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.

USE OUR CONTENT

This story can be republished for free (details).

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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.

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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.

USE OUR CONTENT

This story can be republished for free (details).

The FDA conducted an investigation into morel mushrooms after the severe illness outbreak linked to Dave’s Sushi in Bozeman in late March and April. The investigation found that undercooked or raw morels were the likely culprit, and it led the agency to issue its first guidelines on preparing morels.

“The toxins in morel mushrooms that may cause illness are not fully understood; however, using proper preparation procedures, such as cooking, can help to reduce toxin levels,” according to the FDA guidance.

Even then, a risk remains, according to the FDA: “Properly preparing and cooking morel mushrooms can reduce risk of illness, however there is no guarantee of safety even if cooking steps are taken prior to consumption.”

Jon Ebelt, spokesperson for Montana’s health department, said there is limited public health information or medical literature on morels. And samples of the morels taken from Dave’s Sushi detected no specific toxin, pathogen, pesticide, or volatile or nonvolatile organic compound in the mushrooms.

Aaron Parker, the owner of Dave’s Sushi, said morels are a “boutique item.” In season, generally during the spring and fall, morels can cost him $40 per pound, while morels purchased out of season are close to $80 per pound, he said.

Many highly regarded recipe books describe sauteing morels to preserve the sought-after, earthy flavor. At Dave’s, a marinade, sometimes boiling, was poured over the raw mushrooms before they were served, Parker said. After his own investigation, Parker said he found boiling them between 10 and 30 minutes is the safest way to prepare morel mushrooms.

Parker said he reached out to chefs across the country and found that many, like him, were surprised to learn about the toxicity of morels.

“They had no idea that morel mushrooms had this sort of inherent risk factor regardless of preparation,” Parker said.

According to the FDA’s Food Code, the vast majority of the more than 5,000 fleshy mushroom species that grow naturally in North America have not been tested for toxicity. Of those that have, 15 species are deadly, 60 are toxic whether raw or cooked — including “false” morels, which look like spongy edible morels — and at least 40 are poisonous if eaten raw, but safer when cooked.

The North American Mycological Association, a national nonprofit whose members are mushroom experts, recorded 1,641 cases of mushroom poisonings and 17 deaths from 1985 to 2006. One hundred and twenty-nine of those poisonings were attributed to morels, but no deaths were reported.

Marian Maxwell, the outreach chairperson for the Puget Sound Mycological Society, based in Seattle, said cooking breaks down the chitin in mushrooms, the same compound found in the exoskeletons of shellfish, and helps destroy toxins. Maxwell said morels may naturally contain a type of hydrazine — a chemical often used in pesticides or rocket fuel that can cause cancer — which can affect people differently. Cooking does boil off the hydrazine, she said, “but some people still have reactions even though it’s cooked and most of that hydrazine is gone.”

Heather Hallen-Adams, chair of the toxicology committee of the North American Mycological Association, said hydrazine has been shown to exist in false morels, but it’s not as “clear-cut” in true morels, which were the mushrooms used at Dave’s Sushi.

Mushroom-caused food poisonings in restaurant settings are rare — the Montana outbreak is believed to be one of the first in the U.S. related to morels — but they have happened infrequently abroad. In 2019, a morel food poisoning outbreak at a Michelin-star-rated restaurant in Spain sickened about 30 customers. One woman who ate the morels died, but her death was determined to be from natural causes. Raw morels were served on a pasta salad in Vancouver, British Columbia, in 2019 and poisoned 77 consumers, though none died.

Before the new guidelines were issued, the FDA’s Food Code guidance to states was only that serving wild mushrooms must be approved by a “regulatory authority.”

The FDA’s Food Code bans the sale of wild-picked mushrooms in a restaurant or other food establishment unless it’s been approved to do so, though cultivated wild mushrooms can be sold if the cultivation operations are overseen by a regulatory agency, as was the case with the morels at Dave’s Sushi. States’ regulations vary, according to a 2021 study by the Georgia Department of Public Health and included in the Association of Food and Drug Officials’ regulatory guidelines. For example, Montana and a half-dozen other states allow restaurants to sell wild mushrooms if they come from a licensed seller, according to the study. Seventeen other states allow the sale of wild mushrooms that have been identified by a state-credentialed expert.

The study found that the varied resources states use to identify safe wild mushrooms — including mycological associations, academics, and the food service industry — may suggest a need for better communication.

The study recognized a “guidance document” as the “single most important step forward” given the variety in regulations and the demand for wild mushrooms.

Hallen-Adams said raw morels are known to be poisonous by “mushroom people,” but that’s not common knowledge among chefs.

In the Dave’s Sushi case, Hallen-Adams said, it was obvious that safety information didn’t get to the people who needed it. “And this could be something that could be addressed by labeling,” she said.

There hasn’t been much emphasis placed on making sure consumers know how to properly prepare the mushrooms, Hallen-Adams said, “and that’s something we need to start doing.”

Hallen-Adams, who trains people in Nebraska on mushroom identification, said the North American Mycological Association planned to update its website and include more prominent information about the need to cook mushrooms, with a specific mention of morels.

Montana’s health department intends to publish guidelines on morel safety in the spring, when morel season is approaching.

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.

USE OUR CONTENT

This story can be republished for free (details).

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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.

The Supreme Court this week agreed to hear a case that could further restrict abortion — even in states where it remains legal. The case to determine the fate of the abortion pill mifepristone is the first major abortion case to come before the court since its overturn of Roe v. Wade in 2022. It could also set a precedent for judges to second-guess scientific rulings by the FDA.

Meanwhile, legislation is finally moving in the House and Senate to renew a long list of health programs that technically expired at the end of the last fiscal year, on Sept. 30. But the bills to fund community health centers and build on programs to fight the opioid epidemic are unlikely to become law until January, at the soonest.

This week’s panelists are Julie Rovner of KFF Health News, Riley Griffin of Bloomberg News, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

Panelists

Riley Griffin
Bloomberg

@rileyraygriffin

Read Riley's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

• The Supreme Court will consider a case challenging access to mifepristone, opting to review FDA decisions in recent years governing the loosening some requirements for distribution and use of the so-called abortion pill — such as the agency’s call allowing pregnant people to obtain the drug without a doctor’s visit. While the drug’s overall approval is not in question in this case, the drug industry argues undermining the FDA’s authority could open the floodgates for challenges to other pharmaceuticals and have a chilling effect on drug development.
• Legal experts say the Texas high court’s ruling blocking the abortion of a pregnant woman whose fetus has a fatal condition calls into question whether doctors are able to identify any medically necessary circumstance under existing legal exceptions. And, in other court news, the Supreme Court will let stand a Washington state law banning conversion therapy.
• On Capitol Hill, lawmakers are bundling an assortment of bipartisan, generally unrelated health measures so they can be approved, possibly as part of a government spending package in January. But can this Congress — which has proved unproductive even by recent standards — finish its work in a presidential election year?
• One piece of legislation under consideration would address the opioid epidemic, renewing grants for state efforts to prevent and treat opioid use disorder. The epidemic has taken a toll, but it is not the only problem contributing to a troubling drop in U.S. life expectancy.
• And cyberattacks are on the upswing in health care, with new revelations about an attack that targeted the Department of Health and Human Services at the onset of the pandemic.

Also this week, Rovner interviews University of Maryland professor and social media superstar Jen Golbeck about her new book, “The Purest Bond,” which lays out the science of the human-canine relationship.

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

Julie Rovner: The Washington Post’s “They Watched Their Husbands Win the Heisman — Then Lost Them to CTE,” by Kent Babb.

Alice Miranda Ollstein: Politico’s “A Deadly Delivery Highlights ‘Falsified’ Heat Records at USPS,” by Ariel Wittenberg.

Lauren Weber: The Washington Post’s “Applesauce Lead Cases in Kids Surge Amid Questions on FDA Oversight,” by Amanda Morris, Teddy Amenabar, Laura Reiley, and Jenna Portnoy.

Riley Griffin: Bloomberg News’ “The Next Blockbuster Drug Might Be Made in Space,” by Robert Langreth.

Also mentioned in this week’s episode:

• The American Prospect’s “The Life-and-Death Cost of Conservative Power,” by Paul Starr.
• Bloomberg Businessweek’s “The Untold Story of a Massive Hack at HHS in Covid’s Early Days,” by Jordan Robertson and Riley Griffin.

click to open the transcript

Transcript: Abortion and SCOTUS, Together Again

KFF Health News’ ‘What the Health?’Episode Title: Abortion and SCOTUS, Together AgainEpisode Number: 326Published: Dec. 14, 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. 14, 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 Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And we welcome to the podcast for the first time Riley Griffin of Bloomberg News.

Riley Griffin: Thanks for having me.

