Hospitals have spent years amassing political influence at the federal and state levels. According to the nonprofit OpenSecrets, hospitals and nursing homes’ federal lobbying spending rose from $35 million in 2000 to more than $133 million last year, a 280% increase. 

They recently had a unique opportunity to flex some of that political muscle in Montana, where the state’s Medicaid expansion program was scheduled to expire in June unless legislators and the governor renewed it. 

Conservative lawmakers and groups saw an opportunity to terminate or narrow the Medicaid expansion program that cost about $1 billion in federal and state taxpayer money last year to cover tens of thousands of low-income adults. Ultimately, the conservative Republican lawmakers who occupy state House and Senate leadership positions sought to add requirements to the program or receive concessions from hospitals, such as a promise to bolster their community benefit spending, in return for continuing the program that provides them with revenue. 

What was expected to be one of the more contentious debates of the legislative session never happened. The Medicaid expansion renewal bill sailed through with little difficulty and few changes. 

The hospitals spent the last year working to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans. That work paid off when Democratic and moderate Republicans lawmakers joined forces to push the bill through. 

Hospital lobbyists, led by the Montana Hospital Association, not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on the hospitals themselves. 

The hospitals’ political pull is acknowledged by frustrated conservative lawmakers who contend that the facilities, most of which are nonprofit organizations largely exempt from state and federal taxes, need more oversight and transparency. As Republican state Sen. Greg Hertz put it, “Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services.” 

Hospitals say they’re willing to debate ways to improve health care in Montana. But when it comes to regulations they regard as onerous — or lawmaker criticism that they are uncooperative — they aren’t shy about pushing back. “I think that we’ve demonstrated that we work on all kinds of health policies,” said Montana Hospital Association president and CEO Bob Olsen.

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For nearly three agonizing years, Mariah Freschi and her husband have been trying to have a second baby. The California mother recently underwent surgery to remove her blocked fallopian tubes, leaving in vitro fertilization as her only option to get pregnant. But the cost quoted by her Sacramento-area clinic was $25,000 — out of reach for Freschi, a preschool teacher, and her husband, a warehouse worker.

“When we first found out IVF was our only option, it just felt so overwhelming,” said Freschi, who has insurance through the California marketplace. “No one sets aside 20, 30 grand to grow your family.”

The Freschis are far from alone in requiring medical assistance to have children: About 13% of women and 11% of men in the U.S. experience infertility, while others are in a same-sex relationship, single, or want to preserve their eggs or sperm before undergoing various medical treatments.

And, like the Freschis, many Americans do not have health insurance that pays for IVF.

During his campaign, President Donald Trump vowed that the government would cover IVF or require insurers to cover it. In February, he signed an executive order seeking policy recommendations on expanding IVF access, dubbing himself the “fertilization president” a few weeks later.

Whether the administration’s efforts will change policy remains unknown, but state-level attempts to mandate fertility coverage reveal the gauntlet of budgetary and political hurdles that such initiatives face — obstacles that have led to millions of people being left out.

“There are economic opponents, and there are ideological opponents,” said Sean Tipton, a lobbyist for the American Society for Reproductive Medicine. “It is a tough lineup of opponents. And that’s very consistent from state to state.”

Twenty-two states have passed legislation requiring insurers to cover at least some fertility care, and 15 of those require coverage for IVF. The laws vary widely, though, when it comes to who and what gets covered, largely because of debates over cost. Fertility services can range from diagnostic testing and ovulation-enhancing drugs to IVF, widely considered the most effective but also the most expensive treatment, during which one or more lab-fertilized eggs are transferred to a uterus.

It’s mostly those footing the bill amid rising health care costs and state deficits that have voiced opposition. State insurance mandates “factor in significantly” when it comes to whether employers continue to provide coverage at all because of financial concerns, according to Chris Bond, a spokesperson for AHIP, which represents health insurers, who also said employers “want to have flexibility with how these benefits are structured.”

States cite concerns about higher premiums and the budget impact of having to cover government workers. In the past few years, infertility coverage bills in Minnesota, North Dakota, and Louisiana, for example, failed largely over cost.

IVF advocates, however, cite data from a decade ago showing that fertility care in states with mandates has accounted for less than 1% of total premium costs, a figure similar to estimates for newer mandates. And advocates often argue that building a family is a human right, though fertility care is disproportionately used by wealthy, white women. Covering IVF for the Medicaid population, which includes more than 70 million Americans, rarely works its way into legislative proposals.

The California Example

California is a case study in how many of these conversations play out. Cost concerns sank IVF legislation in the state for several years before lawmakers approved a mandate last year. SB 729 goes into effect July 1 and requires large employers with state-regulated health insurance to cover infertility diagnosis and treatment, including IVF. State employees will get coverage in 2027.

California’s mandate is considered one of the most comprehensive and inclusive in the country, said Barbara Collura, president of Resolve: The National Infertility Association, making same-sex couples and single parents eligible for coverage. But it still leaves out most of the state’s insured population, including those covered by Medicaid, the Affordable Care Act marketplace, and self-insured companies, which account for the majority of workers and are federally regulated.

Mimi Demissew, executive director of Our Family Coalition, an LGBTQ+ rights nonprofit that co-sponsored SB 729, said her group envisioned the broadest possible mandate, which would have included people covered by small employers, the marketplace, and other privately purchased plans. “We dreamed big,” she said. “But the pushback and the whittling down was because of the budget.”

Gov. Gavin Newsom’s finance department opposed SB 729 over concerns about the state’s budget and higher premiums. And groups representing the state’s health plans and employers cited costs in their opposition, with the California Chamber of Commerce calling health care “one of the most formidable expenses a business experiences,” per a legislative analysis.

The law going into effect this year is estimated to cover around 9 million people, 5 million fewer than originally proposed. Annual premiums, whose cost is typically shared by employers and employees, are projected to increase for people with state-regulated health insurance by approximately $40 per person covered in the first year.

Mandates Vary Widely by State

More than 10 states — including California — have what fertility experts call “comprehensive” coverage, which requires some insurers to cover IVF with minimal restrictions. But even in those states, large swaths of the population miss out.

In Massachusetts, which has one of the country’s oldest, broadest mandates for infertility coverage, including IVF, only about 30% of women were eligible as of 2019.

Those covered by these mandates, however, are grateful. Luisa Lopez, a nonprofit executive, credited the three IVF cycles that New York’s mandate covered with allowing her and her husband to have a baby after 10 years of trying.

“I feel very lucky to live in a state that prioritized this,” Lopez said. Still, she said, she was on the hook for thousands of dollars in copays and other costs.

In states with narrow mandates, coverage is elusive. With limited exceptions, only state employees have qualified for IVF coverage through Utah’s mandate, for example. Joseph Letourneau, a University of Utah fertility specialist who successfully lobbied for fertility preservation coverage for Medicaid patients and state employees with cancer, said he couldn’t recall ideological opposition to fertility coverage but that some legislators were concerned about raising costs.

Oklahoma and Kentucky limit coverage requirements to patients who wish to preserve their fertility because of specific medical conditions.

Pushback Beyond Costs

Some opponents of IVF coverage say life begins at the moment of conception and have expressed concerns about the disposal of embryos during the IVF process.

Chieko Noguchi, a spokesperson for the U.S. Conference of Catholic Bishops, said the Catholic Church teaches that IVF is morally wrong because it “involves the death or freezing of embryonic children and treats human beings like products that can be bought and ordered.”

In Republican-controlled-Georgia, some advocates say the proposal of abortion restrictions has distracted from efforts to mandate fertility coverage. SisterSong, a reproductive justice nonprofit, supports two bills that would require private insurers and Medicaid to cover IVF in Georgia. But, the organization’s director of maternal health and birth equity initiatives, Leah Jones, acknowledged a steep uphill battle given the costs and anti-abortion legislation that some advocates fear could criminalize IVF. Having to fight just for the legality of IVF, she said, detracts from expanding access.

“We’re always on the defense,” Jones said.

Several states, including Georgia, are weighing or have passed bills that would protect access to IVF after Alabama’s state Supreme Court ruled that embryos created through IVF should be considered children, leading to temporary suspension of those services. Zemmie Fleck, executive director of Georgia Right to Life, said the Georgia anti-abortion bill would not make IVF illegal.

This fissure in Trump’s base over protecting versus restricting or even prohibiting IVF has raised questions about how his executive order will play out. Letourneau of Utah said some of his patients have asked if the order will cover their treatment costs.

The White House did not respond to requests for comment.

An Uncertain Road Ahead

While a growing number of companies provide IVF coverage as a health benefit, most patients are left to find ways to pay on their own. Some have turned to loans — IVF financing startups such as Gaia and Future Family have raised millions in venture funding.

The Freschis have applied for grants, are crowdfunding, and have put their upcoming cycle on a credit card.

“It’s so scary,” said Freschi, describing worries about potential unexpected IVF costs. “It just feels like you’re constantly walking around with a weight on you.”

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

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

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When the Trump administration cut more than $11 billion in covid-era funds to states in late March, addiction recovery programs suffered swift losses.

An Indiana organization that employs people in recovery to help peers with substance use disorders and mental illness was forced to lay off three workers. A Texas digital support service for people with addiction and mental illness prepared to shutter its 24/7 call line within a week. A Minnesota program focused on addiction in the East African community curtailed its outreach to vulnerable people on the street.

Although the federal assistance was awarded during the covid-19 pandemic and some of the funds supported activities related to infectious disease, a sizable chunk went to programs on mental health and addiction. The latter are both chronic concerns in the U.S. that were exacerbated during the pandemic and continue to affect millions of Americans. Colorado, for example, received more than $30 million for such programs and Minnesota received nearly $28 million, according to health and human services agencies in those states.

In many cases, this money flowed to addiction recovery services, which go beyond traditional treatment to help people with substance use disorders rebuild their lives. These programs do things that insurers often don’t reimburse, such as driving people to medical appointments and court hearings, crafting résumés and training them for new jobs, finding them housing, and helping them build social connections unrelated to drugs.

A federal judge temporarily blocked the Trump administration’s cuts, allowing the programs to continue — for now — receiving federal funding. But many of the affected programs say they can’t easily rehire people they laid off or resurrect services they curtailed. And they’re unsure they can survive long-term amid an environment of uncertainty and fear, not knowing when the judge’s ruling might be lifted or another funding source cut.

The week it slashed the funding, the Trump administration also announced a massive reorganization of the Department of Health and Human Services, including the consolidation of the main federal agency focused on addiction recovery services. Without a stand-alone office like the Substance Abuse and Mental Health Services Administration, many advocates worry, recovery work — and the funding to support it — will no longer be a priority. Although private foundations and state governments may step in, it’s unlikely they could match the tranches of federal funding.

“Recovery support is treated as optional,” said Racquel Garcia, founder of HardBeauty, a Colorado-based addiction recovery organization.

The federal cuts put at risk a roughly $75,000 grant her team had received to care for pregnant women with substance use disorders in two rural counties in Colorado.

“It’s very easy to make sweeping decisions from the top in the name of money, when you don’t have to be the one to tell the mom, ‘We can’t show up today,’” Garcia said. “When you never have to sit in front of the mama who really needed us to be there.”

Mental health conditions, including substance use disorders, are a leading cause of maternal mortality in the U.S. And although national overdose deaths have decreased recently, rates have risen in many Black and Native American communities. Many people in the addiction field worry these funding rollbacks could reverse hard-earned progress.

U.S. Department of Health and Human Services spokesperson Emily Hilliard told KFF Health News that the department is reorganizing to improve efficiency, foster a more coordinated approach to addiction, and prioritize funding projects that align with the president’s Make America Healthy Again initiative.

“We aim to streamline resources and eliminate redundancies, ensuring that essential mental health and substance use disorder services are delivered more effectively,” she said in a statement.

But to Garcia, it doesn’t feel like streamlining. It feels like abandoning moms in need.

Between the time the cuts were announced and when the federal judge paused them, two women served by Garcia’s program gave birth, she said. Though her grant funding was in limbo, Garcia told her employee to show up at the bedside for both moms. The employee followed up with daily check-ins for the new moms, connected them to treatment or housing services when needed, and helped them navigate the child services system.

“I just can’t leave moms” without services, Garcia said. “I just can’t do it.”

