Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.

She said she kept telling her doctor something was wrong.

Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.

Within months of that 2016 appointment, Jones, who lives in a suburb of Jackson, Mississippi, was diagnosed with stage 3 cervical cancer. She underwent a hysterectomy then weeks of radiation therapy.

“I ended up fine,” said Jones, now 43. “But what about all the other women?”

The question is especially pertinent in Jones’ home state, which had the nation’s second-highest age-adjusted cervical cancer mortality rate, 3.4 deaths per 100,000 women and girls annually from 2016 through 2020, behind only Oklahoma, according to National Cancer Institute data. And, for non-Hispanic Black women such as Jones, the rates in the state are even higher — 3.7 deaths per 100,000 people. This all translates to about 50 avoidable deaths of Mississippi women from cervical cancer each year in this largely rural state.

Health care experts said such a high death rate from a cancer that is preventable, detectable, and successfully treatable when found early is a warning sign about the general state of health care in Mississippi.

“They desperately need help there,” said Otis Brawley, a professor of oncology at Johns Hopkins School of Medicine and an expert on health disparities. “Political leadership is incredibly important in turning this around, and in Mississippi, the political leadership don’t give a damn.”

Despite the beauty of Mississippi, from the rolling hills of the Natchez Trace to white-sand beaches on the Gulf of Mexico, and the cultural renown of its famous musicians and storytellers, the state’s reputation is marred by its high rates of poverty. People who live there are accustomed to being the butt of jokes, but it hurts.

“Often Mississippi gets represented poorly,” said Mildred Ridgway, an OB-GYN at the University of Mississippi Medical Center in Jackson.

Recently the state has reeled from crisis after crisis. As recently as March, tornadoes and other severe weather killed more than two dozen people and caused extensive damage. Last year, the water in Jackson, the state capital, was undrinkable for months because of treatment plant failures.

On just about any measure of health, Mississippi ranks near or at the bottom. Nationally, an estimated 10% of people under 65 lack health insurance, but in Mississippi it is about 14%. Deaths from cardiovascular disease, diabetes, cancer, and many other illnesses are among the highest per capita in the country.

The high rates of poverty contribute to the high cervical cancer mortality, health experts said. About 19% of Mississippians — nearly 1 in 5 — live in poverty, while nationally it is about 13%.

“If I had to pinpoint what that’s from, it’s from lack of education,” said Ridgway, referring to a lack of knowledge about regular cervical cancer screening, which the U.S. Preventive Services Task Force recommends every three years for women 21 to 65.

But it likely goes far beyond that, many health experts said. Doctors may be less likely to stress preventive care to less educated women and women of color, studies suggest.

“There’s a big difference in the quality of care,” said Rajesh Balkrishnan, a professor of public health at the University of Virginia who has extensively studied oncology care in Appalachia and other underserved areas.

In her case, Jones said, she could not get her doctor’s office to return her calls in a timely manner. She was concerned about her symptoms.

“I felt I wasn’t listened to. I called her more than she called me,” Jones said of her doctor. “I was going to my appointments, and I was ignored.”

And getting access to any care — let alone quality, culturally competent care from providers who acknowledge a patient’s heritage, beliefs, and values during treatment — may be difficult.

Most of the state’s 82 counties are rural. The average travel distance to a grocery store is 30 miles, and half the population lives in a county that is considered medically underserved, said Letitia Thompson, a vice president in Mississippi for the American Cancer Society.

Low-income rural residents often lack reliable transportation, she said, and even if they own a vehicle, they lack gas money. They often can’t find — or pay for — someone to take care of their children so they can go to the doctor. Women with low-paying jobs often lack the time to drive to a clinic in a distant town, or the ability to take off from work without losing pay.

“Women who work and take care of children often have a huge burden of responsibility,” Ridgway said. “They don’t have time or the money.”

Many also don’t have insurance. While the Affordable Care Act has lowered the uninsured rate in Mississippi, an estimated additional 88,000 Mississippians could have coverage through Medicaid if the state expanded eligibility for the federal-state insurance program for low-income Americans. But the state is one of 10 that have not agreed to expand coverage to more adults.

Mississippi Gov. Tate Reeves, a Republican up for reelection this year, is opposed to expansion. His Democratic challenger, Brandon Presley, a second cousin of the music legend Elvis, favors it. Polls show Presley lagging Reeves.

Without expansion of Medicaid, people who have low incomes are often left to decide between forgoing insurance and purchasing a policy through the Affordable Care Act marketplace if they cannot get insurance through employment. Even if they qualify for subsidized marketplace plans, they may face high deductibles or copayments for visits, health experts said. That often means going to the doctor only when sick. Preventive care becomes a luxury.

“You save your health care dollars for when you are sick or your kids are sick,” said Thompson, of the American Cancer Society.

But regular medical care can make all the difference with cervical cancer. Pap tests have long helped detect abnormal cervical cells that could turn malignant. Brawley said the test is “one of the best” cancer screening tests because of its accuracy.

In 2006, vaccines to prevent cervical cancer were first approved by the FDA. The vaccines guard against the common sexually transmitted infection called the human papillomavirus, which causes nearly all cervical cancers. The HPV vaccine is most effective when administered before a person has become sexually active; the federal recommendation is to get the shots by age 12.

Only a handful of places in the U.S. — including Hawaii, Rhode Island, Virginia, Puerto Rico, and the District of Columbia — require the vaccines to attend school. California has pending legislation that initially would have required that middle schoolers get the shots, but the bill has since been watered down to recommend them instead.

Mississippi does not require the vaccine, and the state has had the lowest share of fully vaccinated teens by a large margin for years. Fewer than 39% of teens there were up to date on HPV vaccination as of 2022, according to the CDC, compared with an estimated 63% nationally.

Thompson said she thinks many parents are hesitant to have their children vaccinated because they believe it would encourage sexual activity.

“This is an anti-cancer vaccine,” Thompson said.

Krista Guynes, director of the women’s health program at the Mississippi State Department of Health, said the state has several efforts underway to better inform women about the need for screening. It also has clinics for uninsured women. In partnership with the National Cancer Institute and University of Mississippi Medical Center, she said, the health department is conducting a study to evaluate risk and look for new biomarkers in women undergoing screening for cervical cancer.

As for Jones, she considers herself lucky to have survived stage 3 cancer.

“I would just like to say to every woman, ‘Get the vaccine.’ The vaccine will make the difference, so they won’t have to be told, ‘I’m sorry, you have cancer.’”

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).

But a research study the Centers for Medicare & Medicaid Services commissioned to identify the appropriate level of staffing made no specific recommendations and analyzed only staffing levels lower than what the previous major federal evaluation had considered best, according to a copy of the study reviewed Monday by KFF Health News. Instead, the new study said there was no single staffing level that would guarantee quality care, although the report estimated that higher staffing levels would lead to fewer hospitalizations and emergency room visits, faster care, and fewer failures to provide care.

Patient advocates said the report was the latest sign that the administration would fall short of its pledge to establish robust staffing levels to protect the 1.2 million Americans in skilled nursing facilities. Already, the administration is six months behind its self-imposed deadline of February to propose new rules. Those proposals, which have not been released, have been under evaluation since May by the Office of Management and Budget. The study, dated June 2023, has not been formally released either, but a copy was posted on the CMS website. It was taken down shortly after KFF Health News published this article.

“It’s honestly heartbreaking,” said Richard Mollot, executive director of the Long Term Care Community Coalition, a nonprofit that advocates for nursing home patients in New York state. “I just don’t see how this doesn’t ultimately put more residents at risk of neglect and abuse. Putting the government’s imprimatur on a standard that is patently unsafe is going to make it much more difficult for surveyors to hold facilities accountable for the harm caused by understaffing nursing homes.”

For months, the nursing home industry has been lobbying strenuously against a uniform ratio of patients to nurses and aides. “What is clear as you look across the country is every nursing home is unique and a one-size-fits-all approach does not work,” said Holly Harmon, senior vice president of quality, regulatory, and clinical services at the American Health Care Association, an industry trade group.

Nursing home groups have emphasized the widespread difficulty in finding workers willing to fill existing certified nursing assistant jobs, which are often grueling and pay less than what workers can make at retail stores. Homes say their licensed nurses are often drawn away by other jobs, such as better-paying hospital positions. “The workforce challenges are real,” said Katie Smith Sloan, president and CEO of LeadingAge, an association that represents nonprofit nursing homes.

The industry has also argued that if the government wants it to hire more workers it needs to increase the payments it makes through state Medicaid programs, which are the largest payor for nursing home care. Advocates and some researchers have argued that nursing homes, particularly for-profit ones, can afford to pay employees more and hire additional staff if they forsake some of the profits they give investors.

“Certainly, facilities haven’t put all the dollars back into direct care over the years,” said David Grabowski, a professor of health care policy at Harvard Medical School. “But for certain facilities, it’s going to be a big lift to pay for” higher staffing levels, he said in an interview last week.

In a written statement to KFF Health News, Jonathan Blum, CMS’ principal deputy administrator and chief operating officer, said the study had been posted in error. “CMS is committed to holding nursing homes accountable for protecting the health and safety of all residents, and adequate staffing is critical to this effort,” he said. “CMS’s proposal is being developed using a rigorous process that draws on a wide range of source information, including extensive input from residents and their families, workers, administrators, experts, and other stakeholders. Our focus is on advancing implementable solutions that promote safe, quality care for residents.” Blum’s statement called the study a “draft,” although nothing in the 478-page study indicated it was preliminary.

The study has been widely anticipated, both because of the central role the administration said it would play in its policy and because the last major CMS study, conducted in 2001, had concluded that nursing home care improves as staffing increases up to the level of about one worker for every six residents. The formal metric for that staffing level was 4.1 staff hours per resident per day, which is calculated by dividing the number of total hours worked by nurses and aides on duty daily by the number of residents present each day.

CMS never adopted that staffing ratio and instead gave each nursing home discretion to determine a reasonable staffing level. Regulators rarely cite nursing homes for insufficient staffing, even though independent researchers have concluded low staffing is the root of many nursing home injuries. Too few nurse aides, for instance, often means immobile residents are not repositioned in bed, causing bedsores that can lead to infection. Low staffing also is often responsible for indignities residents face, such as being left in soiled bedsheets for hours.

The new research was conducted by Abt Associates, a regular contractor for CMS that also performed the 2001 study. But the report, in an implicit disagreement with its predecessor, concluded there was “no obvious plateau at which quality and safety are maximized or ‘cliff’ below which quality and safety steeply decline.” Abt referred questions about the study to CMS.

The study evaluated four minimum staffing levels, all of which were below the 4.1 daily staff hours that the prior study had identified as ideal. The highest was 3.88 daily staff hours. At that level, the study estimated 0.6% of residents would get delayed care and 0.002% would not get needed care. It also said that staffing level would result in 12,100 fewer hospitalizations of Medicare residents and 14,800 fewer emergency room visits. The report said three-quarters of nursing homes would need to add staff to meet that level and that it would cost $5.3 billion extra each year.

The lowest staffing level the report analyzed was 3.3 daily staffing hours. At that level, the report said, 3.3% of residents would get delayed care and 0.04% would not get needed care. That level would reduce hospitalizations of Medicare residents by 5,800 and lead to 4,500 fewer emergency room visits. More than half of nursing homes would have to increase staff levels to meet that ratio, the report said, and it would cost $1.5 billion more each year.

Charlene Harrington, a professor emeritus of nursing at the University of California-San Francisco, said CMS “sabotaged” the push for sufficiently high staffing through the instructions it gave its contractor. “Every threshold they looked at was below 4.1,” she said. “How can that possibly be a decent study? It’s just unacceptable.”

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).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

USE OUR CONTENT

This story can be republished for free (details).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Ohio voters — in a rare August election — turned out in unexpectedly high numbers to defeat a ballot measure that would have made it harder to pass an abortion-rights constitutional amendment on the ballot in November. The election was almost a year to the day after Kansas voters also stunned observers by supporting abortion rights in a ballot measure.

Meanwhile, the percentage of Americans without health insurance dropped to an all-time low of 7.7% in early 2023, reported the Department of Health and Human Services. But that’s not likely to continue, as states boot from the Medicaid program millions of people who received coverage under special eligibility rules during the pandemic.

This week’s panelists are Julie Rovner of KFF Health News, Emmarie Huetteman of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachel Roubein of The Washington Post.

Panelists

Emmarie Huetteman
KFF Health News

@emmarieDC

Read Emmarie's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Rachel Roubein
The Washington Post

@rachel_roubein

Read Rachel's stories

Among the takeaways from this week’s episode:

• It should not have come as much of a surprise that Ohio voters sided with abortion-rights advocates. Abortion rights so far have prevailed in every state that has considered a related ballot measure since the Supreme Court overturned Roe v. Wade, including in politically conservative states like Kentucky and Montana.
• Moderate Republicans and independents joined Democrats in defeating the Ohio ballot question. Opponents of the measure — which would have increased the threshold of votes needed to approve state constitutional amendments to 60% from a simple majority — had not only cited its ramifications for the upcoming vote on statewide abortion access, but also for other issues, like raising the minimum wage.
• A Texas case about exceptions under the state’s abortion ban awaits the input of the state’s Supreme Court. But the painful personal experiences shared by the plaintiffs — notable in part because such private stories were once scarce in public discourse — pressed abortion opponents to address the consequences for women, not fetuses.
• The uninsured rate hit a record low earlier this year, a milestone that has since been washed away by states’ efforts to strip newly ineligible Medicaid beneficiaries from their rolls as the covid-19 public health emergency ended.
• The promise of diabetes drugs to assist in weight loss has attracted plenty of attention, yet with their high price tags and coverage issues, one thorny obstacle to access remains: How could we, individually and as a society, afford this?
• Lawmakers are asking more questions about the nature of nonprofit, or tax-exempt, hospitals and the care they provide to their communities. But they still face an uphill battle in challenging the powerful hospital industry.

Also this week, Rovner interviews Kate McEvoy, executive director of the National Association of Medicaid Directors, about how the “Medicaid unwinding” is going as millions have their eligibility for coverage rechecked.

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

Julie Rovner: KFF Health News’ “How the Texas Trial Changed the Story of Abortion Rights in America,” by Sarah Varney.

Joanne Kenen: Fox News’ “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’,” by Melissa Rudy.

Rachel Roubein: Stat’s “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Mohana Ravindranath.

Emmarie Huetteman: KFF Health News’ “The NIH Ices a Research Project. Is It Self-Censorship?” by Darius Tahir.

Also mentioned in this week’s episode:

• Politico’s “Abortion Rights Won Big in Ohio. Here’s Why It Wasn’t Particularly Close,” by Madison Fernandez, Alice Miranda Ollstein, and Zach Montellaro.
• KFF Health News’ “Seeking Medicare Coverage for Weight Loss Drugs, Pharma Giant Courts Black Influencers,” by Rachana Pradhan.
• Stat’s “Alarmed by Popularity of Ozempic and Wegovy, Insurers Wage Multi-Front Battle,” by Elaine Chen.

click to open the transcript

Transcript: On Abortion Rights, Ohio Is the New Kansas

KFF Health News’ ‘What the Health?’Episode Title: On Abortion Rights, Ohio Is the New KansasEpisode Number: 309Published: Aug. 10, 2023

[Editor’s note: This transcript, generated using transcription software, 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 a day early this week, on Wednesday, Aug. 9, at 3:30 p.m. As always, news happens fast, and things might have 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 Bloomberg School of Public Health and Politico.

Joanne Kenen: Hey, everybody.

Rovner: Rachel Roubein of The Washington Post.

Rachel Roubein: Hi, everybody.

Rovner: And my colleague and editor here at KFF Health News Emmarie Huetteman.

Emmarie Huetteman: Hey, everyone. Glad to be here.