Rovner: Later in this episode, we’ll have my interview with University of Maryland professor Jen Golbeck, who is probably better known to anyone on social media as “GR Mom,” the woman who takes in half a dozen special-needs golden retrievers at a time. She’s co-author of a new book called “The Purest Bond” that explains why our love for dogs is not just all in our heads. But first, this week’s news.

We will start with abortion this week. In news, Alice, that you anticipated last week, the Supreme Court has decided to hear a case out of Texas regarding the abortion pill mifepristone. Depending on how the court rules, it could make abortion less available even in states where it remains legal. But Alice, this might not be as consequential as it looks at first blush because they didn’t take the case that could have impacted the overall approval of the drug, right?

Ollstein: That’s right. So they’re basically taking up what the 5th Circuit decided, not what the district court decided. The district court, as we remember very dramatically, decided that FDA approval of mifepristone decades ago was done incorrectly and would have moved to effectively ban the drug nationwide. What’s at issue before the Supreme Court are subsequent FDA decisions to make the pill more easily accessible, but those are really important and sweeping. I mean, I feel like the mail delivery piece is getting a lot of attention, but it’s not just that.

These are decisions that, one, approved a generic version of the pill, which made it cheaper and more accessible all over the country. It expanded its use from just the first seven weeks of pregnancy to the first 10 weeks of pregnancy. Those crucial weeks are when a lot of people realize they’re pregnant and make a decision about that. And more recently, allowing retail pharmacies to dispense the pills and, crucially, not requiring an in-person doctor visit to obtain them.

So the companies that make the pills say that if the Supreme Court were to side with the groups challenging these rules, it would be a de facto ban, at least temporarily, while they have to go through relabeling and retooling and everything. And that could take a while. So I think while abortion rights groups are celebrating that the overall approval of the pills is not in question, this is still very, very consequential, and it’s going to be decided just months before the presidential election, keeping this really front and center in people’s minds.

Rovner: Just to confirm though, the Supreme Court has already weighed in and put even what the 5th Circuit did on hold, right?

Ollstein: Yes.

Rovner: So nothing has changed at the moment from what’s originally available.

Ollstein: That’s right. And so in states that have their own bans, the bills are still banned. In states where they’re protected, they’re still protected, and that will continue until the high court hears and rules on the case.

Rovner: But even though, I mean, the court is not going to take up the case where the lower-court judge said that the FDA shouldn’t have approved this in the first place, this could still be the Supreme Court basically overruling FDA’s judgment about what’s safe and effective, which could have big implications for drugs way beyond mifepristone, right?

Ollstein: That’s what the companies that make the pills and other unrelated pharmaceutical companies have been arguing. They say that this could open the floodgates for anyone with a grievance against any drug to try to challenge it. People are worried about contraception. People are worried about covid shots. Anything that’s generated any level of pushback and controversy, that would greenlight this strategy for them.

And the pharmaceutical industry has also argued that it could put a chilling effect on companies even submitting new drugs for approval, saying, if they don’t have the confidence that a court could come in later and yank away the approval, why would they feel confident in putting this out on the market? So this has the potential to be really disruptive. And I would note it comes at a time when the Supreme Court is overall really questioning deference to federal agency decisions across the board, anything from the Commerce Department to … there was a case about phishing regulations. And so, overall, it’s this “war on the administrative state” effort and this is definitely a piece of it, and it could affect health care in a lot of ways.

Rovner: Riley, you watch the drug industry. First, they were staying out of it, and then they finally decided, oh, we should get a little bit exercise because this could be important. Where are they these days?

Griffin: I think what’s been so novel for me situated here in D.C. is to watch industry lobby conservatives on this agenda. To say, this is about business interests. And if you break this house of cards, what else is going to come crashing down? So Alice made that point, and it’s a really important one. The implications here are far-reaching. And in questioning the FDA’s authority in this space, you are really going so much further, and it calls into question other drugs.

Rovner: So great, we’ll have something to talk about for weeks and weeks to come. Well, still in Texas — why does it seem that all the abortion news comes out of Texas? Last week we talked about Kate Cox, a 31-year-old mom of two, whose fetus was diagnosed at 20 weeks with a birth defect incompatible with life.

When we left off taping last Thursday morning, her lawyers were asking a Texas state judge for permission for her to have an abortion because her doctor said continuing the pregnancy could threaten her health and/or her ability to have more children in the future. Alice, a whole bunch of things happened after that. Catch us up.

Ollstein: People are really seizing on this case because it really calls the question on a lot of the assumptions of our post-Roe legal and health care landscape. And so a lower court ruled in her favor and said she should be able to get an abortion to protect her health and her ability to have another child. They said that the state should be barred from bringing criminal charges against the doctor performing the procedure. So that was all set to go forward.

And then the Texas Attorney General Ken Paxton, who recently survived an impeachment attempt, I should note, moved to intervene and moved to ask the Texas Supreme Court to stop this abortion from happening. He argued that the woman should not qualify for a medical exemption, and the Texas Supreme Court put a hold on the lower-court ruling and said it needed a little more time to think about it. And then they came back and ruled against the woman and said she should not be allowed to get an abortion. But it was moot in terms of her specific situation because of the threats to her health. She had already been to the emergency room several times at this point, and so she decided to go out of state for the procedure.

When I wrote about this, I tried to look into what are the bigger implications here. And a legal expert said something that really struck me, which is that the entire Dobbs premise is that you could ban so-called elective abortions, but maintain access to medically necessary ones. Sometimes they’re called therapeutic abortions. There’s a lot of weird terminology. And this really calls that question, can you always distinguish between those two?

Who’s to say? Here, the doctor’s interpretation of which was which clashed with the state’s interpretation of which was which. A lot of states have these so-called “life of the mother” exemptions, and this really shows that they are very difficult to use in practice.

Rovner: I’ve covered this for so many years at the federal level with little wording changes to the Hyde Amendment, and the big fight has always been between exceptions for the life of the mother and for the health of the mother. And the anti-abortion movement has always said, you can’t have a health exception because that would include mental health and it would just include anyone who said she doesn’t want to be pregnant.

So the phrase is always “It’s a loophole you can drive a truck through.” But then you get to these cases where it clearly is women whose water breaks at 20 weeks, it will eventually be life-threatening, but is immediately health-threatening. But a lot of these states don’t have health exceptions because they say that they could be used too broadly, and that’s kind of where they get stuck, right?

Weber: Yeah. I just wanted to chime in and say that I think what’s interesting about this case is this is the first time I’ve heard a lot from folks that aren’t in the media at all, don’t read the media every day, don’t see the flood of stories that this podcast group and folks, probably many of the listeners to this podcast, have seen about abortion coverage. It’s the first time I got a wave of phone calls being like, “Hey, can you explain this to me? What does this mean?” So I think that this story out of Texas, this reality, this lawsuit, has broken through to the rest of the country.

I mean, granted, this is an anecdotal sample size of my family and friends that live in the heart of the country, but I do think this has broken through in a way that many of the other stories that we’ve all written here have not. And so I’m very curious to see how this continues to play out because I do think this is gaining a lot more awareness with these lawsuits. We have this one, and then I know there’s one in Kentucky that I think we’ll see play out in the next couple weeks and months, obviously.

Rovner: Yeah, and I think one of the things that’s really important about this is that we know her name and we know what she looks like because she’s been brave enough to come forward in the middle of this medical crisis and allow them to use her name and do TV interviews. And Alice, I interrupted you.

Ollstein: Oh, yes. A couple things. We haven’t mentioned that this was a non-viable pregnancy. Her fetus was diagnosed with a almost certainly fatal condition. So I think that’s another key piece of it. Other states have an exemption for fetal diagnoses like this where someone can get an abortion. Texas does not. And I talked to some Texas anti-abortion groups who were insistent that she should not be granted an exception and that the “compassionate” thing to do would be to force her to give birth and then watch the child die and mourn it. They were very explicit about that.

And so I think that is also capturing a lot of people’s attention, like Lauren was saying, where they’re fighting for a potential life that is very potential at this point. And you’re hearing a lot of rhetoric from conservatives right now that are insisting that allowing exemption for fatal fetal conditions is akin to eugenics. They say that these fetuses should be given every chance at life, even if that life is very brief and sometimes painful. So I think this is a debate we’ll continue to see play out.

Rovner: Yeah, I was surprised. I mean, Kellyanne Conway, of all people, who’s not just the former Trump aide, a prominent Republican pollster, actually had a tweet this week that suggested this is not great for Republicans. What’s happening to this woman? The fact that it’s so public. Riley, you wanted to say something?

