While Rosie and Ryan were especially gathering all this data and figuring out what to do with it, I was out talking to a lot of people. And what I found out is that in the main, it appears that frequently when these lawsuits happen and when hospitals file lawsuits in general, they’re not being approached by attorneys. They’re working with collection agencies. And most hospitals do work with a collection agency, and it’s essentially like, I put it like, you get a menu, oh, I’m having a hamburger, I’m going to pursue people for bills.

Like, OK, do you want onions? Do you want mustard? Do you want relish? What do you want on it? And in this case, it’s like, how hard do you want us to go after people? Do you want us to hit their credit reports — if you still can do that, because the CFPB [Consumer Financial Protection Bureau] has been making regulations about that — but do you want us to do that? How often can we call them? And do you want us to file lawsuits if we don’t get results? And so that is essentially in consultation with the hospital’s revenue department and the collection agency, and it’s a strategic decision between them.

That was what we found out through talking to people. What Rosie and Ryan turned up, and the data we had from the folks in New York backed up, is that, surprisingly, in the three states that we looked at, there’s just so much less of this activity than we had expected to find. In Maryland, Ryan sent me a series of emails, the first saying, like, “I’m not actually seeing any this year. That’s got to be wrong. They must be hiding them somewhere. I’m going to go investigate.” And a week later he was like, “I think I found them, and then we’ll go run some more numbers.”

And then a week later, after going to the courthouse and looking at everything you could find, he was like, “No, actually Maryland hospitals just do not seem to be suing anybody this year.” And we had expected there to be fewer lawsuits, but zero was a surprise to everybody. In New York, we appear to have found that two of those three law firms handling all those cases are no longer handling medical bill cases. And in Wisconsin, final numbers are still being crunched. Our second part will have all those numbers.

The Banner is coming out with their numbers this week. But Scripps News and us are still crunching numbers in Wisconsin. But what was the biggest shocker was, I can just tell you, there were so many fewer lawsuits than we had expected, and many of the most active plaintiffs had either cut the practice entirely, like filing zero lawsuits or filing hardly any. One of the things that a lot of these reports that look at across a state, like in New York and the Maryland report, note, and that we found in Wisconsin too, is that most hospitals don’t do this.

Noam Levey at KFF [Health News] found that many hospitals have policies that say, “We might file a lawsuit,” and some larger number of hospitals file some lawsuits. But in all these cases where you’re seeing tons of lawsuits filed, the phenomenon of suing people in bulk is actually not business as usual for most hospitals. That is driven by a relatively small group of players. There was a study in North Carolina by the state treasurers, obviously and Duke University, that found 95% of all the lawsuits were filed by just a few institutions.

The New York people found this. We’ve seen it in Wisconsin. So I mean, it’s another very interesting question when you’re looking at why does this happen. It’s like it’s not something that most institutions do. And again, in Wisconsin, we found that most of the players that had been the most active had basically stopped.

Rovner: Do we know why? Is it just all of the attention that we’ve seen to this issue?

Weissmann: Probably the answer is we don’t know why. Our colleagues at The Banner called every hospital in Maryland and were not told very much. We emailed all the hospitals in Wisconsin that we could that we had seen dramatically decrease, and nobody came to the phone. So we don’t really know.

But it does seem like, certainly in Maryland and New York, there were these huge campaigns that got tons of publicity and got laws changed, got laws passed. And there has been attention. The reports that Bobby Peterson put out in Wisconsin got attention locally. Sarah Kliff of The New York Times, who’s been writing about these kinds of lawsuits, has written multiple times about hospitals in Wisconsin. So it seems like a good first guess, but it’s a guess. Yeah.

Rovner: Well, one thing that I was interested that you did turn up, as you pointed out at the top, hospitals don’t get very much money from doing this. You’re basically suing people for money that they don’t have. So you did find other ways that hospitals could get reimbursed. I mean, they are losing a lot of money from people who can’t pay, even people with insurance, who can’t pay their multi-thousand-dollar deductible. So what could they be doing instead?

Weissmann: They could be doing a better job of evaluating people’s ability to pay upfront. The majority of hospitals in the United States are obligated by the Affordable Care Act to have charity care policies, financial assistance policies, in which they spell out, if you make less than a certain amount of money, it’s a multiple of the federal poverty level that they choose, we’ll forgive some or all of your bill. And, frequently, that number is as much as four times the federal poverty level. They might knock 75% off your bill, which is a huge help.

And as a guy that I met noted, using data from KFF, 58% of Americans make less than 75% of the federal poverty level. That is a lot of people. And so if you’re chasing someone for a medical bill, they might very well have been someone you could have extended financial assistance to. This guy, his name is Nick McLaughlin, he worked for 10 years for a medical bill collections agency. Someone in his family had a medical bill they were having a hard time paying, and he figured out that they qualified for charity care, but the application process, he noted, was really cumbersome, and even just figuring out how to apply was a big process. And so he thought, I know that chasing people for money they don’t have isn’t really the best business model and that we’re often chasing people for money they don’t have. What if we encourage hospitals to be more proactive about figuring out if someone should be getting charity care from them in the first place?

Because, as he said, every time you send someone a bill, you’re spending two bucks. And you’re not just sending one bill, you’re sending like three bills and a final notice. That all adds up, and you’re manning a call center. You’re spending money and you’re missing opportunities by not evaluating people. Because while you’re asking about their income, you might find out they’re eligible for Medicaid, and you can get paid by Medicaid rather than chasing them for money they don’t have.

And two, they might update their insurance information from you and you can get money from their insurance. You can extend financial assistance to somebody, as you said, who has a deductible they can’t pay, and they might actually come to you for care that you can unlock money from their insurance if they’re going to come to you because they’re not afraid of the bill.

I should absolutely say, while Nick McLaughlin is selling hospitals on the idea of adopting new software, which is a great idea, they should do that, they should be more proactive, an entity called Dollar For, a nonprofit organization out of the Pacific Northwest that’s been doing work all over the country, has been beating the drum about this and has a tool that anybody can use.

Essentially, go to their website, dollarfor.org, and type in where you were seen and an estimate of your income, and they will tell you, you’re likely to qualify for charity care at this hospital, because they have a database of every hospital’s policy. And if you need help applying, because some of these applications are burdensome, we’ll help you. So this exists, and everybody should know about it and everybody should tell everybody they know about it. I think the work they’re doing is absolutely heroic.

Rovner: Well, Dan Weissmann, thank you so much for joining us. We will post a link to Dan’s story in our show notes and on our podcast page.

Weissmann: Julie, thanks so much for having me.

Rovner: OK, we are back. And it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Anna, why don’t you go first this week?

Edney: Sure. This is from my colleague Madison Muller, “Tallying the Best Stats on US Gun Violence Is Trauma of Its Own.” And I thought she just did such an amazing job with this story, talking to Mark Bryant, who helped start an organization, Gun Violence Archive, which is essentially the only place that is trying to tally every instance of gun violence.

And because of a lot of the restrictions that the NRA has helped get into government regulations and things, some of them which are more recently loosening, but because of those in the past, this is really the only way you could try to look up these statistics. And he’s just given the last decade of his life, with no breaks, trying to do this and his health is failing. And I thought it was just a really poignant look at somebody who has no skin in the game, but just wanted the right information out there.

Rovner: Yeah, obviously this is a big deal. Alice.

Ollstein: I did an op-ed that was published in Stat by a group of fetal medicine specialists who are writing about how their work is being compromised by state abortion bans right now. They were saying these are very risky, high-stakes procedures where they perform operations in utero, latent pregnancy usually, and it’s an attempt to save the pregnancy where there is a big risk. But with all of these, there are risks that it could end the pregnancy, and now they’re afraid of being prosecuted for that.

And they describe a bunch of challenging situations that, even without these bans are challenging, things where there’s twins and something to help one could harm the other twin, and this could all affect the health and life of the parent as well. And so they’re saying that they’re really in this whole new era and have to think about the legal risks, as well as the medical and bioethical ones that they already have to deal with.

Rovner: I’ve reported about this over the years, and I can tell you that these are always really wrenching family decisions about trying to desperately save a pregnancy by doing this extraordinarily difficult and delicate kind of procedure. Rachana.

Pradhan: My extra credit is a story from our colleague Brett Kelman, who worked on this investigation with CBS News. It is about a type of artificial hip known as Profemur that literally were snapping in half in patients’ bodies. I told Brett earlier this week that I was cringing at every line that I read. So if folks want to get a really, frankly, pretty gruesome, awful story about how people around the country have received these artificial hips, and the fact that they broke inside their bodies has really caused a lot of damage.

And, frankly, I know we talked about the FDA, but also this story really sheds light on how the FDA has dropped the ball in not acting with more urgency. And had they done that, many of these injuries likely would’ve been avoided. So, I urge everyone to read it. It’s a great story.

Rovner: It is. I also flinched when I was reading a lot of it. Well, my story is from the Wisconsin State Journal by David Wahlberg, and it’s called “Dane, Milwaukee Counties Stop Making Unwed Fathers Pay for Medicaid Birth Costs.” And while I have been covering Medicaid since the 1980s, and I never knew this even existed, it seems that a handful of states, Wisconsin among them, allows counties to go after the fathers of babies born on Medicaid, which is about half of all births — Medicaid’s about half of all births.

Not surprisingly, making moms choose between disclosing the father to whom she is not married to the state or losing Medicaid for her infant is not a great choice. And there’s lots of research to suggest that it can lead to bad birth outcomes, particularly in African American and Native American communities. I have long known that states can come after the estates of seniors who died after receiving Medicaid-paid nursing home or home care, but this one, at the other end of life, was a new one to me.

Now, I want to know how many other states are still doing this. And when I find out, I’ll report back.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcast. We’d appreciate it if you left us a review. That helps other people find us too. Thanks, as always, to our tireless tech guru, Francis Ying, who’s back from vacation. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and Threads. Anna?

Edney: @anna_edneyreports on Threads and @annaedney on X.

Rovner: Rachana.

Pradhan: I’m @rachanadpradhan on X.

Rovner: Alice.

Ollstein: I’m @AliceOllstein on X, and @AliceMiranda on Bluesky.

Rovner: We will be back in your feed next week. Until then, be healthy.

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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Former president and current 2024 Republican front-runner Donald Trump is aiming to put a repeal of the Affordable Care Act back on the political agenda, much to the delight of Democrats, who point to the health law’s growing popularity.

Meanwhile, in Texas, the all-Republican state Supreme Court this week took up a lawsuit filed by more than two dozen women who said their lives were endangered when they experienced pregnancy complications due to the vague wording of the state’s near-total abortion ban.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Johns Hopkins University and Politico Magazine, Victoria Knight of Axios, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Among the takeaways from this week’s episode:

• The FDA recently approved another promising weight loss drug, offering another option to meet the huge demand for such drugs that promise notable health benefits. But Medicare and private insurers remain wary of paying the tab for these very expensive drugs.
• Speaking of expensive drugs, the courts are weighing in on the use of so-called copay accumulators offered by drug companies and others to reduce the cost of pricey pharmaceuticals for patients. The latest ruling called the federal government’s rules on the subject inconsistent and tied the use of copay accumulators to the availability of cheaper, generic alternatives.
• Congress will revisit government spending in January, but that isn’t soon enough to address the end-of-the-year policy changes for some health programs, such as pending cuts to Medicare payments for doctors.
• “This Week in Medical Misinformation” highlights a guide by the staff of Stat to help lay people decipher whether clinical study results truly represent a “breakthrough” or not.

Also this week, Rovner interviews KFF Health News’ Rachana Pradhan, who reported and wrote the latest “Bill of the Month” feature, about a woman who visited a hospital lab for basic prenatal tests and ended up owing almost $2,400. If you have an outrageous or baffling medical bill you’d like to share with us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: KFF Health News’ “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get,” by Katheryn Houghton, Rachana Pradhan, and Samantha Liss.

Joanne Kenen: KFF Health News’ “She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression,” by Judith Graham.  

Victoria Knight: Business Insider’s “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God,” by Lauren Vespoli.

Sarah Karlin-Smith: ProPublica’s “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It,” by Maya Miller and Robin Fields.