Rovner: So later in this episode, we’ll have my interview with Kate McEvoy, executive director of the National Association of Medicaid Directors. She’s got her pulse on how that big post-public health emergency “Medicaid unwinding” is going. And she’ll share some of that with us. But first, this week’s news. I guess the biggest news of the week is out of Ohio, which, in almost a rerun of what happened in Kansas almost exactly a year ago, voters soundly defeated a ballot issue that would have made it harder for other voters this fall to reverse the legislature’s strict abortion ban. If you’re having trouble following that, so did they in Ohio. [laughs] This time, the fact that the abortion rights side won wasn’t as much of a surprise because every statewide abortion ballot question has gone for the abortion rights side since Roe v. Wade was overturned last year. What do we take away from Ohio? Other than it looked a lot like … the split looked a lot like Kansas. It was almost 60-40.

Kenen: It shows that there’s a coalition around this issue that is bigger than Democrat or Republican. Ohio was the classic swing state that has turned into a conservative Republican-voting state — not on this issue. This was clearly independents, moderate Republicans joined Democrats to … 60-40, roughly, is a pretty big win. Yes, we’ve seen it in other states. It’s still a pretty big win.

Roubein: I agree. And I think one of my colleagues, Patrick Marley, and I spent some time just driving around and traveling Ohio in July. And one of the things that we did find is that — this ballot measure to increase the threshold for constitutional amendments is 60% — it had in some, in many, ways turned into a proxy war over abortion. But, in some ways, both sides also didn’t talk about abortion when they were, you know, canvassing different voters. You know, they use different tools in the toolbox. I was following around someone from Ohio Right to Life and, you know, he very much said, “Abortion is the major issue to me.” But, you know, they tried to kind of bring together the side that supported this. Other issues like legalizing marijuana and raising the minimum wage, and, you know, the abortion rights side was very much a part of, you know, the opposition here. But when some canvassers went out — my colleague Patrick had traveled and followed some, and some, you know, kind of focused on other issues like, you know, voters having a voice in policy and keeping a simple majority rule.

Rovner: Yeah, I think it’s important — for those who have not been following this as closely as we have — what the ballot measure was was to make future ballot measures — and they said they were not going to have them in August anymore, which, this was the last one — in order to amend the constitution by referendum, you would need a 60% majority rather than a 50% majority. And just coincidentally, there is an abortion ballot measure on Ohio’s ballot for November, and it’s polling at about 58%. But, yes, this would have applied to everything, and it was defeated.

Kenen: And it’s part of a larger trend. It began before the overturning of Roe v. Wade. Over the last couple of years, you’ve seen conservative states move to tighten these rules for ballot initiatives. And that’s because more liberal positions have been winning. I mean, Medicaid, the Medicaid expansion on the ballot, has won, and won big. Only one was even close …

Rovner: In very red states!

Kenen: They often won very big in a number of very, very conservative states, places like Idaho and Nebraska. So, you know, there’s always been … the conventional wisdom is that, you know, the political parties are more extreme than many voters, that the Democratic Party is for the left and the Republican Party is for the right. And there are a lot of people who identify with one party or the other but aren’t … who are more moderate or, in this case, more liberal on Medicaid. And Medicaid … what was it, seven states? I think it’s seven. Seven really conservative states. And then the abortion has won in every single state. And there’s a little bit of conversation and it’s … very early. And I don’t know if it’s going to go anywhere, but if I’ve heard it and written a bit about it, conservative lawmakers have heard about it, too, which is there are groups interested in trying to get some gun safety initiatives on ballots. So that’s complicated. And it may not happen. But they’re seeing, I mean, that’s the classic example of both a criminal justice and a public health issue — so we can talk about it — a classic example where the country is much more in the center.

Rovner: Well, let us move to Texas, because that’s where we always end up when we talk about abortion. You may remember that lawsuit where several women who nearly died from pregnancy complications sued the state to clarify when medical personnel are able to intercede without being subjected to fines and/or jail sentences. Well, the women won, at least for a couple of days. A Texas district judge who heard the case ruled in their favor, temporarily blocking the Texas ban for women with pregnancy complications. But then the state appealed, and a Texas appeals court blocked the lower-court judge’s blocking of part of the ban. If you didn’t follow that, it just means that legally nothing has changed in Texas. And now the case goes to the Texas Supreme Court, which has a conservative majority. So we pretty much know what’s going to happen. But whether these women ultimately win or lose their case may not be the most important thing. And, to explain why I’m going to do my extra credit early this week. It’s by my KFF Health News colleague Sarah Varney. It’s called “How the Texas Trial Changed the Story of Abortion Rights in America.” She writes that this trial was particularly significant because it put abortion foes on the defensive by graphically depicting harm to women of abortion bans — rather than to fetuses. And it’s also about the power of people publicly telling their stories. I’ve done a lot of stories over the years about women whose very wanted pregnancies went very wrong, very late. And, I have to tell you, it’s been hard to find these women. And when you find them, it’s been really hard to get them to talk to a journalist. So, the fact that we’re seeing more and more people actually come out publicly, you know, may do for this issue what, you know, perhaps what gay rights, you know, what people coming out as gay did for gay marriage? I don’t know. What do you guys think?

Kenen: Well, I think these stories have been really compelling, but they’re also, they’re the most dramatic and maybe easiest to push back. But it’s, you know, there’s a whole lot of other reasons women want abortions. And the focus — and it’s life and death, so the focus, quite rightfully, has to be on these really extreme cases. But that’s not … it’s still in some ways shifting attention from the larger political discussion about choice and rights. But, clearly, some of these states, we’ve seen so many stories of women who, their lives are at stake, their doctors know it, and they just don’t think they have the legal power; they’re afraid of the consequences if they’re second-guessed. There are tremendous financial and imprisonment [risks] for a doctor who is deemed to have done an unnecessary abortion. And this idea that’s taken hold … among some conservatives is that there’s never a need for a medical abortion. And that’s just not true.

Rovner: And yet, I mean, what this trial and a lot of things in Sarah’s piece too point out is that that line between miscarriage and abortion is really kind of fuzzy in a lot of cases. You know, if you go to the hospital with a miscarriage and they’re going to say, “Well, did you initiate this miscarriage?” And we’ve seen women thrown in jail before for losing pregnancies, with them saying, “You know, you threw yourself down the stairs to end this pregnancy.” That actually happened, I think it was in Indiana. So this is —

Kenen: And miscarriage is very common.

Rovner: That was what I was saying.

Kenen: Early miscarriage is very common. Very, very common.

Huetteman: One of the things that’s so striking about the past year, since Dobbs overturned Roe v. Wade ,is that we’ve seen this kind of national education about what pregnancy is and how dangerous it can be and how care needs to really be flexible to meet those sorts of challenges. And this actually got me thinking about something that another familiar voice on this podcast, Alice Miranda Ollstein, and some colleagues wrote this morning about the Ohio outcome, which is they pointed out that the anti-abortion movement really hasn’t evolved in terms of the arguments that they’re making in the past year about why abortion should continue to be less and less available. Meanwhile, we’ve got these, like, really incredible, really emotional, moving stories from women who have experienced this firsthand. And that’s a hard message to overcome when you’re trying to reach voters in particular.

Rovner: And it’s interesting; both sides like to take — you know, they all go to the hardest cases. So, for years and years, the anti-abortion side has, you know, has gone to the hardest cases. And that’s why they talk about abortion in the ninth month up till birth, which isn’t a thing, but they talk about it. And you know, now the abortion rights side has some hard cases now that abortions are harder to get. Well, while we are on the subject of Texas lawsuits, States Newsroom — and thank you for sending this my way, Joanne — has a story reporting that the publisher of the scientific paper that both the lower court judge and the appeals court judges used to conclude that the abortion drug mifepristone causes frequent complications — it does not — is being reviewed for potential scientific misconduct. The paper comes from the Charlotte Lozier Institute, which is the research arm of the anti-abortion group the Susan B. Anthony List. Sage, which is the publisher of the journal that the paper appeared in, has posted something called an expression of concern, saying that the publisher and editor, quote, “were alerted to potential issues regarding the representation of data in the article and author conflicts of interest. SAGE has contacted the authors of this article and an investigation is underway.” This was sort of a whistleblower by a pharmacist who looked at the way the data in this paper was put together and says, “No, that’s really very misleading.” I don’t think I’ve ever seen this, though; I’ve never seen a scientific paper that’s now being questioned for its political bent, a peer-reviewed scientific paper. I mean, this could change a lot of things, couldn’t it?

Kenen: Well, not if people decide that they still think it’s true. I mean, look at — you know, the vaccine autism paper was retracted. That wasn’t initially political. It’s become more political over the years; it wasn’t political at the time. That was retracted. And people have been jumping up and down screaming, “It was retracted! It was retracted!” And, you know, millions of people still believe it. So, I mean, legally, I’m not sure how much it changes. I mean, I thought we had all heard that there were flaws in this study. This article was good because I hadn’t been aware of how deeply flawed and in all the many ways it was flawed. And also the whistleblower yarn was interesting. I’m not sure how much it changes anything.

Rovner: Well, I’m thinking not in terms of this case. And by the way, I think we didn’t say this, that the study was of emergency room visits by women who’d had either surgical or medical abortions. And the contention was that medical abortions were more dangerous than surgical abortions because more women ended up in the emergency room. But as several people have pointed out, more people ended up in the emergency room after medical abortions because there have been so many more medical abortions over the years. I mean, you don’t actually have to be a data scientist to see some of the problems.

Kenen: Right. And some of them also weren’t that — really, were nervous, and they didn’t know what was normal and they went to the ER because they were scared and they really were safe. They were not — they didn’t need — you know, they just weren’t sure how much pain and discomfort or bleeding you’re supposed to have. And they went and they were reassured and were sent home. So it’s not even that they really had a medical emergency or that they were harmed.

Rovner: Or that they had a complication.

Kenen: Right. There were many flaws pointed out with this research.

Rovner: But my broader question is, I mean, if people are going to start questioning the politics of scientific papers, I mean, I could see the other side going after this.

Kenen: Well, there’s climate science, too, that’s bad. I mean, I don’t think this is actually unique. I think it’s egregious. But there were studies minimizing the risk of smoking, which was also a political business, commercial. Climate is certainly political. I mean, I think this is sort of the most politicized and most acute example, but I don’t think it’s the only one.

Roubein: And I think, Julie, as you’d mentioned, I think when [U.S. District Judge] Matthew Kacsmaryk in Texas came down with his decision — you know, for instance, there are media outlets — that my colleagues at the Post did a story just kind of unpacking some of the kind of flaws and some of the studies that were used to make, you know, a court decision.

Rovner: Yeah, to give the judge what he assumes to be evidence that this is a dangerous drug. So it’s — yeah.

Kenen: Which he came in believing, we know, from the profiles of him and his background.

Rovner: Right. All right, well, let us move on. The official Census Bureau estimate of how many people lack health insurance won’t be out until next month. But the Department of Health and Human Services is out with a report based on that other big federal population survey that shows the uninsured rate early this year was at its lowest level since records started being kept, which I think was in the 1980s: 7.7%. Now, that’s clearly going to be the high point for the fewest number of people uninsured, at least for a while, because clearly not all of the millions of people who are losing or about to lose their Medicaid coverage are going to end up with other insurance. But I remember — Joanne, you will, too — when the rate was closer to 18% … was a huge news story, and the thing that triggered the whole health reform debate in the first place. I’m surprised that there’s been so little attention paid to this.

Kenen: Because, you know … [unintelligible] … it’s so yesterday. And also, as you alluded to, you know, we’re in the middle of the Medicaid unwinding. So the numbers are going up again now. And we don’t know. We know that it’s a couple of million people. I think 3 million might be the last —

Rovner: I think it’s 4 [million], it’s up to 4.

Kenen: Four, OK. And some of them will get covered again and some of them will find other sources of coverage. But right now, there’s an uptick, not a downtick.

Roubein: And I think when you look at just, like, estimates of what the insured and the uninsured rates would be in 2030, like, the CMS’ [Centers for Medicare & Medicaid Services] analysis, one of the other questions is, you know, whether the enhanced Obamacare subsidies continue past 2025. So there’s Medicaid and then there’s also some other kind of question marks and cliffs coming up on how and whether it will fluctuate.

Rovner: No, it’s worth watching. And remember, when the census numbers come out, those will be for 2022. Well, moving on, we have two stories this week looking at the potential cost of those breakthrough obesity drugs, but through two very different lenses. One is from my KFF Health News colleague Rachana Pradhan, details how the makers of the current “it” drug, Ozempic, which is Novo Nordisk, in an effort to get the votes to lift the Medicare payment ban on weight loss drugs, is quietly contributing large amounts of money to groups like the Congressional Black Caucus Foundation and the Congressional Hispanic Caucus Institute. It’s sort of a backdoor lobbying that’s pretty age-old, but that doesn’t mean it doesn’t work. The other story, by Elaine Chen at Stat, looks at how health insurers are pushing back hard against the off-label use of diabetes medications that also work to help people lose weight. They’re doing things like allowing the more expensive weight loss drugs only if people have tried and failed other methods or disallowing them if the other methods had been slightly successful. So, if you take a lesser drug and you lose enough weight, they won’t let you take the better drug because, look, you lost weight on the other drug. We’ve talked about this, obviously, before: These drugs, on the one hand, have the potential to make a lot of people both healthier and happier. There’s a study out this week that shows that Mounjaro, the Eli Lilly drug, actually reduces heart disease by 20%.

Kenen: In people who have heart disease.

Rovner: Right, in people who have heart disease.

Kenen: It’s not lowering everybody’s risk.

Rovner: But still, I mean, everybody’s — well, I mean, there are medical indications for using these drugs for weight loss. But if everybody who wants them could get them, it would literally break the bank. Nobody can afford to give everybody who’s eligible for these drugs these drugs. Is the winner here going to be the side with the most effective lobbying, or is that too cynical?

Huetteman: Isn’t that always the winner? Speaking of cynical.

Rovner: Yeah, in health care.

Kenen: Well, I mean, I also think there’s questions about, like, these drugs clearly are really wonderful for people who they were designed for; you don’t have to be on insulin. They’re having not just weight loss and diabetes. There are apparently cardiac and other — you know, these are probably really good drugs. But there are a lot of people who do not have diabetes or heart disease who want them because they want to lose 20 pounds. And some of them are being told you have to take it for the rest of your life. I mean, I just know this anecdotally, and I’m sure we all know it anecdotally.

Rovner: Right. It’s like statins.

Kenen: Yes.

Rovner: Or blood pressure medication. If you stop taking your blood pressure medication, your blood pressure goes back up.

Kenen: Right. So, I mean, should the goal for the weight loss be, “OK, this is going to help you take off that weight and then you’re going to have to maintain it through diet and exercise and healthy lifestyle,” blah, blah, blah, which is hard for people. We know that. Or are we putting healthy people on a really expensive drug that changes an awful lot of things about their body indefinitely? We don’t have safety data for lifelong use in otherwise healthy people. So, you know, I’m always a little worried because even the best clinical trial is small compared to the entire — it’s small and it’s time-limited. And maybe these drugs are going to turn out to be absolutely phenomenal and we’re going to all live another 20 healthy years. But maybe not, you know. Or maybe they’re going to be really great for a certain subpopulation, but, you know, we’re not going to want to put it in the water supply. So, I still think that there’s this sort of pell-mell rush. And I think it’s partly because there’s a lot of money at stake. And it’s also, like, most people who are overweight have tried to lose it, and it’s very difficult to lose and maintain weight. So, you know, people want an easier way to do it. And I think the other thing is right now it’s an injection. There are side effects for some people on discomfort. There probably will be an oral version, a pill, sometime fairly soon, which will open — you know, there are people who don’t want to take a shot who would take a pill. It also means you might be able to tell — I mean, I don’t know the science of the pills, but it would make sense to me that you could take a lower dose, you know, maybe ease into it without the side effects, or could you stay on it longer with fewer problems? I mean, we’re just the very beginning of this, but it’s a huge amount of money.