Griffin: Yeah, just another point Alice mentioned, “this potential life,” but the attorneys have also mentioned the potential for future lives … that this woman, it’s not just her health being impacted, but it also could decrease her ability to have children in the future, which is another part of this story that I think is really tugging at people’s heartstrings. And just that the ruling came hours after she made the announcement that she’d left the state to get the procedure. I mean, all of these things combined make for such a poignant story.

And I want to bring in some research that has also recently been published, which suggests she’s not alone. Nearly 1 in 5 people seeking an abortion have traveled out of state, according to the Guttmacher Institute, citing data from the first half of 2023. And experts are saying this is probably an underestimate. And when you do get to those states in places where abortion remains legal, wait times are increasingly long.

So there are so many dynamics at play. It’s not just the states where access is limited and we’re seeing these very difficult rulings come down, but what are the consequences in the places where access remains available? But that flood of folks trying to get these procedures have to make that travel. Sorry, I jumbled my words there, but you understand what I’m saying, or I can try again.

Rovner: The other piece of that, if you play that all the way out, where women are having to travel and they often have other kids, so they have to get someone to watch their kids and they have to get time off of work, and they have trouble getting appointments in other states, and that means that these abortions are happening later in pregnancy, which is, I know, not what the anti-abortion movement wants. And also the later in pregnancy you get, the more risks there are and the more expensive the whole thing gets.

So it’s just the whole thing is piling on each other. But I think, Riley, something you said that I think I keep highlighting and want to keep highlighting, most of the women we’ve been talking about individually are women who got pregnant because they wanted to have a baby. These are not women who weren’t using birth control and like, oops, I got pregnant. Kate Cox wants to have more children. This was a very wanted pregnancy. … I think one of the things we’re discovering through all of this is that more pregnancies go wrong than people realize. It’s just that when pregnancies go wrong, people tend not to want to talk about it. It’s painful and awful, and it’s not like having your appendix out. So I think we’re kind of, as a population, discovering that pregnancy is fairly fraught. For every baby that’s born happy and healthy, there are a lot of pregnancies that just don’t work the way they’re supposed to.

Ollstein: And I also have seen a lot of chatter saying, “This is the new frontier. We’re going to see this wave of individual women suing for the right to have an abortion.” And I don’t think that’s true. Kate Cox’s lawyers don’t think that’s true. Most women in this circumstance can’t do this or are not willing to be the public face of a lawsuit and get all kinds of threats and harassment.

And a lot of people aren’t able physically to wait for a court to rule. Even Kate Cox wasn’t. And so the idea that there’s going to be so many people who are actively pregnant and seeking an abortion and have the resources to find an attorney willing to represent them and are willing to go through this, I think I’m hearing that that is not likely at all, that this is somewhat of an outlier.

Rovner: While we were talking about asking permission for courts, the Supreme Court this week declined to review a challenge to a Washington state law that banned so-called conversion therapy. I’m still having trouble wrapping my head around this because it’s like a quadruple negative, but what is conversion therapy and where are we now that the appeals court ruling is being allowed to stand?

Weber: I think a lot of people don’t realize this, but there was actually a report that just came out from The Trevor Project. Conversion therapy is a process in which people try to, they call it, convert LGBTQ folks to have heterosexual relationships, and there could be a wide array of what that means. It involves sometimes psychological therapy, sometimes physical therapy, all kinds of things. Many, many states have banned this because science has shown it is not an effective treatment and can lead to mental health effects.

But I think why this ruling is important is that, as I was saying, The Trevor Project has identified there’s over 1,300 practitioners of conversion therapies across the country. Even though this is banned in so many states, this is a practice that goes on and on and on, despite what seems to be a lot of negative health impacts of it. So the fact that the Supreme Court decided not to take this up at all is considered very much a win for the LGBTQ community, especially considering the fact that this does still go on in many, many states.

Rovner: At least … that’s one thing that’s off the table, at least for the very moment. Well, let us go back to Capitol Hill, where lawmakers are actually passing stuff, albeit so late in the session that these policies are unlikely to make it over the finish line until 2024.

The House Monday night passed a bill that includes a bunch of things we’ve been talking about all year: site-neutral payments in Medicare to prevent hospital outpatient departments from charging multiples more to Medicare than non-hospital affiliated facilities; banning some pricing practices by pharmacy benefit managers; clarifying and extending some price transparency rules for hospitals and insurers, particularly those not making their prices public even though it is now required by law; funding community health centers; and stopping some scheduled cuts to hospitals that serve a high proportion of low-income patients.

Yes, that’s a whole lot of things that don’t necessarily go together, but this is how Congress works. All of these things were supposed to happen before the start of the new fiscal year, Oct. 1. Now, let me check, it is the second week of December. These are pretty bipartisan policies, most of them. What the heck took them until December to get this through?

Ollstein: This has been, even by Congress’ standards, a historically unproductive Congress. We spent a lot of the year battling over who should be the House speaker, for instance. That took up a lot of time. They took a really long summer recess, and there’s been all kinds of back and forth over just keeping the government funded. So that has not left a lot of room for basic policymaking. And there’s the fear that heading into next year — a lot of this stuff is getting punted into next year — that only gets harder in an election year. They’re in session less time. There’s less of an incentive to compromise. People are really retreating into their corners. And so it’s not a great outlook, even for things that really are popular on both sides of the aisle.

I will say, on the site-neutral payments piece, that’s been a long-time goal for a lot of people. And what’s being debated now is seen by some as inadequate, way not enough. It’s only a narrow set of drugs within Medicare. People would like this to be implemented way more broadly.

But you also have the hospital industry really mobilizing against it and saying, “You know all those rural hospitals that are closing down and going out of business? That’s going to get worse if you do this.” And as we know, hospitals are often the biggest employer in a lot of congressional districts, and so that could make this hard to pass as well.

Rovner: The same thing with the PBM [pharmacy benefit manager] reforms, and you’ve got the drug industry and you’ve got the hospital industry. So even though these things are “bipartisan,” that doesn’t mean that there isn’t plenty of opposition out there, which I guess kind of answers my question of why this took so long. I imagine we expect this — now that it’s in a package — to go on the next government funding bill, which should be in January, right? That’s what we’re looking for?

Weber: Yes, it should go in the next government possible spending bill, but who knows? Are we headed towards another shutdown when that happens? I mean, we’ll have to see. And I just want to echo what Alice said. I mean, not doing a lot of lawmaking this year does have real consequences. I mean, when we talk about these site-neutral payments — I’ll never forget when I was at KHN [KFF Health News], I wrote a story about a seamstress who had rheumatoid arthritis, and she went to the same doctor’s office every time to get arthritis shots. Very normal treatment, right? Her doctor’s office moved up one floor and her bill went up 10 times. Her shots went from $30 to $300 because they were then considered an in-hospital facility. So when we talk about things like site-neutral payments, which are jargony words, they disguise what happens to everyday Americans and the actual cost — literal cost, physical and emotional and financial — of legislation like this not making it through.

Rovner: And I think the biggest irony is that when you look at public opinion polls, Democrats and Republicans are so divided on so many things, but one of the things that they are not divided on at all is that health care costs too much and the Congress should be doing things to make health care cost less. So these are things that, if they can get them over the finish line, would actually be popular.

Well, speaking of things Congress was supposed to do before the start of the fiscal year, Riley, you’re watching the progress of another bill we’ve been following, the SUPPORT [Substance Use Disorder Prevention that Promotes Opioid Recovery and Treatment for Patients and Communities] Act, that authorized programs to fight the opioid epidemic. Remember the opioid epidemic? What’s the status of that bill?

Griffin: Yeah, great question. So more than two months ago, provisions from a major 2018 opioid law, the SUPPORT Act, which provides grants for states to pay prevention, treatment, and recovery services for people with opioid use disorders, expired. But on Tuesday, the House and Senate HELP Committee advanced that legislation in an effort to expand treatment for opioid use disorder amid the ongoing epidemic. And, as you’d mentioned, this is known as the Support for Patients and Communities Reauthorization Act and the Modernizing Opioid Treatment Access Act.

And we saw the House overwhelmingly vote to reauthorize the law. And, meanwhile, the Senate HELP Committee also approved its version of the bill, setting up consideration by the full Senate and likely enactment of a new law quite soon. Sen. Bernie Sanders of Vermont said that passing this $4.3 billion piece of legislation to reauthorize and expand the SUPPORT Act would be a huge success and will do a lot to increase the number of substance abuse counselors and mental health professionals.

Rovner: But again, not likely before the end of the year, this bill that should have been done before Oct. 1.

Griffin: Precisely. But again, also a place where you see that bipartisan support. I mean, the opioid epidemic is something that is coming up on the debate stage. Fentanyl is a buzzword that is being used by Democrats and Republicans alike. And not just to talk about the state of affairs here in the United States, where more than 100,000 people die every year of overdose-related deaths, but also to talk about immigration reform and China, right? These topics have all become a swirling part of the discourse on the opioid epidemic, and it’s something to watch going into the 2024 election.