Nor can she abandon that employee, she said. Although the federal funding provided half of that employee’s salary, Garcia has continued to keep her on full time.

Garcia said she primarily employs women in recovery, many of whom spent years trapped in abusive situations, relying on welfare benefits. Now they’re sober and have found meaningful work that allows them to provide for their families, she said. “We created our own workforce of mamas who help other mamas.”

This type of recovery workforce development seems to align with the Republican Party’s goals of getting more people to work and reducing reliance on welfare benefits. The Trump administration’s drug policy priorities, released in early April, identified creating “a skilled, recovery-ready workforce” and strengthening peer recovery support services as crucial efforts to help people “find recovery and lead productive, healthy lives.” Many recovery programs train people for blue-collar jobs, which could support Trump’s goal of reviving the manufacturing industry.

But the administration’s actions appear to conflict with its stated goals, said Rahul Gupta, the nation’s drug czar during the Biden administration.

“You can’t have manufacturing if people can’t pass a urine drug test or continue to suffer from addiction or relapse,” said Gupta, who is now president of GATC Health, a company using artificial intelligence for drug development.

Even if jobs return to rural America, cutting funding for recovery services and the main federal office overseeing such efforts could mean fewer people are employable, Gupta said.

Research on recovery programs, particularly those run by people with personal addiction experience, suggests they can increase engagement in court-ordered treatment, reduce the prevalence of rearrest, bolster attendance at treatment appointments, and improve the likelihood of families reunifying and stabilizing.

Billy O’Bryan sees these benefits daily. As a state director for the national nonprofit Young People in Recovery, O’Bryan oversees about a dozen chapters in Kentucky that teach people in recovery life skills, such as balancing a checkbook and interviewing for jobs, and show them how to have fun in sobriety, through group hikes and glow-in-the-dark Ultimate Frisbee games.

Providing recovery services “is when we really invest in their future,” said O’Bryan, who is in recovery too.

Six of his chapters were affected by the federal funding cuts. That has meant dipping into his organization’s rainy day fund to pay staff and cutting back on community events, including cleanup days in which chapter members gather used syringes off the street, pass out the overdose reversal medication naloxone, and talk to people using drugs about the possibility of recovery.

He’s exploring fundraising efforts now, but not all his chapters have the same ability.

“In a city like Louisville, fundraising is not a problem,” O’Bryan said, “but when you get out into Grayson, Kentucky” — a rural area in the Appalachian Mountains — “there’s not a lot of opportunities.”

In Minnesota, Kaleab Woldegiorgis and his colleagues at Niyyah Recovery Initiative used to spend hours a day at soup kitchens, community events, mosques, and on the streets of East African and Muslim neighborhoods, trying to connect with people using drugs. They spoke Somali, Amharic, and Swahili, among other languages.

Those outreach efforts allowed them to “find individuals in need of recovery services” who “weren’t seeking it out themselves,” said Woldegiorgis, who previously attended Niyyah’s support groups when he was dealing with addiction.

After building relationships with people, Woldegiorgis could help them connect with formal recovery services that bill their insurance, he said. But help couldn’t always wait for a contract.

One afternoon shortly before the federal funding cuts, Woldegiorgis and his colleagues spoke with a man who began weeping, recounting how he had wanted to get treatment a few days earlier but had lost his belongings, returned to using drugs, and ended up on the street. Woldegiorgis said he helped the man reconnect with a sister and begin exploring treatment options.

With the federal funding cuts, Niyyah may no longer be able to support this type of outreach work. Woldegiorgis fears it means people won’t receive the message of hope that can come from interacting with role models in recovery.

“People don’t pick up pamphlets to receive these messages. And people don’t read emails and people don’t look at billboards and find inspiration,” he said. “People need people.”

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

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The Joint Task Force issues a statement regarding Yale University's response to antisemitism and on-campus events.

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.

Congress returns from spring break next week and will get to work crafting a bill that would cut taxes and boost immigration enforcement — but that also could cut at least $880 billion over the next decade from a pool of funding that includes Medicaid. Some Republicans, however, are starting to question the political wisdom of making such large cuts to a program that provides health coverage to so many of their constituents.

Meanwhile, the Supreme Court heard arguments in a case challenging the requirement that most private insurance cover certain preventive services with no out-of-pocket cost for patients.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories. Tami Luhby CNN @Luhby Read Tami's stories. Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories.

Among the takeaways from this week’s episode:

• On the hunt for ways to pay for an extension of President Donald Trump’s tax cuts, many congressional Republicans are choosing their words carefully as they describe potential cuts to Medicaid — cuts that, considering heavy reliance on the program, especially in red states, could be politically unpopular.
• Amid the buzz over Medicaid cuts, another federal program that helps millions of Americans afford health care is also on the chopping block: the enhanced government subsidies introduced under the Biden administration that help pay premiums for Affordable Care Act plans. The subsidies expire at the end of this year, and Congress has yet to address extending them.
• One little-discussed option for achieving deep government spending cuts is Medicare Advantage, the private alternative to traditional Medicare that offers a variety of extra benefits for those over 65 — but that also costs the federal government a bundle. Even Mehmet Oz, the new head of the Centers for Medicare & Medicaid Services who once pushed Medicare Advantage plans as a TV personality, has cast sidelong glances at private insurers over how much they charge the government.
• And the Supreme Court heard oral arguments this week in a case that challenges the U.S. Preventive Services Task Force and could hold major implications for preventive care coverage nationwide. The justices’ questioning suggests the court could side with the government and preserve the task force’s authority — though that decision would also give more power over preventive care to Robert F. Kennedy Jr., the health and human services secretary.

Also this week, Rovner interviews KFF Health News’ Rae Ellen Bichell about her story on how care for transgender minors is changing in Colorado.

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

Julie Rovner: MedPage Today’s “Medical Journals Get Letters From DOJ,” by Kristina Fiore.

Sarah Karlin-Smith: The Tampa Bay Times’ “Countering DeSantis, $10M Hope Florida Donation Came From Medicaid, Draft Shows,” by Alexandra Glorioso and Lawrence Mower.

Tami Luhby: Stat’s “In Ireland, a Global Hub for the Pharma Industry, Trump Tariffs Are a Source of Deep Worry,” by Andrew Joseph.

Alice Miranda Ollstein: The New York Times’ “A Scientist Is Paid to Study Maple Syrup. He’s Also Paid to Promote It,” by Will Evans, Ellen Gabler, and Anjali Tsui.

Also mentioned in this week’s podcast:

• Stat’s “New England Journal of Medicine Gets Swept Up in U.S. Attorney Inquiry Into Alleged Bias,” by Anil Oza.
• KFF’s “KFF Tracking Poll on Health Information and Trust: The Public’s Views on Measles Outbreaks and Misinformation,” by Alex Montero, Grace Sparks, Julian Montalvo III, Ashley Kirzinger, and Liz Hamel.
• Bloomberg News’ “Food Industry Says There’s No Agreement With US Health Agency to Cut Dyes,” by Rachel Cohrs Zhang.
• Politico’s “RFK Jr. Eyes Reversing CDC’s Covid-19 Vaccine Recommendation for Children,” by Adam Cancryn.
• The New Yorker’s “The Cost of Defunding Harvard,” by Atul Gawande.
• The Wall Street Journal’s “Trump’s FDA Sends a Bullish Signal to Biotech,” by David Wainer

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

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

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

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He’s 17 and lives in the Chicago suburbs. He loves theater and recently helped direct a play at his high school. He takes competitive AP courses and is working on his Eagle Scout project.

And he’s been on a journey for four years.

Once a week, the transgender teen injects testosterone into his body. He’s had his eggs frozen in case he wants to have his own biological children one day. He talked with his parents and his psychologist and decided he was ready for the next step of treatment: top surgery to remove breast tissue.

“Getting this treatment isn’t fixing something that’s wrong with me,” the teen said. “It’s just helping me grow more into who I want to be and who I can feel most comfortable existing as.”

KFF Health News and NPR are not identifying the teen by name or using his mother’s last name because both are concerned he could be targeted for being transgender.

The teen’s mom, Jane, waited for a call to schedule the surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago. Then, she received a voicemail from the hospital. She said she knew what the message would be even before she listened to it: The surgery wouldn’t happen.

She had already read on social media that Lurie Children’s, located near downtown Chicago, would pause gender-affirming surgeries for people younger than 19 in the wake of an executive order from President Donald Trump.

Jane called Lurie back to confirm that surgeries were on hold, then told her son when he got home from school that day.

“I said, ‘Hey, we are going to take care of you,'” she recalled. “‘We will make it through this.'”

It was devastating, Jane said.

“We are being threatened,” she said. “The trans community is being threatened, and parents are being threatened.”

Her son said he feels hurt and confused. His doctors told him after Trump was elected in November that they would fight as hard as they legally could to support him, he recalled. But then Lurie’s leaders decided to cancel pending surgeries and stop scheduling new ones.

“I know that it’s not like a personal thing, like they didn’t look at me directly and go, ‘Yeah, you don’t deserve that,'” the teen said. “But it kind of feels like it sometimes, especially when a lot of what the sentiment has been, in general, towards trans people in society.”

On Feb. 7, a Lurie Children’s spokesperson confirmed the hospital would pause gender-affirming surgeries.

KFF Health News and NPR spoke with 10 patients or their parents in the Chicago area about how this affects their lives. They described their disappointment, their loss of hope for one day having a procedure, and their anger at the timing, when they already feel threatened and marginalized by hateful rhetoric around the country.

These families fear that they eventually could lose access to all gender-affirming care, such as therapy, puberty blockers, and hormones. They’ve also questioned why Illinois officials who have vowed to protect transgender rights have been quiet on what’s happening at Lurie Children’s and elsewhere. Northwestern Memorial Hospital in Chicago has also stopped such surgeries for minors, families told KFF Health News and NPR.

Lurie Children’s decision came after Trump’s executive order on Jan. 28 threatened to cut federal funding to health care providers offering gender-affirming medical care.

“Across the country today, medical professionals are maiming and sterilizing a growing number of impressionable children under the radical and false claim that adults can change a child’s sex through a series of irreversible medical interventions,” according to Trump’s order. “This dangerous trend will be a stain on our Nation’s history, and it must end.”

Another patient, a 16-year-old boy from Chicago, had a surgery date for a double mastectomy procedure — until Lurie Children’s canceled it. KFF Health News and NPR are not identifying him because he fears for his personal safety.

The teen felt betrayed by the cancellation, he said. He has been binding his chest for more than five years, but doing so causes rib and back pain.

Every morning, he faces a choice: bind his chest to fully “pass” as male, or skip that and experience a day without pain. He avoids sports because he can’t breathe as well when his chest is bound. A large part of his gender dysphoria is centered on having breasts, he said.

Lurie Children’s deemed the teen’s surgery “medically necessary,” according to medical documents his family shared with KFF Health News and NPR.

“Lurie’s decision set a precedent not only for other care providers but also for their patients,” said the teen. “They have established that they are no longer the safe haven they have claimed to be for so many years.”

Many of Lurie Children’s patients were referred for surgery to Northwestern Memorial Hospital, a prominent research hospital nearby. Their initial Northwestern appointments were later canceled. A Northwestern spokesperson declined repeated requests to comment.

Parents whose transgender children are receiving other types of medical care at Lurie Children’s, such as hormone therapy, worry about what the hospital might stop providing next.

“If we can’t get estrogen in a year, what do we do?” says the mother of a 15-year-old transgender girl. KFF Health News and NPR are not naming her because she fears retaliation against her daughter if she is identified. “Parents with means are talking about leaving the country.”

The Politics of Pausing Surgeries

In a statement, physician Robert Garofalo said he hears and understands the frustration. He is the founding director of the Gender Development Program at Lurie Children’s.

“My life’s work has been devoted to these children, adolescents, and their families,” Garofalo wrote. “As someone who has spent his entire career at Lurie Children’s, I can assure you these kids and these families matter to this institution. It’s important to know that this decision was painstakingly difficult, and it was made amid unprecedented circumstances and external pressures.”

The hospital’s decision, Garofalo wrote, was based on the belief it could help safeguard most of the clinical services offered by his program.

Surgery among trans youth is rare, researchers have found.