Rovner: Yeah. You could see — I mean, my big question, though, is why can’t we force the drugmakers to lower the price? That would, if not solve the problem, make it a lot better. I mean, really, we’re going to have to wait until there is generic competition?

Kenen: It’s not just this.

Rovner: Yeah.

Kenen: I mean, it’s all sorts of cancer treatments and it’s hepatitis treatments. And it’s, I mean, there’s a lot of expensive drugs out there. So, this one just has a lot of demand because it makes you skinny.

Rovner: Well, that was the thing. We went through this with the hepatitis C drugs, which were really super expensive. It’s much more like that.

Kenen: Well, they seemed super expensive at the time —

Rovner: Not so much anymore.

Kenen: — but maybe for a thousand dollars, in retrospect.

Rovner: All right. Well, let’s move on. So, speaking of powerful lobbies, let’s talk about hospitals. Iowa Republican Sen. Chuck Grassley and Massachusetts Democrat Elizabeth Warren — now, there is an unlikely couple — are among those asking the IRS to more carefully examine tax-exempt hospitals to make sure they’re actually benefiting the community in exchange for not paying taxes, which is supposed to be the deal. Now, Sen. Grassley has been on this particular hobbyhorse for many, many years, I think probably more than 20, but not much ever seems to come of this. I can’t tell you how many workshops I’ve been to on, you know, how to measure community benefits that tax-exempt hospitals are providing. Any inkling that this time is going to be any different?

Roubein: Well, hospitals don’t tend to be sort of the losers. They try and kind of frame themselves as, like, “We’re your sort of friendly neighborhood hospital,” and every — I mean, every congressman, most congressmen have, you know, hospitals in their district. So they they get lobbied a lot, though, you know — I mean, this is a different issue, but particularly on the House side, hospitals are facing site-neutral payments, which if that actually went through Congress would be a loss. So yeah, but lawmakers have found it in general hard to take on the hospital industry.

Rovner: Yeah, very much so.

Kenen: Yeah. I mean, I think that we think of nonprofits and for-profits as, they’re different, but they’re not as different as we think they are, in that, you know, nonprofits are getting a tax break and they have to reinvest their profits. But it doesn’t mean they’re not making a lot of money. Some of them are. I mean, some of them have, you know, we’ve all walked into fancy nonprofits with, you know, fancy art and marble floors and so on and so forth. And we’ve all been in nonprofits that are barely keeping their doors open. So it’s your tax status. It’s not really, you know, your ethical status or the quality of care. I mean, there’s good nonprofits, there’s good for-profits. You know, this whole thing is like, if I were a hospital, I would be getting this huge tax break, and what am I doing to deserve it? And that’s the question.

Rovner: And I think the argument is, you know, that the 7.7% uninsured we were talking about, that hospitals are supposed to be providing care as part of their community benefit that the federal government now is ending up paying for. I think that’s sort of the frustration. If nonprofit hospitals were doing what they were supposed to do, it would cost federal and state governments less money, which always surprises me because this is not gone after more. I mean, Grassley has spent his whole career working on various types of government fraud. So this is totally in line for him. But it’s never just seemed to be a big priority for any administration.

Huetteman: There’s a little bit of an X factor here. Look at the fact that Grassley and Warren are talking about this publicly now. Maybe I’m just really optimistic from all the journalism we’ve been doing about projects like “Bill of the Month.” But the reality is that a lot of people are now seeing reporting that’s showing to them what nonprofit hospitals are actually doing when it comes to pursuing patients who don’t pay bills. And what it means to have community benefit comes into question a lot when you talk about wage garnishment, suing patients who are low-income for their medical debt. These are things that journalists have uncovered over and over again, happening at — ding, ding, ding — nonprofit hospitals. It’s harder to argue that hospitals are just doing their best for people when you have these stories of poor people who are losing their homes over unpaid medical bills, for instance. And I think that right now, when we’re in this political moment where health care costs are so, so potent to people and so important, I mean, could we see that this will actually be more effective, that we’re heading towards something that’s more effective? Maybe.

Rovner: Well, repeats the journalist, as we all are, the power of storytelling. Definitely the public is primed. I imagine that’s why they’re doing it now. We’ll see what comes of it.

Kenen: think the public is primed for bad practices. I’m not sure how many patients understand if the hospital they go to is a nonprofit or a for-profit. I think the public understands that everything in health care costs too much and that there are bad actors and greed. There’s a difference between profit and greed, and I think many people would say that we’re now in an era of greed. And not everybody in the health care sector — before anybody calls us up and shouts, “Not everybody who provides care is greedy” — but we’ve seen, you know, it is clearly out there. You know, you had Zeke Emanuel on a couple of weeks ago. Remember what he said, that, you know, 10 years ago, some people still liked their health care and now nobody likes their health care, rich or poor.

Rovner: Yeah, he’s right. All right. Well, that is this week’s news. Now, we’ll play my interview with Kate McEvoy of the National Association of Medicaid Directors about how the Medicaid unwinding is going. And one note before you listen: Kate frequently refers to the federal CMCS, which is not a misspeak; it stands for the Center for Medicaid and CHIP Services, which is the branch of CMS, the Centers for Medicare & Medicaid Services, that deals with Medicaid. So, here’s the interview:

I am pleased to welcome to the podcast Kate McEvoy, executive director of the National Association of Medicaid Directors, which is pretty much exactly what the name says, a group where state Medicaid officials can share information and ideas. Kate, welcome to “What the Health?”

Kate McEvoy: Good afternoon. Thanks for having me.

Rovner: Obviously, the Medicaid unwinding, which we have talked about a lot on the podcast, is Topic A for your members right now. Remind us again which Medicaid recipients are having their coverage eligibility rechecked? It’s not just those in the expansion group from the Affordable Care Act, right?

McEvoy: It’s not, no. Each and every person served by the country nationwide has to be reevaluated from an eligibility standpoint this year.

Rovner: What do we know about how it’s going? We’re seeing lots of reports that suggest the vast majority of people losing coverage are for paperwork reasons, not because they’ve been found to be no longer eligible. I know you recently surveyed your members. What are they telling you about this?

McEvoy: So, I first want to say this is an unprecedented task and it’s obviously historically significant for everyone served by the program. The volume of the work, and also the complexity, makes it a challenging task for all states and territories. But what we are seeing to date is a few things. First, we have seen an incredible effort on the part of states and territories to saturate really every means of communicating with their membership, really getting out that message around connecting with the programs, especially if an individual has moved during the period of the pandemic, which is very typical for people served by Medicaid. So that saturation of messaging and use of new means of connecting with people, like texting, really does represent a tremendous advance for the Medicaid program that has traditionally relied on a lot of complex, formal, legal notices to people. So that seems like a very positive thing. What we are seeing, and this is not unexpected, is that, you know, for reasons related to complex life circumstances and competing considerations, many people are not responding to those notices, no matter how we are transmitting those messages. And so that is a piece that is of great interest and concern to all of us, notably Medicaid directors wanting to make sure that eligible folks do not lose coverage simply because they are not responsive to the requests for more information. So we’re at a point where we’re beyond that initial push around messaging and now are really focused on means of protecting people who remain eligible, either through automatic review of their eligibility — the ex parte process — or by restoring them through such means as reconsideration. That’s really the main focus right now.

Rovner: And there’s that 90-day reconsideration window. Is that … how does that work?

McEvoy: So the federal law gives this period of 90 days to families and children within which they can be renewed with very little effort, essentially removing the responsibility to complete a new application. We also have long-standing help to people called “presumptive eligibility.” So if someone goes to a federally qualified health center or, more unfortunately, goes to the hospital, many of those types of providers can restore someone’s eligibility. So those are important protective pieces. We also know from the survey that you mentioned of our membership that many states and territories are extending those reconsideration protections to all coverage groups — also including older adults and people with disabilities.

Rovner: So are there any states that are doing anything that’s different and innovative? I remember when CHIP [the federal Children’s Health Insurance Program] was being stood up — and boy, that was a long time ago, like 1999 — South Carolina put flyers in pizza boxes, and some other state put flyers in sneaker boxes for back-to-school stuff. Are there better ways to maybe get ahold of these people?

McEvoy: So I think the answer is: a lot of different channels. Our colleagues in Louisiana have a partnership with Family Dollar stores to essentially feature this information on receipts. There’s a lot of work at pharmacy counters. Some of the big chain pharmacies have QR codes and other means of prompting people around their Medicaid eligibility. There’s going to be a big push for the back-to-school effort. And I think CMS and states are really interested, particularly in ensuring that children do not lose coverage even if their parents have regained employment and they’re no longer eligible. Another thing that’s going on is a lot of innovation in the means of enabling access to information. So many states have put in place personal apps through which people can track their own eligibility. There’s interest and some uptake of the so-called pizza-tracker function — so you can kind of see where you’re situated in that pipeline — and also a lot of use of automation to help call people back if they’re trying to get to state call centers. So really, all of those types of strategies … we’re seeing a huge amount of effort across the country.

Rovner: How’s the cooperation going with the Department of Health and Human Services? I know that … they seem to be not happy with some states. Are they being helpful, in general?

McEvoy: They’re being extraordinarily helpful. I would say that we often talk about Medicaid representing a federal-state equity partnership, and we’ve seen that manifest from the beginning of the first notice of the certainty around the start of the unwinding. CMCS has consistently offered guidance to states. They work with states using a mitigation approach as opposed to moving rapidly to compliance. We feel mitigation is the best way of essentially working out the strategies that are going to best protect continuing eligibility for people at the state level. And we really appreciate CMS’ efforts on that. We understand they do have to ensure accountability across the country, and we’re mutually committed to that.

Rovner: You better explain mitigation strategies.

McEvoy: Yeah, so this is a year where we are calling the question on eligibility standards that help ensure that the pathway to Medicaid coverage is a smooth one, and also that there is continuity of coverage. So, for any state that wasn’t yet meeting all those standards, CMCS essentially entered into an agreement with the state or territory to say, here is how you will get there. And that could have involved some means of improving the automatic renewals for Medicaid. It could have meant relying on an integrated eligibility processes. There are a lot of different tools and strategies that were put in place, but essentially that is a path to every state and territory coming into full compliance.

Rovner: Is there anything unexpected that’s happening? I know so much of this was predicted, and it was predicted that the states that went first that, you know, were really in a hurry to get extra people off of their rolls seem to be doing just that: getting extra people off of their rolls. Are you surprised at the differences among states?

McEvoy: I think that there have definitely been differences among states in terms of the tools they have used from a system standpoint, but I don’t see any differences in terms of retention of eligible people. That remains a shared goal across the entire country. And again, this is a watershed point where we have the opportunity to bring everyone to the same standards, ongoing, so that we help to prevent some of the heartache of the eligibility process for folks ongoing.

Rovner: Anything else I didn’t ask?

McEvoy: Well, I think that piece around the reconsideration period is particularly important. We are struck by there being probably less literacy around that option, and that’s something we want to continue to promote. The other piece I’d wind up by saying is that the Medicaid program is always available for people who are eligible. So in the worst-case scenario in which an otherwise eligible person loses coverage, they can always come back and be covered. This is in contrast to private insurance that may have an annual open enrollment period. Medicaid, as you know, is available on a rolling basis, and we want to keep reinforcing that theme so that no one goes with a gap in coverage.

Rovner: Kate McEvoy, thank you very much. And I hope we can call you back in a couple of months.

McEvoy: I would be very happy to hear from you.

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. I did mine already. Emmarie, why don’t you go next?

Huetteman: My story this week comes from KFF Health News, my colleague Darius Tahir. He has a story called “The NIH Ices a Research Project. Is It Self-Censorship?” Now, the story talks about the fact that the former head of NIH Francis Collins, was, as he was leaving, announcing an effort to study health communications. And we’re talking about not just doctor-to-patient communications, but actually also how mass communications impact American health. But as Darius found out, the acting director quietly ended the program as NIH was preparing to open its grant applications. And officials who spoke with us said that they think political pressure over misinformation is to blame. Now, we don’t have to look too far for examples of conservative pressure over misinformation and information these days. In particular, there’s a notable one from just last month out of a Louisiana court, the federal court decision that blocked government officials from communicating with social media companies. You really don’t have to look too far to see that there’s a chilling effect on information. And we’re talking about the NIH was going to study or rather fund studies into communication and information. Not misinformation, information: how people get information about their health. So it’s a pretty interesting example and a really great story worth your read.

Rovner: And I’ve done nothing but preach about public health communication for three years now.

Kenen: It’s a very good story.

Rovner: Yeah, it was a really good story. Rachel, you’re next.

Roubein: All right. This story is called “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Stat News, by Mohana Ravindranath. And I thought this story was really interesting because she kind of dived into what Mohana called “a budding movement to make architecture more inclusive” for the people and patients who are spending a lot, a lot of time in hospital walls. And what some researchers are doing is using virtual reality to essentially gauge how comfortable children who are patients are in hospital rooms. And she talked to researchers at Berkeley who were using these, like, virtual reality headsets to kind of study and explore mocked-up hospital rooms. And, I didn’t know a ton about this field. I mean, apparently it’s not new, but it’s this kind of growing sort of movement to make patients more comfortable in the space that they’re inhabiting for perhaps long periods of time.

Rovner: I went to a conference on architecture, hospital architecture, making it more patient-centered, 10 years ago. But my favorite thing that I still remember from that is they talked about putting art on the ceiling because people are either in bed or they’re in gurneys. They’re looking up at the ceiling a lot. And ceilings are scary in hospitals. So that was one of the things that I took away from that. OK, Joanne, now it’s your turn.

Kenen: OK. This is from Fox News. And yes, you did hear that right. It’s by Melissa Rudy, and the headline is “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’.” So at Covenant Health, they had a bunch of high-level guys in suits pretend they were nursing and/or pumping mothers, and they had to nurse every three hours for 20 minutes at a time. And they found it was quite difficult and quite cumbersome and they didn’t have enough privacy. And as one of them said, “There was no way to multitask.” But trust me, if you have two kids, you have to figure that out, too. So it was a really good story.

Rovner: Some of these things that we feel like should be required everywhere, but it was a great read; it was a really good story. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks this week to Zach Dyer, sitting in for the indefatigable Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever; I’m @jrovner. And also on Bluesky and Threads. Rachel?

Roubein: @rachel_roubein — that’s on Twitter.

Rovner: Joanne.

Kenen: In most places I’m @JoanneKenen. On Threads, I’m @joannekenen1.

Rovner: Emmarie.

Huetteman: And I am @emmarieDC.

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

Credits

Zach Dyer
Senior 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).

Medicare and Medicaid patients will make up 92% of the market for lecanemab, according to Eisai Co., which sells the drug under the brand name Leqembi. In addition to the company’s $26,500 annual price tag for the drug, treatment could cost U.S. taxpayers $82,500 per patient per year, on average, for genetic tests and frequent brain scans, safety monitoring, and other care, according to estimates from the Institute for Clinical and Economic Review, or ICER. The FDA gave the drug full approval July 6. About 1 million Alzheimer’s patients in the U.S. could qualify to use it.

Patients with early Alzheimer’s disease who took lecanemab in a major clinical trial declined an average of five months slower than other subjects over an 18-month period, but many suffered brain swelling and bleeding. Although those side effects usually resolved without obvious harm, they apparently caused three deaths. The great expense of the drug and its treatment raises questions about how it will be paid for, and who will benefit.

“In the history of science, it’s a significant achievement to slightly slow down progression of dementia,” said John Mafi, a researcher and associate professor of medicine at the David Geffen School of Medicine at UCLA. “But the actual practical benefits to patients are very marginal, and there is a real risk and a real cost.”

To qualify for Leqembi, patients must undergo a PET scan that looks for amyloid plaques, the protein clumps that clog the brains of many Alzheimer’s patients. About 1 in 5 patients who took Leqembi in the major clinical test of the drug developed brain hemorrhaging or swelling, a risk that requires those taking the drug to undergo frequent medical checkups and brain scans called MRIs.