Rovner: Yes. Something else that is linked to the whole opioid epidemic is this concern about life expectancy. We’ve had some new statistics on life expectancy, which is creeping back up now that deaths from covid are falling off, but not as fast as in many other industrialized countries. Women’s life expectancy is still substantially longer than men’s. What is up with this and what is holding the U.S. back? Why is our life expectancy still so much worse than people across the pond?

Weber: I think there’s a lot of things at play in the U.S. and a lot of it has to do … right now, we’re seeing it creep up because of the covid numbers. But what covid exposed was an absolute failure of primary care across the United States, an absolute failure of public health, an absolute failure to confront the fact that the vast majority of the reason that our life expectancy is so much worse than other countries is because of our chronic disease problem that is not getting dealt with.

And frankly, post-covid, it’s not like we’ve seen some sort of ginormous wake-up call overhaul either. I mean, this is the reality that we’re continuing to live in. So while it is heartening to see that the life expectancy numbers are changing a little bit because the covid death rates have gone down, I think the U.S. still has to grapple with the fact that we live in a country that is not addressing these issues. And I mean, I’ve talked about this on this podcast, but to reiterate again, politics does play into this.

As you see, there are … red states’ life expectancies are typically lower than blue states’ life expectancies. And that’s due in part to the fact that in the 1980s, Reagan and Congress allowed the states to decide how they were going to spend their public health and safety-net dollars in different ways, and we’ve seen that play out in this grand experiment over the last couple decades. And, again, doesn’t seem to be much reckoning with that either. So I think these life expectancy trends, where the U.S. lags behind other countries, are going to continue.

Rovner: Yeah, I wanted to actually call out a piece that Paul Starr at Princeton wrote about these red state-blue state differences because a lot of them we had talked about. Red states had earlier death rates because of the opioid epidemic and fentanyl and these deaths of despair.

But, actually, what the research that Paul Starr looked at was more what you’re saying, Lauren, which is that the states that enrolled children in Medicaid earlier are having better outcomes now, 30, 40, 50 years later, than the states that didn’t. And, also, the states that had restrictive gun laws are having longer life expectancies than states that didn’t. Riley, you’re nodding your head.

Griffin: It’s an amazingly unique American paradox to see greater spending on health care and yet shorter lives compared to other countries. Wealthy nations which spend half per person on health care compared to the United States are seeing their citizens outlive Americans by an average of more than five years. I mean, that data when you put it together is just so jarring. And it, as Lauren has been saying, has been cementing itself before the covid pandemic, which obviously had such a devastating toll.

But as we start to see that trend shift, where in 2022 life expectancy at birth was 77.5 years compared to 76.4 the year prior, that change is largely due to a decrease in covid deaths. We’re still seeing deaths from flu, pneumonia, fetal and infant conditions continue to rise. So the infectious disease front doesn’t look good in other spaces. And as you mentioned, Lauren, these chronic diseases that really set the U.S. apart from its peers, GDP-size-wise, is just so jarring.

Rovner: Finally, this week, because there isn’t already enough for us to worry about with the health system, cyberattacks appear on the upswing. Every week we hear about hospital IT systems literally being held for ransom and hacks into databases with our very most sensitive personal information, like 23andMe. Riley, you have a story about a hack at HHS [the Department of Health and Human Services] that was more serious than we thought.

Griffin: Yeah, thank you for allowing me to speak about this story. So my colleague Jordan Robertson and I investigated a cyberattack that hit HHS at the very outset of the pandemic. And at the time, we found that it was downplayed by department leadership. So only years later, it’s three-plus years down the road, we’ve learned through on-record interviews and other discussions that it was actually quite an unusual and rather concerning case. Some of the officials described the attack as an attempt by a nation-state to break into the department managing the U.S. covid response just as HHS’ IT staff were temporarily loosening security to its more than 80,000 employees so that they could log in remotely. They used a common technique, which is called a DDoS, or a distributed denial-of-service attack, where hackers disrupt a computer network by flooding it with traffic.

Now, typically when people think of this kind of attack, it’s meant to overwhelm and then shut down the system. But what we learned through interviews with these officials is that it was more of an act of espionage. Rather than shutting down the system, it was intended to map HHS’ network. So a pretty concerning story to say the least. And another novel part of this is that the officials, the Chief Information Officer Jose Arrieta and Chief Information Security Officer Janet Vogel, said the attack began ramping up as early as October of 2019.

So a lot of strange pieces at play. Those two officials attribute the attack to China, though HHS has said it did not come to that conclusion. And the Office of Inspector General complicated the picture further by saying that they actually found it was connected to a person, an entity in Ukraine. So not all the questions are yet answered, but I think the takeaway from this story is that when a cyberattack hits, not everything is as it seems.

Rovner: Yeah, OK. All right, one more thing that we will consider on our watch list. All right, well, that is this week’s news. Now we will play my interview with Jen Golbeck about her book on the science of dog love, and then we’ll come back and do our extra credits.

I am so excited to welcome to the podcast Jen Golbeck, a computer science professor at the University of Maryland who studies the internet for a living. She does serious research about some pretty grim corners of the online community, which we will talk about in a moment. But she’s probably better known on social media as “GR Mom,” head wrangler of The Golden Ratio media universe that brings the joy of her ever-changing pack of special-needs golden retrievers to her hundreds of thousands of followers every day, myself included, I have to say. Jen, thanks so much for being here.

Jen Golbeck: My pleasure. Thank you.

Rovner: So we’ll get to your new book, “The Purest Bond,” in a moment. But first, I know you spent a lot of time tracking the behavior of some of the most unpleasant and reprehensible people online. Is that part of why you started your little social media corner of happiness?

Golbeck: Yes. So I am very on social media. I’m a computer scientist by training. And after [President Donald] Trump got elected, everybody was angry online. Regardless of who you voted for, everyone was angry. And I just found myself needing an escape from that and I couldn’t really find it. And at the time, I had four golden retrievers and I was like, you know what? That can’t get much happier, so let’s just start putting pictures of them up.

So it was as much therapy for me as anything else, but it really ended up resonating with people and bringing together this wonderful community of people. And anybody who’s not nice, we block and keep them out of there. Things have not necessarily gotten better, but different, since 2016, 2017, and people still need that escape, including me. So yeah, it’s been a real balm in contrast to my regular research work to do that.

Rovner: Which is, you should say, looking at how hate spreads online. Is that a lot of what you do?

Golbeck: That’s pretty close, yeah. I think my technical term I use is malicious online behaviors. So we look at hate speech and extremism, misinformation, conspiracy theories, all that kind of stuff. So dogs are a really nice antidote to that.

Rovner: So with all the terrible things that go on online, I’m fascinated by the devotion of little groups of people who share interests and love to interact with each other. I still obviously have to be on Twitter, or whatever it’s called now, for my job. And I remember when I first met Matt Nelson, actually at your live show, who’s the creator of WeRateDogs (dogrates), I thanked him for making the online hellscape just a little bit less hellish. Do we underestimate how much online relationships can benefit people as much as cause mischief?

Golbeck: Yeah. The research on this is so interesting. Because since Facebook became a thing, we’ve been really interested in what’s the impact, the psychological impact, of social media? And the answer is always it’s super mixed, which is a kind of an academic cop-out answer, but totally true. There’s all kinds of ways that, obviously, the internet can harm people, and we see that now especially with Instagram and girls with eating disorders and body image issues. We know that generally people who spend a lot of time on social media are less happy than people who don’t.

So there are unquestionably some negative impacts, but it’s a little bit easy to forget, and some people weren’t even alive, when we didn’t have access to communities online and how profoundly isolating life could be and how difficult it was to get access to anything, especially social support. So now you can be in a very rural isolated space and very different from what the social mores of your community would dictate you should be. And that’s something where, in the 1990s, you probably would’ve ended up very lonely and depressed and totally unsupported. And with the internet, you’re not. You can find all kinds of people in exactly the same position as you and get that social support. And that’s an extreme example of what we find, which is you can form real relationships online. And that’s why I tend to resist this distinction between the real world and online. The real world absolutely exists online, and I’ve found lots of real friends who I’ve met offline, but also just keep up relationships with online, and it’s so important.

Rovner: So you and your husband, Ingo, don’t just take in rescue golden retrievers, you take in rescue golden retrievers that are often older and sicker and who have been the most neglected and the most mistreated. Was that something intentional or did it just happen?