Also mentioned in this week’s episode:

• KFF Health News’ “Progressive and Anti-Abortion? New Group Plays Fast and Loose to Make Points,” by Darius Tahir.
• ProPublica’s “Some Republicans Were Willing to Compromise on Abortion Ban Exceptions. Activists Made Sure They Didn’t,” by Kavitha Surana.

click to open the transcript

Transcript: Trump Puts Obamacare Repeal Back on Agenda

KFF Health News’ ‘What the Health?’Episode Title: Trump Puts Obamacare Repeal Back on AgendaEpisode Number: 324Published: Nov. 30, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 30, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So, here we go.

We are joined today via video conference by Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: Victoria Knight of Axios News.

Victoria Knight: Hello, everyone.

Rovner: And Joanne Kenen of the Johns Hopkins University and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode we’ll have my interview with my colleague Rachana Pradhan about the latest KFF Health News-NPR “Bill of the Month.” This month’s patient fell into an all-too-common trap of using a lab suggested by her doctor’s office for routine bloodwork without realizing she might be left on the hook for thousands of dollars. But first, this week’s news — and last week’s, too, because we were off.

Because nothing is ever gone for good, the effort to repeal and replace Obamacare is back in the news, and it’s coming primarily from the likely Republican presidential nominee, Donald Trump. Just to remind you, in case you’ve forgotten, Trump, during his presidency, even in the two years that Republicans controlled the House and the Senate, was unable to engineer a repeal of the Affordable Care Act, nor did his administration even manage to unveil an alternative. So what possible reason could he have for thinking that this is going to help him politically now?

Knight: My takeaway is that I think it’s a personal grudge that former President Trump still has, that he failed at this. And I think, when you talk to people, he’s still mad that Sen. John McCain did his famous thumbs-down when the rest of the Republican Party was on board. So I’m not sure that there is much political strategy besides wanting to just make it happen finally, because upset it didn’t happen.

Rovner: Is this part of his revenge tour?

Knight: I mean, I think somewhat. Because if you ask House Freedom Caucus people, they will say, “Yeah, we should repeal it.” But if you ask some more moderate Republican members, they’re like, “We’ve already been through that. We don’t want to do it again.” So I don’t think the Republican Party on the Hill has an appetite to do that, even if Congress goes to Republicans in both chambers.

Kenen: Trump never came up with a health plan and repeal died in the Senate, but remember, it was a struggle to even get anything through the House, and what the House Republicans finally voted for, they didn’t even like. So I don’t know if you call this a revenge tour, but it’s checking a box. But I think it’s important to remember that if you look closely at what Republican policies are, they don’t call it repeal, they don’t say, “We are going to repeal it.” That didn’t go so well for them, and it probably cost them an election.

But they still do have a lot of policy ideas that would water down or de facto repeal many key provisions of Obamacare. So they haven’t tried to go that route, and I’m not sure they would ever try a full-out repeal, but there are lots of other things they could do, some of which would have technical names: community rating and things like that, that voters might not quite understand what they were doing, that could really undermine the protections of Obamacare.

Rovner: Yeah, I mean, I was going to say the Republican Party, in general, this has been the running joke since they started “repeal and replace” in 2010, is that they haven’t had the “replace” part of “repeal and replace” at all. Trump kept saying he was going to have a great plan, it’s coming in two weeks, and, of course, now he’s saying he’s going to have a great plan. We’ve never seen this great plan because the Republicans have never been able to agree on what should come next. Aside from, as Joanne says, tinkering around with the Affordable Care Act.

Kenen: Some of that tinkering would be significant.

Rovner: It could be.

Kenen: I mean there are things that they could tinker that wouldn’t be called repeal, but would actually really make the ACA not work very well.

Rovner: But most of the things that the Republicans wanted to do to the ACA have already been done, like repealing the individual mandate, getting rid of a lot of the industry-specific taxes that they didn’t like.

Kenen: Right. So they ended up getting rid of the spinach and they end up with the stuff that even Republicans, they might not say they like the ACA, but they’re being protected by it. And the individual mandate was the single-most unpopular, contentious part of the law and even a lot of Democrats didn’t like it. And so that target of the animus is gone. So by killing part of it, they also made it harder to do things in the future. They could do damage, though.

Rovner: Yeah. Or they could take on entitlements which, of course, is where the real money is. But we’ll get to that in a minute. Sarah, we have not seen you in a while, so we need to catch up on a bunch of things that are FDA-related. First, a couple of payment items since you were last here. The FDA has, as expected, approved a weight loss version of the diabetes drug Mounjaro that appears to be even more effective than the weight loss version of Ozempic. But insurers are still very reluctant to pay for these drugs, which are not only very expensive, they appear to need to be consumed very long-term, if not forever. Medicare has so far resisted calls to cover the drugs, despite some pressure from members of Congress, but that might be about to change.

Karlin-Smith: I think Medicare is getting a lot of pressure. They’re going to have to probably re-look at it at some point. What I found interesting is recently CMS [the Centers for Medicare and Medicaid Services] regulates other types of health plans as well, and in the ACA space they seem to be pushing for coverage of these obesity drugs. And I think they’re thinking around that. They note that the non-coverage allowance for these ACA plans was based on … they were following what Medicare was doing and there’s some acknowledgment that maybe the non-Medicare population is different from the Medicare population. But I think it’s also worth thinking about some of their other reasoning for coverage there, including that these drugs are different than some of the older weight loss drugs that provided more minimal weight loss, had worse side effects, and it came at a time when weight loss was seen as more of a cosmetic issue. So if that ACA provision rule goes through, I think that does help the case for people pushing for coverage in Medicare Part D of these drugs.

Rovner: Yeah, I mean this seems to be one of these “between a rock and a hard place” … that the demand for these drugs is huge. The evidence suggests that they work very well and that they work not just to help people lose weight, but perhaps when they lose weight to be less likely to have heart attacks and strokes and all that other stuff that you don’t want people to have. On the other hand, at the moment, they are super expensive and would bankrupt insurance companies and Medicare.

Karlin-Smith: Right. I mean, we’ve seen this before where people worry there’s a new class of expensive drugs that a lot of people seem like they will need and it’s going to bankrupt the country, and oftentimes that doesn’t happen even whether it is, in theory, more coverage to some extent. We saw that with hep C. There was a new class of cholesterol drugs that came out a few years ago that just haven’t taken off in the way people worried they would. Some of these obesity drugs, they do work really well, not everybody really tolerates them as well as you would think. So there’s questions about whether that demand is really there. Sen. [Bill] Cassidy [R-La.] has made some interesting points about “Is there a way to use these drugs initially for people and then come up with something more for weight maintenance that wouldn’t be as expensive?”

Rovner: We should point out that Sen. Cassidy is a medical doctor.

Karlin-Smith: But I think the pressure is coming on the government. Recently, I got to hear the head of OPM [Office of Personnel Management], who deals with the insurance coverage for federal government employees, and they have a really permissible coverage of obesity drugs. Basically, they require all their health insurance plans to cover one of these GLP-1 drugs, and they have some really interesting language I’ve seen used by pharmaceutical companies to say, “Look, this part of the federal government has said obesity is a disease. It needs to be treated,” and so forth. So I don’t think the federal government is going to be able to use this argument of, “This is not a medical condition, and these are expensive, we’re not going to cover it.” But there’s definitely going to be tensions there in terms of costs.

Rovner: Well, definitely more to come here. Meanwhile, CMS is also looking at changing the rules, again, for some pharmacy copay assistance programs, which claim to assist patients but more often seem to enrich drug companies and payers. What is this one about? And can you explain it in English? Because I’m not sure I understand it.

Karlin-Smith: So most people, when you get a prescription for a drug, have some amount of copay, so your insurance company pays the bulk of the cost and you pay maybe $10, $20, $30 when you pick up your prescription. For really high-cost drugs, pharmaceutical companies and sometimes third-party charities often offer copay support, where they will actually pay your copay for you.

The criticism of these charities and pharma support is that it lets the companies keep the prices higher. Because once you take away the patient feeling the burden of the price, they can still keep that higher percentage that goes to your health plan and into your premiums that you don’t think about. And so health insurance companies have said, “OK, well we’re not going to actually count this coupon money towards your copay, your out-of-pocket max for the year, because you’re not actually paying it.”

So that doesn’t end up doing the patient much good in the end because, while you might get the drug for free the first part of the year, eventually you end up having to pay the money. The courts have weighed in, and the latest ruling was that the effect of it was essentially telling CMS, “You need to re-look at your rules. We don’t think your logic is consistent,” and they seem to potentially suggest that CMS should only allow copay accumulators if there’s a cheaper drug a patient could take.

So, basically, they’re saying it’s unfair to put this burden on patients and not let them benefit from the coupons if this is the only drug they can take. But if there’s a generic drug they should be taking, that’s the equivalent then, OK, insurance company, you can penalize them there. But interestingly, CMS has basically pushed back on the court ruling. They’re asking them for basically more information about what they’re exactly directing them to do and signaling that they want to keep their broader interpretation of the law.

It’s a tricky situation, I think, policy-wise, because there’s this tension of, yes, the drug prices are really high. The insurance companies have a point of how these coupons create these perverse incentives in the system, and, on the other hand, the person that gets stuck in the middle, the patient is not really the fair pawn in this game. And when talking about a similar topic with somebody recently, they brought up what happened with surprise billing and they made this parallel of we need to think about it as, OK, you big corporate entities need to figure out how to duke out this problem, but stop putting the patient in the middle because they’re the one that gets hurt. And that’s what happened in surprise billing. I’m not sure if there’s quite that solution of how you could do that in this pharmaceutical space though.

Rovner: I was just going to say that this sounds exactly like surprise billing, but for prescription drugs. Well, while we are talking about Capitol Hill, let’s turn to Capitol Hill, where the big news of the week is that House Republican conservatives, the so-called Freedom Caucus, have apparently agreed to abide by the deal they agreed to abide by earlier this year. At least that’s when it comes to the overall total for the annual spending bills. Then-Speaker [Kevin] McCarthy’s attempt to adhere to that deal is one of the things that led to his ouster. The conservatives had wanted to cut spending much more deeply than the deal that was cut, I think it was in May. Although I feel compelled to add: Cutting the appropriations bills, which is what we’re talking about here, doesn’t really do very much to help the federal budget deficit. Most of the money that the federal government spends doesn’t go through the appropriations process. It’s automatic, like Social Security and Medicare.

But I digress. Victoria, what prompted the Freedom Caucus to change their minds and what does that portend for actually getting some of these spending bills done before the next cutoff deadline, which is mid-January?

Knight: I mean, I think it’s the Freedom Caucus just facing reality and that it’s really hard to do budget cuts, and a lot of these bills, the cuts are very deep. For the Labor-HHS bill, which is the bill that funds the Department of Health and Human Services, the cut is 18%. To the CDC [Centers for Disease Control and Prevention], 12% to the department itself. Those are really big cuts. And all the bills, you look at them, they all have really deep cuts.

The agriculture bill has deep cuts to the Department of Agriculture that some moderate Republicans don’t like. So all of the bills have these issues, and so I think they’re realizing it is just not possible to get what they want. Some of them didn’t vote for the Fiscal Responsibility Act, which was the deal that former Speaker McCarthy did with the debt limit that set funding levels. So they’re not necessarily going back on something that they voted for.

Rovner: They’re going back on something that the House voted for.

Knight: Yeah. So yeah, I think they’re just realizing the appropriations process, it’s difficult to make these deep spending cuts. I’ve also heard rumors that there might still be a big omnibus spending bill in January. Despite all this talk of doing the individual appropriations bills, I’ve heard that it may end up, despite all the efforts of the Republican Caucus, it may end where they have to just do a big bill because this is the easiest thing to do and then move on to the rest of the business of Congress for the next year. So we’ll see if that happens. But I have heard some rumors already swirling around that.

Rovner: I mean the idea they have now “agreed” to a spending limit that should have been done in the budget in April, which would’ve given them several months to work on the appropriations bills coming in under that level. And, of course, now we’re almost three months into the new fiscal year, so I mean they’re going to be late starting next year unless they resolve this pretty soon. But in the meantime, one thing that won’t happen is that we won’t get a big omnibus bill before Christmas because the deadline is now not until January, and that’s important for a bunch of health issues because we have a lot of policies that are going to end at the end of the year. Things like putting off cuts in Medicare payments to doctors, which a lot of people care about, including, obviously, all the doctors. Is there a chance that some of these “extender provisions” will find their way onto something else, maybe the defense authorization bill that I think they do want to finish before Christmas?