In anticipation of additional costs from the Leqembi drug class, the Centers for Medicare & Medicaid Services in 2021 increased monthly premiums for Medicare patients by 15%, and premiums may rise again in 2024 after a slight decline this year.

Such increases can be a significant burden for many of the 62 million Medicare subscribers who live on fixed incomes. “Real people will be affected,” Mafi said. He contributed to a study that estimated lecanemab and related care would cost Medicare $2 billion to $5 billion a year, making it one of the most expensive taxpayer-funded treatments.

In its analysis, ICER suggested that Leqembi could be cost-effective at an annual price of $8,900 to $21,500. In an interview, David Rind, ICER’s chief medical officer, said $10,000 to $15,000 a year would be reasonable. “Above that range doesn’t seem like a good place,” he said.

Whatever its price, patients may be delayed getting access to Leqembi because of the relative shortage of specialists capable of managing the drug, which will require genetic and neuropsychological testing as well as the PET scan to confirm a patient’s eligibility. A similar drug, Eli Lilly’s donanemab, is likely to win FDA approval this year.

Already there are long waits for the testing needed to assess dementia, Mafi said, noting that one of his patients with mild cognitive impairment had to wait eight months for an evaluation.

Such testing is not readily at hand because of the paucity of effective treatment for Alzheimer’s, which has helped to make geriatrics a relatively unappealing specialty. The United States has about a third as many dementia specialists per capita as Germany, and about half as many as Italy.

“Time is of the essence” for the neuropsychological testing, Mafi said, because once a patient’s cognitive ability declines below a certain threshold, they become ineligible for treatment with the drug, which was tested only in patients in the earliest stages of the disease.

Mafi’s study estimates that patients without supplemental Medicare coverage will have to pay about $6,600 out-of-pocket for each year of treatment. That could put it out of reach for many of the 1 in 7 “dual eligible” Medicare beneficiaries whose income is low enough to simultaneously qualify them for state Medicaid programs. Those programs are responsible for about 20% of physician bills for drug infusions, but they don’t always cover the full amount.

Some practitioners, such as cancer centers, cover their Medicaid losses by receiving higher rates for privately insured patients. But since almost all lecanemab patients are likely to be on government insurance, that “cross-subsidization” is less of an option, said Soeren Mattke, director of the Center for Improving Chronic Illness Care at the University of Southern California.

This poses a serious health equity issue because “dual eligibles are low-income patients with limited opportunities and education, and at higher risk of chronic illnesses including dementia,” Mattke said in an interview. Yet many doctors may not be willing to treat them, he said. “The idea of denying access to this group is just appalling.”

Eisai spokesperson Libby Holman said the company was reaching out to specialists and primary care physicians to make them aware of the drug, and that reimbursement options were improving. Eisai will provide the drug at no cost to patients in financial need, she said, and its “patient navigators” can help lock down insurance coverage.

“A lot of clinicians are excited about the drug, and patients are hearing about it,” said David Moss, chief financial officer of INmune Bio, a company that has another Alzheimer’s drug in development. “It’s a money center for infusion centers and MRI operators. It provides reasons for patients to come into the office, which is a billing thing.”

Outstanding doubts about Leqembi and related drugs have given urgency to efforts to monitor patient experiences. CMS is requiring Leqembi patients to be entered into a registry that tracks their outcomes. The agency has established a registry, but the Alzheimer’s Association, the leading advocacy group for dementia patients, is funding its own database to track those being treated, offering physician practices $2,500 to join it and up to $300 per patient visit.

In a letter to CMS on July 27, a group of policy experts said CMS should ensure that any and all Leqembi registries create and share data detailed enough for researchers and FDA safety teams to obtain a clear picture of the drug’s real-world profile.

The anti-amyloid drugs like lecanemab have created a polarized environment in medicine between those who think the drugs are a dangerous waste of money and those who believe they are a brilliant first step to a cure, said ICER’s Rind, who thinks lecanemab has modest benefits.

“People are as dug in on this as almost anything I’ve ever seen in medicine,” he said. “I don’t think it’s healthy.”

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 Biden administration continued a bipartisan, decades-long effort to ensure that health insurance treats mental illnesses the same as other ailments, with a new set of regulations aimed at ensuring that services are actually available without years-long waits or excessive out-of-pocket costs.

Meanwhile, two more committees in Congress approved bills this week aimed at reining in the power of pharmacy benefit managers, who are accused of keeping prescription drug prices high to increase their bottom lines.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Anna Edney
Bloomberg

@annaedney

Read Anna's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Among the takeaways from this week’s episode:

• The Biden administration’s new rules to enforce federal mental health parity requirements include no threat of sanctions when health plans do not comply; noncompliance with even the most minimal federal rules has been a problem dating to the 1990s. Improving access to mental health care is not a new policy priority, nor a partisan one, yet it remains difficult to achieve.
• With the anniversary of the 988 Suicide & Crisis Lifeline, more people are becoming aware of how to access help and get it. Challenges remain, however, such as the hotline service’s inability to connect callers with local care. But the program seizes on the power of an initial connection for someone in a moment of crisis and offers a lifeline for a nation experiencing high rates of depression, anxiety, and suicide.
• In news about the so-called Medicaid unwinding, 12 states have paused disenrollment efforts amid concerns they are not following renewal requirements. A major consideration is that most people who are disenrolled would qualify to obtain inexpensive or even free coverage through the Affordable Care Act. But reenrollment can be challenging, particularly for those with language barriers or housing insecurity, for instance.
• With a flurry of committee activity, Congress is revving up to pass legislation by year’s end targeting the role of pharmacy benefit managers — and, based on the advertisements blanketing Washington, PBMs are nervous. It appears legislation would increase transparency and inform policymakers as they contemplate further, more substantive changes. That could be a tough sell to a public crying out for relief from high health care costs.
• Also on Capitol Hill, far-right lawmakers are pushing to insert abortion restrictions into annual government spending bills, threatening yet another government shutdown on Oct. 1. The issue is causing heartburn for less conservative Republicans who do not want more abortion votes ahead of their reelection campaigns.
• And the damage to a Pfizer storage facility by a tornado is amplifying concerns about drug shortages. After troubling problems with a factory in India caused shortages of critical cancer drugs, decision-makers in Washington have been keeping an eye on the growing issues, and a response may be brewing.

Also this week, Rovner interviews KFF Health News’ Céline Gounder about the new season of her “Epidemic” podcast. This season chronicles the successful public health effort to eradicate smallpox.

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

Julie Rovner: The Nation’s “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality,” by Amy Littlefield.

Joanne Kenen: Food & Environment Reporting Network’s “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” by Gabriel Popkin.

Anna Edney: Bloomberg’s “Mineral Sunscreens Have Potential Hidden Dangers, Too,” by Anna Edney.

Sarah Karlin-Smith: CNN’s “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” by Brenda Goodman.

Also mentioned in this week’s episode:

• CNN’s “Medicaid Disenrollments Paused in a Dozen States After Failure to Comply With Federal Rules,” by Tami Luhby.
• Abortion, Every Day’s “Why Are OBGYNs Being Forced to Go to Texas?” by Jessica Valenti.
• Politico’s “GOP Looks to Spending Fights for Wins on Abortion, Trans Care, Contraception,” by Alice Miranda Ollstein.
• KFF Health News’ “A Year With 988: What Worked? What Challenges Lie Ahead,” by Colleen DeGuzman.

click to open the transcript

Transcript: Another Try for Mental Health ‘Parity’

KFF Health News’ ‘What the Health?’Episode Title: Another Try for Mental Health ‘Parity’Episode Number: 307Published: July 27, 2023

[Editor’s note: This transcript, generated using transcription software, 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, July 27, at 10 a.m. As always, news happens fast and things might have 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 Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: Sarah Karlin-Smith, the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: And Anna Edney of Bloomberg News.

Edney: Hello.

Rovner: Later in this episode, we’ll have my interview with my KFF colleague Céline Gounder about the new season of her podcast “Epidemic,” which tracks one of the last great public health success stories, the eradication of smallpox. But first, this week’s news. I want to start this week with mental health, which we haven’t talked about in a while — specifically, mental health parity, which is both a law and a concept, that mental ailments should be covered and reimbursed by health insurance the same way as a broken bone or case of pneumonia or any other — air quotes — “physical ailment.” Policymakers, Republican and Democrat, and the mental health community have been fighting pretty much nonstop since the mid-1990s to require parity. And despite at least five separate acts of Congress over that time — I looked it up this week — we are still not there yet. To this day, patients with psychiatric illnesses find their care denied reimbursement, made difficult to access, or otherwise treated as lesser. This week, the Biden administration is taking another whack at the issue, putting out proposed rules it hopes will start to close the remaining parity gap, among other things by requiring health plans to analyze their networks and prior authorization rules and other potential barriers to care to ensure that members actually can get the care they need. What I didn’t see in the rules, though, was any new threat to sanction plans that don’t comply — because plans have been not complying for a couple of decades now. How much might these new rules help in the absence of a couple of multimillion-dollar fines?

Edney: I had that same question when I was considering this because I didn’t see like, OK, like, great, they’re going to do their self-policing, and then what? But I do think that there’s the possibility, and this has been used in health care before, of public shaming. If the administration gets to look over this data and in some way compile it and say, here’s the good guys, here’s the bad guys, maybe that gets us somewhere.

Rovner: You know, it strikes me, this has been going on for so very long. I mean, at first it was the employer community actually that did most of the negotiating, not the insurers. Now that it’s required, it’s the insurers who are in charge of it. But it has been just this incredible mountain to scale, and nobody has been able to do it yet.

Kenen: And it’s always been bipartisan.

Rovner: That’s right.

Kenen: And it really goes back to mostly, you know, the late Sen. [Paul] Wellstone [(D-Minn.)] and [Sen. Pete] Domenici [(R-N.M.)], both of whom had close relatives with serious mental illness. You know, Domenici was fairly conservative and traditional conservative, and Wellstone was extremely liberal. And they just said, I mean, this — the parity move began — the original parity legislation, at least the first one I’m aware of. And it was like, I think it was before I came to Washington. I think it was in the ’80s, certainly the early — by the ’90s.

Rovner: It was 1996 when when the first one actually passed. Yeah.

Kenen: I mean, they started talking about it before that because it took them seven or eight years. So this is not a new idea, and it’s not a partisan idea, and it’s still not done. It’s still not there.

Edney: I think there’s some societal shift too, possibly. I mean, we’re seeing it, and maybe we’re getting closer. I’ve seen a lot of billboards lately. I’ve done some work travel. When I’m on the road, I feel like I’m always seeing these billboards that are saying mental health care is health care. And trying to hammer that through has really taken a long time.

Rovner: So while we are on the subject of mental health, one of the good things I think the government has done in the last year is start the 988 Suicide & Crisis Lifeline, which turned 1 this month. Early data from shifting the hotline from a 10-digit number to a three-digit one that’s a lot easier to remember does suggest that more people are becoming aware of immediate help and more people are getting it. At the same time, it’s been able to keep up with the demand, even improving call answering times — I know that was a big concern — but there is still a long way to go, and this is hardly a panacea for what we know is an ongoing mental health crisis, right?

Karlin-Smith: This is a good first step to get people in crisis help without some of the risks that we’ve seen. If you go towards the 911 route, sometimes police are not well trained to handle these calls and they end in worse outcomes than necessary. But then you have to have that second part, which is what we were talking about before, which is the access to the longer-term mental health support to actually receive the treatment you need. There’s also some issues with this hotline going forward in terms of long-term funding and, you know, other tweaks they need to work out to make sure, again, that people who are not expecting to interact with law enforcement actually don’t end up indirectly getting there and things like that as well.

Kenen: Do any of you know whether there’s discussion of sort of making people who don’t remember it’s 988 and they call 911 — instead of dispatching cops, are the dispatchers being trained to just transfer it over to 988?

Rovner: That I don’t know.

Kenen: I’m not aware of that. But it just sort of seems common sense.

Rovner: One thing I know they’re working on is, right now I think there’s no geolocation. So when you call 988, you don’t necessarily get automatically referred to resources that are in your community because they don’t necessarily know where you’re calling from. And I know that’s an effort. But yeah, I’m sure there either is or is going to be some effort to interact between 988 and 911.

Kenen: It’s common sense to us. It doesn’t mean it’s actually happening. I mean, this is health care.

Rovner: As we point out, this is mental health care, too.

Kenen: Yeah, right.

Rovner: It’s a step.

Kenen: But I think that, you know, sort of the power of that initial connection is something that’s easy for people to underestimate. I mean, my son in college was doing a helpline during 2020-2021. You know, he was trained, and he was also trained, like, if you think this is beyond what a college-aged volunteer, that if you’re uncertain, you just switched immediately to a mental health professional. But sometimes it’s just, people feel really bad and just having a voice gets them through a crisis moment. And as we all know, there are a lot of people having a lot of crisis moments. I doubt any of us don’t know of a suicide in the last year, and maybe not in our immediate circle, but a friend of a friend, I mean, or, you know — I know several. You know, we are really at a moment of extreme crisis. And if a phone call can help some percentage of those people, then, you know, it needs to be publicized even more and improved so it can be more than a friendly voice, plus a connection to what, ending this repetition of crisis.

Rovner: I feel like the people who worked hard to get this implemented are pretty happy a year later at how, you know — obviously there’s further to go — but they’re happy with how far they’ve come. Well, so, probably the only thing worse than not getting care covered that should be is losing your health coverage altogether, which brings us to the Medicaid unwinding, as states redetermine who’s still eligible for Medicaid for the first time since the start of the pandemic. Our podcast colleague Tami Luhby over at CNN had a story Friday that I still haven’t seen anywhere else. Apparently 12 states have put their disenrollments on pause, says Tami. But we don’t know which 12, according to the KFF disenrollment tracker. As of Wednesday, July 26, at least 3.7 million people have been disenrolled from the 37 states that are reporting publicly, nearly three-quarters of those people for, quote, “procedural reasons,” meaning those people might still be eligible but for some reason didn’t complete the renewal process. The dozen states on pause are apparently ones that HHS [the Department of Health and Human Services] thinks are not following the renewal requirements and presumably ones whose disenrollments are out of line. The Centers for Medicare & Medicaid Services, which is overseeing this, is not naming those states, but this points up exactly what a lot of people predicted would happen when states started looking at eligibility again, that a lot of people who were quite likely still eligible were simply going to lose their insurance altogether, right?

Edney: Yeah, it seemed like there was a lot of preparation in some ways to anticipating this. And then, yeah, obviously you had the states that were just raring to go and try to get people off the rolls. And yeah, it would be very interesting to know what those 12 are. I think Tami’s reporting was stellar and she did a really good job. But that’s, like, one piece of the puzzle we’re missing. And I know CMS said that they’re not naming them because they are working well with them to try to fix it.

Rovner: The one thing we obviously do know is that there are several states that are doing this faster than is required — in fact, faster than is recommended. And what we know is that the faster they do it, the more likely they are going to have people sort of fall between the cracks. The people who are determined to be no longer eligible for Medicaid are supposed to be guided to programs for which they are eligible. And presumably most of them, unless they have, you know, gotten a really great job or hit the lottery, will still be eligible at least for subsidies under the Affordable Care Act. And they’re supposed to be guided to those programs. And it’s not clear yet whether that’s happening, although I know there are an awful lot of people who are watching this pretty closely. There were over 90 million people on Medicaid by the end of the pandemic, by the point at which states no longer had to keep people on. That’s a lot more people than Medicaid normally has. It’s usually more around 70 or even 80 million. So there’s excess people. And the question is what’s going to happen to those people and whether they’re going to have some sort of health insurance. And I guess it’s going to be more than a couple of months before we know that. Yes, Joanne.