After Trump’s executive order, Illinois Attorney General Kwame Raoul and 14 of his peers in other states vowed to protect access to treatment. In a statement, Raoul said the Illinois Human Rights Act prohibits health care providers from discriminating against patients because of their gender identity.

But recently he told KFF Health News and NPR that it would be hard to make a case that Lurie and Northwestern are violating state law.

“I don’t look at Lurie or Northwestern as a bad actor here,” Raoul, a Democrat, said after an event on April 1, at which he told a packed room of civic leaders in a restaurant near downtown Chicago to stand up against intimidation by the White House. It’s not discrimination, Raoul said, “when the federal government is holding a gun to your head.”

When KFF Health News and NPR asked whether Lurie Children’s is violating the Human Rights Act, Democratic Gov. JB Pritzker didn’t answer. But he did say hospitals are being “blackmailed” into limiting care.

“This is not the hospitals’ fault,” Pritzker said. “Believe me. I know the people at Lurie Children’s Hospital, I know the people who run most of these hospitals, and I can tell you that they want to do the right thing for their patients.”

Lurie Children’s and some hospitals across the country have paused surgeries or other types of gender-affirming treatment despite federal judges who issued rulings blocking Trump’s order.

A Hospital Confronts an Uncertain Legal Future

Lurie Children’s has one of the oldest gender-affirming care programs in the country, launched in 2013, and still offers hormone therapy, puberty blockers, and behavioral health services.

Medical providers, patients, and parents point to research that underscores the crucial and even lifesaving role that transgender medical care can provide, such as helping decrease depression and anxiety. Access to gender-affirming care is supported by the American Academy of Pediatrics and the American Medical Association.

The transgender community is small, and families say they feel targeted because of this. In 2023, around 3% of high school students in the U.S. identified as transgender, and an additional 2% identified as questioning, according to a 2023 study from the federal Centers for Disease Control and Prevention.

Transgender youths experience more violence, bullying, and suicidal thoughts than their non-trans peers, the CDC study found. About 1 in 4 students who were transgender or questioned their gender identity attempted suicide in the past year, the study found.

In recent years, many states have cracked down on access to gender-affirming care for minors, according to KFF, a health information nonprofit that includes KFF Health News. Just over half the country — 27 states — ban or restrict access. Recently, Iowa took the step of stripping civil rights protections from people who are trans or nonbinary.

Elizabeth Mack, a pediatric critical care physician in South Carolina, has witnessed the consequences of a ban in her state. She has treated several children who attempted suicide or died by suicide because they couldn’t access treatment, according to conversations she had with the patients or family members.

“It’s just one of those things that leaves a mark that I can’t unsee,” Mack said of her experience.

This Teen Already Had His Surgery but Still Worries

Ben Garcia, 18, a Chicago high school senior, offers a glimpse into life post-surgery. In 2023, he had a double mastectomy. He believes that without the medical care he’s received for the past several years, he would be a different person, likely more withdrawn and less confident.

“This care has allowed me to be a lot more comfortable in who I am, in the way that I present myself to the world,” Garcia said.

Garcia and his mother, Michelle Vallet, emphasized that his path to surgery was a slow process that proceeded with care and deliberation. Once puberty started, Garcia started to have questions and wanted to explore what it would mean to delay the changes occurring in his body. At that time, he was around 10 or 11 years old.

Vallet reached out to Lurie Children’s Hospital and booked a first appointment for Garcia. It lasted three hours, she said.

Much of the public misunderstands the process, Vallet said, and transgender kids have become some of the most scrutinized patients in America.

“I think they feel like trans kids are just one day waking up saying, ‘I want to be a boy,'” Vallet said. “They go to the gender clinic, wham bam. That’s not how this care happens.”

She, her son, and the medical staff at Lurie Children’s talked through the risks of treatment, the possible side effects, and the next steps.

Garcia went through mental health evaluations over multiple appointments before he could take puberty blockers to stop his body from going through changes. Then he started taking low doses of testosterone, a hormone. Gradually, his voice dropped, and he grew facial hair.

Garcia still takes testosterone shots every week and gets checkups at Lurie Children’s to monitor his hormone levels. He’s now nervous this care could also be affected. His mother is worried that the hospital might suspend all types of gender-affirming care.

“It’s heartbreaking to see hospitals as big as Lurie comply in advance,” Vallet said, referring to the executive order’s threats to cut hospital payments. “It feels like a betrayal. … There’s federal dollars on the line, but at a certain point in the environment we’re in, you have to say, ‘No, I’m not doing this.'”

The suburban 17-year-old who never got a surgery date is waiting to hear back from other hospitals. He has a preliminary appointment booked at one hospital in May, but there’s a waitlist. Surgery is likely months away.

He’s convinced that the medical care he’s already received has saved his life and given him hope for his future. He thinks about studying medicine in college, inspired by the care he’s received.

His mom, Jane, said he’s thriving.

“I’m really proud of him, because he just makes sense,” Jane said as her son described all that’s involved in being able to have surgery. “He makes sense, and people are listening to him make sense and giving him what he needs to exist.”

This article is from a partnership that includes WBEZ, NPR, and KFF Health News.

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

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HHS OCR and PIH Health, Inc. agree to address a HIPAA violation from a phishing attack that exposed unsecured ePHI.

Mientras la epidemia de sarampión más grave en una década ha causado la muerte de dos niños y se ha extendido a 27 estados sin dar señales de desacelerar, las creencias sobre la seguridad de la vacuna contra esta infección y la amenaza de la enfermedad se polarizan rápido, alimentadas por las opiniones antivacunas del funcionario de salud de mayor rango del país.

Aproximadamente dos tercios de los padres con inclinaciones republicanas desconocen el aumento en los casos de sarampión este año, mientras que cerca de dos tercios de los demócratas sabían sobre el tema, según una encuesta de KFF publicada el miércoles 23 de abril.

Los republicanos son mucho más escépticos con respecto a las vacunas y tienen el doble de probabilidades (1 de cada 5) que los demócratas (1 de cada 10) de creer que la vacuna contra el sarampión es peor que la enfermedad, según la encuesta realizada a 1.380 adultos estadounidenses.

Alrededor del 35% de los republicanos que respondieron a la encuesta, realizada del 8 al 15 de abril por internet y por teléfono, aseguraron que la teoría desacreditada que vincula la vacuna contra el sarampión, las paperas y la rubéola con el autismo era definitiva o probablemente cierta, en comparación con solo el 10% de los demócratas.

Las tendencias son prácticamente las mismas que las reportadas por KFF en una encuesta de junio de 2023.

Sin embargo, en la nueva encuesta, 3 de cada 10 padres creían erróneamente que la vitamina A puede prevenir las infecciones por el virus del sarampión, una teoría que Robert F. Kennedy Jr., el secretario de Salud y Servicios Humanos, ha diseminado desde que asumió el cargo, en medio del brote de sarampión.

Se han reportado alrededor de 900 casos en 27 estados, la mayoría en un brote centrado en el oeste de Texas.

“Lo más alarmante de la encuesta es que estamos observando un aumento en la proporción de personas que han escuchado estas afirmaciones”, afirmó la coautora Ashley Kirzinger, directora asociada del Programa de Investigación de Encuestas y Opinión Pública de KFF. (KFF es una organización sin fines de lucro dedicada a la información sobre salud que incluye a KFF Health News).

“No es que más gente crea en la teoría del autismo, sino que cada vez más gente escucha sobre ella”, afirmó Kirzinger. Debido a que las dudas sobre la seguridad de las vacunas es factor directo de la decision de los padres reducer la vacunación de sus hijos, “esto demuestra la importancia de que la información veraz forme parte del panorama mediático”, añadió.

“Esto es lo que cabría esperar cuando la gente está confundida por mensajes contradictorios provenientes de personas en posiciones de autoridad”, afirmó Kelly Moore, presidenta y directora ejecutiva de Immunize.org, un grupo de defensa de la vacunación.

Numerosos estudios científicos no han establecido ningún vínculo entre cualquier vacuna y el autismo. Sin embargo, Kennedy ha ordenado al Departamento de Salud y Servicios Humanos (HHS) que realice una investigación sobre los posibles factores ambientales que contribuyen al autismo, prometiendo tener “algunas de las respuestas” sobre el aumento en la incidencia de la afección para septiembre.

La profundización del escepticismo republicano hacia las vacunas dificulta la difusión de información precisa en muchas partes del país, afirmó Rekha Lakshmanan, directora de estrategia de The Immunization Partnership, en Houston.

El 23 de abril, Lakshmanan iba a presentar un documento sobre cómo contrarrestar el activismo antivacunas ante el Congreso Mundial de Vacunas en Washington. El documento se basaba en una encuesta que reveló que, en las asambleas estatales de Texas, Louisiana, Arkansas y Oklahoma, los legisladores con profesiones médicas se encontraban entre los menos propensos a apoyar las medidas de salud pública.

“Hay un componente político que influye en estos legisladores”, afirmó. Por ejemplo, cuando los legisladores invitan a quienes se oponen a las vacunas a testificar en las audiencias legislativas, se alimenta una avalancha de desinformación difícil de refutar, agregó.

Eric Ball, pediatra de Ladera Ranch, California, área afectada por un brote de sarampión en 2014-2015 que comenzó en Disneyland, afirmó que el miedo al sarampión y las restricciones más estrictas del estado de California sobre las exenciones de vacunas evitaron nuevas infecciones en su comunidad del condado de Orange.

“La mayor desventaja de las vacunas contra el sarampión es que funcionan muy bien. Todos se vacunan, nadie contrae sarampión, todos se olvidan del sarampión”, concluyó. “Pero cuando regresa la enfermedad, se dan cuenta de que hay niños que se están enfermando de gravedad, y potencialmente muriendo en la propia comunidad, y todos dicen: ‘¡Caramba! ¡Mejor que vacunemos!’”.

En 2015, Ball trató a tres niños muy enfermos de sarampión. Después, su consultorio dejó de atender a pacientes no vacunados. “Tuvimos bebés expuestos en nuestra sala de espera”, dijo. “Tuvimos una propagación de la enfermedad en nuestra oficina, lo cual fue muy desagradable”.

Aunque dos niñas que eran sanas murieron de sarampión durante el brote de Texas, “la gente todavía no le teme a la enfermedad”, dijo Paul Offit, director del Centro de Educación sobre Vacunas del Hospital Infantil de Philadelphia, que ha atendido algunos casos.

Pero las muertes “han generado más angustia, según la cantidad de llamadas que recibo de padres que intentan vacunar a sus bebés de 4 y 6 meses”, contó Offit. Los niños generalmente reciben su primera vacuna contra el sarampión al año de edad, porque tiende a no producir inmunidad completa si se administra antes.

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While the most serious measles epidemic in a decade has led to the deaths of two children and spread to 27 states with no signs of letting up, beliefs about the safety of the measles vaccine and the threat of the disease are sharply polarized, fed by the anti-vaccine views of the country’s seniormost health official.

About two-thirds of Republican-leaning parents are unaware of an uptick in measles cases this year while about two-thirds of Democratic ones knew about it, according to a KFF survey released Wednesday.

Republicans are far more skeptical of vaccines and twice as likely (1 in 5) as Democrats (1 in 10) to believe the measles shot is worse than the disease, according to the survey of 1,380 U.S. adults.

Some 35% of Republicans answering the survey, which was conducted April 8-15 online and by telephone, said the discredited theory linking the measles, mumps, and rubella vaccine to autism was definitely or probably true — compared with just 10% of Democrats.

The trends are roughly the same as KFF reported in a June 2023 survey. But in the new poll, 3 in 10 parents erroneously believed that vitamin A can prevent measles infections, a theory Health and Human Services Secretary Robert F. Kennedy Jr. has brought into play since taking office during the measles outbreak.

About 900 cases have been reported in 27 U.S. states, mostly in a West Texas-centered outbreak.

“The most alarming thing about the survey is that we’re seeing an uptick in the share of people who have heard these claims,” said co-author Ashley Kirzinger, associate director of KFF’s Public Opinion and Survey Research Program. KFF is a health information nonprofit that includes KFF Health News.

“It’s not that more people are believing the autism theory, but more and more people are hearing about it,” Kirzinger said. Since doubts about vaccine safety directly reduce parents’ vaccination of their children, “that shows how important it is for actual information to be part of the media landscape,” she said.