Golbeck: It a little bit evolved that way. I got to say, I am always drawn to the seniors, and when I started fostering really wanted to get some seniors. That’s not most of the dogs that come into rescue, actually. It’s usually young dogs who people got and weren’t prepared for, and we fostered 20 of those dogs, too. But, eventually, we did get a pair of seniors. I always thought three dogs was too many, so we would have three with a foster. But I was like, I’ll never actually have three dogs. And then we got this bonded pair. Both were seniors, and so there were four dogs. And as soon as they showed up at my house, I was like, oh, they have always lived here. Now I have four dogs. What am I going to do? And it was great, of course. And about a year later, the rescue was like, “We have this 13-year-old and her people don’t want her. Will you take her?” And I asked my husband, I’m like, “What do you think about five dogs?” And he said, “What’s the difference between four and five? It’s fine.” So then we had five kind of old dogs, or old rescues, three of them were old rescues.

And I think, eventually, the rescue group started realizing that I’d just say yes to whatever they would give me. And so the dogs that they were having a hard time finding someone to take, I’d be like, “Yeah, sure, send them over.” It’s been so rewarding, though, to take these dogs who need a lot of love and attention and care and who haven’t been getting it and being able to give them the love and support and medical care that they need. It’s really rewarding. So I was interested, and then we stumbled our way into something that’s turned into a mission for both of us.

Rovner: So I know a lot has been written over the years about the science of how pets can improve human health and vice versa. I actually looked it up. I wrote my first pet therapy story in 1982. I was 5. No, seriously, it was my first job out of college. But you’ve done something with this book that I haven’t really seen before. You’ve merged a lot of the scientific study with some actual practical advice for pet owners. I assume that was very much on purpose.

Golbeck: Yeah. We didn’t want this to be a self-help book or a dog-training book. At the same time, there’s a lot of things that people want to know as they’re discovering the science of how they bond with their dogs. And so we try to work a little bit of tips in there, along with a lot of science and then stories from people who have really seen those benefits in their everyday relationship with their dogs.

Rovner: What’s been the response?

Golbeck: It’s interesting. I was like, I don’t know that all of this is super surprising. There are some surprising results in there. At the same time, what we’re basically saying is that dogs make us feel good and they love us back and we love them a whole lot. And I think anybody who has a dog knows that that’s true. And the response has been consistently people saying, “I was so excited to see my experience reflected in there.”

So we have, for example, a chapter about dogs in the community and how if you have a dog, you meet everybody in your neighborhood by walking your dog. And you don’t even know their names. You maybe know their dogs’ names. And people are like, “Oh yeah, that’s totally it.” But they also feel really validated because we have these feelings about our relationship with our dogs, and some people tell us that we’re crazy. Some people say that we’re making it up. And what people are finding in the book is that there’s actually a ton of really rigorous scientific research to support them having those feelings that they already have. So it’s this great way of being like, “Yes, I’m not crazy. My dog really does love me back. This really is as deep as I feel like it is.” So that’s been a great response that I wasn’t necessarily expecting that’s what it would be.

Rovner: Well, good. Well, Jen Golbeck, thank you for the book. Thank you for all you do. Thank you for what you do for golden retrievers and for the rest of us dog lovers out in the community.

Golbeck: My pleasure. Thanks 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. Alice, why don’t you go first this week?

Ollstein: Yes. I chose a really upsetting and important investigation by my colleague Ariel Wittenberg. It hits at the intersection of health, labor, climate. It’s about mail carriers around the country who are dying from heat exposure. This is actually killing more male carriers than car crashes or dog bites or any of the things you think of being the hazards of that job. And not only is this happening amid soaring temperatures in the summers in a lot of places in the South, but the Postal Service is not following its own rules for training workers on how to notice the signs of dangerous heat exposure and take steps to protect themselves. And not only are they lying, according to these documents she obtained about having done these trainings, they are pressuring these workers to move faster, to not take breaks because of the competition from other private delivery services like Amazon. So really, really important piece.

Rovner: Yeah, and I think also important for everybody who works outside, with climate change. Riley, why don’t you go next?

Griffin: Yes, my colleague Robert Langreth also has a story in this week’s Bloomberg Businessweek issue, and it is titled “The Next Blockbuster Drug Might Be Made in Space.” It’s a fun one. It describes how companies, including Big Pharma names like Eli Lilly, are using microgravity to develop drugs and improve formulations of existing blockbusters. So it’s a fun read. You can find it in print or online.

Rovner: Not everything in tech is bad. Lauren.

Griffin: Not everything is bad.

Weber: I’m continuing the trend of shouting-out my colleagues this week. So a bunch of my colleagues had an investigation titled “Applesauce Lead Cases in Kids Surge Amid Questions on FDA Oversight.” And so we’ve all heard about these applesauce packets for toddlers and babies that were contaminated with lead, but the official FDA numbers say it’s only like 60-something cases, but my colleagues called around the state health departments and they believe it’s at least suspected in over 118 cases, potentially more, which leads to the question of how widespread is all of this.

It lends itself to the questions of: Is the FDA’s oversight enough, especially when it comes to baby food? This is not the first baby food issue we’ve obviously had in the last couple years. It really is just a horror story for everyone. I mean, you’re just trying to feed your kids stuff that they like and then they’re sucking on something that could damage their brain development and hurt them for years to come. Really heart-rending storyline, and my colleagues did a great job showing that this is much further-reaching than has been previously disclosed.

Rovner: So another continuing theme of this year, the FDA’s regulation of food as opposed to the FDA’s regulation of drugs and how that sometimes falls by the wayside. Well, my story is also from The Washington Post, by Kent Babb. It’s called “They Watched Their Husbands Win the Heisman — Then Lost Them to CTE.” And it’s a really wrenching story about how the very best players in college football have something else in common besides athletic talent: That, over the years, more and more have joined the not-so-exclusive club of ex-players with brain injuries and related behavioral … excuse me. Over the years, more and more have joined the not-so-exclusive club of ex-players with brain injuries and related behavioral issues.

It’s the serious dark side of a sport that is so beloved in the United States, including by me, and that deserves not just a hard look but action to prevent some of these horrendous aftereffects.

OK, 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, as always, to Francis Ying for his technical expertise and amazing patience. 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. Alice.

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

Rovner: Lauren.

Weber: I’m @LaurenWeberHP on X and clearly need to improve the rest of my social media profiles.

Rovner: Riley.

Griffin: You can find me on Threads and X @rileyraygriffin.

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

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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.

USE OUR CONTENT

This story can be republished for free (details).

Guyana’s Minister of Health, Dr Frank Anthony and the Ministry of Health on Saturday hailed the contributions of former Director of the Pan American Health Organization (PAHO) and World Health Organization (WHO) Regional Director for the Americas, Dr Carissa Etienne who passed away suddenly on Friday. “The Minister of Health, Dr Frank Anthony is saddened ...

“Surprisingly fine,” said Conway-Anderson, a 36-year-old agroforestry professor at the University of Missouri. There was an 11-millimeter precancerous polyp that the doctors had discovered, but they’d snipped it out of her colon and recommended surveillance every three years. “Obviously, it’s big news to hear, but grateful this seems to be manageable. I’ll do it,” she said. “Then the bill came.”

She was being charged nearly $12,000 for the procedure after insurance. Conway-Anderson’s head spun. She couldn’t understand how it could cost so much, especially when she thought the colonoscopy was preventative for cancer and thus covered. “I was floored,” she said. “I was like I can’t pay this. I don’t know what you want me to do.”

Continue to STAT+ to read the full story…

At 19, Velasquez Lopez knows a lot about ammunition because many of his friends own guns, he said. They carry to defend themselves in East Oakland, where metal bars protect shop windows and churches stand behind tall, chain-link fences.

Some people even hide AR-15-style assault weapons down their pants legs, he said.

“It doesn’t feel safe. Wherever you’re at, you’re always anxious,” said Velasquez Lopez, who dreams of leaving the city where he was born. “You’re always wondering what’s going to happen.”

Last year, two gunmen in ski masks stormed his high school, killing a school district carpenter and injuring five other adults, including two students.

Oakland won acclaim just a few years ago as a national model for gun violence prevention, in part by bringing police and community groups together to target the small number of people suspected of driving the gun violence.

Then, in 2020, the covid-19 pandemic shut down schools, businesses, and critical social services nationwide, leaving many low-income people isolated and desperate — facing the loss of their jobs, homes, or both. The same year, police murdered George Floyd, a Black man in Minneapolis, which released pent-up fury over racial discrimination by law enforcement, education, and other institutions — sparking nationwide protests and calls to cut police funding.

In the midst of this racial reckoning and facing the threats of an unknown and deadly virus, Americans bought even more guns, forcing some cities, such as Raleigh, North Carolina; Chicago; New York City; and Oakland, to confront a new wave of violent crime.