Kenen: I think that it’s important to remember that there’s no open enrollment season for Medicaid the way there is for the ACA, so that if you’re disenrolled and you get sick and you go to a doctor or a hospital, they can requalify you and you can get it again. The problem is people who think that they’re disenrolled or are told that they’re disenrolled may not realize. They may not go to the doctor because they think they can’t afford it. They may not understand there’s a public education campaign there, too, that I haven’t seen. You know, if you get community health clinics, hospitals, they can do Medicare, Medicaid certification. But it’s dangerous, right? If you think, oh, I’m going to get a bill I can’t afford and I’m just going to see if I can tough this out, that’s not the way to take care of your health. So there’s that additional conundrum. And then, you know, I think that HHS can be flexible on special enrollment periods for those who are not Medicaid-eligible and are ACA-eligible, but most of them are still Medicaid-eligible.

Rovner: If you get kicked off of Medicaid, you get an automatic special enrollment for the ACA anyway.

Kenen: But not forever. If the issue is it’s in a language you don’t speak or at an address you don’t live in, or you just threw it out because you didn’t understand what it was — there is institutional failures in the health care system, and then there’s people have different addresses in three years, particularly poor people; they move around. There’s a communication gap. You know, I talked to a health care system a while ago in Indiana, a safety net, that was going through electronic health records and contacting people. And yet that’s Indiana and they, you know, I think it was Tami who pointed out a few weeks ago on the podcast, Indiana is not doing great, in spite of, you know, really more of a concerted effort than other states or at least other health systems, not that I talk to every single health system in the country. I was really impressed with how proactive they were being. And still people are falling, not just through the cracks. I mean, there’s just tons of cracks. It’s like, you know, this whole landscape of cracks.

Rovner: I think everybody knew this was going to be a big undertaking. And obviously the states that are trying to do it with some care are having problems because it’s a big undertaking. And the states that are doing it with a little bit less care are throwing a lot more people off of their health insurance. And we will continue to follow this. So it is the end of July. I’m still not sure how that happened.

Kenen: ’Cause after June, Julie.

Rovner: Yes. Thank you. July is often when committees in Congress rush to mark up bills that they hope to get to the floor and possibly to the president in that brief period when lawmakers return from the August recess before they go out for the year, usually around Thanksgiving. This year is obviously no exception. While Sen. Bernie Sanders [(I-Vt.)] at the Health, Education, Labor and Pensions Committee has delayed consideration of that primary care-community health center bill that we talked about last week until September, after Republicans rebelled against what was supposed to have been a bipartisan bill, committee action on pharmacy benefit managers and other Medicare issues did take place yesterday in the Senate Finance Committee and the House Ways and Means Committee. Sarah, you’re following this, right? What’s happening? And I mean, so we’ve now had basically all four of the committees that have some kind of jurisdiction over this who’ve acted. Is something going to happen on PBM regulation this year?

Karlin-Smith: Actually, five committees have acted because the House Ed[ucation] and Workforce Committee has also acted on the topic. So there’s a lot of committees with a stake in this. I think there’s certainly set up for something for the fall, end of the year, to happen in the pharmacy benefit manager space. And there’s a decent amount of bipartisanship around the issue, depending on exactly which committee you’re looking at. But even if the policies that haven’t gotten through haven’t been bipartisan, I think there’s general bipartisan interest among all the committees of tackling the issue. The question is how meaningful, I guess, the policies that we get done are. Right now it looks like what we’re going to end up with is some kind of transparency measure. It reminded me a little bit of our discussion of the mental health stuff [President Joe] Biden is doing going forward. Essentially what it’s going to end up doing is get the government a lot of detailed data about how PBMs operate, how this vertical integration of PBMs — so there’s a lot of common ownership between PBMs, health insurance plans, pharmacies and so forth — may be impacting the cost of our health care and perhaps in a negative way. And then from that point, the idea would be that later Congress could go back and actually do the sort of policy reforms that might be needed. So I know there are some people that are super excited about this transparency because it is such an opaque industry. But at the same point, you can’t kind of go to your constituents and say, “We’ve changed something,” right away or, you know, “We’re going to save you a ton of money with this kind of legislation.”

Rovner: You could tell how worried the PBMs are by how much advertising you see, if you still watch TV that has advertising, which I do, because I watch cable news. I mean, the PBMs are clearly anxious about what Congress might do. And given the fact that, as you point out and as we’ve been saying for years, drug prices are a very bipartisan issue — and it is kind of surprising, like mental health, it’s bipartisan, and they still haven’t been able to push this as far as I think both Democrats and Republicans would like for it to go. Is there anything in these bills that surprised you, that goes further than you expected or less far than expected?

Karlin-Smith: There’s been efforts to sort of delink PBM compensation from rebates. And in the past, when Congress has tried to look into doing this, it’s ended up being extremely costly to the government. And they figured out in this set of policies sort of how to do this without those costs, which is basically, they’re making sure that the PBMs don’t have this perverse incentive to make money off of higher-priced drugs. However, the health plans are still going to be able to do that. So it’s not clear how much of a benefit this will really be, because at this point, the health plans and the PBMs are essentially one and the same. They have the same ownership. But, you know, I do think there has been some kind of creativity and thoughtfulness on Congress’ part of, OK, how do we tackle this without also actually increasing how much the government spends? Because the government helps support a lot of the premiums in these health insurance programs.

Rovner: Yeah. So the government has quite a quite a financial stake in how this all turns out. All right. Well, we will definitely watch that space closely. Let us move on to abortion. In addition to it being markup season for bills like PBMs, it’s also appropriations season on Capitol Hill, with the Sept. 30 deadline looming for a completion of the 12 annual spending bills. Otherwise, large parts of the government shut down, which we have seen before in recent years. And even though Democrats and Republicans thought they had a spending detente with the approval earlier this spring of legislation to lift the nation’s debt ceiling, Republicans in the House have other ideas; they not only want to cut spending even further than the levels agreed to in the debt ceiling bill, but they want to add abortion and other social policy riders to a long list of spending bills, including not just the one for the Department of Health and Human Services but the one for the Food and Drug Administration, which is in the agriculture appropriations, for reasons I’ve never quite determined; the financial services bill, which includes funding for abortion in the federal health insurance plan for government workers; and the spending bill for Washington, D.C., which wants to use its own taxpayer money for abortion, and Congress has been making that illegal pretty much for decades. In addition to abortion bans, conservatives want riders to ban gender-affirming care and even bar the FDA from banning menthol cigarettes. So it’s not just abortion. It’s literally a long list of social issues. Now, this is nothing new. A half a dozen spending bills have carried a Hyde [Amendment] type of abortion ban language for decades, as neither Republicans nor Democrats have had the votes to either expand or take away the existing restrictions. On the other hand, these conservatives pushing all these new riders don’t seem to care if the government shuts down if these bills pass. And that’s something new, right?

Kenen: Over abortion it’s something new, but they haven’t cared. I mean, they’ve shut down the government before.

Rovner: That’s true. The last time was over Obamacare.

Kenen: Right. And, which, the great irony is the one thing they — when they shut down the government because Obamacare was mandatory, not just discretionary funding, Obamacare went ahead anyway. So, I mean, minor details, but I think this is probably going to be an annual battle from now on. It depends how hard they fight for how long. And with some of these very conservative, ultra-conservative lawmakers, we’ve seen them dig in on abortion, on other issues like the defense appointees. So I think it’s going to be a messy October.

Rovner: Yeah, I went back and pulled some of my old clips. In the early 1990s I used to literally keep a spreadsheet, and I think that’s before we had Excel, of which bill, which of the appropriations bills had abortion language and what the status was of the fights, because they were the same fights year after year after year. And as I said, they kind of reached a rapprochement at one point, or not even a rapprochement — neither side could move what was already there. At some point, they kind of stopped trying, although we have seen liberals the last few years try to make a run at the actual, the original Hyde Amendment that bans federal funding for most abortions — that’s in the HHS bill — and unsuccessfully. They have not had the votes to do that. Presumably, Republicans don’t have the votes now to get any of these — at least certainly not in the Senate — to get any of these new riders in. But as we point out, they could definitely keep the government closed for a while over it. I mean, in the Clinton administration, President [Bill] Clinton actually had to swallow a bunch of new riders because either it was that or keep the government closed. So that’s kind of how they’ve gotten in there, is that one side has sort of pushed the other to the brink. You know, everybody seems to assume at this point that we are cruising towards a shutdown on Oct. 1. Does anybody think that we’re not?

Kenen: I mean, I’m not on the Hill anymore, but I certainly expect a shutdown. I don’t know how long it lasts or how you resolve it. And I — even more certain we’ll have one next year, which, the same issues will be hot buttons five weeks before the elections. So whatever happens this year is likely to be even more intense next year, although, you know, next year’s far away and the news cycle’s about seven seconds. So, you know, I think this could be an annual fight and for some time to come, and some years will be more intense than others. And you can create a deal about something else. And, you know, the House moderates are — there are not many moderates — but they’re sort of more traditional conservatives. And there’s a split in the Republican Party in the House, and we don’t know who’s going to fold when, and we don’t — we haven’t had this kind of a showdown. So we don’t really know how long the House will hold out, because some of the more moderate lawmakers who are — they’re all up for reelection next year. I mean, some of them don’t agree. Some of are not as all or nothing on abortion as the —

Rovner: Well, there are what, a dozen and a half Republicans who are in districts that President Biden won who do not want to vote on any of these things and have made it fairly clear to their leadership that they do not want to vote on any of these things. But obviously the conservatives do.

Kenen: And they’ve been public about that. They’ve said it. I mean, we’re not guessing. Some of them spoke up and said, you know, leave it to the states. And that’s what the court decided. And they don’t want to nationalize this even further than it’s nationalized. And I think, you know, when you have the Freedom Caucus taking out Marjorie Taylor Greene, I mean, I have no idea what’s next.

Rovner: Yeah, things are odd. Well, I want to mention one more abortion story this week that I read in the newsletter “Abortion, Every Day,” by Jessica Valenti. And shoutout here: If you’re interested in this issue and you don’t subscribe, you’re missing out. I will include the link in the show notes. The story’s about Texas and the exam to become a board-certified obstetrician-gynecologist. The board that conducts the exam is based in Dallas and has been for decades, and Texas is traditionally where this test has been administered. During the pandemic, the exam was given virtually because nothing was really in person. But this year, if a doctor wants to become board-certified, he or she will have to travel to Texas this fall. And a lot of OB-GYNs don’t want to do that, for fairly obvious reasons, like they are afraid of getting arrested and sent to prison because of Texas’ extreme anti-abortion laws. And yikes, really, this does not seem to be an insignificant legal risk here for doctors who have been performing abortions in other states. This is quite the dilemma, isn’t it?

Karlin-Smith: Well, the other thing I thought was interesting about — read part of that piece — is just, she was pointing out that you might not just want to advertise in a state where a lot of people are anti-abortion that all of these people who perform abortions are all going to be at the same place at the same time. So it’s not just that they’re going to be in Texas. Like, if anybody wants to go after them, they know exactly where they are. So it can create, if nothing else, just like an opportunity for big demonstrations or interactions that might disrupt kind of the normal flow of the exam-taking.

Kenen: Or violence. Most people who are anti-abortion are obviously not violent, but we have seen political violence in this country before. And you just need one person, which, you know, we seem to have plenty of people who are willing to shoot at other people. I thought it was an excellent piece. I mean, I had not come across that before until you sent it around, and there’s a solution — you know, like, if you did it virtually before — and I wasn’t clear, or maybe I just didn’t pay attention: Was this certification or also recertification?

Rovner: No, this was just certification. Recertification’s separate. So these are these are young doctors who want to become board-certified for the first time.

Kenen: But the recertification issues will be similar. And this is a yearly — I mean, I don’t see why they just don’t give people the option of doing it virtual.

Rovner: But we’ll see if they back down. But you know, I had the same thought that Sarah did. It’s like, great, let’s advertise that everybody’s going to be in one place at one time, you know, taking this exam. Well, we’ll see how that one plays out. Well, finally this week, building on last week’s discussion on health and climate change and on drug shortages, a tornado in Rocky Mount, North Carolina, seriously damaged a giant Pfizer drug storage facility, potentially worsening several different drug shortages. Sarah, I remember when the hurricane in Puerto Rico seemed to light a fire under the FDA and the drug industry about the dangers of manufacturing being too centralized in one place. Now we have to worry about storage, too? Are we going to end up, like, burying everything underground in Fort Knox?

Karlin-Smith: I think there’s been a focus even since before [Hurricane] Maria, but that certainly brought up that there’s a lack of redundancy in U.S. medical supply chains and, really, global supply chains. It’s not so much that they need to be buried, you know, that we need bunkers. It’s just that — Pfizer had to revise the numbers, but I think the correct number was that that facility produces about 8% of the sterile kind of injectables used in the U.S. health system, 25% of all Pfizer’s — it’s more like each company or the different plants that produce these drugs, it needs to be done in more places so that if you have these severe weather events in one part of the country, there’s another facility that’s also producing these drugs or has storage. So I don’t know that these solutions need to be as extreme as you brought up. But I think the problem has been that when solutions to drug shortages have come up in Congress, they tend to focus on FDA authorities or things that kind of nibble around the edges of this issue, and no one’s ever really been able to address some of the underlying economic tensions here and the incentives that these companies have to invest in redundancy, invest in better manufacturing quality, and so forth. Because at the end of the day these are often some of the oldest and cheapest drugs we have, but they’re not necessarily actually the easiest to produce. While oftentimes we’re talking about very expensive, high-cost drugs here, this may be a case where we have to think about whether we’ve let the prices drop too low and that’s sort of keeping a market that works if everything’s going perfectly well but then leads to these shortages and other problems in health care.

Rovner: Yeah, the whole just-in-time supply chain. Well, before we leave this, Anna, since you’re our expert on this, particularly international manufacturing, I mean, has sort of what’s been happening domestically lit a fire under anybody who’s also worried about some of these, you know, overseas plants not living up to their safety requirements?

Edney: Well, I think there are these scary things happen like a tornado or hurricane and everybody is kind of suddenly paying attention. But I think that the decision-makers in the White House or on Capitol Hill have been paying attention a little bit longer. We’ve seen these cancer — I mean, for a long time not getting anything done, as Sarah mentioned — but recently, it’s sort of I think the initial spark there was these cancer drug shortages that, you know, people not being able to get their chemo. And that was from an overseas factory; that was from a factory in India that had a lot of issues, including shredding all of their quality testing documents and throwing them in a truck, trying to get it out of there before the FDA inspectors could even see it.

Kenen: That’s always very reassuring.

Edney: It is. Yeah. It makes you feel really good. And one bag did not make it out of the plant in time, so they just threw acid on it instead of letting FDA inspectors look at it. So it’s definitely building in this tornado. And what might come out of it if there are a lot of shortages, I haven’t seen huge concern yet from the FDA on that front. But I think that it’s something that just keeps happening. It’s not letting up. And, you know, my colleagues did a really good story yesterday. There’s a shortage of a certain type of penicillin you give to pregnant people who have syphilis. If you pass syphilis on to your baby, the baby can die or be born with a lot of issues — it’s not like if an adult gets syphilis — and they’re having to ration it, and adults aren’t getting treated fully for syphilis because the babies need it more so, and so this is like a steady march that just keeps going on. And there’s so many issues with the industry, sort of how it’s set up, what Sarah was talking about, that we haven’t seen anybody really be able to touch yet.

Rovner: We will continue to stay on top of it, even if nobody else does. Well, that is this week’s news. Now we will play my interview with KFF’s Céline Gounder, and then we will come back and do our extra credit. I am pleased to welcome back to the podcast Dr. Céline Gounder, KFF senior fellow and editor-at-large for public health, as well as an infectious disease specialist and epidemiologist in New York and elsewhere. Céline is here today to tell us about the second season of her podcast, “Epidemic,” which tells the story of the successful effort to eradicate smallpox and explores whether public health can accomplish such big things ever again. Céline, thank you for joining us.

Céline Gounder: It’s great to be here, Julie.