“This is what one would expect when people are confused by conflicting messages coming from people in positions of authority,” said Kelly Moore, president and CEO of Immunize.org, a vaccination advocacy group.

Numerous scientific studies have established no link between any vaccine and autism. But Kennedy has ordered HHS to undertake an investigation of possible environmental contributors to autism, promising to have “some of the answers” behind an increase in the incidence of the condition by September.

The deepening Republican skepticism toward vaccines makes it hard for accurate information to break through in many parts of the nation, said Rekha Lakshmanan, chief strategy officer at The Immunization Partnership, in Houston.

Lakshmanan on April 23 was to present a paper on countering anti-vaccine activism to the World Vaccine Congress in Washington. It was based on a survey that found that in the Texas, Louisiana, Arkansas, and Oklahoma state assemblies, lawmakers with medical professions were among those least likely to support public health measures.

“There is a political layer that influences these lawmakers,” she said. When lawmakers invite vaccine opponents to testify at legislative hearings, for example, it feeds a deluge of misinformation that is difficult to counter, she said.

Eric Ball, a pediatrician in Ladera Ranch, California, which was hit by a 2014-15 measles outbreak that started in Disneyland, said fear of measles and tighter California state restrictions on vaccine exemptions had staved off new infections in his Orange County community.

“The biggest downside of measles vaccines is that they work really well. Everyone gets vaccinated, no one gets measles, everyone forgets about measles,” he said. “But when it comes back, they realize there are kids getting really sick and potentially dying in my community, and everyone says, ‘Holy crap; we better vaccinate!’”

Ball treated three very sick children with measles in 2015. Afterward his practice stopped seeing unvaccinated patients. “We had had babies exposed in our waiting room,” he said. “We had disease spreading in our office, which was not cool.”

Although two otherwise healthy young girls died of measles during the Texas outbreak, “people still aren’t scared of the disease,” said Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, which has seen a few cases.

But the deaths “have created more angst, based on the number of calls I’m getting from parents trying to vaccinate their 4-month-old and 6-month-old babies,” Offit said. Children generally get their first measles shot at age 1, because it tends not to produce full immunity if given at a younger age.

KFF Health News’ Jackie Fortiér contributed to this report.

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SACRAMENTO, Calif. — Medi-Cal, California’s complex, $174.6 billion Medicaid program, provides health insurance for nearly 15 million residents with low incomes and disabilities. The state enrolls twice as many people as New York and more than three times as many as Texas — the two states with the largest number of Medicaid participants after California.

Enrollment is high because California goes beyond federal eligibility requirements, opening Medi-Cal to more low-income residents. The state also provides a broad range of benefits, such as vision, dental, and maternity care — some of which is largely paid for by federal dollars but which also affects state spending.

But lately, Medi-Cal has found itself in political crosshairs.

Democrats say the biggest threat to Medi-Cal is $880 billion in GOP budget cuts being mulled in Washington, D.C., which health experts say would require eligibility restrictions, such as work requirements, or program cuts to yield enough savings over a decade. Republicans argue that Medicaid costs have spiked due to fraud and abuse and they criticize state Democrats for making the benefit available to immigrants regardless of legal status.

In March, Gov. Gavin Newsom’s administration borrowed $3.4 billion to cover an unexpected overrun in Medi-Cal, and lawmakers in April appropriated an additional $2.8 billion for the rest of the fiscal year. Although the Democratic governor acknowledged a need for adjustments, he has defended the state’s efforts to get more people covered. In 2022, California’s uninsured rate for residents under age 65 hit a record low of 6.2%, according to the California Health Care Foundation.

As lawmakers debate funding for the safety net program, here’s what’s at stake for California’s largest health program.

Who’s Covered?

More than a third of Californians depend on Medi-Cal or the closely related Children’s Health Insurance Program to see a doctor, therapist, or dentist. They rely on the program to get medicine and access treatment. It can also be a lifeline for families by allowing people with disabilities and seniors to stay in their homes and providing coverage to their caregivers. It also funds nursing care for seniors.

The overwhelming majority of enrollees qualify because they earn 138% or less of the federal poverty level: $21,597 annually for an individual person or $44,367 for a family of four. While that’s low for a state where the median household income tops $96,000, it’s far more generous than Alabama’s family eligibility limit, which is 18% of the federal poverty level, or Florida’s, at 26%.

Unlike Alabama or Florida, California extends coverage to low-income adults without dependents. The state also covers more people with disabilities who work, inmates, and other residents who wouldn’t qualify for the benefit program if California lawmakers hadn’t expanded the program beyond what the federal government requires.

According to state estimates, Medi-Cal covers about 7.3 million low-income families and an additional 5 million adults, most of whom don’t have dependents. An additional million people with disabilities rely on the program.

Medi-Cal also picks up the tab for 1.4 million residents 65 and older for benefits not covered by Medicare, such as long-term care and dental, hearing, and vision care.

The majority of adult Medi-Cal recipients under 65 work, according to a KFF review of March 2024 census data. In California, about 42% of nondisabled adults on Medi-Cal work full time and an additional 20% work part time. Those not employed were most commonly caring for a family member, attending school, or ill.

Just over half of Medi-Cal recipients are Latino, about 16% white, 9% Asian or Pacific Islander, and 7% Black, according to state enrollment data. That differs from the nation as a whole, where about 40% of people under age 65 who use Medicaid are white, 30% Hispanic, 19% Black, and 1% Indigenous people.

Where Does the Money Come From?

The federal government pays for about 60% of the Medi-Cal program. Of its nearly $175 billion budget this fiscal year, Washington, D.C., is expected to contribute $107.5 billion.

An additional $37.6 billion comes from the state’s general fund. The final $29.5 billion comes from other sources including hospital fees, a managed-care organization tax, tobacco tax revenue, and drug rebates.

California receives 50% in matching federal dollars for core services, such as coverage to children and low-income pregnant women. But it gets a 90% match for the roughly 5 million Californians it has added to rolls under the Medicaid expansion authorized by the Affordable Care Act.

Where Does It Go?

On average, Medi-Cal costs $8,000 per recipient, but costs vary widely, according to a March analysis by the California Legislative Analyst’s Office.

For instance, people with disabilities account for 7% of enrollees but 19% of Medi-Cal’s spending, with an average annual cost of $21,626.

Meanwhile, the cost to cover seniors averages roughly $15,000. And senior enrollment, at 1.4 million, has skyrocketed, increasing 40% since 2020 as lawmakers eased the rules for how many assets people 65 and older could have and still qualify for the program.

California also foots much of the bill to cover about 1.6 million immigrants without legal status — roughly $8.4 billion of the $9.5 billion, Department of Finance program budget manager Guadalupe Manriquez said during a recent Assembly Budget Committee hearing.

What Could Get Cut?

President Donald Trump in March said that he would not “touch Social Security, Medicare, Medicaid” but focus on getting the “fraud out of there.” However, health experts say Medicaid services would be gutted if Congress follows through on massive spending reductions to pay to extend Trump’s tax cuts.

Congressional Republicans have discussed implementing work requirements for nondisabled adults, which could affect at least 1 million Medicaid enrollees in California, the most of any state, according to an analysis by the Urban Institute.

Lawmakers also could roll back the Medicaid expansion under the Affordable Care Act, also known as Obamacare, which passed in 2010 and allowed more people to qualify for Medicaid based on income. California, 39 other states, and Washington, D.C., have chosen to adopt “Medicaid expansion,” in which the federal government pays for 90% of coverage for those enrollees.

Such a move would cost California billions each year if it opted to continue coverage for the roughly 5 million additional enrollees who have gained coverage under the expansion.

Republicans could also make it tougher for states such as California to continue to draw federal aid through provider taxes such as the MCO tax, something the first Trump administration proposed but later dropped. The tax on managed care plans brings in about $5 billion a year and was endorsed by voters in a ballot initiative last fall, but the federal government has been complaining for years about how states levy such taxes on insurance plans and hospitals. If it restricts how states collect these taxes, it would likely cause a funding gap in California.

If federal cuts occur, Newsom officials acknowledge, the state couldn’t absorb the cost of existing programs. Republicans are pressuring Democrats who control the legislature to end Medi-Cal coverage of residents without legal status — something neither Newsom nor Democratic legislative leaders have expressed a willingness to do.

State leaders also could be faced with cutting optional benefits such as dental care and optometry, trimming services aimed at enhancing recipients’ quality of life, or reducing payments to managed care plans that cover 94% of Medi-Cal recipients.

That’s what California lawmakers did during the Great Recession, cutting reimbursement rates to providers and eliminating benefits including eye and dental care for adults. The governor at the time, Republican Arnold Schwarzenegger, went a step further, chopping $61 million from counties’ Medi-Cal funding in a budget bloodletting that he said contained "the good, the bad, and the ugly."

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

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HELENA, Mont. — As Republican legislative leaders in Montana girded for this year’s battle over whether to extend Medicaid expansion in the state, they took aim at one of the program’s biggest backers: hospitals.

If Montana’s hospitals wanted to extend the government health insurance program that cost taxpayers about $1 billion in 2024, and benefit from that revenue, they should give something back, such as additional community health care services and benefits, GOP leaders argued as the session began in January.

But instead, they found out just how formidable a political force the state’s hospitals can be. The hospitals not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on hospitals themselves.

Hospitals opposed and defeated bills to impose price caps and to prominently post their charges and killed an attempt to redirect Medicaid funds raised by a hospital tax.

Most Montana hospitals are nonprofit organizations that are largely exempt from state income and property taxes. Legislators requested drafts of several bills to scrutinize hospitals’ “community benefits,” the services they provide for free or at discounted costs that justify their nonprofit status, but did not introduce them during the session.

The only such bill introduced has been significantly amended, at the hospitals’ request.

The state hospital lobbyists’ political pull has frustrated conservative lawmakers in leadership positions who are seeking more oversight of and transparency from the hospitals.

“Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services,” said Republican state Sen. Greg Hertz, who sponsored the price-cap bill that was rejected on the Senate floor this month.

Hospitals say they’re willing to debate ways to improve health care in Montana, and they point to Medicaid expansion as a program whose benefits flow to all corners of the state.

Yet when it comes to regulations they regard as onerous or criticism that they’re uncooperative partners on health care policy, the hospitals aren’t shy about pushing back.

“I don’t think I’ve ever been approached by any of them on reforming the health care system,” Montana Hospital Association president and CEO Bob Olsen said of the hospitals’ critics in the legislature. “I think that we’ve demonstrated that we work on all kinds of health policies.”

Republicans hold big majorities this legislative session and their conservative leaders — most of whom opposed extending Medicaid expansion — have often seen hospitals as a political foe.

But Montana’s hospitals have always been a strong lobby in the state, with bipartisan appeal. The state’s 63 hospitals employ about 30,000 people, according to the MHA, including many of the state’s physicians, and have multiple lobbyists at the Capitol, both on their own and through the hospital association.

They also have a strong ally in state Rep. Ed Buttrey, a moderate Republican who also is on the board of directors of Benefis Health System. Buttrey sponsored the original 2015 Montana Medicaid expansion bill and bills to renew the program in 2019 and this year.

In the past year, hospitals worked to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans.

Medicaid expansion had been set to expire this June, but the bill extending it breezed through the legislature, passing by comfortable margins in February, with bipartisan support. Republican Gov. Greg Gianforte signed it into law last month.

The MHA has a political action committee that donates to multiple lawmakers of both parties. In 2024, it paid particular attention to allies of Medicaid expansion.

The PAC gave $61,000 to the Montana Democratic Party and $75,000 to a political committee that supported moderate Republicans in contested GOP legislative primaries last June, according to filings with the state commissioner of political practices.

The majorities that passed Medicaid expansion in February included every Democrat in the legislature and many of the moderate Republicans supported by the political committee financed partly by the MHA.

Democrats also have been voting almost universally against bills that would impose new regulations on hospitals.

Hertz’s bill, which would have capped larger hospitals’ prices at 300% of the Medicare rate for most procedures, failed on the Senate floor this month on a 26-24 vote. All but one Democrat and nine Republicans voted against it.

State Sen. Cora Neumann, a Democratic member of the Senate Public Health, Welfare and Safety Committee, also voted against a bill requiring nonprofit hospitals to show that their community benefits meet or exceed the value of their property tax exemptions.