Knight: Yeah, I think that’s definitely possible. I’ve also heard they can retroactively do that, so even if they miss the deadline, it will probably be fixed. So it doesn’t seem like too big a worry,

Rovner: Although those doctor cuts, I mean, what happens is that CMS pens the claims, they don’t pay the claims until it’s been fixed retroactively. They have done it before, it’s a mess.

Kenen: And it’s bad for the doctors because they don’t get paid. It takes even longer to get paid because they’re put in a hold pile, which gets rather large.

Rovner: It does. Not that the defense bill doesn’t have its own issues around defense, but while we’re on the subject of defense, it looks like Alabama Republican Sen. Tommy Tuberville might be ready to throw in the towel now on the more than 400 military promotions he’s been blocking to protest the Biden administration’s policy allowing members of active-duty military and their dependents to travel to other states for an abortion if it’s banned where they are stationed. This has been going on since February. My impression is that it’s his fellow Republicans who are getting worried about this.

Kenen: Yeah. They’re as fed up as the Democrats are now. Not 100% of them are, but there’s a number who’ve come out in public and basically told him to cut it out. And then there are others who aren’t saying it in public, but there are clearly signs that they’re not crazy about this either. But we keep hearing it’s about to break. We’ve been hearing for several weeks it’s about to be resolved, and until it’s resolved, it’s not resolved. So I think clearly there’s movement because the pressure has ramped up from his fellow Republicans.

Rovner: Well, to get really technical, I think that the Senate Rules Committee passed a resolution that could get around this whole thing-

Kenen: But they don’t really want to, I mean the Republicans would rather not confront him through a vote. They’d rather just stare him down and get him to pretend that he won and move on. And that’s what we’re waiting to see. Is it a formal action by the Senate or is there some negotiated way to move forward with at least a large number of these held-up nominations.

Rovner: It’s the George Santos-Bob Menendez health issue. In other words, they would like him to step down himself rather than have to vote to take it down, but they would definitely like him to back off.

Kenen: I mean, not confusing anybody but they’re not talking about expelling her from the Senate. They’re [inaudible] talking about “Cut this out and let these people get their promotions,” because some of them are very serious. These are major positions that are unfilled.

Rovner: Yes, I mean it’s backing up the entire military system because people can’t move on to where they’re supposed to go and the people who are going to take their place can’t move on to where they’re supposed to go, and it’s not great for the Department of Defense. All right, well, while we are on the subject of abortion, at least tangentially, the Texas Supreme Court this week heard that case filed by women who had serious pregnancy complications for which they were unable to get medical care because their doctors were afraid that Texas’ abortion ban would be used to take their medical licenses and/or put them in jail.

Kenen: For 99 years!

Rovner: Yeah, the Texas officials defending against the lawsuit say the women shouldn’t be suing the state. They should be suing their doctors. So what do we expect to happen here? This hearing isn’t even really on the merits. It’s just on whether the exceptions the lower court came up with will be allowed to take effect, which at the moment they’re not.

Kenen: The exception-by-exception policy, where things get written in, is problematic because it’s hard to write a law allowing every possible medical situation that could arise and then that would open it to all other litigation because people would disagree about is this close to death or not? So the plaintiffs want a broader, clearer exception where it’s up to the doctors to do what they think is correct for their patients’ health, all sorts of things can go wrong with people’s bodies.

It’s hard to legislate, which is OK and which isn’t. So the idea of suing your doctor, I mean, that’s just not going to go anywhere. I mean, the court is either going to clarify it or not clarify it. Either way, it’ll get appealed. These issues are not going away. There’s many, many, many documented cases of people not being able to get standard of care. Pregnancy complications are rare, but they’re serious and the state legislatures have been really resistant so far to broadening these exemptions.

Rovner: It’s not just Texas. ProPublica published an investigation this week that found that none of the dozen states with the strictest abortion bans broadened exceptions even after women and their doctors complained that they were being put at grave risk, as Joanne just pointed out. When we look at elections and polls, it feels like the abortion rights side very much has the upper hand, but the reverse seems to be the case in actual state legislatures. I mean, it looks like the anti-abortion forces who want as few exceptions as possible are still getting their way. At least that’s what ProPublica found.

Kenen: Right. One of the other points that the ProPublica piece made was many of these laws were trigger laws. They were written before Roe was toppled. They were written as just in case, if the Supreme Court lets us do this, we’ll do it. So they were symbolic and they were not necessarily written with a lot of medical input. And they were written by activists, not physicians or obstetricians.

And the resistance to changing them is coming from the same interest groups that want no abortions, who say it’s just not ever medically necessary or so rarely medically necessary, and it is medically necessary at times. I mean, there are people who, and this line saying, “Well, if you’re in trouble, you can’t have an abortion. But if you’re close to death you can,” that can happen in split seconds. You can be in trouble and then really be in real trouble. You can’t predict the course of an individual, and it’s tying the hands for physicians to do what needs to be done until it might be too late.

Knight: I think a lot of them don’t realize, until it starts happening, how many times it is sometimes medically necessary. It’s not even that a woman necessarily wants to get an abortion, it’s just something happens, and it’s safer for her to do that in order to save her life.

Karlin-Smith: And you’ve seen in some of these states, sometimes Republican women prominently coming out and pushing for this and trying to explain why it’s necessary. In some cases, they also have made the argument, too, that sometimes to preserve a woman’s fertility, these procedures are necessary given the current situations they face.

Kenen: There was a quote in that ProPublica story, and it’s not necessarily everybody on the anti-abortion rights side, but this individual was quoted as saying that the baby’s life is more important than the mother’s life. So that’s a judgment that a politician or activist is making. Plus, if the mother dies, the fetus can die too. So it doesn’t even make sense. It’s not even choosing one. I mean, in many cases if the pregnant person dies, the fetus will die.

Rovner: Well, finally this week, I want to give a shout-out to a story by my KFF Health News colleague Darius Tahir, who, by the way, became a father this week. Congratulations, Darius. The story’s about a group called the Progressive Anti-Abortion Uprising that purports to be both anti-abortion and progressively leftist and feminist. One of its goals appears to be to get courts to overturn the federal law that restricts protests in front of abortion clinics. The Freedom of Access to Clinic Entrances Act, known as FACE, is I think the only explicitly abortion rights legislation that became law in the entire 1990s, which makes you wonder if this group is really as leftist and feminist as it says it is, or if it’s just a front to try and go after this particular law.

Kenen: It sets limits of where people can be and tries to police it somewhat. But in Darius’ story, his reporting showed that they did, at least some of them, had ties to right-wing groups. So that they’re calling themselves leftist and progressive … it’s not so clear how accurate that is for everybody involved.

Rovner: Yeah, it was an interesting story that we will link to in the show notes. All right, now it is time for “This Week in Health Misinformation,” and it’s good news for a change. I chose a story from Stat News called “How to Spot When Drug Companies Spin Clinical Trial Results.” It’s actually an update of a 2020 guide that STAT did to interpret clinical trial results, and it’s basically a glossary to help understand company jargon and red flags, particularly in press releases, to help determine if that new medical “breakthrough” really is or not. It is really super helpful if you’re a layperson trying to make sense of this.

OK that is this week’s news, and I now will play my “Bill of the Month” interview with Rachana Pradhan, and then we will come back with our extra credits.

I am pleased to welcome back to the podcast my colleague Rachana Pradhan, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Always great to see you, Rachana.

Rachana Pradhan: Thanks for having me, Julie.

Rovner: So this month’s patient fell into what’s an all-too-common trap. She went to a lab for routine bloodwork suggested by her doctor without realizing she could be subjected to thousands of dollars in bills she’s expected to pay. Tell us who she is and how she managed to rack up such a big bill for things that should not have cost that much.

Pradhan: So our patient is Reesha Ahmed. She lives in Texas, just in a suburb of the Dallas-Fort Worth area, and what happened to Reesha is she found out she was pregnant and she went to a doctor’s office that she had never gone to before for a standard prenatal checkup, and she also had health insurance. I want to underscore that that is an important detail in this story. So the nurse recommended that Reesha get routine blood tests just down the hall in a lab that was in the adjoining hospital. And it was routine. There was nothing unusual about the blood tests that Reesha received. So what she was advised to do is after her checkup, she was told, “Well, here’s the bloodwork you need, and just go down the hallway here, into the hospital,” to get her blood drawn.

Rovner: How convenient, they have their own lab.

Pradhan: Exactly. And Reesha did what she was told. She got bloodwork done. And then, soon after that, she started getting bills. And they first were small amounts, like there was a bill for $17, and she thought, “OK, well that’s not so bad.” Then she got a bill for over $300 and thought, “That’s unusual. Why would I get billed this?” Then came the huge one. It was over $2,000. In total, Reesha’s overall lab work bills were close to $2,400 for, again, standard bloodwork that every pregnant woman gets when they find out that they’re pregnant. And so she, needless to say, was shocked and immediately actually started trying to investigate herself as to how it was possible for her to get billed such astronomical amounts.

Rovner: And so what did she manage to find out?

Pradhan: She tried taking it up with the hospital and her insurance company. And she just got passed around over and over again. She appealed to her insurance. They denied her appeal saying that, “Well, this bloodwork was diagnostic and not preventive, so it was coded correctly based on the claim that was submitted to us,” and the hospital even sent her to collections for this bloodwork. Unfortunately for Reesha, this pregnancy ended in a miscarriage, and so it was particularly difficult. She was dealing with all the emotional, physical ramifications of that, and then on top of that, having to deal with this billing nightmare is just a lot for any one person to handle. It’s too much, honestly.

Rovner: So we, the experts in this, what did we discover about why she got billed so much?

Pradhan: You can get bloodwork at multiple places in our health system. You could get it maybe within a lab just in your doctor’s office. You can go to an outside lab, like an independent commercial one, to get bloodwork done and you can sometimes get labs within a hospital building. They may not look any different when you’re actually in there, but there’s a huge difference as to how much they will charge you.

Research has shown that if a patient is getting blood tests done, things that are relatively routine and just as a standalone service, hospital outpatient department labs charge much, much more. There’s research that we cite in the story about Reesha that … she lives in Texas … bloodwork in Texas, if it’s done in a hospital outpatient department is at least six times as expensive compared to if you get those same tests in a doctor’s office or in an independent commercial lab.

Rovner: To be clear, I would say it’s not just bloodwork. It’s any routine tests that you get in a hospital outpatient department.

Pradhan: That research, in particular, was looking at blood tests actually, in particular, just any lab work that you might get done. So the conclusion of that is really that there’s no meaningful quality difference. There’s really no difference at all when you get them in a doctor’s office versus a hospital or a lab, and yet the prices you pay will vary dramatically.

Rovner: Yeah, there should be a big sign on the door that says: “This may be more convenient, but if you go somewhere else, you might pay a lot less and so will your insurance.” What eventually happened with Reesha’s bill?

Pradhan: Well, eventually, the charges were waived and zeroed out and she was told that she would not have to pay anything and all the accounts would be zeroed out to nothing.

Rovner: Eventually, after we started asking questions?

Pradhan: Yes. It was a day after I had sent a litany of questions about her billing that they gave her a call and said, “You now won’t have to pay anything.” So it’s a big relief for her.

Rovner: Obviously this was not her fault. She did what was recommended by the nurse in her doctor’s office, but there are efforts to make this more transparent.

Pradhan: Yeah. I think in health care policy world, the issue that she experienced is a reflection of something called site-neutral payment, which essentially means if payment is site-neutral for a health care provider, it means that you get a service and regardless of where you get that service, there is no difference in the amount that you are paying. There are efforts in Congress and even in state legislatures to institute site-neutral pay for certain services.

Bloodwork is one that is not necessarily being targeted, at least in Congress. But I will say, I think one of the big takeaways about what patients can do is if they do get paperwork from your doctor’s office saying, “OK, you need to get some blood tests done,” you can always take that bloodwork request and get it done at an independent lab where the charges will be far, far less than in a hospital-based lab, to avoid these charges.

Rovner: Think of it like a prescription.

Pradhan: Exactly. It might not be as convenient in that moment. You might have to drive somewhere, you can’t just walk down a hallway and get your blood tests and labs done, but I think you will potentially avoid exorbitant costs, especially for bloodwork that is very standard and is not costly.

Rovner: Yet another cautionary tale. Rachana Pradhan, thank you very much.