Rovner: So how did you learn about the last steps in the journey to end smallpox, and why did you think this was a story worth telling broadly now?

Gounder: Well, this is something I actually studied back when I was in college in the ’90s, and I did my senior thesis in college on polio eradication, and this was in the late ’90s, and we have yet to eradicate polio, which goes to show you how difficult it is to eradicate an infectious disease. And in the course of doing that research, I was an intern at the World Health Organization for a summer and then continued to do research on it during my senior year. I also learned a lot about smallpox eradication. I got to meet a lot of the old leaders of that effort, folks like D.A. Henderson and Ciro de Quadros. And fast-forward to the present day: I think coming out of covid we’re unfortunately not learning what at least I think are the lessons of that pandemic. And I think sometimes it’s easier to go back in time in history, and that helps to depoliticize things, when people’s emotions are not running as high about a particular topic. And my thought was to go back and look at smallpox: What are the lessons from that effort, a successful effort, and also to make sure to get that history while we still have some of those leaders with us today.

Rovner: Yes, you’re singing my song here. I noticed the first episode is called “The Goddess of Smallpox.” Is there really a goddess of smallpox?

Gounder: There is: Shitala Mata. And the point of this episode was really twofold. One was to communicate the importance of understanding local culture and beliefs, not to dismiss these as superstitions, but really as ways of adapting to what was, in this case, a very centuries-long reality of living with smallpox. And the way people thought about it was that in some ways it was a curse, but in some ways it was also a blessing. And understanding that dichotomy is also important, whether it’s with smallpox or other infectious diseases. It’s important to understand that when you’re trying to communicate about social and public health interventions.

Rovner: Yeah, because I think people don’t understand that public health is so unique to each place. I feel like in the last 50 years, even through HIV and other infectious diseases, the industrialized world still hasn’t learned very well how to deal with developing countries in terms of cultural sensitivity and the need for local trust. Why is this a lesson that governments keep having to relearn?

Gounder: Well, I would argue we don’t even do it well in our own country. And I think it’s because we think of health in terms of health care, not public health, in the United States. And that also implies a very biomedical approach to health issues. And I think the mindset here is very much, oh, well, once you have the biomedical tools — the vaccines, the diagnostics, the drugs — problem solved. And that’s not really solving the problem in a pandemic, where much of your challenge is really social and political and economic and cultural. And so if you don’t think about it in those terms, you’re really going to have a flat-footed response.

Rovner: So what should we have learned from the smallpox eradication effort that might have helped us deal with covid or might help us in the future deal with the next pandemic?

Gounder: Well, I think one side of this is really understanding what the local culture was, spending time with people in community to build trust. I think we came around to understanding it in part, in some ways, in some populations, in some geographies, but unfortunately, I think it was very much in the crisis and not necessarily a long-term concerted effort to do this. And that I think is concerning because we will face other epidemics and pandemics in the future. So, you know, how do you lose trust? How do you build trust? I think that’s a really key piece. Another big one is dreaming big. And Dr. Bill Foege — he was one of the leaders of smallpox eradication, went on to be the director of the CDC [Centers for Disease Control and Prevention] under President [Jimmy] Carter — one of the pieces of advice he’s given to me as a mentor over the years is you’ve got to be almost foolishly optimistic about getting things done, and don’t listen to the cynics and pessimists. Of course, you want to be pragmatic and understand what will or won’t work, but to take on such huge endeavors as eradicating smallpox, you do have to be very optimistic and remind yourself every day that this is something you can do if you put your mind to it.

Rovner: I noticed, at least in the first couple of episodes that I’ve listened to, the media doesn’t come out of this looking particularly good. You’re both a journalist and a medical expert. What advice do you have for journalists trying to cover big public health stories like this, like covid, like things that are really important in how you communicate this to the public?

Gounder: Well, I think one is try to be hyperlocal in at least some of your reporting. I think one mistake during the pandemic was having this very top-down perspective of “here is what the CDC says” or “here is what the FDA says” or whomever in D.C. is saying, and that doesn’t really resonate with people. They want to see their own experiences reflected in the reporting and they want to see people from their community, people they trust. And so I think that is something that we should do better at. And unfortunately, we’re also somewhat hampered in doing so because there’s been a real collapse of local journalism in most of the country. So it really does fall to places like KFF Health News, for example, to try to do some of that important reporting.

Rovner: We will all keep at it. Céline Gounder, thank you so much for joining us. You can find Season 2 of “Epidemic,” called “Eradicating Smallpox,” wherever you get your podcasts.

Gounder: Thanks, Julie.

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

Karlin-Smith: Sure. I took a look at a piece from Brenda Goodman at CNN called “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” and it’s a really good deep dive into — people probably have heard of Ozempic, Wegovy — these what are called GLP-1 drugs that have been used for diabetes. And we’ve realized in higher doses even for people without diabetes, they often are very helpful at losing weight, that that’s partially because they slow the passage of food through your stomach. And there are questions about whether for some people that is leading to stomach paralysis or other extreme side effects. And I think it’s a really interesting deep dive into the complicated world of figuring out, Is this caused by the drug? Is it caused by other conditions that people have? And then how should you counsel people about whether they should receive the drugs and the benefits outweighing the risks? So I think it’s like just a good thing for people to read when you sort of hear all this hype about a product and how great they must be, that it’s always a little bit more complicated than that. And it also brought up another aspect of it, which is how these drugs may impact people who are going to get surgery and anesthesia and just the importance of communicating this to your doctor so they know how to appropriately handle the drugs. Because if you still have food content in your stomach during a surgery, that can be extremely dangerous. And I thought just that aspect alone of this story is really interesting, because they talk about people maybe not wanting to even let their doctors know they’re on these drugs because of stigma surrounding weight loss. And just again, once you get a new medicine that might end up being taken by a lot of people, the complications or, you know, there’s the dynamics of how it impacts other parts of medicine, and we need to adjust.

Rovner: Yeah. And I think the other thing is, you know, we know these drugs are safe because people with diabetes have been taking them for, what, six or seven years. But inevitably, anytime you get a drug that lots more people take, then you start to see the outlier side effects, which, if it’s a lot of people, can affect a lot of people. Joanne.

Kenen: I have a piece from FERN, which is the Food & Environment Reporting Network and in partnership with Yale Environ 360, and it’s by Gabriel Popkin. And it’s called “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” And I knew nothing about smart agriculture, which is why I found this so interesting. So, this is an intersection of climate change and food, which is obviously also a factor in climate change. And there’s a lot of money from the Biden administration for farmers to use new techniques that are more green-friendly because as we all know, you know, beef and dairy, things that we thought were just good for us — maybe not beef so much — but, like, they’re really not so good for the planet we live on. So can you do things like, instead of using fertilizer, plant cover crops in the offseason? I mean, there’s a whole list of things that — none of us are farmers, but there’s also questions about are they going to work? Is it greenwashing? Is it stuff that will work but not in the time frame that this program is funding? How much of it’s going to go to big agribusiness, and how much of it is going to go to small farmers? So it’s one hand, it’s another. You know, there’s a lot of low-tech practices. We’re going to have to do absolutely everything we can on climate. We’re going to have to use a variety of — you know, very large toolkit. So it was interesting to me reading about these things that you can do that make agriculture, you know, still grow our food without hurting the planet, but also a lot of questions about, you know, is this really a solution or not? But, you know, I didn’t know anything about it. So it was a very interesting read.

Rovner: And boy, you think the drug companies are influential on Capitol Hill. Try going with big agriculture. Anna.

Edney: I’m going to toot my own horn for a second here —

Rovner: Please.

Edney: — and do one of my mini-investigations that I did, “Mineral Sunscreens Have Potential Hidden Dangers, Too.” So there’s been a lot of talk: Use mineral sunscreen to save the environment or, you know, for your own health potentially. But they’re white, they’re very thick. And, you know, people don’t want to look quite that ghostly. So what’s been happening lately is they’ve been getting better. But what I found out is a lot of that is due to a chemical — that is what people are trying to move away from, is chemical sunscreens — but the sunscreen-makers are using this chemical called butyloctyl salicylate. And you can read the article for kind of the issues with it. I guess the main one I would point out is, you know, I talked to the Environmental Working Group because they do these verifications of sunscreens based on their look at how good are they for your health, and a couple of their mineral ones had this ingredient in it. So when I asked them about it, they said, Oh, whoops; like, we do actually need to revisit this because it is a chemical that is not recommended for children under 4 to be using on their bodies. So there’s other issues with it, too — just the question of whether you’re really being reef-safe if it’s in there, and other things as well.

Rovner: It is hard to be safe and be good to the planet. My story this week is by Amy Littlefield of The Nation magazine, and it’s called “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality.” It’s about her visit to the annual conference of the National Right to Life Committee, which for decades was the nation’s leading anti-abortion organization, although it’s been eclipsed by some others more recently. The story includes a couple of eye-opening observations, including that the anti-abortion movement is surprised that all those bans didn’t actually reduce the number of abortions by very much. As we know, women who are looking for abortions normally will find a way to get them, either in state or out of state or underground or whatever. And we also learned in this story that some in the movement are willing to allow rape and incest exceptions in abortion bills, which they have traditionally opposed, because they want to use those as sweeteners for bills that would make it easier to enforce bans, stronger bans, things like the idea in Texas of allowing individual citizens to use civil lawsuits and forbidding local prosecutors from declining to prosecute abortion cases. We’re seeing that in some sort of blue cities in red states. It’s a really interesting read and I really recommend it. OK. That is our show for this week. As always, if you enjoyed the podcast, you can subscribe where ever 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 producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner, and I’m on Bluesky and Threads. Joanne.

Kenen: @joannekenen1 at Threads.

Rovner: Sarah.

Karlin-Smith: I’m @SarahKarlin or @sarah.karlinsmith, depending on which of these many social media platforms you’re looking at, though.

Rovner: Anna.

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

Rovner: You can always find us here next week where we will always be in your podcast feed. 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, Stitcher, 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 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.

It took more than two years, but the Biden administration has finally kept a promise made by then-candidate Joe Biden to roll back the Trump administration’s expansion of short-term, limited-duration health plans. The plans have been controversial because, while they offer lower premiums than more comprehensive health plans, they offer far fewer benefits and are not subject to the consumer protections of the Affordable Care Act.

Also this week, the FDA for the first time approved the over-the-counter sale of a hormonal birth control pill. With more states imposing restrictions on abortion, backers of the move say making it easier to prevent pregnancy is necessary now more than ever.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Amy Goldstein of The Washington Post, and Rachel Cohrs of Stat.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Amy Goldstein
The Washington Post

@goldsteinamy

Read Amy's Stories

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Among the takeaways from this week’s episode:

• The FDA’s much-anticipated approval of the first over-the-counter hormonal birth control pill followed the advice of its outside advisory committee. The pill, Opill, will be available on shelves without age restrictions.
• The Biden administration announced moves to limit so-called junk plans on insurance marketplaces. The Trump administration had dropped many restrictions on the plans, which were originally intended to be used for short-term coverage gaps.
• As the nation continues to settle into a post-Dobbs patchwork of abortion laws, the Iowa Legislature approved a six-week ban on the procedure. And an Idaho law offers a key test of cross-border policing of abortion seekers, as other states watch how it unfolds.
• In other news, Georgia’s Medicaid work requirements took effect July 1, implementing new restrictions on who is eligible for the state-federal program for people with low incomes or disabilities. And the Supreme Court’s decision on affirmative action has the potential to shape the health care workforce, which research shows could have implications for the quality of patient care and health outcomes.

Also this week, Rovner interviews KFF Health News’ Bram Sable-Smith, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a patient who lacked a permanent mailing address and never got the hospital bills from an emergency surgery — but did receive a summons after she was sued for the debt. If you have an outrageous or exorbitant medical bill you want to share with us, you can do that here.

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

Julie Rovner: KFF Health News’ “Doctor Lands in the Doghouse After Giving Covid Vaccine Waivers Too Freely,” by Brett Kelman.  

Rachel Cohrs: ProPublica’s “How Often Do Health Insurers Say No to Patients? No One Knows,” by Robin Fields, and Stat’s “How UnitedHealth’s Acquisition of a Popular Medicare Advantage Algorithm Sparked Internal Dissent Over Denied Care,” by Casey Ross and Bob Herman.  

Amy Goldstein: The New York Times’ “Medicare Advantage Plans Offer Few Psychiatrists,” by Reed Abelson.  

Alice Miranda Ollstein: The Wall Street Journal’s “America Is Wrapped in Miles of Toxic Lead Cables,” by Susan Pulliam, Shalini Ramachandran, John West, Coulter Jones, and Thomas Gryta.  

Also mentioned in this week’s episode:

• Stat’s “How One Medical School Became Remarkably Diverse — Without Considering Race in Admissions,” by Usha Lee McFarling.
• The New York Times’ “With End of Affirmative Action, a Push for a New Tool: Adversity Scores, by Stephanie Saul.

click to open the transcript

Transcript: The Long Road to Reining In Short-Term Plans 

KFF Health News’ ‘What the Health?’Episode Title: The Long Road to Reining In Short-Term PlansEpisode Number: 305Published: July 13, 2023

[Editor’s note: This transcript, generated using transcription software, 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, July 13, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: And Amy Goldstein of The Washington Post.

Goldstein: Good to be with you.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Bram Sable-Smith, who wrote the latest KFF Health News-NPR “Bill of the Month.” The hospital that provided care to this month’s patient couldn’t find her to send her a bill, but the debt collectors sure could. But first, this week’s news. Actually, it’s more like the last month’s news because we actually haven’t talked about news in a while. So we’re going to try to hit a bunch of items in sort of a lightning round. Let’s start with something we knew was coming. We just didn’t know exactly when. Last week, the Biden administration finally cracked down on short-term health plans. Those are the ones that are not subject to the strict rules of the Affordable Care Act. Amy, you wrote about this. What are short-term plans, and why have they been so controversial?

Goldstein: Well, short-term plans — they’re called short-term limited-duration plans, and really terrible argot, but that’s their name. They’ve been around as an alternative to plans that are meeting the rules of the Affordable Care Act. They were originally designed for people to use as small bridges between, say, when they lost a job and they were about to get a new job and they needed something in the interim to provide health coverage. Republicans, during the time that they were trying very hard several years ago to get rid of as much as the Affordable Care Act as they could — they didn’t succeed at a lot of that, but they did succeed during the Trump administration at lengthening the time that people could have these plans. So they extended them from what had been a three-month maximum during the latter part of the [Barack] Obama administration to 12 months, and then they were renewable for up to three years. And Democrats began calling these “junk plans,” saying that people didn’t exactly know what they were buying, that the premiums were low but the benefits were small and if people got sick and really needed a lot of care they could be stuck paying for a lot of it on their own.

Rovner: And these were the very plans that the ACA was kind of designed to get rid of, right, where people would say, I have this great health plan, it only costs me $50 a month — but by the way, it only provides $500 worth of care.

Goldstein: Well, there’s that. And the other thing that the ACA was designed to do is treat people with preexisting conditions equally. And these plans do not have to do that. Some do, but they’re not required to. So President [Joe] Biden, since he was candidate Biden running for the 2020 election, has been saying for quite a while that he was going to knock down the duration of these plans, and some of his fellow Democrats have been leaning on him: “Why haven’t you done it yet?” And last week, he finally did. He didn’t bring it exactly to where the Obama administration had it, but he brought them down to three months with a one-month extension, so a total of four months.

Rovner: And I guess the resistance here is that they’re still kind of popular, right, for people who think they would rather pay very low premiums for very few benefits?

Goldstein: Well, the catch is that we don’t really know how popular they are because there aren’t very reliable data on how many people have these. But the presumption is that some people like them.

Rovner: All right, well we will see what happens with this time they’re trying to crack down. Let us move on to abortion and reproductive rights. We will start with the breaking news. The Food and Drug Administration just this morning approved Opill, which is the first over-the-counter birth control pill. Alice, we’ve known this was coming, right?