“There was emotional damage. There was physical damage,” said James Jackson, CEO of Alameda Health System, whose Wilma Chan Highland Hospital Campus, a regional trauma center in Oakland, treated 502 gunshot victims last year, compared with 283 in 2019. “And I think some of this violence that we’re seeing is a manifestation of the damage that people experienced.”

Jackson is among a growing chorus of health experts who describe gun violence as a public health crisis that disproportionately affects Black and Hispanic residents in poor neighborhoods, the very people who disproportionately struggle with Type 2 diabetes and other preventable health conditions. Covid further eviscerated these communities, Jackson added.

While the pandemic has retreated, gun violence has not. Oaklanders, many of whom take pride in the ethnic diversity of their city, are overwhelmingly upset about the rise in violent crime — the shootings, thefts, and other street crimes. At town halls, City Council meetings, and protests, a broad cross-section of residents say they no longer feel safe.

Programs that worked a few years ago don’t seem to be making a dent now. City leaders are spending millions to hire more police officers and fund dozens of community initiatives, such as placing violence prevention teams at high schools to steer kids away from guns and crime.

Yet gun ownership in America is at a historic high, even in California, which gun control advocates say has the strictest gun laws in the country. More than 1 million Californians bought a gun during the first year of the pandemic, according to the latest data from the state attorney general.

As Alameda County District Attorney Pamela Price told an audience at a September town hall in East Oakland: “We are in a unique, crazy time where everybody in this community has a gun.”

The Streets of Oakland

Oakland’s flatlands southeast of downtown are the backdrop of most of the city’s shootings and murders.

The area stands in stark contrast to the extreme wealth of the millionaire homes that dot the Oakland Hills and the immaculate, flower-lined streets of downtown. The city’s revived waterfront, named after famed author and local hero Jack London, draws tourists to trendy restaurants.

On a Saturday night in August, Shawn Upshaw drove through the flatlands along International Boulevard, past the prostitutes who gather on nearly every corner for at least a mile, and into “hot spots,” where someone is shot nearly every weekend, he said.

“When I grew up, women and kids would get a pass. They wouldn’t get caught in the crossfire,” said Upshaw, 52, who was born and raised in Oakland. “But now women and kids get it, too.”

Upshaw works as a violence interrupter for the city’s Department of Violence Prevention, which coordinates with the police department and community organizations in a program called Ceasefire.

When there’s a shooting, the police department alerts Upshaw on his phone and he heads to the scene. He doesn’t wear a police uniform. He’s a civilian in street clothes: jeans and a black zip-up jacket. It makes him more approachable, he said, and he’s not there to place blame, but rather to offer help and services to survivors and bystanders.

The goal, he said, is to stop a retaliatory shooting by a rival gang or grieving family member.

Police also use crime data to approach people with gang affiliations or long criminal records who are likely to use a gun in a crime — or be shot. Community groups follow up with offers of job training, education, meals, and more.

“We tell them they’re on our radar and try to get them to recognize there are alternatives to street violence,” said Oakland Police Department Capt. Trevelyon Jones, head of Ceasefire. “We give them a safe way of backing out of a conflict while maintaining their street honor.”

Every Thursday at police headquarters, officers convene a “shooting review.” They team up with representatives from community groups to make house calls to victims and their relatives.

After the program launched in 2012, Oakland’s homicides plummeted and were down 39% in 2019, according to a report commissioned by the Oakland Police Department.

Then covid hit.

“You had primary care that became an issue. You had housing that became an issue. You had employment that became an issue,” said Maury Nation, an associate professor at Vanderbilt University. “It created a surplus of the people who fit that highest risk group, and that overwhelms something like Ceasefire.”

With ever-rising housing prices in Oakland and across California, homeless encampments have multiplied on sidewalks and under freeway bypasses. The city is also bracing for the loss of jobs and civic pride if the Oakland Athletics baseball team relocates after April 2024, following departures by the NBA’s Golden State Warriors in 2019 and the NFL’s Raiders in 2020.

“Housing, food insecurity, not having jobs that pay wages for folks, all can lead to violence and mental health issues,” said Sabrina Valadez-Rios, who works at the Freedom Community Clinic in Oakland and teaches a high school class for students who have experienced gun violence. Her father was fatally shot outside their Oakland home when she was a child. “We need to teach kids how to deal with trauma. Violence is not going to stop in Oakland.”

Shared with permission from The Trace.

Homicides in Oakland climbed to 123 people in 2021, police reports show, dipping slightly to 120 last year. Police have tallied 108 homicides as of Nov. 12 this year. Neither the police department nor the city provided statistics on how many of those killings involved firearms, despite repeated requests from KFF Health News.

Experts also blame the rise in killings in Oakland and other American cities on the prevalence of gun ownership in the U.S., which has more guns than people. For all the pandemic disruption worldwide, homicide rates didn’t go up in countries with strict gun laws, said Thomas Abt, director of the Center for the Study and Practice of Violence Reduction at the University of Maryland.

“We saw gun violence, homicides, shootings spike up all around the country. And interestingly, it did not happen internationally,” Abt said. “The pandemic did not lead to more violence in other nations.”

Unrest in Oakland

Oakland residents are angry. One by one, business owners, community organizers, church leaders, and teenagers have stood at town halls and City Council meetings this year with an alarming message: They no longer feel safe anywhere in their city — at any time.

“It’s not just a small number of people in the evening or nighttime. This is all hours, day and night,” said Noha Aboelata, founder of the Roots Community Health Center in Oakland. “Someone’s over here pushing a stroller and someone’s getting shot right next to them.”

One morning in early April, automatic gunfire erupted outside a Roots clinic. Patients and staff members dropped to the ground and took cover. After the shooting stopped, medical assistants and a doctor gave first aid to a man in his 20s who had been shot six times.

Everyone is blaming someone or something else for the bloodshed.

Business owners have had enough. In September, Target announced it would close nine stores in four states, including in Oakland because of organized retail theft; the famed Vietnamese restaurant Le Cheval shut its doors after 38 years, partly blaming car break-ins and other criminal activity for depressing its business; and more than 200 business owners staged an hours-long strike to protest the rise in crime.

The leadership of the local NAACP, the nation’s oldest civil rights organization, made headlines this summer when it said Oakland was seeing a “heyday” for criminals, and pointed to the area’s “failed leadership” and “movement to defund the police.”

“It feels like there’s a dark cloud over Oakland,” said Cynthia Adams, head of the local chapter, which has called on the city to hire 250 more police officers.

Price, a progressive elected last year, already faces a recall effort, in part because she rejects blanket enhanced sentences for gangs and weapons charges, and has declined to charge youths as adults.

The new mayor, Sheng Thao, was criticized for firing the police chief for misconduct and breaking a campaign promise to double funding at the city’s Department of Violence Prevention. In her first State of the City address last month, Thao described the surge in crime as “totally and completely unacceptable,” and acknowledged that Oaklanders are hurting and scared. She said the city has expanded police foot patrols and funded six new police academies, as well as boosted funding for violence prevention and affordable housing.

“Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire,” Thao said.

Many in the community, including Valadez-Rios, advocate for broader investment in Oakland’s poorest neighborhoods over more law enforcement.

City councils, states, and the federal government are putting their faith in violence prevention programs, in some cases bankrolling them from nontraditional sources, such as the state-federal Medicaid health insurance program for low-income people.

Last month, California’s Democratic Gov. Gavin Newsom approved an 11% state tax on guns and ammunition, and $75 million of the revenue annually is expected to go to violence prevention programs.

Although these programs are growing in popularity, it is unclear how successful they are. In some cases, proven programs that involve law enforcement, such as Ceasefire, were cut back or shelved after George Floyd was murdered, said Abt, the Maryland researcher.

“The intense opposition to law enforcement means that the city was unwilling to use a portion of the tools that have been proven,” Abt said. “It’s good to work on preventing youth violence, but the vast majority of serious violence is perpetrated by adults.”

Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire.

Oakland Mayor Sheng Thao

A Focus on Schools

Kentrell Killens, interim chief at the Oakland Department of Violence Prevention, acknowledges that young adults drive Oakland’s gun violence, not high school kids. But, he said, shootings on the streets affect children. Of the 171 homicides in 2019 and 2020, 4% of victims were 17 or under, while 59% were ages 18 to 34, according to the Oakland Police Department.

The number of children injured in nonfatal shootings is also worrisome, he said. Roughly 6% of victims and 14% of suspects in nonfatal shootings were 17 or younger in 2019 and 2020.

“We’ve seen the impact of violence on young people and how they have to make decisions around what roles they want to play,” said Killens, who spent a decade as a case manager working with schoolkids.

By being in the schools, “we can deal with the conflicts” that could spill into the community, he added.

At Fremont High School, Principal Nidya Baez has welcomed a three-person team to her campus to confront gun violence. One caseworker focuses on gun violence and another on sexual assaults and healthy relationships. The third is a social worker who connects students and their families to services.