Neumann said she supports better access to affordable care in Montana but that “the policies we have been presented with are not well thought out and raise concerns for me about government overreach.”

State Rep. Jane Gillette, a Republican who chaired the legislative panel overseeing health care spending in the state budget, tried last month to redirect a small portion of Medicaid expansion funds — $7 million a year — to certain hospitals. The money is part of $365 million generated annually by a tax on hospital services, and the corresponding federal match, according to Olsen, the hospital association leader.

Half of the $7 million would go to smaller, independent hospitals and the other half would be distributed to hospitals showing “exceptional health outcomes and efficiencies,” she said.

The House Appropriations Committee agreed March 24 to insert her proposals into the session’s main budget bill.

But a week later — after hospitals lobbied against the change — the same committee torpedoed language in a separate bill that would have implemented the changes. The next day, on the House floor, all but one Democrat and 25 Republicans formed a two-thirds majority to remove the funding change from the budget bill.

“That tells you what a stronghold the hospitals have,” Gillette said. “Even a slight variation to our current system is not acceptable to them.”

Olsen said the change would have taken money from some larger hospitals and moved it elsewhere, and not necessarily to the smaller hospitals Gillette hoped to help.

“She approached us, but never tried to work with us,” he said. “It wasn’t going to reach those hospitals that she wanted to reach.”

Senate President Matt Regier, a Republican, made a last attempt to insert Gillette’s amendment into the state budget bill on the Senate floor on April 17, but it was rejected on a 27-23 vote, with all 18 Democrats and nine Republicans voting no.

Hospitals are, however, working with Regier on his community-benefit reporting measure — the last-standing bill that might impose new regulations on hospitals.

The bill says if the community benefits reported by nonprofit hospitals don’t equal or exceed the value of their exemption from property taxes, they must pay the difference into a fund that would be distributed to small, “critical access” hospitals.

During the bill’s initial hearing April 2, Regier — a Medicaid expansion opponent and sometimes sharp critic of the hospitals — said he was open to amendments that hospitals might find acceptable.

The original bill cleared the Senate April 5 on a party-line, 30-18 vote, with Republicans in favor. Then, in a House committee meeting on April 17, Republicans attached amendments that had the hospitals’ blessing and sent the bill to the House floor.

The changes delay the law’s effective date until 2027 and more specifically define the community benefits that must be reported and the potential property tax liability to which hospitals must match their benefit.

Olsen said the MHA will support the amended bill.

“The truth of it is, hospitals have always far exceeded the tax exemption for community benefits, on the spending they do,” he said. “Some might fall short, from time to time — but over the long haul, they exceed those exemptions.”

Regier’s attempt to quantify the amount and compare it to nonprofit hospitals’ tax exemption is not unreasonable, Olsen said: “I’m confident hospitals can do it.”

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HHS and FDA announced a series of new measures to phase out all petroleum-based synthetic dyes from the nation’s food supply.

Eboni Tomasek expected to take home her newborn the day after he was born in a San Jose hospital. But, without explanation, hospital staff said they needed to stay a second night. Then a third. A nurse said her son had jaundice. Then said that he didn’t. She wondered if they had confused her with another African American mother. In any event, why couldn’t she and the baby boy she’d named Ezekiel go home?

No one would say. “I asked like three times a day. It was brushed off,” Tomasek said, relaying her story by phone as she cradled Ezekiel, now 6 months old, in their San Jose apartment. She was told only that more tests were being run to ensure “everything’s good before you leave.”

She knew that her intensifying anger and fear about the holdup could raise her blood pressure, that Black pregnant women and new mothers are especially vulnerable to hypertension, and that it could kill her. Distraught, she called the person she most trusted to calm her, a caseworker for Santa Clara County’s Black Infant Health program.

“She really did help me to stay centered,” Tomasek said of the caseworker, who tracked her health throughout the pregnancy. “I felt a lot better.”

Since 2000, approximately 14,000 families have participated in Santa Clara County’s Black Infant Health program and related Perinatal Equity Initiative, both aimed at decreasing racial disparities in maternal and infant health. Enrolled mothers are assigned caseworkers and nurses who visit them at home to monitor blood pressure and other vital signs, help with breastfeeding, and screen infants for developmental delays. The mothers also attend support groups to learn skills to buffer the well-documented effects of racism in obstetric care.

The programs have measurably improved the health of enrolled women over the past decade, county data from 2024 shows, reducing rates of maternal hypertension — a leading cause of pregnancy-related deaths — by at least 30% and increasing screenings for other potentially life-threatening conditions.

Experts in the field and program participants stress that this work is urgent — in California, Black women are at least three times as likely as white women to die from pregnancy-related causes, and, nationally, Black infants have the highest rates of preterm birth and mortality.

While advocates for Black mothers laud the programs’ results as cause for optimism, they are concerned that the climate against diversity, equity, and inclusion, or DEI, initiatives could impede progress. Efforts to improve the health of this at-risk population have been targets of private lawsuits before, but since President Donald Trump took office, he has demanded the termination of all “‘equity-related’ grants” and threatened federal litigation against programs he claims illegally favor one racial group over another — even when they are designed to save lives, as is the case with the Santa Clara efforts.

Santa Clara County has received most of the $1 million-plus in federal funding it expects for Black Infant Health and the Perinatal Equity Initiative programs for the fiscal year ending in June. But county officials say it’s unclear how much, if any, of the remaining money — which comes from the federal health department’s Health Resources and Services Administration and Centers for Medicare & Medicaid Services — is at risk amid federal anti-DEI policies and the recent cuts at the Department of Health and Human Services. The status on funding for the coming fiscal year is also unknown, county officials said.

Santa Clara stands to lose more than $11 million in public health funds due to the federal cuts, including money used to help deliver health services to underserved communities. A list of some of the federal grants already terminated includes millions of dollars from at least three programs in other states focused on Black birth outcomes.

Any decrease in federal funding for these types of programs could have dire consequences, said Angela Aina, cofounder and executive director of Black Mamas Matter Alliance. “We will likely see an increase in deaths,” she predicted.

Aina’s group pilots research and promotes public policy on behalf of 40 U.S. community-based organizations focused on Black maternal health. Member programs connect pregnant women to health care, counseling, and nutritional and breastfeeding advice, among other things.

If these services are cut, advocates fear, the progress made toward reducing racial disparities in birth outcomes could backslide. KFF research has found that eliminating such focused efforts could exacerbate the inequities, worsen the nation’s health, and increase health care costs overall.

“Our stakeholders are in a state of confusion right now because the federal workers that still have a job are not allowed to communicate, or there’s some kind of muzzle on their communication,” Aina said. “We don’t know — are we going to receive the rest of those grant funds?”

When asked how the state would respond to federal budget cuts to programs like Black Infant Health, Brian Micek, a California Department of Public Health spokesperson, said only that the agency remains “committed to protecting Californians’ access to the critical services and programs they need” and steadfast in its mission to “advance the health and well-being of California’s diverse people and communities.”

Requests for comment from the federal departments responsible for the grants funding Santa Clara’s programs went unanswered.

Communications directors from groups working on reducing racial disparities in birth outcomes declined to be interviewed for this article, citing fears of retribution.

Tonya Robinson, program manager for Black Infant Health, stands defiant in the face of these threats. She sees the federal government’s anti-DEI crusade as an invitation to practice the very skills they teach.

“Our program is working,” Robinson said. “And the way it’s working is by empowering women, giving women voices to help them stand up for what is right, and to recognize discrimination and the impact of structural racism on their bodies.”

The government’s antagonism toward her work inspires Robinson to soldier on calmly as a role model for the women she serves.

“We’re continuing to forge ahead,” Robinson said. “We want to make sure that we can be an example of how to manage stress at this time, in front of our clients.”

Evidence surfaced that childbirth was deadlier for African American women than white women more than a century ago. But the issue did not gain significant public attention until 2018, when celebrities like Beyoncé and Serena Williams began airing their harrowing birth stories, highlighting the striking vulnerability of Black pregnant women and new mothers, even those with unlimited means.

In 2021, then-President Joe Biden proclaimed a week in April Black Maternal Health Week. A presidential proclamation marking that week in 2024 read that “when Black women suffer from severe injuries or pregnancy complications or simply ask for assistance, they are often dismissed or ignored in the health care settings that are supposed to care for them.”

Eboni Tomasek certainly felt ignored.

Three days after giving birth in September — and after her Santa Clara caseworker reminded her she had a right to know why she wasn’t being released — a nurse finally explained that Tomasek’s blood pressure had been too high for the hospital to safely discharge her.

Had she been white, Tomasek believes, the staff would have informed her sooner. “I feel like they were being racist,” she said. She credited her training through Black Infant Health with her ability to calm herself and help lower her blood pressure, allowing her to leave that day with Ezekiel.

Jamila Perritt, president and CEO of Physicians for Reproductive Health, believes that the poor health outcomes Black women and infants face have historical roots and will change only with the help of programs that, like those in Santa Clara, address conditions facing Black women.

“What we’re seeing in terms of maternal mortality are race-bound conditions,” said Perritt, an obstetrician who co-chairs Washington, D.C.’s Maternal Mortality Review Committee. “Our policies cannot be race-blind if we’re attempting to address them.”

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

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

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They’re the fixers, the ones who step in when Affordable Care Act enrollees have a problem with their coverage, like a newborn incorrectly left off a policy or discovering that a rogue broker had signed them up or switched their plan without consent.

Specially trained caseworkers help resolve such issues, which might otherwise cause consumers to rack up large doctors’ bills or prevent them or their family members from getting care. Now, though, the broad federal reduction in force set in motion by the Trump administration has cut the ranks of those caseworkers, slashing two out of six divisions of caseworkers, according to one affected worker and a former Centers for Medicare & Medicaid Services official familiar with the situation, Jeffrey Grant.

Currently, the number of ACA enrollees is at an all-time high of 24 million. The ACA — known as Obamacare — has long drawn disfavor from Republicans and Trump himself. The health law faces additional changes next year that, if adopted, could sow confusion and more problems. Consumers would face a new learning curve with extra paperwork and rules. And the caseworker cuts might extend the time needed to resolve any difficulties.

“It impacts not only our jobs, but all these people we serve,” said one New York City-based caseworker, who was let go in a Feb. 14 purge affecting federal employees in their probationary periods. “Usually, we would have on average 14 days to take care of a case that was very difficult, although the urgent cases would be solved within two to three business days. It will now be delayed so much more. Whole teams got wiped out completely.”

NPR and KFF Health News are not naming the two affected workers in this article because they fear professional or personal repercussions for speaking to the media.

The two teams of caseworkers were dismantled in a haphazard fashion that left some workers without an official notice but locked out of their computers.

The cuts have demoralized caseworkers, whose jobs demand a grasp of complex and arcane health insurance rules in a little-known government department that most consumers don’t interact with — CMS’ Exchange Customer Solutions Group — until they need help.

“The loss in staffing is going to reduce the ability for people to get through” to caseworkers after contacting the marketplace or other organizations for help, said Jackie Kiger, executive director of Pisgah Legal Services, a nonprofit that provides legal and ACA help for North Carolina consumers and is facing a budget reduction under a separate effort by the Trump administration to cut “navigator” funding by 90%. Navigators are government-funded nonprofits that help people enroll in the ACA or resolve problems with coverage.

The federal force reduction aims to decrease the number of employees at agencies within the Department of Health and Human Services from 82,000 to 62,000, including the Centers for Disease Control and Prevention, the Food and Drug Administration, the National Institutes of Health, and CMS.

CMS, which oversees the ACA and other government health programs, will lose about 300 workers, including about 30 caseworkers scattered nationwide. The cuts come amid thousands of other federal job losses, including front-line workers across an array of agencies, from Social Security field offices to the National Park Service.

In a press release, HHS estimated its reduction in force will save taxpayers $1.8 billion a year. No one from CMS responded to KFF Health News’ questions about the caseworker reductions.

What Will Be Affected?

When consumers have a problem with their ACA plan, their first step is usually to call the federal or state marketplace on which they purchased coverage.

Those call centers can handle basic questions about plans purchased on the federal exchange, which serves 31 states. (State marketplaces handle their own complex cases and don’t rely on federal caseworkers.)