Ollstein: Yes, we did. We thought it would be a little later in the summer. But the decision itself reflects what the FDA’s outside advisory panel strongly recommended, which is to make these pills available over the counter without a prescription and without an age restriction, which was one looming question over this process.

Rovner: Yeah, I guess, Rachel, I mean, the issue here has been can women be trusted enough to know when they shouldn’t take birth control pills because they are contraindicated for some people?

Rachel Cohrs: Right. And I think that certainly it’s important to read through the information. There’s a question as to whether women will do that. And one part of the release that stood out to me is that the specific type of pill that this is requires women to take it around the same time every day, which is not necessarily the case for all birth control pills. And I think there’s a little bit more flexibility than there used to be with this kind of pill. But it is just important that all of this communication happens. And if there’s not a doctor or pharmacist in the middle, I think it will be kind of interesting to see how this plays out in the real world.

Rovner: Well, while this could definitely help people prevent pregnancy who don’t want to get pregnant, there’s certainly a lot of action still in the states around abortion. We’re going to start in Iowa, which since the last time we spoke has done basically a 360 on abortion. Last month, the state Supreme Court deadlocked on whether to reinstate a 2018 ban on almost all abortions. That left a lower court order blocking the ban intact, so abortion remained legal in Iowa. But anti-abortion Gov. Kim Reynolds refused to take no for an answer. She called a special session of the state legislature, which on Tuesday essentially repassed the 2018 ban. It’s supposed to take effect as soon as the governor signs it, which could be as soon as Friday. But first it goes back to court, right, Alice?

Ollstein: Right. As with all of these things, there’s just a lot of back-and-forth before it’s final. Groups have already filed a lawsuit. And, you know, because the courts’ sort of mixed treatment of the previous version of this, we sort of don’t know what’s going to happen. But the law could go into effect and then be blocked by courts later or it could be blocked before it goes into effect. There’s a lot of different ways this could go, but this is one of several states where new restrictions are coming online. We’re more than a year out from the Dobbs decision now, and things are not settled at all. Things are still flipping back and forth in different states.

Rovner: Yeah, there’s a lot of states where old restrictions came into effect and then were blocked and now they’re putting new restrictions and they might be blocked. Well, turning to another “I” state, this time Idaho, where the legislature this spring passed a first-in-the-nation bill attempting to criminalize the act of helping a minor cross state lines for an abortion, even if the abortion is legal in the state the minor travels to. Now, abortion rights supporters have filed a first-in-the-nation lawsuit to block the first-in-the-nation law. This could have really big ramifications. This is different from a lot of what’s going on in a lot of the other states, right?

Ollstein: Yeah. Over the last year, there’s been a lot of fear on the left of states reaching across their borders to try to police abortion. And it hasn’t really happened yet that we have seen. And so this, I think, is a key test of whether more states will attempt to go in this direction. You know, a lot of blue states passed sort of shield laws for patients, for providers, for data, out of fear that more red states would attempt more cross-border policing. But that really hasn’t materialized broadly yet.

Rovner: I remember Missouri was the one that was talking about it, right, to make it a crime if —

Ollstein: Right.

Rovner: I know they didn’t do it, but they were talking about if women went particularly to Illinois, which is now one of these abortion havens, and came back, they would try to prosecute them, although that never really came to be.

Ollstein: Exactly. And so it’s interesting that even really conservative states with big Republican majorities, most have not gone down this road yet. And so I imagine a lot of them are watching how this case goes.

Rovner: Well, as long as we’re talking about states that start with “I,” let’s turn to Indiana, where Planned Parenthood reports that all of their appointments for abortions are taken between now and when that state’s near-total ban takes effect in a few weeks. This points out something I think often gets missed in these sort of score card maps of states that have bans and restrictions, which is there’s a lot of states where abortion is technically still legal but realistically not available, right?

Ollstein: The difference between being technically legal and available is nothing new. This was true prior to Dobbs as well. There were lots of states that only had one abortion clinic for the entire state. There were, like, six of those. And so, you know, you may have the right to have the procedure on paper, but if there’s only one place you could go and you’re not able to physically get there or they don’t have an appointment within the time window you need, you’re out of luck; that right isn’t, you know, meaningful for you. And so that’s becoming, you know, more true as abortion access is eliminated in a lot of the country and more and more people are depending on fewer and fewer states.

Rovner: And fewer and fewer clinics in fewer and fewer states. Well, finally, an update on the one-man nomination blockade by Alabama Republican Sen. Tommy Tuberville, who we talked about in March. He has stopped approval of basically all Defense Department personnel moves, including routine promotions, in protest of the Biden administration’s policy of providing leave and travel expenses for servicewomen to get abortions if they’re stationed in states where it’s illegal. Now, for the first time in more than 150 years, the Marine Corps has no approved commandant. Any idea which side’s going to back down here? Rachel, this is backing up the entire legislative calendar in the Senate, right?

Cohrs: It is. And I think some of the coverage this week has highlighted just how there hasn’t really been a willingness among Republican leadership to really put the pressure on Tuberville. But honestly, I don’t know when this stops for him. Having temporary leadership in all these positions isn’t kind of the impetus for him to say that he’s made his point. And I think there are also questions about — there may be more education required about exactly what the difference is between a temporary leader and a permanently installed leader. Obviously, the decisions that they’re making every day are life-and-death and are different than the leadership positions we see over at something like the NIH [National Institutes of Health], where, you know, I think it is —

Rovner: Which is also held up. But that’s another story.

Cohrs: Right, another story. But I just don’t see where this ends quite yet, unless there’s some will from Republican leadership to really bring him in line. And they just haven’t summoned that yet.

Rovner: I imagine there’ll be a vote on this when they get to the defense bill, right, which —the defense authorization, which is going to come up, I think, in both houses in the coming weeks. I mean, one would think that if there’s a vote and he loses, he might back down. I’m just guessing here. I guess we’ll have to wait and see what happens with that. All right. Well, it’s also been a busy couple of weeks in other social policy. On the one hand, a new federal law took effect that makes it easier for people to get accommodations to be able to do their jobs while pregnant. And Maine is going to start offering paid family and parental leave, although not until 2026. That makes it the 13th state to enact such a policy. On the other hand, Georgia is the first state to implement work requirements for Medicaid. Amy, the last time we discussed this, federal judges had tossed out Medicaid work requirements and Republicans in Congress were unsuccessful in getting those requirements back into the debt ceiling compromise. So how come Georgia gets to do this?

Goldstein: Well, I’ve begun to think of Medicaid work requirements as whack-a-mole, if you remember the arcade game in which you knock down an animal with a mallet only to have it pop up unexpectedly somewhere else. So, as you say, work requirements was something that Republicans were very eager to institute in 2017, 2018, when the Trump administration’s Center for Medicare & Medicaid Services encouraged states to adopt them. And there were basically plans to give people Medicaid at the time, mainly people in Medicaid expansion groups, if they worked or went to school or did community service for at least 80 hours a month. As you say, that was knocked down both by a district court and then a federal circuit court. And it looked like that was that, particularly when the Biden administration came along and undid the Trump administration’s regulation that had allowed states to submit proposals, the waivers for these kinds of plans. Well, lo and behold, Georgia said they wanted to do this. They said they wanted to do it in a little bit different way, because, for the first time ever, Georgia was going to be a partial expansion state for Medicaid, allowing people to get onto Medicaid if they had incomes up to the poverty level but not up to the full expansion poverty level that the ACA allows. And the Biden administration didn’t like that so much. And that partial expansion was to be twinned with work requirements. The Biden administration didn’t —

Rovner: For that expansion group, though, right? Not for everybody.

Goldstein: Just for that partial expansion group. The Biden administration didn’t like that so much. But last summer, a judge in Georgia said, no, she thinks this is OK. And the reason was that, unlike the other states, if this was pegged to a partial expansion, any expansion with work requirements would increase the number of people with Medicaid. So that was sort of in her judge judgment — I shouldn’t say the judge’s judgment — consistent with the purposes of the program. So Georgia has gone ahead, and the beginning of this month they allowed people to start enrolling in something called Georgia Pathways to Coverage. And we’ll have to see how it goes.

Rovner: Yeah. And just to be clear, I mean, Alice, you did some stellar work back a couple of years ago about Arkansas, about people losing coverage because of the work requirements, even if they were working, just because of how hard it was to report the work hours, right?

Ollstein: Absolutely. I mean, it’s kind of what we’re seeing now with the Medicaid unwinding, is that, you know, people just aren’t able to know what’s going on, aren’t able to be reached, fall through the cracks, can’t navigate the bureaucracy, and lose coverage that they should be entitled to. So we saw that happen, and I think to Amy’s point, the administration seems to be taking a very different stance on states like Arkansas, you know, which already had expanded Medicaid and then went to impose a work requirement, whereas Georgia didn’t have it before and this is kind of a compromise because it’s like, well, more people will be insured if we allow this to go forward total, you know, so maybe it’s better than nothing, although a lot of folks on the left are very opposed to the concept of work requirements, citing data that the people who are on Medicaid who can work are already working — the vast, vast, vast majority. And those who are not working, either they are caring for a child or someone with disability, or they themselves have a disability, or they’re a student. You know, there’s all these categories of why folks are unable to work.

Rovner: But in this expansion group, one would assume that if they’re earning up to the federal poverty line, they have some source of income. So one would assume that many of them are working. But I think it’ll be really interesting for researchers to watch to see, you know, a sort of a proof of concept in either direction with this.

Goldstein: And let me quickly mention a couple of things. Georgia’s rules are actually in some ways the same as what other states had tried to do previously. But in other ways, this is the strictest set of work requirements that anyone has tried in a couple of ways: People have to meet these work requirements up to age 64, which is older than other states had done for the most part. There’s also no exemption if you’re taking care of a child or taking care of an older family member. So how well people, in addition to the bureaucratic hoops that Alice was talking about, which are of grave concern to some of the people who oppose this in Georgia — there’s also a question of who’s going to actually be able to qualify for this.

Rovner: While we are on the subject of court decisions, one of the odd court decisions that I think has happened over the past few weeks is a federal district court decision out of Louisiana barring many officials in the Biden administration, including the surgeon general and the head of the CDC [Centers for Disease Control and Prevention], from talking to social media sites, particularly about things like medical misinformation. This feels like something I had not seen before in terms of actually trying to ban the administration from talking to private companies based on First Amendment concerns, which is what this is.

Cohrs: Right. Well, I mean, the First Amendment protects speech from interference from the government —

Rovner: Right

Cohrs: — which has always been, you know, this gray area with these independent platforms. And I think this issue, you know, has obviously become highly politicized. It came up several times when Rochelle Walensky, the former CDC director, was testifying on the Hill. So I think certainly we’ve seen this trend overall in these highly political court decisions and this strategy that certain litigants are taking where they’re trying to find defendants in a certain jurisdiction that’s going to be advantageous to them. So it will certainly be interesting to see how this plays out in the future and makes its way through the court system, but certainly is an eye-popping precedent. Like you mentioned, we don’t usually see something like this.

Rovner: And I wanted to mention, I think also because this is yet another of these judges that the right has found that are likely to agree with them. Like we’ve seen now: The judges in Texas, we now have one in Louisiana. Sort of kind of watch that docket. While we are still on the subject of courts, 2023 was the first year in the last decade or so that there was not a major health-related decision in the last big cases decided by the Supreme Court. But it seems like one of those non-health cases, the one essentially striking down affirmative action, might have some major implications for health care after all, particularly for medical education, right?

Cohrs: Yes. Some of my colleagues did some I think great follow-up reporting on this. And I think the idea is that there has been research that has shown that when patients are able to see a doctor of their same racial background, that it does have positive implications for their care. And there has also been studies of schools where there have been bans on race-conscious admissions showing that there is a decrease in medical school students from underrepresented backgrounds traditionally. And so I think that cause and effect is concerning for people, that if there are fewer medical students — there already aren’t a representative amount — from underrepresented groups, that could trickle down to, again, just exacerbating so many of these inequities that we see in health care provision. I know there was just a big study on the maternal mortality outcomes that came out recently as well. And I think all of these things are tied together. And I think Axios reported on one interesting potential loophole, was using proxy measures, like where someone went to school or their parents’ background, something like that, to try to ensure diversity from that lens. But I think it certainly is going to make these medical schools recalculate how they’re doing admissions and make some hard choices about how to maintain diversity that can be beneficial for patients.

Rovner: One thing that I think has come up in all of these discussions is the fact that the University of California-Davis has done an interesting job of creating a very diverse medical school class, even though race-conscious admissions have been banned in California for years. So I think a lot of schools are going to be looking sort of to see what UC Davis has done and perhaps emulate that. And I will put one of the UC Davis stories in the show notes for everybody. All right. Finally in this week’s news, the drug industry has filed a lawsuit challenging the Medicare drug price negotiation program that’s just now starting to get off the ground. Rachel, you wrote about this. How does pharma think it can block price-setting for Medicare that Medicare does for pretty much everything else that Medicare pays for? They set prices for hospitals and doctors and medical equipment. Why are drugmakers thinking that they’re special?

Cohrs: Right. So, again, this is four lawsuits as well, not just one: two from two trade groups and two drugmakers. And they’re each kind of using different arguments. But I think the big picture here is if the government called it price-setting, I don’t think pharma would have as much of an argument, but they’re calling it a negotiation. And I think one of the drugmakers’ key claims is that by signing these contracts to enter into this process, they’re tacitly admitting that this price that they come up with in this process is, quote-unquote, “fair.” And, you know, they don’t want to agree to that because then it makes the price that they’re charging everyone else look unfair on the other side of the coin. And I think there’s also these really high penalties for these companies who decide not to participate; I mean, tens of millions of dollars on the first day is the kind of number that we’re seeing for some of these companies that have filed lawsuits. And I think there’s also the option for them to take all of their drugs off of the market. But I think there’s a question with the timeline of whether they could have even done that before the law was passed. So the big picture from the drugmaker side of things is that the penalties are so high for them not to participate and that the government is framing this as a negotiation when it really is just price-setting, like Medicare does in so many other areas. So I think one interesting development that happened this week was that the [U.S.] Chamber of Commerce filed a motion for a preliminary injunction, which could make all of these lawsuits move much faster and really put a stop to the program. We hadn’t seen either of these lawsuits request a motion like that. And I think they requested a ruling by Oct. 1, which is when the first kind of round of 10 drugmakers would have had to sign their contracts with Medicare. So I think this certainly is picking up speed and urgency as we’re moving toward that Sept. 1 selection date.

Rovner: I didn’t even notice. Are these lawsuits all filed here in Washington, D.C., or —

Cohrs: No, they are not. As we’ve seen, the drugmakers are very strategic in where they filed. I think Merck did file in D.C., but the chamber filed in Ohio; it had some of their local chapters join in as well. I think we saw another company file in New Jersey. So I think they are kind of hedging their bets and trying to get rulings from as many different jurisdictions as they can.

Rovner: Find a judge who’s willing to slap an injunction on this whole thing.

Cohrs: Yes.

Rovner: Which we will talk about when and if it happens. All right. That is this week’s news, or at least as much as we have time to get to. Now, we will play my “Bill of the Month” interview with Bram Sable-Smith, and then we will be back with our extra credits. We are pleased to welcome back to the podcast Bram Sable-Smith, who reported and wrote the latest KFF Health News-NPR “Bill of the Month.” Bram, so nice to see you again.

Bram Sable-Smith: Always a pleasure to be here.

Rovner: So, this month’s patient was, like a lot of young people, an uninsured 23-year-old when she ended up in the emergency room. Tell us who she is and what kind of medical care she needed and got.

Sable-Smith: Yeah, that’s right. Her name was Bethany Birch. And, in addition to being uninsured, she was also unemployed at the time, and she had had pain in her diaphragm for eight months. It prevented her from eating. She lost about 25 pounds in that time. And when she went to the emergency room, she found out she needed her gallbladder removed.