They are part of a $2 million city pilot program created after the Oakland School Board eliminated school-based police in 2020 — about one month after George Floyd was killed and after a nine-year push by community activists to kick police out of schools.

“We’ve been at a lot of funerals, unfortunately, for gang-related stuff or targeting of kids, wrong-place-wrong-time kind of thing,” said Baez, whose father was shot and injured on his ice cream truck when she was a child.

When Francisco “Cisco” Cisneros, a violence interrupter from the nonprofit group Communities United for Restorative Youth Justice, arrived at Fremont in January, students were wary, he said. Many still are. Students are hard-wired not to share information — not to be a “snitch” — or open up about themselves or their home life, especially to an adult, Cisneros said. And they don’t want to talk to fellow students from another network, group, or gang.

“If we catch them at an early age, right now, we can change that mindset,” said Cisneros, who was born and raised in Oakland.

Cisneros pulls from his past to build a rapport with students. This summer, for example, when he overheard a student chatting on the phone to an uncle in jail, Cisneros asked about him. It turns out Cisneros and the boy’s uncle had grown up in the same neighborhood.

That was enough to begin a relationship between Cisneros and the student, “J,” who declined to be identified by his full name for fear of retribution. The 16-year-old credits Cisneros, whom he describes as “like a dad,” with keeping him engaged in school and employed with summer jobs — away from trouble. Still, he regularly worries about making a wrong move.

“You could do one thing and you could end up in a situation where your life is at risk,” J said in Cisneros’ office. “You go from being in school one day to being in a very bad, sticky situation.”

The program is underway in seven high schools, and Cisneros believes he has helped prevent a handful of conflicts from escalating into gun violence.

A Better Life

After his school counselor was shot at Rudsdale High School in September 2022, Velasquez Lopez heard that the man and other victims were treated at nearby Highland Hospital.

“Seeing him get hurt, he obviously needed medical attention,” Velasquez Lopez said. “That made it obvious I could help my community if I were to be a nurse to help people that live around my area.”

When a recruiter from the Alameda Health System came to campus to promote a six-week internship at Highland Hospital, Velasquez Lopez applied. It was, he said, a dramatic step for a student who had never cared about school or sought vocational training.

Over the summer, he volunteered in the emergency room, learned how to take a patient’s vitals, watched blood transfusions, and translated for Spanish-speaking patients.

Velasquez Lopez, who graduated this year, is now looking for ways to get a nursing degree. The cost of college is out of reach at the moment, but he knows he doesn’t want to stay in a city where you can easily buy a gun for $1,000 — or half that, if it’s been used in a crime.

Velasquez Lopez said he has bigger goals for himself.

Young people in East Oakland “always feel like we’re trapped in that community, and we can’t get out,” he said. “But I feel like we still have a chance to change our lives.”

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.

USE OUR CONTENT

This story can be republished for free (details).

Hannah Fegley of Silver Spring, Md., says she spent seven hours on the phone last month — the eighth month of her pregnancy — with insurers, pharmacy benefit managers and half a dozen pharmacies trying to obtain Pfizer’s new RSV shot, called Abrysvo.

The Health 202 is a coproduction of The Washington Post and KFF Health News.

Subscribe Now

Respiratory syncytial virus puts up to 2 percent of babies in the hospital each year because their tiny airways don’t tolerate the inflammation. While most recover with supportive care, as many as 300 kids under 5 years old die each year and the majority of them are under 1. A bad case of RSV in infancy can mean a lifetime of asthma.  

Fegley says two of her friends saw their babies land in intensive care last year, a bad one for RSV. So she was eager to get the shot; she has a 4-year-old in preschool who, she says, “brings home every virus.” 

One of KFF Health News’ signature projects is the Bill of the Month, where readers and listeners send us stories about how the U.S. health system is failing them. Often, the problems they encounter connect directly to holes in government policy. Fegley’s story shows how regulators’ recommendations trickle down into a fragmented health system — leaving patients in the lurch.   

The Pfizer vaccine (list price: about $300), confers immunity to the fetus through the mother. As an alternative, the Advisory Committee on Immunization Practices also recommended AstraZeneca’s Beyfortus (about $500), a monoclonal antibody against the virus to administer to babies after birth. Fegley’s obstetrician didn’t carry the vaccine. So she gave Fegley a prescription to get it at a pharmacy, predicting (correctly) that many pediatricians wouldn’t stock Beyfortus.

Pharmacies typically stock RSV vaccines because the CDC also recommends them for people over 60 — a large and lucrative market, even though scientists and public health authorities agree the more obvious use is in infants. There are two different RSV vaccines approved for older Americans: the Pfizer shot, which is also approved for pregnant women, and a GlaxoSmithKline shot that is not. 

Fegley’s insurer uses CVS-Caremark as its pharmacy benefits manager, which of course uses CVS Pharmacy. (Both are part of CVS Health Corp.) And CVS, she discovered, only stocks the GSK vaccine. 

(Is your head spinning yet? Hers was. And she is health-care literate —  a social worker whose husband is a doctor. “We’re told we have choice, but we really do not,” she said.) 

After a phone complaint, a Caremark representative granted Fegley an “override” allowing her to try other pharmacies. She called them, but many said they’d only give the Pfizer shot to people 60 and over.

“We’re currently completing the final steps needed to offer the maternal RSV vaccine and hope to make it available at our pharmacies soon,” said Matt Blanchette, a CVS Health spokesman representing Caremark and the pharmacy. “Patients should check with their insurer to confirm if the vaccine is covered by their individual plan.”

One smaller pharmacy said by phone it had a dose for Fegley, but when they checked her insurance at the counter, it was denied. She filled out forms to get a shot at both Costco and Walgreens. Denied. 

She didn’t want to pay $300 or more for the shot out-of-pocket because she knew that under Obamacare, most insurers must cover all ACIP-recommended vaccines free of charge. So how can it be so hard to obtain a shot that the FDA and CDC say can save babies’ lives? Let us count the ways.

• One: The Affordable Care Act gives insurers more than a year after a new vaccine wins ACIP’s stamp of approval to start covering it. 
• Two: To keep costs down, pharmacies try to get deals on similar products by contracting with just one drugmaker. GSK didn’t finish its application to the FDA for approval to give its shot to pregnant women.
• Three: Many pharmacies don’t like giving pregnant women shots, fearing liability.
• Four: Both obstetricians (for the Pfizer shot) and pediatricians (the monoclonal antibody) have a hard time stocking such expensive medicines  — particularly with insurance reimbursement uncertain.

“Cost is the big issue,” said Steven Abelowitz of Coastal Kids, a big California group practice. “For us, it was a tough, risky decision: We’ve spent millions to order batches and we don’t know if we’ll get reimbursed,” he said. “Smaller practices just don’t have the money.”

There’s a happy-ish ending: This month, a Caremark representative left Fegley a voice mail saying she had an override to get the Pfizer vaccine at Costco for $105 out of pocket. If she wanted it free, the rep added, she should contact her husband’s employer. 

With some resentment, she says, she paid for the shot.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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.

USE OUR CONTENT

This story can be republished for free (details).

The WHO officially declared smallpox eradicated in 1980, and it remains the only human infectious disease ever to have been eradicated.

Among infectious-disease doctors like me, Banu is famous as a symbol of the power of science and modern medicine.

And yet, beyond that distinction, Banu has largely been forgotten by the public. That fate is a reminder that, well after a global pandemic recedes from headlines in wealthy countries, its survivors have needs that go unmet. Although Banu survived smallpox, she’s been sickly her whole life. She was once bedridden for three months with fevers and vomiting, but she couldn’t afford to see a good doctor. The doctor she could afford, she recalled, prescribed her cooked fish heads. Banu also complains of poor vision: “I cannot thread a needle, because I cannot see clearly,” she told me, via a translator, during an interview in Digholdi, the village where she lives.

“I cannot examine the lice on my son’s head and cannot read the Quran well because of my vision,” she said.

In the years following smallpox eradication, journalists from all over the world traveled to interview Banu, but they petered out years ago. “Mother is so famous, but they do not take any follow-up of Mom to know whether she is in a good or bad state,” her middle daughter, Nazma Begum, told me.

Banu and her family are proud of her place in history, but their role in the eradication of smallpox speaks to the limits of merely fighting diseases. In his biography of the doctor and philanthropist Paul Farmer, author Tracy Kidder recorded a Haitian saying: “Giving people medicine for TB and not giving them food is like washing your hands and drying them in the dirt.”

After Banu and her family survived smallpox, the rest of the world dried its hands in the dirt — just as it did for the poorest victims of covid-19 and later the most marginalized people with mpox, formerly known as monkeypox.