When someone calls the federal marketplace 800 number with coverage problems, the inquiry probably winds up on a caseworker’s desk, said one affected caseworker. That employee received a reduction-in-force notice several days after losing access to their work computer on April 1.

Caseworkers usually don’t speak directly with consumers, the worker said. Using information sent over by the federal marketplace — including notes taken when consumers called in with problems, as well as ACA applications — they handle or oversee consumer requests, such as canceling a plan or adding a member.

One of the last problems handled by that caseworker involved a child born in November who was not added correctly to the family’s plan for 2024, meaning any care the child received during the last two months of the year was not covered and the family risked being stuck with the bills.

“This person did everything right, including calling the marketplace within 60 days to report the birth and add the newborn to their coverage,” said the worker, who was quickly able to resolve it because it was a marketplace error.

The worker, who is now soured on federal employment and will look for a new job in the private sector, said caseworkers handled an average of 30 issues a day, but that in recent months the number kept climbing, heading past 45, and grew even more intense after the Feb. 14 dismissal of probationary employees.

“It’s not an easy job,” the worker said, noting the challenge of constantly evolving rules and policies governing health plans.

Ferreting Out Fraud

In the past year, caseworkers have dealt with cases involving unauthorized enrollments or switching, a problem that ticked up in late 2023, according to KFF Health News investigations, and continued through much of last year, resulting in at least 274,000 complaints to CMS through August. The complaints centered on practices by rogue brokers who enrolled or switched coverage for consumers without their express knowledge. That could leave them without access to their health provider networks or drug coverage, or even facing a tax bill.

Though it is unclear how many such complaints fell to a federal caseworker, some improperly switched consumers want to be restored into plans they had originally chosen, while others want them canceled.

“I have seen people who were enrolled and every two or three months a broker would switch them to a different plan,” said the caseworker who was locked out in early April. “The more health plans they were enrolled in, the more difficult it was to handle on the back end.”

New hires spend months learning the ropes.

The New York-based worker let go in February during her probationary period said she had joined CMS in October and spent three months in training. Just about a month after completing that training, she was let go — a bitter irony, she said, because she had sought stability in a job with the federal government, having experienced a layoff during her private-sector career.

“I took a huge pay cut — over $40,000 — when I went from the private sector into the government,” said the mother of three whose husband serves in the military. Her federal salary was about $76,000, which is not high for an expensive market like the New York metropolitan area. “But I took it as an opportunity to get in the door and move up. Then, boom, I get hit with another layoff.”

“I can only imagine how hard it is for people with 10 to 15 years with the government who are banking on it for retirement,” she said.

Starting next year, the Trump administration has proposed several changes to the ACA, including ending year-round eligibility for very low-income applicants, requiring additional financial and eligibility documentation, and charging some people a monthly $5 fee when auto-reenrolled in coverage until they confirm their eligibility.

Such changes will “make things harder, so there you will have more things that go wrong,” said Grant, the former CMS official, who founded Schedule F Healthcare Strategies after leaving CMS. “You will then also have fewer caseworkers to handle the work.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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SACRAMENTO, Calif. — California has halted a court-ordered medical parole program, opting instead to send its most incapacitated prisoners back to state lockups or release them early.

The unilateral termination is drawing protests from attorneys representing prisoners and the author of the state’s medical parole legislation, who say it unnecessarily puts this vulnerable population at risk. The move is the latest wrinkle in a long-running drive to free those deemed so ill that they are no longer a danger to society.

“We have concerns that they cannot meet the needs of the population for things like memory care, dementia, traumatic brain injury,” said Sara Norman, an attorney who represents the prisoners as part of a nearly three-decade-old federal class-action lawsuit. “These are not people who are in full command and control of their own surroundings, their memories — they’re helpless.”

Caring for a rapidly aging prison population is a growing problem across the United States. It is twice as expensive to imprison older people than those younger, according to Johns Hopkins University researchers, and prisoners 55 and older are more than twice as likely to have cognitive difficulties as non-incarcerated older adults.

Medical parole is reserved for the sliver of California’s 90,000 prisoners who have a “significant and permanent condition” that leaves them “physically or cognitively debilitated or incapacitated” to the point they can’t care for themselves, according to the state parole board. Prisoners who qualify — excluded are those sentenced to death or life without parole — can be placed in a community health care facility instead of state prison.

Attorneys said the roughly 20 parolees the state has returned to lockup need significant help performing basic functions of daily life, with some in wheelchairs or suffering from debilitating mental or physical disabilities. They say outside facilities have the capacity to provide more compassionate and humane care to very ill prisoners.

Kyle Buis, a California Correctional Health Care Services spokesperson, characterized the program as “on pause” as patients return to in-prison facilities and as officials anticipate increasing their use of the compassionate release program. Prisoners granted compassionate release have their sentences reduced and are released into society, while those on medical parole remain technically in custody.

“There were multiple considerations that went into this decision,” Buis said. “Our growing ability to support those with cognitive impairment inside of our facilities was one factor.” Democratic Gov. Gavin Newsom also cited “eliminating non-essential activities and contracts” to save money.

While nearly every state now has a medical parole law, they are rarely used, according to the National Conference of State Legislatures. One common reason is eligibility. Texas, for instance, screened more than 2,600 prisoners in 2022 but approved just 58 people. Officials also often face procedural hurdles, according to the Vera Institute of Justice, a national nonprofit research and advocacy group.

Some states, however, have tried to expand medical parole programs. Michigan did so because an earlier version of the law proved too difficult to use, resulting in the release of just one person. New York has some of the nation’s broadest criteria for release but is among states struggling to find nursing home placements for parolees.

California’s first effort to free prisoners deemed so incapacitated that they are no longer dangerous began in 1997 with a little-used process that allowed corrections officials to seek the release of dying prisoners. But that program resulted in the release of just two prisoners in 2009. The medical parole program was officially created by a state law that took effect in 2011 and was expanded in 2014 to help reduce prison crowding so severe that federal judges ruled it was harming prisoners’ physical and mental health.

Nearly 300 prisoners had been granted medical parole since July 2014, state officials reported. The average annual cost per medical parolee was between about $250,000 and $300,000 in 2023, Buis said. And despite lawmakers’ expectations when they started the program, he said, Medi-Cal — California’s Medicaid program, which is partly funded by the federal government — did not reimburse the state for their care because they were still considered incarcerated.

California has had a rollercoaster relationship with its sole nursing home contractor for medical parolees. The state ended its contract with Golden Legacy Care Center in Sylmar at the end of 2024, Newsom reported in January in his summary of the state’s 2025-26 budget.

In 2021, prison officials said they were sending dozens of paralyzed and otherwise disabled prisoners back to state prisons and limiting medical parole, blaming a federal rule change that barred any restrictions on prisoners in such facilities. The move came after state public health inspectors fined Golden Legacy for handcuffing an incapacitated patient’s ankle to the bed in violation of state and federal laws.

Golden Legacy did not return repeated telephone and email requests for comment. Buis said state officials “continuously monitored care at Golden Legacy, and we never had concern for the quality of care provided.”

Attorney Rana Anabtawi, who also represents prisoners in the class-action suit, toured Golden Legacy’s medical parole building with Norman in November and saw caregivers offering memory care patients special art classes and a “happy feet” dance party.

She felt it “was a much better place for our patients than being in prison — there appeared to be regular programming aimed at engaging them, there were no officers walking around, the patient doors were open and unlocked, patients had general freedom of movement within their building.”

Over the past several years, the California Department of Corrections and Rehabilitation has built up its capacity to service those with severely compromised health. The state created two of its own memory care units in men’s prisons, a 30-bed unit in the California Health Care Facility in Stockton in 2019 and a 35-bed unit in the California Medical Facility in Vacaville in 2023. The Central California Women’s Facility in Chowchilla provides up to 24-hour skilled nursing care for women with life-limiting illnesses including dementia.

Yet Norman fears the in-prison facilities are a poor substitute.

“They’re nowhere near enough and they are inside prisons, so there’s a limit to how compassionate and humane they can be,” she said.

In addition to the 20 returned to state prisons when the contract expired, Buis said, one was paroled through the standard process, while 36 were recommended for compassionate release. Of those, 26 were granted compassionate release, eight were denied, and two died before they could be considered.

The use of compassionate release increased under a law passed in 2022 that eased the criteria, including by adding dementia patients. Last year, 87 prisoners received compassionate release. By contrast, during the six years before the new law, just 53 were freed. Officials expect about 100 prisoners each year will qualify for compassionate release, Buis said.

Compassionate release would allow them to “sort of die with dignity,” said Daniel Landsman, vice president of policy for the criminal justice advocacy group FAMM, previously known as Families Against Mandatory Minimums, and ensure “that the California prison system is not turning into a de facto hospice or skilled nursing facility.”

Mark Leno, who authored California’s medical parole law when he was a Democratic state senator, criticized prison officials for ending their use of the law without legislative approval and instead just terminating the Golden Legacy contract. He also railed against returning very ill patients to prisons, a decision he called “perfectly inhumane.”

“Is it just cruel punishment and retribution or is this thoughtful execution of the law put in place by the legislature?” he said.

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

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

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The assisted living facility in Edina, Minnesota, where Jean Peters and her siblings moved their mother in 2011, looked lovely. “But then you start uncovering things,” Peters said.

Her mother, Jackie Hourigan, widowed and developing memory problems at 82, too often was still in bed when her children came to see her midmorning.

“She wasn’t being toileted, so her pants would be soaked,” said Peters, 69, a retired nurse-practitioner in Bloomington, Minnesota. “They didn’t give her water. They didn’t get her up for meals.” Her mother dwindled to 94 pounds.

Most ominously, Peters said, “we noticed bruises on her arm that we couldn’t account for.” Complaints to administrators — in person, by phone, and by email — brought “tons of excuses.”

So Peters bought an inexpensive camera at Best Buy. She and her sisters installed it atop the refrigerator in her mother’s apartment, worrying that the facility might evict her if the staff noticed it.

Monitoring from an app on their phones, the family saw Hourigan going hours without being changed. They saw and heard an aide loudly berating her and handling her roughly as she helped her dress.

They watched as another aide awakened her for breakfast and left the room even though Hourigan was unable to open the heavy apartment door and go to the dining room. “It was traumatic to learn that we were right,” Peters said.

After filing a police report and a lawsuit, and after her mother’s 2014 death, Peters in 2016 helped found Elder Voice Advocates, which lobbied for a state law permitting cameras in residents’ rooms in nursing homes and assisted living facilities. Minnesota passed it in 2019.

Though they remain a contentious subject, cameras in care facilities are gaining ground. By 2020, eight states had joined Minnesota in enacting laws allowing them, according to the National Consumer Voice for Quality Long-Term Care: Illinois, Kansas, Louisiana, Missouri, New Mexico, Oklahoma, Texas, and Washington.

The legislative pace has picked up since, with nine more states enacting laws: Connecticut, North Dakota, South Dakota, Nevada, Ohio, Rhode Island, Utah, Virginia, and Wyoming. Legislation is pending in several others.

California and Maryland have adopted guidelines, not laws. The state governments in New Jersey and Wisconsin will lend cameras to families concerned about loved ones’ safety.

But bills have also gone down to defeat, most recently in Arizona. For the second year, a camera bill passed the House of Representatives overwhelmingly but, in March, failed to get a floor vote in the state Senate.

“My temperature is a little high right now,” said state Rep. Quang Nguyen, a Republican who is the bill’s primary sponsor and plans to reintroduce it. He blamed opposition from industry groups, which in Arizona included LeadingAge, which represents nonprofit aging services providers, for the bill’s failure to pass.

The American Health Care Association, whose members are mostly for-profit long-term care providers, doesn’t take a national position on cameras. But its local affiliate also opposed the bill.

“These people voting no should be called out in public and told, ‘You don’t care about the elderly population,’” Nguyen said.

A few camera laws cover only nursing homes, but the majority include assisted living facilities. Most mandate that the resident (and roommates, if any) provide written consent. Some call for signs alerting staffers and visitors that their interactions may be recorded.

The laws often prohibit tampering with cameras or retaliating against residents who use them, and include “some talk about who has access to the footage and whether it can be used in litigation,” added Lori Smetanka, executive director of the National Consumer Voice.