Pradhan: Thanks for having me, Julie.

Rovner: OK. We are back and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sarah, you offered up the first extra credit this week. Why don’t you go first?

Karlin-Smith: Sure. I took a look at a ProPublica piece by Maya Miller and Robin Fields, “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It.” And it tells the story of a Michigan man who had cancer, and the last resort treatment for him was CAR-T, which is a cellular therapy where they basically take some of your cells, reengineer them, and put them back into your body, and it is quite expensive and it can come with a lot of expensive side effects as well.

FDA considers it a drug, and Michigan state law requires cancer drugs be covered. The insurance company of this man, basically on a technicality, denied it, describing it as a gene therapy, and he did die before he was able to fully push this battle with the insurance company and get access to the treatment and so forth. But I think the piece raises these broader issues about [how] few states are able to proactively monitor whether insurance plans are properly implementing the laws around what is supposed to be covered and not covered.

Few people really have the knowledge or skill set, particularly when you’re dealing with devastating diseases like cancer, which are just taking all of your energy just to go through the treatment, to figure out how to fight the system. And it really demonstrates the huge power imbalances people face in getting health care, even if there are laws that, in theory, seem like they’re supposed to be protected.

I also thought there’s some really interesting statistics in the story about, yes, even though the price tag for these products are really expensive, that the health insurance company actually crunched the numbers and found that if they shifted the cost to premiums in their policyholders, it would lead to, like, 17 cents a month per premium. So I thought that was interesting, as well, because it gives you a sense of, again, where their motivation is coming from when you boil it down to how the costs actually add up.

Rovner: And we will, I promise, talk about the growing backlash against insurance company behavior next week. Victoria.

Knight: So my extra-credit article is a Business Insider story in which I’m quoted, but the title is “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God.” And it basically talks about the phenomenon of Celsius popping up around the Hill. So it’s an energy drink that contains 200 milligrams of caffeine. It tastes like sparkling water, it’s fruity, but it’s not like Monster or Red Bull. It tastes way better than them, which I think is partly why it’s become so popular.

But anyways, I’ve only been on the Hill reporting for about a year and in the past couple months it has really popped up everywhere. It’s all around in the different little stores within the Capitol complex, there’s machines devoted to it. So it talks about how that happened. And I personally drink almost one Celsius a day. I’m trying to be better about it, but the Hill is a hard place to work, and you’re running around all the time, and it just gets you as much caffeine as you need in a quick hit. But the FDA does recommend about 400 milligrams a day. So if you drink two, then you’re not going over the recommendation.

Rovner: Well, you can’t drink anything else with caffeine if you drink two.

Knight: That’s true. And I do drink coffee in the morning, but it has some funny quotes to our members of Congress and chiefs of staff and reporters about how we all rely on this energy drink to get through working on the Hill.

Rovner: I just loved this story because, forever, people wonder how these things happen in the middle of the night. It’s not the members, it’s the staff who are going 16 and 20 hours a day, and they’ve always had to rely on something. So, at least now, it’s something that tastes better.

Knight: It does taste better.

Rovner: That’s why it amused me, because it’s been ever thus that you cannot work the way Capitol Hill works without some artificial help, shall we say. Joanne.

Kenen: We used to just count how many pizza boxes were being delivered to know how long a night it was going to be. I guess now you count how many empty cans of Celsius.

Knight: Exactly.

Rovner: I personally ran more on sugar than caffeine.

Kenen: OK. This is a piece by Judy Graham of KFF Health News, and the headline is “A Life-Changing Injury Transformed an Expert’s View on Disability Services.” And it’s about a woman many of us know, actually Julie and I both know: Nora Super. I’ve known her for a long time. She’s an expert on aging. She ran one of the White House aging conferences. She worked at Milken for a long time. She worked at AARP for a while.

She’s in her late 50s now, and in midlife, she started having really severe episodes of depression, and she became very open about it, she became an advocate. Last summer, she had another episode and she couldn’t get an appointment for the treatment she needed quickly enough. And while she was waiting, which is the story of American health care right now, and while she was waiting for it, she did try to take her own life. She survived, but she now has no sensation from the waist down.

And her husband is a health economist, and I should disclose, my former boss at one point, I worked for and with Len for two years, Len Nichols. So this is a story about how she has now become an advocate for disability. And this is a couple with a lot of resources. I mean both knowledge, connections, and they’re not gazillionaires, but they have resources, and how hard it has been for them even with their resources and connections. And so now Nora who, when she’s well, she’s this effervescent force of nature, and this is how she is turning — her prognosis, it could get better, they don’t know yet — but clearly an extraordinarily difficult time. And she has now taken this opportunity to become not just an advocate for the aging and not just an advocate for people with severe depression, but now an advocate for people with severe disability.

Rovner: Yeah, I mean, it’s everything that’s wrong with the American health care system, and I will say that a lot of what I’ve learned about health policy over very many years came from both Len Nichols and Nora, his wife. So they do know a lot. And I think what shocked me about the story is just how expensive some of the things are that they need. And, again, this is a couple who should be well enough off to support themselves, but these are costs that basically nobody could or should have to bear.

Kenen: Even … it was just a lift to get her into their car, just that alone was $6,500. And there are many, many, many things like that. And then another thing that they pointed out in the article is that most physicians don’t have a way of getting somebody from a wheelchair onto the examining table other than having her 70-year-old husband hoist her. So that was one of the many small revelations in this story. Obviously, it’s heartbreaking because I know and like her, but it’s also another indictment of why we just don’t do things right.

Rovner: Yes. Where we are. Well, my story is yet another indictment of not doing things right. It’s by my colleagues Katheryn Houghton, Rachana Pradhan, who you just heard, and Samantha Liss, and it’s called “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get.” And it’s just an infuriating story pointing out that everything we’ve talked about all year with state reviews of Medicaid eligibility, the endless waits on hold with call centers, lost applications, and other bureaucratic holdups, goes for more than just health insurance. The same overworked and under-resourced people who determine Medicaid eligibility are also the gatekeepers for other programs like food stamps and cash welfare assistance, and people who are eligible for those programs are also getting wrongly denied benefits.

Among the people quoted in the story was DeAnna Marchand of Missoula, Montana, who is trying to recertify herself and her grandson for both Medicaid and SNAP (food stamps), but wasn’t sure what she needed to present to prove that eligibility. So she waited to speak to someone and picking up from the story, “After half an hour, she followed prompts to schedule a callback, but an automated voice announced slots were full and instructed her to wait on hold again. An hour later, the call was dropped.” It’s not really the fault of these workers. They cannot possibly do what needs to be done, and, once again, it’s the patients who are paying the price.

All right, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks this week to Zach Dyer for filling in as our technical guru while Francis [Ying] takes some much-deserved time off. Also, as always, you can email us your questions or comments. We are at whatthehealth@kff.org. Or you can still find me at X, for now, @jrovner, or @julierovner at Bluesky and Threads. Joanne.

Kenen: I’m mostly at Threads, @joannekenen1. Occasionally I’m still on X, but not very often, that’s @JoanneKenen.

Rovner: Sarah.

Karlin-Smith: I am @SarahKarlin, or @sarahkarlin-smith, depending on the platform.

Rovner: Victoria.

Knight: I am @victoriaregisk [on X and Threads]. Still mostly on X, but also on Threads at the same name.

Rovner: We’re all trying to branch out. We will be back in your feed next week. Until then, be healthy.

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Federal officials have instructed at least 30 states to reinstate Medicaid and Children’s Health Insurance Program coverage for half a million people, including children, after an errant computer program wrongly determined they were no longer eligible. It’s just the latest hiccup in the yearlong effort to redetermine the eligibility of beneficiaries now that the program’s pandemic-era expansion has expired.

Meanwhile, the federal government is on the verge of a shutdown, as a small band of House Republicans resists even a short-term spending measure to keep the lights on starting Oct. 1. Most of the largest federal health programs, including Medicare, have other sources of funding and would not be dramatically impacted — at least at first. But nearly half of all employees at the Department of Health and Human Services would be furloughed, compromising how just about everything runs there.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Roubein of The Washington Post, Sandhya Raman of CQ Roll Call, and Sarah Karlin-Smith of Pink Sheet.

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Rachel Roubein
The Washington Post

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Among the takeaways from this week’s episode:

• Officials in North Carolina announced the state will expand its Medicaid program starting on Dec. 1, granting thousands of low-income residents access to health coverage. With North Carolina’s change, just 10 states remain that have not expanded the program — yet, considering those states have resisted even as the federal government has offered pandemic-era and other incentives, it is unlikely more will follow for the foreseeable future.
• The federal government revealed that nearly half a million individuals — including children — in at least 30 states were wrongly stripped of their health coverage under the Medicaid unwinding. The announcement emphasizes the tight-lipped approach state and federal officials have taken to discussing the in-progress effort, though some Democrats in Congress have not been so hesitant to criticize.
• The White House is pointing to the possible effects of a government shutdown on health programs, including problems enrolling new patients in clinical trials at the National Institutes of Health and conducting food safety inspections at the FDA.
• Americans are grappling with an uptick in covid cases, as the Biden administration announced a new round of free test kits available by mail. But trouble accessing the updated vaccine and questions about masking are illuminating the challenges of responding in the absence of a more organized government effort.
• And the Biden administration is angling to address health costs at the executive level. The White House took its first step last week toward banning medical debt from credit scores, as the Federal Trade Commission filed a lawsuit to target private equity’s involvement in health care.
• Plus, the White House announced the creation of its first Office of Gun Violence Prevention, headed by Vice President Kamala Harris.

Also this week, Rovner interviews KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month,” about a hospital bill that followed a deceased patient’s family for more than a year. If you have an outrageous or infuriating medical bill you’d like to send us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Julie Rovner: JAMA Internal Medicine’s “Comparison of Hospital Online Price and Telephone Price for Shoppable Services,” by Merina Thomas, James Flaherty, Jiefei Wang, et al.

Sarah Karlin-Smith: The Los Angeles Times’ “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo.

Rachel Roubein: KFF Health News’ “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney.

Sandhya Raman: NPR’s “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” by Meg Anderson.

Also mentioned in this week’s episode:

• KFF Health News’ “Diagnosis: Debt,” by Noam N. Levey and KFF Health News, NPR, and CBS staff.
• The New York Times’ “In Hospitals, Viruses Are Everywhere. Masks Are Not,” by Apoorva Mandavilli.

click to open the transcript

Transcript: More Medicaid Messiness

KFF Health News’ ‘What the Health?’Episode Title: More Medicaid MessinessEpisode Number: 316Published: Sept. 27, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping early this week, on Wednesday, Sept. 27, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.

We are joined today via video conference by Rachel Roubein of The Washington Post.

Rachel Roubein: Good morning. Thanks for having me.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: Later in this episode we’ll have my KFF Health News-NPR “Bill of the Month” interview with Samantha Liss. This month’s bill is literally one that followed a patient to his family after his death. But first, the news. I want to start with Medicaid this week. North Carolina, which approved but didn’t fund its Medicaid expansion earlier this year, approved a budget this week that will launch the expansion starting Dec. 1. That leaves just 10 states that have still not expanded the program to, mostly, low-income adults, since the Affordable Care Act made it possible in, checks notes, 2014. Any other holdout states on the horizon? Florida is a possibility, right, Rachel?

Roubein: Yes. There’s only technically three states that can do ballot measures. Now North Carolina, I believe, was the first state to actually pass through the legislature since Virginia in 2018. A lot of the most recent states, seven conservative-leaning states, instead pursued the ballot measure path. In Florida, advocates have been eyeing a 2026 ballot measure. But the one issue in Florida is that they need a 60% threshold to pass any constitutional amendment, so that is pretty, pretty high and would take a lot of voter support.

Rovner: And they would need a constitutional amendment to expand Medicaid?

Roubein: A lot of the states have been going the constitutional amendment route in terms of Medicaid in recent years. Because what they found was some legislatures would come back and try and change it, but if it’s a constitutional amendment, they weren’t able to do that. But a lot of the holdout states don’t have ballot measure processes, where they could do this — like Alabama, Georgia, etc.

Raman: Kind of just echoing Rachel that this one has been interesting just because it had come through the legislature. And even with North Carolina, it’s been something that we’ve been eyeing for a few years, and that they’d gone a little bit of the way, a little bit of the way a few times. And it was kind of the kind of gettable one within the ones that hadn’t expanded. And the ones we have left, there’s just really not been much progress at all.