Rovner: And got it, right?

Sable-Smith: And got it. Yeah, she got that surgery almost immediately. Because she hadn’t been eating food — her food resistance — it meant she could get in for surgery right away.

Rovner: And that cured her? Yes?

Sable-Smith: It did cure her. Yes, she felt a lot better.

Rovner: So now we’re talking about the bill. The hospital tried to send her the bill, but apparently it couldn’t find her. Is this a common thing, and why couldn’t they find her? One presumes she gave them an address when she presented at the emergency room.

Sable-Smith: She did give them an address, but by the time she was discharged, she had lost her housing. Her home situation was unstable. So just that brief visit to the hospital, by the time she left, she had no more house to live in. And she did end up crashing with her family for several months. And, eventually, she did update her address with the post office. But by the time she had done that, it was after the hospital had sent the three bills to her for her visit.

Rovner: So the hospital doesn’t get any response, and they do what we know hospitals do. They sued for nonpayment. And the debt collection firm did manage to find her. So then what happened?

Sable-Smith: Well, she went to court, and like so many people who end up in court with medical debt, she did not have a lawyer representing her. She met with a representative from the debt collection firm, and she worked out a payment plan to pay her bill, plus court costs, in $100 monthly installments. But at the time, Tennessee had a default interest rate on judgments like the one that Bethany had of 7%. So the judge tacked on a 7% interest rate to her bill.

Rovner: So, yeah, and that was presumably a lot for her to carry. What finally happened with the bill?

Sable-Smith: Well, she paid her $100 monthly payments for over four years. It totaled about $5,200 she paid in that time. But at the same time, the interest rate was accruing. And so she owed an additional $2,700 on top of the initial bill that she had gotten. From her perspective, it was just impossible. She wasn’t digging out of this debt. So she started getting help from a family friend, who’s a billing expert, who took on her case. They asked the hospital and the debt collection firm to settle her debt because she had already paid so much. But they were unsuccessful in doing so. They sent their bill to us. We started reporting the story. Then they asked again to settle her debt by paying an additional $100 on top of what she had already paid. And this time they agreed. And so she settled her debt and she got a balance-zero statement.

Rovner: Amazing how just one phone call from us can do some work. Now, as somebody who is unemployed and, as you pointed out, uninsured at the time she got the care, Bethany should have been eligible for the hospital’s financial assistance policy. Why didn’t she get help before the debt ballooned with court costs and all that interest?

Sable-Smith: Well, the simple answer is that she never applied. But, as we know, it’s much more complicated than that. So given her status as single, uninsured, unemployed, it’s very possible that she would have qualified for financial help, maybe even for free care altogether. But the onus was on her as a patient to apply. And we know her situation was unstable. You know, she went through a period of homelessness. She didn’t have a lot of expendable money at the time. It’s a long process to apply for these programs. There’s a lot of forms. It can be cumbersome. And that prevents a lot of people from applying to these programs. So advocates push for something called presumptive eligibility, where the hospital takes the onus of applying away from patients and they automatically put them through the process. And this hospital that Bethany went to, they actually have switched to that presumptive eligibility model, just not in time to help her case.

Rovner: So what’s the takeaway here? I guess everybody has to be a proactive patient, not just with your medical care, but especially with your bills. What happens to a patient who finds themselves in a similar situation?

Sable-Smith: Well, you know, from a consumer standpoint like that, one takeaway is to ask for financial help. A lot more people qualify than you might think. You might not think you qualify, but it’s very possible you could. And then from a policy perspective, hospitals switching to presumptive eligibility — that’s something that they’re able to do. And also, some states have pushed to ban or even limit interest payments on this kind of medical debt. So that’s something that other people are considering as well.

Rovner: Or you can write to us, and we will show you how in our show notes.

Sable-Smith: That’s always a possibility, too.

Rovner: Bram Sable-Smith, thank you so much.

Sable-Smith: Yeah, thanks for having me.

Rovner: OK, we’re 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. Rachel, why don’t you go first?

Cohrs: OK, I’m cheating a little bit and I’m doing a double feature. So the first story for my extra credit is headlined “How Often Do Health Insurers Say No to Patients? No One Knows.” It’s in ProPublica by Robin Fields, and I think it’s just a great feature on the idea that Obamacare entitled the government and patients to more information about how often insurers deny care to patients. And the government hasn’t really pursued that information. And even, like, state health insurance commissions aren’t providing the information they’re collecting. And Robin just had such a difficult time getting any sort of information from anyone, even though we’re legally entitled to it. So I thought that was just kind of a great highlight of this next area of criticism of the health insurance industry, which, and I think that —

Rovner: I would say, all this focus on premiums and not as much focus on what you actually get for those premiums.

Cohrs: Exactly. So true. I think there’ve been some high-profile examples, great reporting. And I thought that meshed well with some reporting from my colleagues Casey Ross and Bob Herman, who wrote a follow-up to some of their prior reporting titled “How UnitedHealth’s Acquisition of a Popular Medicare Advantage Algorithm Sparked Internal Dissent Over Denied Care.” Again, looking at how algorithms in this one privatized Medicare program, which is growing in size and enrollment across the country, was actually overruling clinicians’ decisions about how long patients should be receiving care in facilities. And if the algorithm says they should be done, then they’re done. And I think it definitely sparked some concerns from people in the company who were willing to speak to them just because they were so concerned about this trend.

Rovner: Alice.

Ollstein: I have a very impressive investigation from The Wall Street Journal. There are five bylines, and we will post the link. This is about lead-covered telecom cables owned by AT&T, Verizon, other companies that have been left to decay and leach into the environment all around the country. This documents how the companies knew about them but have not moved to clean them up and get rid of them. They are impacting water sources. They are near playgrounds where children are, and it goes into the very disturbing health impacts of lead exposure. This is something the country has made a lot of progress on when it comes to paint and other sources, but obviously we still have a long way to go.

Rovner: Yeah, because there’s not enough things to be worried about environmentally, here is something else. It is very good reporting.

Rovner: Amy.

Goldstein: My extra credit this week is from The New York Times, by Reed Abelson, with the headline “Medicare Advantage Plans Offer Few Psychiatrists.” And this isn’t a giant story, but I think it is at the nexus of two very important questions: one, the long-standing question of whether privatized Medicare is better or worse for people who are older Americans on Medicare than the traditional version of Medicare; and the question of are people getting enough access to mental health care? And I guess what struck me is that there’s been so much attention lately to the question of access to mental health services for younger Americans, and this looked at the question of access to mental health services for older Americans. And what this story, based on a study, talks about is that the study found that more than half of the counties, the researchers who did this study found, is that those counties did not have a single psychiatrist participating in Medicare Advantage and that a lot of these plans have what’s called “narrow” or “skinny” networks, where a very small fraction of the available psychiatrists in a community were in that plan’s network. Now, [there are] people who are criticizing that study saying, well, you can’t look at just psychiatrists; there are other people who provide competent mental health care. But I think it just raises the question of who is getting what they need.

Rovner: Indeed. Well, my story this week is also about just plain good reporting. It’s called “Doctor Lands in the Doghouse After Giving Covid Vaccine Waivers Too Freely.” It’s by Brett Kelman of KFF Health News. But it’s about some old-fashioned reporting by another outlet, Nashville’s NewsChannel 5. It seemed that during the height of the covid vaccine rollout, when lots of places were requiring proof of vaccines and lots of people didn’t want to get them, the doctor in question, named Robert Coble, was providing waivers through a website without much —OK, any — oversight. How did they prove it? By obtaining a waiver for a reporter’s black Labrador retriever, Charlie. Earlier this spring, Coble quietly surrendered his medical license to the state Department of Health. Journalism works. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks, as always, to our producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still tweet me. I’m @jrovner. I’m on Threads too, @julie.rovner.

Rovner: Amy.

Goldstein: I’m @goldsteinamy.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on Twitter and @rachelcohrsreporter on Threads.

Rovner: Alice.

Ollstein: @AliceOllstein.

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, Stitcher, 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).

Son parte de una nueva migración de estadounidenses que se están desarraigando debido a una oleada de leyes que restringen la prestación de servicios de salud para personas transgénero.

Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.

Más de una cuarta parte de los adultos trans encuestados por KFF y The Washington Post a fines del año pasado dijeron que se mudaron a otro vecindario, ciudad o estado en busca de un ambiente más tolerante. Ahora se sienten impulsados por las nuevas restricciones en la atención de la salud y la posibilidad de que estas se sigan multiplicando.

Muchos de ellos optan por estados que están aprobando leyes para proteger y apoyar estos servicios, lugares que se han convertido en santuarios. En California, por ejemplo, se aprobó una ley el otoño pasado que protege de demandas a las personas que reciben o brindan servicios de afirmación de género. Y ahora, los proveedores en California están recibiendo cada vez más llamadas de personas que quieren mudarse al estado para evitar interrupciones en sus servicios, dijo Scott Nass, médico local de familia y experto en atención de personas transgénero.

Pero esta afluencia de pacientes presenta un desafío, dijo Nass, “ya que el sistema actual no puede recibir a todos los refugiados que pudiera haber”.

En Florida, la persecución legislativa de las personas trans y su atención médica convenció a Arlo Dennis, de 35 años, de que es hora de irse. Hace más de una década que vive con los cinco miembros de su familia en Orlando. Ahora, tienen planes de mudarse a Maryland.

Dennis ya no tiene acceso a su terapia de reemplazo hormonal. Esto se debe a que desde fines de agosto, el seguro de Medicaid de Florida ya no cubre la atención médica relacionada con la transición. El estado considera que estos tratamientos son experimentales y que su eficacia no está suficientemente probada. Dennis dijo que su medicación se acabó en enero.

“Sin duda esto me ha causado problemas de salud mental y física”, explicó Dennis.

Agregó que mudarse a Maryland requiere recursos que su familia no tiene. Lanzaron una campaña de GoFundMe en abril y ya recaudaron más de $5,600, la mayoría donada por desconocidos, contó Dennis. Ahora la familia de tres adultos y dos niños piensa irse de Florida en julio. La decisión no fue fácil, pero sintieron que no había otra opción.

“No me importa si a mi vecino no le gusta mi forma de vivir”, dijo Dennis. “Pero esto era una prohibición literal de mi ser y me impedía el acceso a la atención médica”.

Mitch y Tiffany Tillison decidieron irse de Texas después de que los republicanos del estado enfocaron su agenda legislativa en las políticas anti-trans para los jóvenes. Su hija de 12 años se declaró trans hace unos dos años. Los padres pidieron que se publicara solo su segundo nombre, Rebecca: temen por su seguridad debido a las amenazas de violencia contra las personas trans.

Este año, la Legislatura de Texas aprobó una ley que limita la atención médica de afirmación de género para jóvenes menores de 18 años. La ley prohíbe específicamento aquellos servicios de salud física. Sin embargo, defensores de los derechos LGBTQ+ en el estado dicen que las medidas recientes también han tenido un escalofriante efecto sobre la prestación de servicios de salud mental para personas trans.

Los Tillison se negaron a precisar si su hija está recibiendo tratamiento y cuál. Pero afirmaron que reservan el derecho, como padres, de poder brindarle a su hija la atención que necesita, y que el estado de Texas les ha quitado ese derecho.

A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del tiroteo masivo del 6 de mayo por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington. 

“La he mantenido a salvo”, dijo Tiffany Tillison, agregando que suele recordar el momento en que su hija le dijo que era trans durante un largo viaje a casa después de un torneo de fútbol. “Es mi responsabilidad seguir protegiéndola. Mi amor es interminable, incondicional”.

Por su parte, Rebecca tiene una actitud pragmática sobre la mudanza, que está planeada para julio. “Es triste pero tenemos que hacerlo”, dijo.

En Missouri, donde casi se aprueba una medida que limitaba la atención de la salud trans, algunas personas empezaron a repensar si deberían vivir ahí.

En abril, el fiscal general de Missouri, Andrew Bailey, presentó una norma de emergencia para limitar el acceso a la cirugía relacionada con la transición y el tratamiento hormonal cruzado para personas de todas las edades, además de restringir los bloqueadores de la pubertad, medicamentos que detienen la pubertad pero no alteran las características de género.

Al día siguiente, Dempsey, de 24 años, lanzó una campaña de GoFundMe para recaudar fondos para irse con sus parejas de Springfield, Missouri.

“Somos tres personas trans que dependen de la terapia de reemplazo hormonal y de la atención de afirmación de género que pronto será casi prohibida”, escribió Dempsey en su campaña de GoFundMe, agregando que querían “escapar de Missouri cuando se termine nuestro contrato de alquiler a fines de mayo.”

Dempsey dijo que su médico en Springfield les recetó un suministro de tres meses de terapia hormonal para cubrirlos hasta la mudanza.

Bailey retiró la norma en mayo, cuando la legislatura estatal restringió el acceso a estos tratamientos para menores pero no para adultos como Dempsey y sus parejas. Aún así, Dempsey dijo que no tenía muchas esperanzas para su futuro en Missouri.

El estado vecino de Illinois era una opción obvia para mudarse; la legislatura allí aprobó una ley en enero que exige que los seguros médicos regulados por el estado cubran la atención médica de afirmación de género sin ningún costo adicional. Dónde en Illinois exactamente era una pregunta más importante. Chicago y sus suburbios parecían demasiado caros. Sus parejas querían una comunidad progresista similar en tamaño y costo de vida a la ciudad que estaban dejando. Buscaban “un Springfield”, en Illinois.

“Pero no Springfield, Illinois”, bromeó Dempsey.

Gwendolyn Schwarz, de 23 años, también esperaba quedarse en Springfield, Missouri, su ciudad natal, donde recientemente se graduó de Missouri State University con un título en estudios de cine y medios de comunicación. Pensaba seguir su carrera académica en un programa de posgrado de la universidad y, en el siguiente año, someterse a una cirugía de transición, que puede requerir varios meses de recuperación.Pero sus planes cambiaron cuando la norma propuesta por Bailey generó miedo y confusión.“No quiero quedarme atrapada y temporalmente discapacitada en un estado que no reconoce mi humanidad”, dijo Schwarz.

Ella y un grupo de amigos tienen planeado mudarse al oeste, al estado de Nevada, cuyos legisladores aprobaron una medida que requiere que Medicaid cubra el tratamiento de afirmación de género para pacientes trans.

Schwarz espera que mudarse de Missouri a Carson City, la capital de Nevada, le permita seguir viviendo su vida sin miedo y eventualmente someterse a la cirugía que desea.

Dempsey y sus parejas finalmente decidieron mudarse a Moline, Illinois. Los tres tuvieron que renunciar a sus trabajos, pero han recaudado $3,000 en GoFundMe, más que suficiente para cubrir el depósito de un nuevo departamento.

El 31 de mayo, empacaron las pertenencias que no habían vendido e hicieron el viaje de 400 millas hasta su nuevo hogar.

Dempsey ya tuvo una cita con un proveedor médico en una clínica en Moline que atiende a la comunidad LGBTQ+, y consiguió que le recetaran los medicamentos que necesita para su terapia hormonal.

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).

Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”

They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.

Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.

More than a quarter of trans adults surveyed by KFF and The Washington Post late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.

Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to protect those receiving or providing gender-affirming care from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.

But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”

In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.

Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.

“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.

Moving to Maryland will take resources Dennis said their family does not have. They launched a GoFundMe campaign in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.

“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”

Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.

This year, the Texas Legislature passed a law limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.

While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the May 6 mass shooting by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.

“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”

For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.

A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey issued an emergency rule seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri.

“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”

Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.

Bailey withdrew his rule after the state legislature in May restricted new access to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.

Neighboring Illinois was an obvious place to move; the legislature there passed a law in January that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.

“But not Springfield, Illinois,” Dempsey quipped.

Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.

But her plans changed as Bailey’s rule stirred fear and confusion.

“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.

She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that requires Medicaid to cover gender-affirming treatment for trans patients.

Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.

Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.

On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.

Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.

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).