It’s unclear how seriously facilities take these laws. Several relatives interviewed for this article reported that administrators told them cameras weren’t permitted, then never mentioned the issue again. Cameras placed in the room remained.

Why the legislative surge? During the covid-19 pandemic, families were locked out of facilities for months, Smetanka pointed out. “People want eyes on their loved ones.”

Changes in technology probably also contributed, as Americans became more familiar and comfortable with video chatting and virtual assistants. Cameras have become nearly ubiquitous — in public spaces, in workplaces, in police cars and on officers’ uniforms, in people’s pockets.

Initially, the push for cameras reflected fears about loved ones’ safety. Kari Shaw’s family, for instance, had already been victimized by a trusted home care nurse who stole her mother’s prescribed pain medications.

So when Shaw, who lives in San Diego, and her sisters moved their mother into assisted living in Maple Grove, Minnesota, they immediately installed a motion-activated camera in her apartment.

Their mother, 91, has severe physical disabilities and uses a wheelchair. “Why wait for something to happen?” Shaw said.

In particular, “people with dementia are at high risk,” added Eilon Caspi, a gerontologist and researcher of elder mistreatment. “And they may not be capable of reporting incidents or recalling details.”

More recently, however, families are using cameras simply to stay in touch.

Anne Swardson, who lives in Virginia and in France, uses an Echo Show, an Alexa-enabled device by Amazon, for video visits with her mother, 96, in memory care in Fort Collins, Colorado. “She’s incapable of touching any buttons, but this screen just comes on,” Swardson said.

Art Siegel and his brothers were struggling to talk to their mother, who, at 101, is in assisted living in Florida; her portable phone frequently died because she forgot to charge it. “It was worrying,” said Siegel, who lives in San Francisco and had to call the facility and ask the staff to check on her.

Now, with an old-fashioned phone installed next to her favorite chair and a camera trained on the chair, they know when she’s available to talk.

As the debate over cameras continues, a central question remains unanswered: Do they bolster the quality of care? “There’s zero research cited to back up these bills,” said Clara Berridge, a gerontologist at the University of Washington who studies technology in elder care.

“Do cameras actually deter abuse and neglect? Does it cause a facility to change its policies or improve?”

Both camera opponents and supporters cite concerns about residents’ privacy and dignity in a setting where they are being helped to wash, dress, and use the bathroom.

“Consider, too, the importance of ensuring privacy during visits related to spiritual, legal, financial, or other personal issues,” Lisa Sanders, a spokesperson for LeadingAge, said in a statement.

Though cameras can be turned off, it’s probably impractical to expect residents or a stretched-thin staff to do so.

Moreover, surveillance can treat those staff members as “suspects who have to be deterred from bad behavior,” Berridge said. She has seen facilities installing cameras in all residents’ rooms: “Everyone is living under surveillance. Is that what we want for our elders and our future selves?”

Ultimately, experts said, even when cameras detect problems, they can’t substitute for improved care that would prevent them — an effort that will require engagement from families, better staffing, training and monitoring by facilities, and more active federal and state oversight.

“I think of cameras as a symptom, not a solution,” Berridge said. “It’s a band-aid that can distract from the harder problem of how we provide quality long-term care.”

The New Old Age is produced through a partnership with The New York Times.

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

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PBS News Weekend’s Ali Rogin spoke with KFF Health News contributor Michelle Andrews about what some people with missing limbs consider a disparity in health insurance coverage: Though a knee replacement likely would be covered, a prosthetic knee isn’t always. A prosthetic device can be subject to cost caps and an amputee may be required to prove medical necessity for coverage. Andrews recently explored these issues in her article “Health Insurers Limit Coverage of Prosthetic Limbs, Questioning Their Medical Necessity.”

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

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Even by rural hospital standards, Keokuk County Hospital and Clinics in southeastern Iowa is small.

The 14-bed hospital, in Sigourney, doesn’t do surgeries or deliver babies. The small 24-hour emergency room is overseen by two full-time doctors.

CEO Matt Ives wants to hire a third doctor, but he said finding physicians for a rural area has been challenging since the covid-19 pandemic. He said several physicians at his hospital have retired since the start of the pandemic, and others have decided to stop practicing certain types of care, particularly emergency care.

Another rural hospital is down the road, about a 40-minute drive east. Washington County Hospital and Clinics has 22 beds and is experiencing similar staffing struggles. “Over the course of the last few years, we’ve had not only the pandemic, but we’ve had kind of an aging physician workforce that has been retiring,” said Todd Patterson, CEO.

The pandemic was difficult for health workers. Many endured long hours, and the stresses on the nation’s health care system prompted more workers than usual to quit or retire.

“There’s a chunk of workers that were lost and won’t come back,” said Joanne Spetz, who directs the Institute for Health Policy Studies at the University of California-San Francisco. “For a lot of the clinicians that decided and were able to stick it out and work through the pandemic, they have burned out,” Spetz said.

Five years after the World Health Organization declared covid a global pandemic and the first Trump administration announced a national emergency, the United States faces a crucial shortage of medical providers, below the projected need for an aging population.

That could have lasting effects on care, particularly in states like Iowa with significant rural populations. Experts say the problem has been building for a while, but the effects of the pandemic accelerated the shortages by pushing many doctors over the edge into early retirement or other fields.

“Some of them made it through covid like ‘Let’s get us through this public health crisis,’ and then they came out of it saying, ‘OK, and now? Now I’m exhausted,’” said Christina Taylor, president of the Iowa Medical Society.

“Iowa is absolutely in the middle of a physician shortage,” Taylor said. “It’s a true crisis for us. We’re actually 44th in the country in terms of patient-to-physician ratio.”

A 2022 survey by the Centers for Disease Control and Prevention found a significant jump in health workers who reported feeling burned out and wanting a new job, compared with 2018. The number of people in health care has grown since the start of the pandemic, said Janette Dill, an associate professor at the University of Minnesota’s School of Public Health, but the growth has not happened fast enough.

“We have an aging population. We have a lot of needs,” she said.

The Association of American Medical Colleges projected last year that the U.S. faces a shortage of up to 86,000 physicians by 2036 — if lawmakers don’t invest more money in training doctors.

These shortages could push more people to seek care in ERs when they can’t see a local doctor, said Michael Dill, director of workforce studies at the AAMC.

“We’re already at a point where tens of millions of Americans every year can’t get medical care when they need it,” said Dill (no relation to Janette Dill). “If the shortage is sustained or gets even worse, then that problem gets worse too, and it disproportionately negatively impacts the most vulnerable amongst us.”

Iowa lawmakers made addressing the shortage a priority in the current legislative session. They introduced bills aimed at increasing medical student loan forgiveness and requesting federal help to add residency training slots for medical students in the state.

Last year, Gov. Kim Reynolds signed a bill into law that drops the residency requirement for some doctors who trained abroad to get a medical license. Lawmakers in at least eight other states have approved similar changes.

Patterson, of the Washington County hospital, appreciates that Iowa lawmakers are trying to increase the pipeline of doctors into Iowa but said it doesn’t address immediate shortages.

“You have a high school student who’s graduating right now; they’re probably nine to 11 years away from entering the workforce as a practicing physician. So it’s a long-term kind of problem,” he said.

For nurses, workforce experts say, the projected national outlook isn’t as dire as in recent years.

“Nursing education is back up. Nursing employment rates are back up. I think, for that workforce, we’ve largely nationally recovered from all the dislocations that occurred,” said Spetz, of the Institute for Health Policy Studies.

But getting nurses to move to the places that need them, like rural communities, will be difficult, she said.

Some rural hospitals in Iowa say an even bigger challenge right now is finding nurses to hire.

Some of that can be traced to the pandemic, said Sara Bruns, nurse manager at Keokuk County Hospital and Clinics. She recalled that some covid patients in critical condition died when they couldn’t be transferred to larger hospitals with more advanced intensive care unit equipment, because those hospitals didn’t have the staff to take on more patients.

“We had to make the horrible decision of ‘You’re probably not going to make it,’” Bruns recalled, saying many patients were then listed as DNR, for “do not resuscitate.”

“That took a big toll on a lot of nurses,” she said.

Another problem is persuading the area’s young nurses to stay, when they would rather live and work in more urban areas, Bruns said.

Her hospital still relies on contracts with travel nurses to fill some night shifts. That’s something the hospital never had to do before the pandemic, Bruns said. Travel nurses are more expensive, adding stress to a small hospital’s budget.

“I think some people just completely got out of nursing,” Bruns said. The pandemic took a special toll “because of the hours that they had to work, the conditions that they had to work.”

Policymakers and health care organizations can’t focus only on recruiting workers, according to Janette Dill at the University of Minnesota. “You also have to retain workers,” she said. “You can’t just recruit new people and then have them be miserable.”

Dill said workers report feeling that patients have been more disrespectful and challenging since the pandemic, and sometimes workers feel unsafe at work. “By ‘unsafe’ I mean physically unsafe. I think that is a very stressful part of the job,” she said.

Research has shown health workers reporting higher levels of burnout and poor mental health since the pandemic — though the risks decreased if workers felt supported by their managers.

Gail Grimes, an intensive care nurse in Des Moines, felt more supported by her employer during the worst parts of the pandemic than she does now, she said. Some hospitals offered pay bumps and more scheduling flexibility to keep nurses on staff.

“We were getting better bonus pay,” Grimes recalled. “We were getting these specialized contracts we could fulfill that were often more worth our time to be able to come in, to miss our families and be there.”

Grimes said she’s seen nurses leave Iowa for neighboring states with better average pay. This creates shortages that she believes affect the care she gives her own patients.

“A nurse taking care of five patients will always be able to provide better care than a nurse taking care of 10 patients,” she said.

She thinks many hospitals have simply accepted staff burnout as a fact, rather than try to prevent it.

“It really is significantly impactful to your mental health when you come home every day and you feel guilty about the things you have not been able to provide to people,” she said.

This article is from a partnership that includes IPR, NPR, and KFF Health News.

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

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HHS OCR settlement with Guam Memorial Hospital Authority to address potential HIPAA Security Rule violation.

The Host Emmarie Huetteman KFF Health News Emmarie Huetteman, senior editor, oversees a team of Washington reporters, as well as “Bill of the Month” and KFF Health News’ “What the Health?” She previously spent more than a decade reporting on the federal government, most recently covering surprise medical bills, drug pricing reform, and other health policy debates in Washington and on the campaign trail. 

The secretary of Health and Human Services, Robert F. Kennedy Jr., contradicted his agency’s researchers this week with unsubstantiated or outright false claims about autism spectrum disorder and those with the condition. His public remarks were not the only recent example of Kennedy speaking against his employees; during an introductory appearance at the FDA, Kennedy said the staff — reeling from the layoffs of 3,500 colleagues — had become beholden to the industries they regulate.

Meanwhile, President Donald Trump issued an executive order aimed at lowering drug prices as his administration signaled that tariffs on pharmaceuticals and pharmaceutical ingredients could be on deck. And new data shows that the number of abortions performed nationwide increased slightly last year, as travel and telehealth prescribing maintained access for some patients in states with abortion bans.

This week’s panelists are Emmarie Huetteman of KFF Health News, Anna Edney of Bloomberg News, Jessie Hellmann of CQ Roll Call, and Shefali Luthra of The 19th.

Panelists Anna Edney Bloomberg News @annaedney @annaedney.bsky.social Read Anna's stories. Jessie Hellmann CQ Roll Call @jessiehellmann @jessiehellmann.bsky.social Read Jessie's stories. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories.

Among the takeaways from this week’s episode:

• Kennedy’s claim that genetics do not play a role in the development of autism contradicts decades of scientific inquiry into the disorder — including the work of his agency’s own researchers, at the Centers for Disease Control and Prevention, who say there is indeed a genetic component to autism. Further, his striking remarks about the severe limitations of those with the disorder do not reflect reality for the many people living with autism.
• Trump’s executive order to lower drug prices calls for changes to the Medicare drug negotiation program that could instead increase costs for the federal government. It also calls for the FDA to make it easier for states to import drugs from other countries, including Canada — but, among other things, the introduction of tariffs on drugs and drug ingredients could negate other efforts to lower prices.
• And the picture of federal health cuts is still coming into focus, as people throughout the health care system grapple with the effects of slashing government efforts to do things like help Americans afford utility bills, monitor the spread of hepatitis, and much — much — more.