Rovner: I would say North Carolina, like Virginia, had a Democratic governor that ran on this and a Republican legislature, or a largely Republican legislature, hence the continuing standoff. It took both states a long time to get to where they had been trying to go. And you’re saying the rest of the states are not split like that?

Raman: Yeah, I think it’ll be a much more difficult hill to climb, especially when, in the past, we had more incentives to expand with some of the previous covid relief laws, and they still didn’t bite. So it’s going to be more difficult to get those.

Rovner: No one’s holding their breath for Texas to expand. Anyway, while North Carolina will soon start adding people to its Medicaid rolls, the rest of the states are shedding enrollees who gained coverage during the pandemic but may no longer be eligible. And that unwinding has been bumpy to say the least. The latest bump came last week when the Department of Health and Human Services revealed that more than half a million people, mostly children, had their coverage wrongly terminated by as many as 30 states. It seems a computer program failed to note that even if a parent’s income was now too high to qualify, that same income could still leave their children eligible. Yet the entire family was being kicked off because of the way the structure of the program worked. I think the big question here is not that this happened, but that it wasn’t noticed sooner. It should have been obvious — children’s eligibility for Medicaid has been higher than adults since at least the 1980s. This unwinding has been going on since this spring. How is this only being discovered now? It’s September. It’s the end of September.

Roubein: Yeah. I mean, this was something advocates who have been closely watching this have been ringing the alarm bells for a while, and then it took time. CMS [the Centers for Medicare & Medicaid Services] had put something out, I believe it was roughly two weeks before they actually then had the roughly half a million children regain coverage — they had put out a, “OK, well, we’re exploring which states.” And lots of reporters were like, “OK, well which state is this an issue?” So yeah, the process seemed like it took some time here.

Rovner: I know CMS has been super careful. I mean, I think they’re trying not to politicize this, because they’ve been very careful not to name states, and in many cases who they know have been wrongly dropping people. I guess they’re trying to keep it as apolitical as possible, but I think there are now some advocates who worry that maybe CMS is being a little too cautious.

Karlin-Smith: Yeah, I think from the other side too, if you’ve talked to state officials, they’re also trying to be really cautious and not criticize CMS. So it seems like both sides are not wanting to go there. But I mean some Democrats in Congress have been critical of how the effort has gone.

Rovner: Yeah. And of course, if the government shuts down, as seems likely at the end of this week, that’s not going to make this whole process any easier, right? The states will still get to do what the states are doing. Their shutdown efforts, or their re-qualification efforts, are not federally funded, but the people at CMS are.

Karlin-Smith: Yeah, that’ll just throw another thorn in this as we’re getting very, very likely headed towards a shutdown at this point on the 27th. So I think that’ll be another barrier for them regardless. And I mean, most CMS money isn’t even affected by the yearly budget anyways because it’s mandatory funding, but that’ll be a barrier for sure.

Rovner: So, speaking of the government shutdown, it still seems more likely than not that Congress will fail to pass either any of the 12 regular spending bills or a temporary measure to keep the lights on when the fiscal year ends at midnight Sunday. That would lead to the biggest federal shutdown since 2013 when, fun fact, the shutdown was an attempt to delay the rollout of the Affordable Care Act. What happens to health programs if the government closes? It’s kind of a big confusing mess, isn’t it?

Roubein: Yeah, well, what we know that would definitely continue and in the short term is Medicare and Medicaid, Obamacare’s federal insurance marketplace. Medicaid has funding for at least the next three months, and there’s research developing vaccines and therapeutics that HHS, they put out their kind of contingency “What happens if there’s a shutdown?” plan. But there’s some things that the White House and others are kind of trying to point to that would be impacted, like the National Institutes of Health may not be able to enroll new patients in clinical trials, the FDA may need to delay some food safety inspections, etc.

Rovner: Sarah, I actually forgot because, also fun fact, the FDA is not funded through the rest of the spending bill that includes the Department of Health and Human Services. It’s funded through the agriculture bill. So even though HHS wasn’t part of the last shutdown in 2018 and 2019, because the HHS funding bill had already gone through, the FDA was sort of involved, right?

Karlin-Smith: Right. So FDA is lumped with the USDA, the Agriculture Department, for the purposes of congressional funding, which is always fun for a health reporter who has to follow both of those bills. But FDA is always kind of a unique one with shutdown, because so much of their funding now is user fees, particularly for specific sections. So the tobacco part of FDA is almost 100% funded by user fees, so they’re not really impacted by a shutdown. Similarly, a lot of drug, medical device applications, and so forth also are totally funded by user fees, so their reviews keep going. That said, the way user fees are, they’re really designated to specific activities.

So, where there isn’t user fees and it’s not considered a critical kind of public health threat, things do shut down, like Rachel mentioned: a lot of food work and inspections, and even on the drug and medical device side, some activities that are related that you might think would continue don’t get funded.

Rovner: Sandhya, is there any possibility that this won’t happen? And that if it does happen, that it will get resolved anytime soon?

Raman: At this point, I don’t think that we can navigate it. So last night, the Senate put out their bipartisan proposal for a continuing resolution that you would attach as an amendment to the FAA, the Federal Aviation [Administration] reauthorization. And so that would temporarily extend a lot of the health programs through Nov. 17. The issue is that it’s not something that if they are able to pass that this week, they’d still have to go to the House. And the House has been pretty adamant that they want their own plan and that the CR that they were interested in had a lot more immigration measures, and things there.

And the House right now has been busy attempting to pass this week four of the 12 appropriations bills. And even if they finished the four that they did, that they have on their plate, that would still mean going to the Senate. And Biden has said he would veto those, and it’s still not the 12. So at this point, it is almost impossible for us to not at least see something short-term. But whether or not that’s long-term is I think a question mark in all the folks that I have been talking to about this right now.

Rovner: Yeah, we will know soon enough what’s going to happen. Well, meanwhile, because there’s not enough already going on, covid is back. Well, that depends how you define back. But there’s a lot more covid going around than there was, enough so that the federal government has announced a new round of free tests by mail. And there’s an updated covid vaccine — I think we’re not supposed to call it a booster — but its rollout has been bumpy. And this time it’s not the government’s fault. That’s because this year the vaccine is being distributed and paid for by mostly private insurance. And while lots of people probably won’t bother to get vaccinated this fall, the people who do want the vaccine are having trouble getting it. What’s happening? And how were insurers and providers not ready for this? We’d been hearing the updated vaccines would be available in mid-September for months, Sarah. I mean they really literally weren’t ready.

Karlin-Smith: Yeah. I mean, it’s not really clear why they weren’t ready, other than perhaps they felt they didn’t need to be, to some degree. I mean, normally, I know I was reading actually because we’ve also recently gotten RSV [respiratory syncytial virus] vaccine approvals — normally they actually have almost like a year, I think, to kind of add vaccines to plans and schedules and so forth, and pandemic covid-related laws really shortened the time for covid. So they should have been prepared and ready. They knew this was coming. And people are going to pharmacies, or going to a doctor’s appointment, and they’re being told, “Well, we can give you the vaccine, but your insurance plan isn’t set up to cover it yet, even though technically you should be.” There seems like there’s also been lots of distribution issues where again, people are going to sites where they booked appointments, and they’re saying, “Oh, actually we ran out.” They’re trying another site. They’ve run out.

So, it’s sort of giving people a sense of the difference of what happens when sort of the government shepherds an effort and everybody — things are a bit simplified, because you don’t have to think about which site does your insurance cover. There is a program for people who don’t have insurance now who can get the vaccine for free, but again, you’re more limited in where you can go. There’s not these big free clinics; that’s really impacting childhood vaccinations, because, again, a lot of children can’t get vaccinated at the pharmacy. So I think people are being reminded of what normal looked like pre-covid, and they’re realizing maybe we didn’t like this so much after all.

Rovner: Yeah, it’s not so efficient either. All the people who said, “Oh, the private sector could do this so much more efficiently than the government.” And it’s like, we’re ending up with pretty much the same issues, which is the people who really want the vaccine are chasing around and not finding it. And I know HHS Secretary Becerra went and had this event at a D.C. pharmacy where he was going to get his vaccine. And I think the event was intended to encourage people to go get vaccinated, but it happened right at the time when the big front surge of people who wanted to get vaccinated couldn’t find the vaccine.

Karlin-Smith: I think that’s a big concern because we’ve had such low uptake of booster or additional covid shots over the past couple of years. So the people who are sort of the most go-getters, the ones who really want the shots, are having trouble and feeling a bit defeated. What does that mean for the people that are less motivated to get it, who may not make a second or third attempt if it’s not easy? We sort of know, and I think public health folks kind of beat the drum, that sort of just meeting people where they are, making it easy, easy, easy, is really how you get these things done. So it’s hard to see how we can improve uptake this year when it’s become more complicated, which I think is going to be a big problem moving forward.

Rovner: Yeah. Right. And clearly these are issues that will be ironed out probably in the next couple of weeks. But I think what people are going to remember, who are less motivated to go get their vaccines, is, “Oh my God, these people I know tried to get it and it took them weeks. And they showed up for their appointment and they couldn’t get it.” And it’s like, “It was just too much trouble and I can’t deal with it.” And there’s also, I think you mentioned that there’s an issue with kids who are too young to get the vaccine too, right?

Karlin-Smith: Right. Still, I think people forget that you have to be 6 months to get the vaccine. If you’re under 3, you basically cannot get it in a pharmacy, so you have to get it in a doctor’s office. But a lot of people are reporting online their doctor’s office sort of stopped providing covid vaccines. So they’re having trouble just finding where to go. It seems like the distribution of shots for younger children has also been a bit slower as well. And again, this is a population where just even primary series uptake has been a problem. And people are in this weird gap now where, if you can’t get access to the new covid vaccine but your kid is eligible, the old vaccine isn’t available.

So you’re sort of in this gap where your kid might not have had any opportunity yet to get a covid vaccine, and there’s nothing for them. I think we forget sometimes that there are lots of groups of people that are still very vulnerable to this virus — including newborn babies who haven’t been exposed at all, and haven’t gotten a chance to get vaccinated.

Rovner: Yeah. So this is obviously still something that we need to continue to look at. Well, meanwhile, mask mandates are making a comeback, albeit a very small one. And they are not going over well. I’ve personally been wearing a mask lately because I’m traveling later this week and next, and don’t want to get sick, at least not in advance. But masks are, if anything, even more controversial and political than they were during the height of the pandemic. Does public health have any ideas that could help reverse that trend? Or are there any other things we could do? I’ve seen some plaintiff complaints that we’ve not done enough about ventilation. That could be something where it could help, even if people won’t or don’t want to wear masks. I mean, I’m surprised that vaccination is still pretty much our only defense.

Karlin-Smith: I think with masks, one thing that’s made it hard for different parts of the health system and lower-level kind of state public health departments to deal with masks is that the CDC [Centers for Disease Control and Prevention] recommendations around masking are pretty loose at this point. So The New York Times had a good article about hospitals and masking, and the kind of guidance around triggers they’ve given them are so vague. They kind of are left to make their own decisions. The CDC actually still really hasn’t emphasized the value of KN95 and N95 respirators over surgical masks. So I think it becomes really hard for those lower-level institutions to sort of push for something that is kind of controversial politically. And a lot of people are just tired of it when they don’t have the support of those bigger institutions saying it. And some of just even figuring out levels of the virus and when that should trigger masking.

It’s much harder to track nowadays because so much of our systems and data reporting is off. So, we have this sense we’re in somewhat of a surge now. Hospitalizations are up and so forth. But again, it’s a lot easier for people to make these decisions and figure out when to pull triggers when you have clear data that says, “This is what’s going on now.” And to some extent we’re … again, there’s a lot of evidence that points to a lot of covid going around now, but we don’t have that sort of hard data that makes it a lot easier for people to justify policy choices.

Raman: You just brought up ventilation and it took time, one, for some scientists to realize that covid is also spread through ultra-tiny particles. But it also took, after that, a while for the White House to pivot its strategy to stress ventilation measures in addition to masks, and face covering. So a lot of places are still kind of behind on having better ventilation in an office, or kind of wherever you’re going.