I traveled to South Asia to speak with aging public health workers and smallpox survivors in South Asia for the audio-documentary podcast “Epidemic: Eradicating Smallpox.”

To meet Banu, I flew 14 hours to Delhi and another two hours the next day to Dhaka, then took a five-hour drive to Barishal, followed the next day by a 90-minute ferry ride and a two-hour drive to arrive in Digholdi. Banu and her family — her husband, their three daughters, and their son — share a one-room bamboo-and-corrugated-metal home with a mud floor. The home, which lacks indoor plumbing, is divided down the middle by a screen and a curtain. Water leaks in through the roof, soaking their beds. A bare bulb hangs from a wire overhead. Her in-laws used to live with them, too, but they have passed away.

Women in rural Bangladesh rarely work outside the home. Banu’s husband, Rafiqul Islam, pedals a rickshaw. Some days he earns nothing. On a good day, he might make 500 taka (not quite $5). Although the World Health Organization arranged for a plot of land in her name, Banu said, the family has nowhere to cultivate. “They gave me the land, but the river consumes that. Some of it is in the river,” she said. Cyclones and rising sea levels have led to coastal erosion and saltwater intrusion, and there have also been land disputes.

Begum, now 23, completed a year of college but then dropped out. Banu and her husband couldn’t afford the fees. Instead, they arranged for her to marry. Her mother’s fame “did not help me in any way in my studies or financially,” Begum told me.

The family’s financial life is precarious. Five hundred taka used to buy a 10-kilogram bag of rice and vegetables. During my visit in 2022, the instability of the Russia-Ukraine war created fluctuating oil prices, and Banu said that amount was enough to pay only for the rice.

Banu is well aware that thanks to vaccination, millions of people no longer die of smallpox and other infectious diseases. By one estimate, the eradication of smallpox has prevented at least 5 million deaths around the world each year. Vaccines remain one of the most cost-effective and lifesaving gifts of modern medicine. The Centers for Disease Control and Prevention estimates that the U.S. saves 10 times what it spends on childhood vaccination. But all this is cold comfort to Banu when she and her family are struggling to survive.

Every public health crisis leaves people behind. When I worked as an Ebola aid worker in Guinea in 2015, residents asked why I cared so much about Ebola when local women were hemorrhaging in childbirth and didn’t have enough to eat. They were right not to trust our efforts. Why should they upend their lives to help us defeat Ebola? They knew their lives wouldn’t be materially better when we declared victory and left, as we had done so many times before as soon as our own interests were protected. Their prediction was correct.

As the coronavirus pandemic winds down in the United States, Banu’s life is a reminder that illness has a long tail of consequences and doesn’t end with a single shot. The world’s most powerful nation hasn’t ensured equitable access for its own citizens to health care and lifesaving tools such as covid vaccines, Paxlovid, and monoclonal antibodies. The resulting disparities will get worse as the federal government finishes turning America’s emergency covid response over to the routine health care system. Many Americans can’t afford to stay home when they or their children are sick. Families lack support to care for young or elder family members or people with medical illnesses or disabilities. Many say their biggest worry is paying for groceries or gas to get to work.

Their plight is less extreme than Banu’s, but their suffering is real — and it is magnified worldwide. As long as vulnerable communities are deprived of holistic, comprehensive responses to mpox, covid, Ebola, or other public health emergencies to come, these people will have a reason to be suspicious, and enlisting their help to fight the next crisis will be that much harder.

A version of this article first appeared in The Atlantic in August 2022.

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.

USE OUR CONTENT

This story can be republished for free (details).

The world is entering a new era of vaccines. Following the success of covid-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.

The most recent arrivals — as anyone on the airwaves or social media knows — are several new immunizations against respiratory syncytial virus, or RSV.

These shots are welcome since RSV can be dangerous, even deadly, in the very old and very young. But the shots are also expensive — about $300 for those directed at adults, and up to $1,000 for one of the shots, a monoclonal antibody rather than a traditional vaccine, intended for babies. Many older vaccines cost pennies.

So their advent is forcing the United States to face anew questions it has long sidestepped: How much should an immunization that will possibly be given — maybe yearly — to millions of Americans cost to be truly valuable? Also, given the U.S. is one of two countries that permit direct advertising to consumers: How can we ensure the shots get into the arms of people who will truly benefit and not be given, at great expense, to those who will not?

Already, ads on televisions and social media show active retirees playing pickleball or going to art galleries whose lives are “cut short by RSV.” This explains the lines for the shot at my local pharmacy.

But indiscriminate use of expensive shots could strain both public and private insurers’ already tight budgets.

Other developed countries have deliberate strategies for deciding which vulnerable groups need a particular vaccine and how much to pay for it. The U.S. does not, and as specialized vaccines proliferate, public programs and private insurers will need to grapple with how to use and finance shots that can be hugely beneficial for some but will waste precious health dollars if taken by all.

A seasonal viral illness, RSV can cause hospitalization or, in rare cases, death in babies and in people age 75 or older, as well as those with serious underlying medical conditions such as heart disease or cancer. For most people who get RSV, it plays out as a cold; you’ve likely had RSV without knowing it.

But RSV puts about 2% of babies under age 1 in the hospital and kills between 100 and 300 of those under 6 months, because their immune systems are immature and their airways too narrow to tolerate the inflammation. Merely having a bad case of RSV in young childhood increases the risk of long-term asthma.

That’s why Barney Graham, the scientist who spent decades at the government’s National Institutes for Health perfecting the basic science that led to the current shots, said: “The most obvious use is in infants,” not adults.

That’s also why European countries trying to figure out how best to use these vaccines without breaking the bank focused first on babies and determining a sensible price. Though more of the very old may die of RSV, the years of life lost are much greater for the very young. (Babies can get the monoclonal antibody shot or gain protection through a traditional vaccine given to the mother near the end of pregnancy, conferring immunity through the womb.)

A consortium of European experts led by Philippe Beutels, a professor in health economics at the University of Antwerp in Belgium, calculated that the shots would only be “worth it” in terms of the lives saved and hospitalizations averted in infants if the price were under about $80, he said in a phone interview. That’s because almost all babies make it through RSV with supportive care.

The calculation will be used by countries such as Belgium, England, Denmark, Finland, and the Netherlands to negotiate a set price for the two infant shots, followed by decisions on which version should be offered, depending partly on which is more affordable.

They have not yet considered how to distribute the vaccines to adults — considered less pressing — because studies show that RSV rarely causes severe disease in adults who live outside of care settings, such as a nursing home.

Why did the United States and Europe approach the problem from opposite directions?

In the U.S., there was a financial incentive: Roughly 3.7 million babies are born each year, while there are about 75 million Americans age 60 and older — the group for whom the two adult vaccines were approved. And about half of children get their vaccines through the Vaccines for Children program, which negotiates discounted prices.

Also, babies can get vaccinated only by their clinicians. Adults can walk into pharmacies for vaccinations, and pharmacies are only too happy to have the business.

But which older adults truly benefit from the shot? The two manufacturers of the adult vaccines, GSK and Pfizer, conducted their studies presented to the FDA for approval in a population of generally healthy people 60 and older, so that’s the group to whom they may be marketed. And marketed they are, even though the studies didn’t show the shots staved off hospitalization or death in people ages 60 to 75.

That led to what some have called a “narrow” endorsement from the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices for people 60 to 75: Patients in that age range could get the shot after “shared clinical decision-making” with a health provider.

It is likely that because of this fuzzy recommendation, some Americans 60 and over with commercial insurance are finding that their insurers won’t cover it. Under Obamacare, insurers are generally required to cover at no cost vaccines that are recommended by the ACIP; however, if a provider recommends vaccination, then it must be covered by insurance.

(In late September, the ACIP recommended immunization of all babies with either the antibody or the maternal vaccine. Insurers have a year to commence coverage and many have been dragging their feet because of the high price.)

There are better and more equitable ways to steer the shots into the arms of those who need it, rather than simply administering it to those who have the “right” insurance or, swayed by advertising, can pay. For example, insurers, including Medicare, could be required to cover only those ages 60 to 75 who have a prescription from a doctor, indicating shared decision-making has occurred.

Finally, during the pandemic emergency, the federal government purchased all covid-19 vaccines in bulk at a negotiated price, initially below $20 a shot, and distributed them nationally. If, to protect public health, we want vaccines to get into the arms of all who benefit, that’s a more cohesive strategy than the patchwork one used now.

Vaccines are miraculous, and it’s great news that they now exist to prevent serious illness and death from RSV. But using such novel vaccines wisely — directing them to the people who need them at a price they can afford — will be key. Otherwise, the cost to the health system, and to patients, could undermine this big medical win.

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.

USE OUR CONTENT

This story can be republished for free (details).