Rovner: Yeah, I mean, one would think that improving ventilation in schools would improve, not only not spreading covid, but not spreading all of the respiratory viruses that keep kids out of school and that make everybody sick during the winter, during the school year.

Roubein: I was going to piggyback on something Sarah said, which was about how the CDC doesn’t have clear benchmarks on when there should be a guideline for what is high transmission in the hospital for them to reinstate a mask mandate or whatever. But there’s also nuance to consider there. Within that there’s, is there a partial masking rule? Which is like: Does the health care staff have to wear them versus the patients? And does that have enough benefit on its own if it’s only required to one versus the other? I mean, I know that a lot of folks have called for more strict rules with that, but then there’s also the folks that are worried about the backlashes. This has gotten so politicized, how many different medical providers have talked about angst at them, attacks at them, over the polarization of covid? So there’s so many things that are intertwined there that it’s tough to institute something.

Karlin-Smith: I think the other thing is we keep forgetting this is not all about covid. We’ve learned a lot of lessons about public health that could be applicable, like you mentioned in schools, beyond covid. So if you’re in the emergency room, because you have cancer and you need to see a doctor right away. And you’re sitting next to somebody with RSV or the flu, it would also be beneficial to have that patient wearing a mask because if you have cancer, you do not need to add one of these infectious diseases on top of it. So it’s just been interesting, I think, for me to watch because it seemed like at different points in this crisis, we were sort of learning things beyond covid for how it could improve our health care system and public health. But for the most part, it seems like we’ve just kind of gone back to the old ways without really thinking about what we could incorporate from this crisis that would be beneficial in the future.

Rovner: I feel like we’ve lost the “public” in public health. That everybody is sort of, it’s every individual for him or herself and the heck with everybody else. Which is exactly the opposite of how public health is supposed to work. But perhaps we will bounce back. Well, moving on. The Biden administration, via the Consumer Financial Protection Bureau, the CFPB, took the first steps last week to ban medical debt from credit scores, which would be a huge step for potentially tens of millions of Americans whose credit scores are currently affected by medical debt. Last year, the three major credit bureaus, Equifax, Experian, and TransUnion, agreed not to include medical debt that had been paid off, or was under $500 on their credit reports. But that still leaves lots and lots of people with depressed scores that make it more expensive for them to buy houses, or rent an apartment, or even in some cases to get a job. This is a really big deal if medical debt is going to be removed from people’s credit reports, isn’t it?

Roubein: Yeah. I think that was an interesting move when they announced that this week. Because the CFPB had mentioned that in a report they did last year, 20% of Americans have said that they had medical debt. And it doesn’t necessarily appear on all credit reports, but like you said, it can. And having that financial stress while going through a health crisis, or someone in your family going through a health crisis, is layers upon layers of difficulty. And they had also said in their report that medical billing data is not an accurate indicator of whether or not you’ll repay that debt compared to other types of credit. And it also has the layers of insurance disputes, and medical billing errors, and all that sort of thing. So this proposal that they have ends up being finalized as a rule, it could be a big deal. Because some states have been trying to do this on a state-by-state level, but still in pretty early stages in terms of a lot of states being on board. So this can be a big thing for a fifth of people.

Rovner: Yeah, many people. I’m going to give a shout-out here to my KFF Health News colleague Noam Levey, who’s done an amazing project on all of this, and I think helped sort of push this along. Well, while we are on the subject of the Biden administration and money in health care, the Federal Trade Commission is suing a private equity-backed doctors group, U.S. Anesthesia Partners, charging anti-competitive behavior, that it’s driving up the price of anesthesia services by consolidating all the big anesthesiology practices in Texas, among other things. FTC Chair Lina Khan said the agency “will continue to scrutinize and challenge serial acquisitions roll-ups and other stealth consolidation schemes that unlawfully undermine fair competition and harm the American public.” This case is also significant because the FTC is suing not just the anesthesia company, but the private equity firm that backs it, Welsh, Carson, Anderson & Stowe, which is one of the big private equity firms in health care. Is this the shot across the bow for private equity and health care that a lot of people have been waiting for? I mean, we’ve been talking about private equity and health care for three or four years now.

Karlin-Smith: I think that’s what the FTC is hoping for. They’re saying not just that we’re going after anti-competitive practices in health care, that, I think, they’re making a clear statement that they’re going after this particular type of funder, which we’ve seen has proliferated around the system. And I think this week there was a report from the government showing that CMS can’t even track all of the private equity ownership of nursing homes. So we know this isn’t the only place where doctors’ practices being bought up by private equity has been seen as potentially problematic. So this has been a very sort of activist, I think, aggressive FTC in health care in general, and in a number of different sectors. So I think they’re ready to deliberate, with their actions and warnings.

Rovner: Yeah, it’s interesting. I mean, we mostly think, those of us who have followed the FTC in healthcare, which gets pretty nerdy right there, usually think of big hospital groups trying to consolidate, or insurers trying to consolidate these huge mega-mergers. But what’s been happening a lot is these private equity companies have come in and bought up physician practices. And therefore they become the only providers of anesthesia, or the only providers of emergency care, or the only providers of kidney dialysis, or the only providers of nursing homes, and therefore they can set the prices. And those are not the level of deals that tend to come before the FTC. So I feel like this is the FTC saying, “See you little people that are doing big things, we’re coming for you too.” Do we think this might dampen private equity’s enthusiasm? Or is this just going to be a long-drawn-out struggle?

Roubein: I could see it being more of a long-drawn-out struggle because even if they’re showing it as an example, there’s just so many ways that this has been done in so many kind of sectors as you’ve seen. So I think it remains to be seen further down the line as this might happen in a few different ways to a few different folks, and how that kind of plays out there. But it might take some time to get to that stage.

Karlin-Smith: I was going to say it’s always worth also thinking about just the size and budget of the FTC in comparison to the amount of private actors like this throughout the health system. So I mean, I think that’s one reason sometimes why they do try and kind of use that grandstanding symbolic messaging, because they can’t go after every bad actor through that formal process. So they have to do the signaling in different ways.

Raman: I think probably as we’ve all learned as health reporters, it takes a really long time for there to be change in the health care system.

Rovner: And I was just going to say, one thing we know about people who are in health care to make money is that they are very creative in finding ways to do it. So whatever the rules are, they’re going to find ways around them and we will just sort of keep playing this cat and mouse for a while. All right, well finally this week, a story that probably should have gotten more attention. The White House last week announced creation of the first-ever Office of Gun Violence Prevention to be headed by Vice President Kamala Harris. Its role will be to help implement the very limited gun regulation passed by Congress in 2022, and to coordinate other administration efforts to curb gun violence. I know that this is mostly for show, but sometimes don’t you really have to elevate an issue like this to get people to pay attention, to point out that maybe you’re trying to do something? Talk about things that have been hard for the government to do over the last couple of decades.

Raman: It took Congress a long time to then pass a new gun package, which the shooting in Uvalde last year ended up catalyzing. And Congress actually got something done, which was more limited than some gun safety advocates wanted. But it does take a lot to get gun safety reform across the finish line.

Rovner: I know. I mean, it’s one of those issues that the public really, really seems to care about, and that the government really, really, really has trouble doing. I’ve been covering this so long, I remember when they first banned gun violence research at HHS back in the mid-1990s. That’s how far back I go, that they were actually doing it. And the gun lobby said, “No, no, no, no, no. We don’t really want these studies that say that if you have a gun in the house, it’s more likely to injure somebody, and not necessarily the bad guy.” They were very unhappy, and it took until three or four years ago for that to be allowed to be funded. So maybe the idea that they’re elevating this somewhat, to at least wave to the public and say, “We’re trying. We’re fighting hard. We’re not getting very far, but we’re definitely trying.” So I guess we will see how that comes out.

All right, well that is this week’s news. Now, we will play my “Bill of the Month” interview with Sam Liss, and then we’ll come back with our extra credits. I am pleased to welcome to the podcast my KFF Health News colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Welcome.

Liss: Hi.

Rovner: This month’s bill involves a patient who died in the hospital, right? Tell them who he was, what he was sick with, and about his family.

Liss: Yeah. So Kent Reynolds died after a lengthy hospital stay in February of 2022. He was actually discharged after complications from colon cancer, and died in his home. And his widow, Eloise Reynolds, was left with a series of complicated hospital bills, and she reached out to us seeking help after she couldn’t figure them out. And her and Kent were married for just shy of 34 years. They lived outside of St. Louis and they have two adult kids.

Rovner: So Eloise Reynolds received what she assumed was the final hospital bill after her husband died, which she paid, right?

Liss: Yeah, she did. She paid what she thought was the final bill for $823, but a year later she received another bill for $1,100. And she was confused as to why she owed it. And no one could really give her a sufficient answer when she reached out to the hospital system, or the insurance company.

Rovner: Can a hospital even send you a bill a year after you’ve already paid them?

Liss: You know what, after looking into this, we learned that yeah, they actually can. There’s not much in the way that stops them from coming after you, demanding more money, months, or even years later.

Rovner: So this was obviously part of a dispute between the insurance company and the hospital. What became of the second bill, the year-later bill?

Liss: Yeah. After Eloise Reynolds took out a yardstick and went line by line through each charge and she couldn’t find a discrepancy or anything that had changed, she reached out to KFF Health News for help. And she was still skeptical about the bill and didn’t want to pay it. And so when we reached out to the health system, they said, “Actually, you know what? This is a clerical error. She does not owe this money.” And it sort of left her even more frustrated, because as she explained to us, she says, “I think a lot of people would’ve ended up paying this additional amount.”

Rovner: So what’s the takeaway here? What do you do if you suddenly get a bill that comes, what seems, out of nowhere?

Liss: The experts we talked to said Eloise did everything right. She was skeptical. She compared, most importantly, the bills that she was getting from the hospital system against the EOBs that she was getting from her insurance company.

Rovner: The explanation of benefits form.

Liss: That’s right. The explanation of benefits. And she was comparing those two against one another, to help guide her on what she should be doing. And because those were different between the two of them, she was left even more confused. I think folks that we spoke to said, “Yeah, she did the right thing by pushing back and demanding some explanations.”

Rovner: So I guess the ultimate lesson here is, if you can’t get satisfaction, you can always write to us.

Liss: Yeah, I hate to say that in a way, because that’s a hard solution to scale for most folks. But yeah, I mean, I think it points to just how confusing our health care system is. Eloise seemed to be a pretty savvy health care consumer, and she even couldn’t figure it out. And she was pretty tenacious in her pursuit of making phone calls to both the insurance company and the hospital system. And I think when she couldn’t figure that out, and she finally turned to us asking for help.

Rovner: So well, another lesson learned. Samantha Liss, thank you very much for joining us.

Liss: Thanks.

Rovner: Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

OK, we’re back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org, and in our show notes on your phone or other mobile device. Sarah, you were the first to choose this week, so you get to go first.

Karlin-Smith: Sure. I looked at a story in the Los Angeles Times, “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo. Hopefully I didn’t mispronounce her name. They wrote a really fascinating but sad story about people working in an industry where they’re cutting engineered stone countertops for people’s kitchens and so forth. And because of the materials in this engineered product, they’re inhaling particles that is basically giving people at a very young age incurable and deadly lung disease. And it’s an interesting public health story about sort of the lack of protection in place for some of the most vulnerable workers. It seems like this industry is often comprised of immigrant workers. Some who kind of essentially go to … outside a Home Depot, the story suggests, or something like that and kind of get hired for day labor.

So they just don’t have the kind of power to sort of advocate for protections for themselves. And it’s just also an interesting story to think about, as consumers I think people are not always aware of the costs of the products they’re choosing. And how that then translates back into labor, and the health of the people producing it. So, really fascinating, sad piece.

Rovner: Another product that you have to sort of … I remember when they first were having the stories about the dust in microwave popcorn injuring people. Sandhya, why don’t you go next?

Raman: So my extra credit this week is from NPR and it’s by Meg Anderson. And it’s called “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” This is really interesting. It’s an investigation that looks at the deaths of individuals who died either while serving in federal prison or right after. And they looked at some of the Bureau of Prisons data, and it showed that 4,950 people had died in custody over the past decade. But more than a quarter of them were all in one correctional facility in Butner, North Carolina. And the investigation found out that the patients here and nationwide are dying at a higher rate, and the incarcerated folks are not getting care for serious illnesses — or very delayed care, until it’s too late. And the Butner facility has a medical center, but a lot of times the inmates are being transferred there when it was already too late. And then it’s really sad the number of deaths is just increasing. And just, what can be done to alleviate them?

Rovner: It was a really interesting story. Rachel.

Roubein: My extra credit, the headline is “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney from WPLN, in partnership with KFF Health News. And she writes about the national teen birth rate and how it’s declined dramatically over the past three decades. And that, essentially, it’s still dropping, but preliminary data released in June from the CDC shows that that descent may be slowing. And Catherine had talked to doctors and other service providers and advocates, who essentially expressed concern that the full CDC dataset release later this year can show a rise in teen births, particularly in Southern states. And she talked to experts who pointed to several factors here, including the Supreme Court’s decision to overturn Roe v. Wade, intensifying political pushback against sex education programs, and the impact of the pandemic on youth mental health.

Rovner: Yeah. There’ve been so many stories about the decline in teen birth, which seemed mostly attributable to them being able to get contraception. To get teens not to have sex was less successful than getting teens to have safer sex. So we’ll see if that tide is turning. Well, I’m still on the subject of health costs this week. My story is a study from JAMA Internal Medicine that was conducted in part by Shark Tank panelist Mark Cuban, for whom health price transparency has become something of a crusade. This study is of a representative sample of 60 hospitals of different types conducted by researchers from the University of Texas. And it assessed whether the online prices posted for two common procedures, vaginal childbirth and a brain MRI, were the same as the prices given when a consumer called to ask what the price would be. And surprise. Mostly they were not. And often the differences were very large. In fact, to quote from the study, “For vaginal childbirth, there were five hospitals with online prices that were greater than $20,000, but telephone prices of less than $10,000. The survey was done in the summer of 2022, which was a year and a half after hospitals were required to post their prices online.” At some point, you have to wonder if anything is going to work to help patients sort out the prices that they are being charged for their health care. Really eye-opening study.

All right, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner. Sarah.

Karlin-Smith: I’m @SarahKarlin, or @sarahkarlin-smith.

Rovner: Sandhya.

Raman: @SandhyaWrites

Rovner: Rachel.

Roubein: @rachel_roubein

Rovner: We will be back in your feed next week. Until then, be healthy.

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El cansancio y las náuseas de su marido fueron tan intensas que no fue a trabajar por tres días. Pero bebió agua con lima en lugar de ir al médico porque no tienen seguro médico. “A mucha gente le pasa esto”, agregó.

No existen normas federales para proteger a los trabajadores como los García cuando los días son excesivamente calurosos. Y sin el apoyo bipartidista del Congreso, incluso con la atención urgente de la administración Biden, es posible que el alivio no llegue en años.

El presidente Joe Biden encargó en 2021 a la Administración de Seguridad y Salud Ocupacional (OSHA) la elaboración de normas para prevenir los accidentes y las enfermedades causados por el calor.

Pero ese proceso de 46 pasos puede llevar más de una década y podría estancarse si un republicano es elegido presidente en 2024, porque el Partido Republicano se ha opuesto generalmente a las regulaciones de salud laboral en los últimos 20 años.

Estas normas podrían obligar a los empleadores a proporcionar abundante agua potable, descansos y un espacio para refrescarse a la sombra o con aire acondicionado cuando las temperaturas superen un determinado umbral.

El 7 de septiembre, OSHA comenzó reuniones con propietarios de pequeñas empresas para discutir sus propuestas, incluidas las medidas que deberían adoptar las empresas cuando las temperaturas llegan a los 90 grados.

Como este verano se han batido récords de calor, la congresista Judy Chu (demócrata de California) y otros miembros del Congreso han impulsado una legislación que aceleraría el proceso de elaboración de normas de OSHA.

El proyecto de ley lleva el nombre de Asunción Valdivia, una trabajadora agrícola que se desmayó mientras recogía uvas en California en un día de 105 grados en 2004. Su hijo la recogió del campo y Valdivia murió de un golpe de calor en el trayecto a su casa.

“Ya sea en una granja, conduciendo un camión o trabajando en un almacén, los trabajadores como Asunción mantienen nuestro país en funcionamiento mientras soportan algunas de las condiciones más difíciles”, dijo Chu en declaraciones en julio en la que instaba al Congreso a aprobar el proyecto de ley.

Las organizaciones profesionales que representan a los empresarios se han opuesto a las normas, calificándolas de “exageradas”. También afirman que faltan datos que justifiquen regulaciones generales, dada la diversidad de trabajadores y lugares de trabajo, desde restaurantes de comida rápida hasta granjas.

La Cámara de Comercio de Estados Unidos, uno de los grupos de presión más poderosos de Washington, argumentó que tales medidas carecen de sentido “porque cada empleado experimenta el calor de forma diferente”. Además, según la Cámara, normas como los ciclos de trabajo-descanso “amenazan con perjudicar directa y sustancialmente… la productividad de los empleados y, por lo tanto, la viabilidad económica de su empleador”.

“Muchos de los problemas relacionados con el calor no son consecuencia del trabajo agrícola ni de la mala gestión del empresario, sino del moderno estilo de vida de los empleados”, escribió el Consejo Nacional del Algodón en su respuesta a la legislación propuesta.

Por ejemplo, el aire acondicionado hace más difícil que las personas se adapten a un ambiente caluroso después de haber estado en una vivienda o un vehículo fríos, y señaló que “los trabajadores más jóvenes, más acostumbrados a un estilo de vida más sedentario, no pueden aguantar un día trabajando al aire libre”.

La Asociación de Recursos Forestales, que representa a los propietarios de terrenos forestales, la industria maderera y los aserraderos, agregó que “las enfermedades y muertes relacionadas con el calor no figuran entre los riesgos laborales más graves a los que se enfrentan los trabajadores”. Citaron cifras de OSHA: la agencia documentó 789 hospitalizaciones y 54 muertes relacionadas con el calor a través de investigaciones e infracciones de 2018 a 2021.

OSHA admite que sus datos son cuestionables. Ha dicho que sus cifras “sobre enfermedades, accidentes y muertes relacionadas con el calor en el trabajo son probablemente grandes subestimaciones”.

Los accidentes y enfermedades no siempre se registran, las muertes provocadas por las altas temperaturas no siempre se atribuyen al calor, y los daños relacionados con el calor pueden ser acumulativos, provocando infartos, insuficiencia renal y otras dolencias después de que la persona haya abandonado su lugar de trabajo.

El efecto de la temperatura

Para establecer normas, OSHA debe conocer los efectos del calor en los que trabajan en interiores y al aire libre. La justificación es una parte necesaria del proceso, porque las normativas aumentarán los costos para los empresarios que necesiten instalar sistemas de aire acondicionado y ventilación en el interior, y para aquellos cuya productividad pueda bajar si se permite a los que trabajan a la intemperie tomar descansos o reducir las jornadas cuando suban las temperaturas.

Lo ideal sería que los empresarios tomaran medidas para proteger a los trabajadores del calor independientemente de las normas, afirmó Georges Benjamin, director ejecutivo de la Asociación Americana de Salud Pública. “Tenemos que hacer un mejor trabajo para convencer a los empresarios de que hay una compensación entre la eficiencia y los trabajadores enfermos”, dijo.

García y su marido sufrieron los síntomas del golpe de calor: vómitos, náuseas y fatiga. Pero sus casos forman parte de los miles que no se contabilizan cuando la gente no va al hospital ni presenta denuncias por miedo a perder su empleo o estatus migratorio.

Los trabajadores agrícolas están notoriamente subrepresentados en las estadísticas oficiales sobre accidentes y enfermedades laborales, según David Michaels, epidemiólogo de la Universidad George Washington y ex administrador de OSHA.

Investigadores que encuestaron a trabajadores agrícolas de Carolina del Norte y Georgia encontraron que más de un tercio presentaba síntomas de enfermedad por calor durante los veranos analizados, una cifra muy superior a la registrada por OSHA. En particular, el estudio de Georgia reveló que el 34% de los trabajadores agrícolas no tenía descansos regulares, y una cuarta parte no tenía acceso a espacios con sombra.

Incluso los casos en los que los trabajadores son hospitalizados pueden no atribuirse al calor si los médicos no documentan la conexión. Muchos estudios relacionan los accidentes laborales con el estrés térmico, que puede causar fatiga, deshidratación y vértigo.

En un estudio realizado en el estado de Washington, se observó que los trabajadores agrícolas se caían de las escaleras con más frecuencia en junio y julio, unos de los meses más calurosos y húmedos. Y en un informe de 2021, investigadores calcularon que las temperaturas más cálidas causaron aproximadamente 20,000 accidentes laborales al año en California entre 2001 y 2018, según los reclamos de compensación de los trabajadores.

Las lesiones renales por calor también aparecen en la base de datos de OSHA de trabajadores lesionados gravemente en el trabajo, como el caso de un empleado de una planta de procesamiento de carne hospitalizado por deshidratación y lesión renal aguda en un caluroso día de junio en Arkansas.

Sin embargo, la investigación revela que el daño renal provocado por el calor también puede ser gradual. Un estudio de trabajadores de la construcción que estuvieron durante un verano en Arabia Saudita reveló que el 18% presentaba signos de lesión renal, lo que los ponía en riesgo de insuficiencia renal futura.

Además de cuantificar las lesiones y muertes causadas por el calor, OSHA trata de atribuirles un costo para poder calcular el ahorro potencial derivado de la prevención. “Hay que medir las cosas, como ¿cuánto vale una vida?”, afirmó Michaels.

Para los trabajadores y sus familias, el sufrimiento tiene consecuencias de largo alcance que son difíciles de enumerar. Los gastos médicos son más obvios. Por ejemplo, OSHA calcula que el costo directo de la postración por calor (sobrecalentamiento debido a insolación o hipertermia), es de casi $80,000 en costos directos e indirectos por caso.

Si esto parece elevado, hay que pensar en un trabajador de la construcción de Nueva York que perdió el conocimiento en un día caluroso y se cayó de una plataforma, y sufrió una laceración renal, fracturas faciales y varias costillas rotas.

El precio de los golpes de calor

Investigadores también han intentado determinar el costo que supone para los empresarios la pérdida de productividad. El trabajo es menos eficiente cuando suben las temperaturas, y si los trabajadores se ausentan por enfermedad y tienen que ser reemplazados, la producción disminuye mientras se entrena a nuevos trabajadores.

Cullen Page, cocinero de Austin, Texas, y miembro del sindicato Restaurant Workers United, trabaja durante horas frente a un horno de pizza, donde, según dijo, las temperaturas oscilaron entre los 90 y los 100 grados cuando las olas de calor golpeaban la ciudad en agosto.

“Es brutal. Afecta tu forma de pensar. Estás confundido”, dijo. “Me dio un sarpullido por calor que no se me quitaba”. Como hace tanto calor, agregó, el restaurante tiene un alto índice de rotación de empleados. Una campana extractora adecuada sobre los hornos y un mejor aire acondicionado ayudarían, pero los propietarios aún no han hecho las mejoras, dijo.

Via 313, la cadena de pizzerías en la que trabaja Page, no respondió al pedido de comentario.

Page no es el único. Una organización que representa a los empleados de restaurantes, Restaurant Opportunities Centers United, encuestó a miles de trabajadores, muchos de los cuales informaron de condiciones inseguras por el calor: el 24% de los trabajadores de Houston, por ejemplo, y el 37% de los de Philadelphia.

“Los trabajadores estuvieron expuestos a temperaturas de hasta 100 grados después de que se rompieron los aparatos de aire acondicionado y los ventiladores de las cocinas, lo que les dificultaba respirar”, escribió el Sindicato Internacional de Empleados de Servicios, que incluye a trabajadores del sector de comida rápida, en una nota a OSHA. “No hay razón para retrasar más la creación de una norma cuando conocemos la magnitud del problema y sabemos cómo proteger a los trabajadores”, dijeron.

Investigadores del Atlantic Council calculan que Estados Unidos perderá una media de $100,000 millones anuales por la baja de la productividad laboral inducida por el calor a medida que el clima se vuelve más cálido. “A los empresarios les cuesta mucho dinero no proteger a sus trabajadores”, afirmó Juley Fulcher, defensora de salud y  seguridad de los trabajadores de Public Citizen, organización de Washington D.C. que aboga por que el proyecto de ley Asunción Valdivia permita a OSHA promulgar normas el año que viene.

Como modelo, Fulcher sugirió fijarse en California, Maryland, Nevada, Oregon y Washington, los únicos estados con normas que obligan a que todos los trabajadores al aire libre tengan acceso a agua, descanso y sombra.

Aunque las normas no siempre se hacen cumplir, parece que surten efecto. Después de que California instaurara la suya en 2005, se registraron menos accidentes en los reclamos de indemnización de los trabajadores cuando las temperaturas superaban los 85 grados.

Michaels afirmó que OSHA ha demostrado que puede actuar con más rapidez de lo habitual cuando el Congreso se lo permite.

En los primeros días de la epidemia de VIH/SIDA, la agencia aprobó rápidamente normas para evitar que médicos, enfermeras y dentistas se infectaran accidentalmente con agujas. Ahora existe una urgencia similar, dijo. “Dada la crisis climática y la prolongación de los períodos de calor extremo”, señaló, “es imperativo que el Congreso apruebe una legislación que permita a OSHA promulgar rápidamente una norma que salve vidas”.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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America’s pharmaceutical giants are suing this summer to block the federal government’s first effort at drug price regulation.

Last year’s Inflation Reduction Act included what on its face seems a modest proposal: The federal government would for the first time be empowered to negotiate prices Medicare pays for drugs — but only for 10 very expensive medicines beginning in 2026 (an additional 15 in 2027 and 2028, with more added in later years). Another provision would require manufacturers to pay rebates to Medicare for drug prices that increased faster than inflation.

Those provisions alone could reduce the federal deficit by $237 billion over 10 years, the Congressional Budget Office has calculated. That enormous savings would come from tamping down drug prices, which are costing an average of 3.44 times — sometimes 10 times — what the same brand-name drugs cost in other developed countries, where governments already negotiate prices.

These small steps were an attempt to rein in the only significant type of Medicare health spending — the cost of prescription drugs — that has not been controlled or limited by the government. But they were a call to arms for the pharmaceutical industry in a battle it assumed it had won: When Congress passed the Medicare prescription drug coverage benefit (Part D) in 2003, intense industry lobbying resulted in a last-minute insertion prohibiting Medicare from negotiating those prices.

Without any guardrails, prices for some existing drugs have soared, even as they have fallen sharply in other countries. New drugs — some with minimal benefit — have enormous price tags, buttressed by lobbying and marketing.

AZT, the first drug to successfully treat HIV/AIDS, was labeled “the most expensive drug in history” in the late 1980s. Its $8,000-a-year cost was derided as “inhuman” in a New York Times op-ed. Now, scores of drugs, many with much less benefit, cost more than $50,000 a year. Ten drugs, mostly used to treat rare diseases, cost over $700,000 annually.

Pharmaceutical manufacturers say high U.S. prices support research and development and point out that Americans tend to get new treatments first. But recent research has shown that the price of a drug is related neither to the amount of research and development required to bring it to market nor its therapeutic value.

And selling drugs first in the U.S. is a good business strategy. By introducing a drug in a developed country with limited scrutiny on price, manufacturers can set the bar high for negotiating with other nations.

Here are just a few of the many examples of drug pricing practices that have driven consumers to demand change.

Exhibit A is Humira, the best-selling drug in history, earning AbbVie $200 billion over two decades. Effective in the treatment of various autoimmune diseases, its core patent — the one on the biologic itself — expired in 2016. But for business purposes, the “controlling patent,” the last to expire, is far more important since it allows an ongoing monopoly.

AbbVie blanketed Humira with 165 peripheral patents, covering things like a manufacturing step or slightly new formulation, creating a so-called patent thicket, making it challenging for generics makers to make lower-cost copycats. (When they threatened to do so, AbbVie often offered them valuable deals not to enter the market.) Meanwhile, it continued to raise the price of the drug, most recently to $88,000 a year. This year, Humira-like generics (called biosimilars for its type of molecule) are entering the U.S. market; they have been available for a fraction of the price in Europe for five years.

Or take Revlimid, a drug by Celgene (now part of Bristol Myers Squibb), which treats multiple myeloma. It won FDA approval to treat that previously deadly disease in 2006 at about $4,500 a month; today it retails at triple that. Why? The company’s CEO explained price hikes were simply a “legitimate opportunity” to improve financial “performance.”

Since it must be taken for life to keep that cancer in check, patients who want to live (or their insurers) have had no choice but to pay. Though Revlimid’s patent protection ran out in 2022, Celgene avoided meaningful price-cutting competition by offering generic competitors “volume-limited licenses” to its patents so long as they agreed to initially produce a small share of the drug’s $12 billion monopoly market.

Par Pharmaceutical, another drugmaker, maneuvered to create a blockbuster market out of a centuries-old drug, isoproterenol, through a well-meaning FDA program that gave companies a three-year monopoly in exchange for performing formal testing on drugs in use before the agency was formed.

During those three years, Par wrapped its branded product, Vasostrict, used to maintain blood pressure in critically ill patients, with patents — including one on the compound’s pH level — extending its monopoly eight additional years. Par raised the price by 5,400% between 2010 and 2020. When the covid-19 pandemic filled intensive care units with severely ill patients, that hike cost Americans $600 million to $900 million in the first year.

And then there is AZT and its successors, which offer a full life to HIV-positive people. Pills today contain a combination of two or three medicines, the vast majority including one similar to AZT, tenofovir, made by Gilead Sciences. The individual medicines are old, off-patent. Why then do these combination pills, taken for life, sometimes cost $4,000 monthly?

It’s partly because many manufacturers of the combination pills have agreements with Gilead that they will use its expensive branded version of tenofovir in exchange for various business favors. Peter Staley, an activist with HIV, has been spearheading a class-action suit against Gilead, alleging “collusion.” The negotiated price for these pills is hundreds of dollars a month in the United Kingdom, not the thousands charged in the U.S.

Faced with such tactics, 8 in 10 Americans now support drug price negotiation, giving Congress and the Biden administration the impetus to act and to resist Big Pharma’s legal challenges, which many legal experts view as a desperate attempt to stave off the inevitable.

“I don’t think they have a good legal case,” said Aaron Kesselheim, who studies drug pricing at Harvard Medical School. “But it can delay things if they can find a judge to issue an injunction.” And even a year’s delay could translate into big money.

Yes, American patients are lucky to have first access to innovative drugs. And, sadly, patients in countries that refuse to pay up once in a while go without the latest treatment. But more sadly, polling shows, large numbers of Americans are forgoing prescribed medicines because they can’t afford them.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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But when his knee started aching in late 2020, he discovered that Ballad Health was the only game in town: He went to his longtime primary care doctor, now employed by Ballad, who sent him to an orthopedist’s office owned by Ballad. That doctor sent him to get an X-ray at a Ballad-owned facility and then he was referred to a physical therapy center called Mountain States Rehab, which was now owned by Ballad as well.

When the price of his physical therapy doubled overnight — to nearly $200 for approximately 30 minutes — there was nowhere else to go, because Ballad Health effectively had a monopoly on care in 29 counties of the Appalachian Highlands in northeastern Tennessee, southwestern Virginia, northwestern North Carolina, and southeastern Kentucky.

“I was stuck,” said Finney, a college professor. “My wife now drives 50 miles to see a doctor that’s not part of Ballad, and I don’t have a doctor anymore.”

Biden administration regulators have unleashed a blizzard of antitrust activity and have broadened the definition of the types of unfair competition they can target. Regulators blocked a merger between publishing giants Penguin Random House and Simon & Schuster, saying it could have decreased author compensation and diminished the “diversity of our stories and ideas.” Regulators have filed suit to block JetBlue’s acquisition of Spirit Airlines on the grounds that the existence of the lower-cost Spirit kept fare increases by other carriers in check.

But while hospital mergers and creeping consolidation have arguably proved more traumatic and costly for countless Americans like Finney, they may prove harder to curtail.

After decades of unchecked mergers, health care is the land of giants, with one or two huge medical systems monopolizing care top to bottom in many cities, states, and even whole regions of the country. Reams of economic research show that the level of hospital consolidation today — 75% of markets are now considered highly consolidated — decreases patient choice, impedes innovation, erodes quality, and raises prices.

Ballad has generously contributed to performing arts and athletic centers as well as school bands. But, critics say, it has skimped on health care — closing intensive care units and reducing the number of nurses per ward — and demanded higher prices from insurers and patients. It has a habit of suing patients for unpaid bills. Its chief executive was paid about $4 million last year.

For many years in the past century the Federal Trade Commission made little effort to go to court to block hospital mergers because judges tended to rule that as nonprofit entities, hospitals were unlikely to use monopoly power to pursue abusive business practices. How wrong they were.

In 2021 President Joe Biden ordered the FTC to be more aggressive about hospital mergers and even to review those that had already occurred. But it is unclear if the agency has the tools to do much. “Regulators are 10 to 15 years behind and don’t have the resources — so that’s where we are,” said James Capretta, a senior fellow at the American Enterprise Institute.

The normal procedure for blocking proposed hospital mergers is cumbersome: often lengthy analysis to prove the effects on a particular market, warning letters, negotiations, and finally challenges in court.

With its staff of about 40 focused on hospitals, the FTC has prevented seven mergers in the past two years, said Rahul Rao, deputy director of the agency’s Bureau of Competition, who called the problem a “top priority.” But there were 53 hospital mergers and acquisitions in 2022 and have been more than 90 per year in recent years.

“It’s really hard to show that a prospective transaction is anti-competitive,” said Leemore Dafny, a Harvard economist who worked at the FTC about a decade ago. “I saw how hard it was for government to prove its case, even when it seemed obvious.”

In one market, two hospitals might be enough to ensure competition; in another, four. Even if the price goes up, that may not be considered anti-competitive if quality improves.

The FTC has an even harder time evaluating the vertical merger, which is far more common: when a big hospital system buys up a much smaller hospital or some doctors’ practices and independent surgery or radiology centers — or when it merges with a local insurer.

Many such mergers are never vetted at all, since transactions under $111 million do not have to be reported to the agency. “It’s a visibility problem,” Rao said. “We hear about it from news reports or from a state attorney general” who is more in touch with activity on the ground. Many of today’s behemoth systems — such as Northwell Health in New York, Sutter in California, and the University of Pittsburgh Medical Center in Pennsylvania — grew often by buying one small hospital, physician practice, or surgery center at a time, below the threshold where they would attract federal regulators’ scrutiny or merit use of their limited resources.

When hospitals buy doctors’ practices, research shows, rates for visits tend to go up as they did for Finney. Some purchases are essentially catch-and-kill operations: Buy a nearby independent outpatient cardiac center, for example, to eliminate cheaper competition.

As hospital systems have grown — and become major employers — their sway with state legislatures has created obstacles to curbing consolidation. Sympathetic state lawmakers have passed so-called Certificate of Public Advantage laws to shield hospitals from both federal and state antitrust action. Such certificates in Tennessee and Virginia allowed the formation of Ballad from two competing systems in 2018, over the FTC’s objections. The North Carolina Senate recently gave the UNC Health system the green light to expand, regardless of regulators’ thoughts.

The newest challenge is how to handle the growing number of cross-market mergers, where huge health systems in different parts of a state or of the country join forces. While the hospitals are not competing for the same patients, emerging research shows that these moves result in higher prices, in part because the increased negotiating clout of the enormous health system forces companies that cover employees in both markets to pay more in what previously was the cheaper region.

There are attempts and proposals to reinject a modicum of competition or restraint into the health system: The FTC has sought to ban noncompete clauses in job contracts that prevent doctors and nurses from moving from one hospital to another within a certain time, for example.

But many economists on both the left and the right have concluded that, at this point, meaningful competition may be difficult to restore in many markets. Barak Richman, a professor of law and business administration at Duke University, said, “It’s depressing for economists who live and breathe by competition to say maybe we just need price regulation.”

Indeed, a number of states — red and blue — are now gingerly floating moves to directly rein in prices. This year the Indiana Legislature, for example, banned hospitals from charging facility fees for visits outside of the hospital. The lawmakers even considered fining hospitals whose prices were more than 260% of the Medicare rate — though they deferred that move for two years in the hope that the threat would encourage better behavior.

With the FTC becoming more aggressive and legislatures considering such measures, perhaps hospital systems will heed the warnings and behave more like the care providers they’re meant to be and less like monopoly businesses.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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