Also this week, Julie Rovner of KFF Health News interviews Krista Harrison and Robbie Zimbroff, health policy researchers at the University of California-San Francisco. They share some background on a case before the Supreme Court next week, Kennedy v. Braidwood Management, which challenges the ability of the U.S. Preventive Services Task Force to make expert recommendations for American health.

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

Emmarie Huetteman: KFF Health News’ “States Push Medicaid Work Rules, but Few Programs Help Enrollees Find Jobs,” by Sam Whitehead, Phil Galewitz, and Katheryn Houghton.

Anna Edney: ProPublica’s “Unsanitary Practices Persist at Baby Formula Factory Whose Shutdown Led to Mass Shortages, Workers Say,” by Heather Vogell.

Jessie Hellmann: The Hill’s “Military’s Use of Toxic ‘Forever Chemicals’ Leaves Lasting Scars,” by Sharon Udasin and Rachel Frazin.

Shefali Luthra: The 19th’s “Trump’s Push for ‘Beautiful Clean Coal’ Could Lead to More Premature Births,” by Jessica Kutz.

Also mentioned in this week’s podcast:

• KFF Health News’ “Trump HHS Eliminates Office That Sets Poverty Levels Tied to Benefits for at Least 80 Million People,” by Arthur Allen.
• Wired’s “HHS Systems Are in Danger of Collapsing, Workers Say,” by David Gilbert.
• Wired’s “Elon Musk’s DOGE Is Getting Audited,” by Leah Feiger and Tim Marchman.

Click to open the transcrippt Transcript: On Autism, It’s the Secretary’s Word vs. the CDC’s

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

Emmarie Huetteman: Hello, and welcome back to “What the Health?” I’m Emmarie Huetteman, a senior editor for KFF Health News filling in this week for Julie Rovner. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, April 17, at 10 a.m. As always, and I know I don’t have to remind you, news happens fast and things might’ve changed by the time you hear this. So, here we go. 

Today we’re joined via video conference by Shefali Luthra of The 19th. 

Shefali Luthra: Hello. 

Huetteman: Jessie Hellmann of CQ Roll Call. 

Jessie Hellmann: Hi there. 

Huetteman: And Anna Edney of Bloomberg News. 

Anna Edney: Hi. 

Huetteman: Later in this episode we’ll have Julie’s interview with two health policy researchers at the University of California-San Francisco, Krista Harrison and Robbie Zimbroff. They will share some background on an important Supreme Court case being argued next week. That case challenges the ability of the U.S. Preventive Services task force to make expert recommendations for American health. 

But first, this week’s news. The secretary of Health and Human Services roiled the health community on Wednesday by claiming, without evidence, that autism is preventable. He also directly contradicted his own agency’s research on the causes of autism. Secretary Robert F. Kennedy Jr.’s comments came during a press conference about a new CDC [Centers for Disease Control and Prevention] report. That report showed that the percentage of American children estimated to have autism spectrum disorder continued to rise in 2022. CDC researchers found that the rate among 8-year-olds was 1 in 31. That’s nearly five times as high as the rate in 2000 when the CDC started keeping track. The report attributed some of the increase to more screening, but on Wednesday, Kennedy repeatedly dismissed that finding from his own agency’s researchers. Kennedy also chastised what he called “epidemic deniers” for focusing on possible genetic causes of autism. That’s despite the fact that scientists have known for decades that genetics are at least a contributing factor. Jessie, you were at Kennedy’s press conference. What else did he say, and did he discuss how HHS plans to respond to the rise in autism rates? 

Hellmann: He said they’re going to be announcing a series of studies within the next few weeks looking at dozens of what he says are potential environmental contributors to autism. He specifically mentioned mold, pesticides, foods, medicines. He didn’t specifically mention vaccines, and reporters did not get a ton of time to ask questions about that, but he kind of just made this argument that scientists have been censored or stifled in their efforts to find the true causes of autism. And, like you said, he downplayed what many scientists say, which is that they think it’s predominantly genetics. Maybe some environmental exposures can play a role here, but he seemed to argue that a big part of it is environmental toxins, and once they find out what that is, they’re going to eliminate it, and that’s going to solve the problem. 

Huetteman: Now that seems to be getting quite ahead of the notion of trying to do more research to find out the causes of autism, right? He’s kind of saying, We’re dismissing this notion and we’re only going to focus on environmental toxins. Is that right? 

Hellmann: Yeah. He also mentioned some other things, like parental age. He mentioned ultrasounds. He mentioned a whole litany of things, but, yeah, he literally said that looking at genetics is a dead end in terms of finding the causes of autism, which is something that many scientists disagree with. And he reiterated a promise he made last week that there would be answers by September, which is a timeline many scientists questioned and Kennedy hasn’t really explained. People have been looking at this for decades, and it’s been really slow work trying to find answers. So such an expedited timeline has raised a lot of questions too, and makes people worry that he kind of already has a predetermined conclusion. 

Huetteman: Actually, can anyone remind us why is it problematic to claim that autism is preventable? One of the kind of headline claims that he made at this press conference. 

Edney: Well, I feel like that puts the blame on either the mother or the child for something that no one has said is anyone’s fault, except maybe RFK Jr. It doesn’t help with treatment when you think that you can just not live near, I don’t know, an asbestos mine. I have no idea what the idea would be, but it puts the onus on the people who are suffering the most, when clearly what’s needed is more resources for people with autism for their families to access, which are also things that it seems that this administration has been trying to take away. 

Luthra: And if I can add one more point, Emmarie, I do think it’s worth flagging the extent to which RFK Jr.’s remarks suggest he doesn’t really understand what autism looks like in reality and in terms of how people with autism live in the world, which is very often quite normally as very high-functioning, productive members of society. He sort of used this language saying, Oh, if you have autism, you’ll never play baseball. You’ll never pay taxes. You’ll never go on a date. And that is just simply not true. Many people have autism and go on dates and get married and have children or pay taxes or play baseball, and I think it’s important for us to recognize that when he’s talking about this thing that he says is an epidemic with real public health harm and societal harm and is at the same time completely mischaracterizing what it actually looks like. 

Huetteman: That is such a great point. Thanks for adding that, Shefali. Well, Wednesday’s press conference is not the only recent example of Kennedy speaking out against his own employees. Last week, Kennedy visited the FDA to introduce himself to staff, not by laying out his vision for the future, but instead by talking about their alleged failings. In his remarks, Kennedy accused FDA employees of becoming a sock puppet of the industries they regulate and asserted that the “deep state” is real. 

That did not sit well with many staffers at the FDA who are reeling from the layoff of 3,500 of their colleagues in recent weeks. Several reportedly walked out while Kennedy was talking. And, well, the backlash is growing. Also last week, the American Public Health Association issued an extraordinary statement calling for Kennedy to resign. The statement cited Kennedy’s “implicit and explicit bias and complete disregard for science.” The American Public Health Association is the oldest and the largest association of public health officials in the world. In its 150-year history, the group has never called for the resignation of a health secretary. Is there any indication that the Trump administration is responding to the health community’s concerns about their actions so far? 

Edney: Not that I’ve seen. I know the APHA is a long-standing, very well-respected group. I don’t think that matters, unfortunately, in the case of speaking up for science right now. And maybe Jessie and Shefali, you’ve heard something different, but I certainly don’t think that President Trump is that concerned with what RFK Jr. is doing for the most part and seems to agree at least implicitly with the things he’s said. I mean, Trump himself has talked about a “deep state,” so I don’t think that anyone saying there’s this exodus of people, that’s a problem. I think it’s what they wanted. 

Luthra: And to add to that, Anna, I mean one thing that I think is really relevant when we think about how the president approaches health policy is that he’s never shown much interest in it. Even in his first presidency, it was largely outsourced to people who came from Mike Pence’s orbit and to members of Congress and everything that they pushed on health policy he signed off on but didn’t really spend a lot of time advocating for or pushing himself. And so I think with that in mind, it’s hard to imagine that the backlash to RFK Jr. from the health community would really resonate that much when this is never a community that’s really held much sway in his orbit. 

Huetteman: Absolutely. It seems like from the outside that Robert Kennedy is getting a lot of space to do what he’d like when it comes to health care, at least in terms of the policy changes that HHS is undergoing while Trump is taking, let’s say, more of a hands-off approach, at least from what we can look at. Although speaking of, Donald Trump has expressed some particular concern about certain health care issues the past, and one of them came up this week. As Americans weigh the day-to-day consequences of trade wars and isolationist policies, President Donald Trump revived a top pocketbook issue this week: He put out an executive order aimed at lowering drug prices. Now Trump’s order in part calls for changes to the Medicare drug negotiation program, but the changes could actually increase drug costs for the federal government by further delaying the program, which it’s worth noting is something that drugmakers have been pushing for.  

Trump’s order also directs the FDA to make it easier for states to gain approval to import drugs from other countries, including Canada. But Canada has been reticent to export drugs to the U.S. And, well, that’s before the recent cross-border tensions over tariffs and territory, of course. And there’s another complication. It also came out this week that the secretary of Commerce is investigating the national security effects of importing pharmaceuticals and pharmaceutical ingredients, suggesting that tariffs on drugs could be just around the corner. Anna, what would this executive order do to lower drug prices? 

Edney: I’m not completely sure because I felt like a lot of it was déjà vu. A lot of it was recycled ideas from the first Trump administration. We know … particularly you laid out some of the issues with importing drugs from Canada, and we know particularly that Florida tried to do this when rules were loosened previously, and they have in place the ability now but aren’t doing it. I mean, it’s just not a viable option for people. Canada doesn’t really want it, and then now we know if these tariffs are coming up, they could cost more to get them from Canada. So I don’t understand really the thinking here. It seems not unusual, to be honest, for the administration to kind of be working against itself in different ways. And for the one new thing, I mean, there were changes that the pharmaceutical industry has been asking for a while to the IRA, which would kind of … 

Huetteman: The Inflation Reduction Act. 

Edney: … yeah, with Medicare negotiation, they basically want to fix this pill loophole, that they call it, or this problem with the fact that pills are subject to this faster than biologic drugs, drugs that are kind of more complex. And so, if Trump does take that up, which he seems he’s kind of directed Congress to do something about it, then that would be something that would cost the government money. So I don’t know that that’s even anything Congress is that interested in doing at the moment because they would have to find the “pay-for.” 

Huetteman: That’s a great point. And right now they’re preoccupied with looking at ways to pay for other things, right? 

Luthra: Yeah, definitely. 

Huetteman: Tax cuts and border security, in particular, as the budget reconciliation process continues. Actually, and I think it’s really notable that we learned in the same week, that the federal government is exploring tariffs on pharmaceuticals. Could tariffs undermine these efforts to lower drug prices? 

Edney: Certainly. There are many parts of our medications, particularly active ingredients or even finished pills, particularly generics that we get from other countries. India is a very big one that’s involved in this. We even do get a lot of them and brand-name drugs from Europe. So there is concern that with tariffs, pretty much any drug is going to be touched in some way and potentially significantly enough to impose a tariff on it. So the drug companies will have to figure out, are we going to eat those increases and reduce our research and development, or are we going to raise prices even more in the country that pays the most for our drugs? 

Huetteman: There’s some theories that this could lead to even drug shortages. Is that right? 

Edney: Yeah, I think that’s absolutely possible because there will be companies and generics, this happens all the time already, that decide this isn’t worth it for us. The profit margin is just so, so low, and if it gets hit even more, then they’ll step out. And there are many generics that are so old and so unprofitable, or not unprofitable, that just they don’t make much at all. That if one thing disrupts, then we saw this with cancer drugs recently, there’s a shortage and people have to scramble to try to find it. 

Huetteman: Yeah, absolutely. We’ll be keeping an eye on that, among other things. And well, it’s been a couple of weeks since layoffs began at HHS, but the picture is still coming into focus. Continuing our coverage, here’s a very incomplete list of notable staffing cuts that have come to light. In a major blow, NIH [the National Institutes of Health] is preparing to lose the majority of its staff who work on contracts. The Trump administration laid off the entire staff of the Low-Income Home Energy Assistance Program. That program helps about 6.2 million people pay their utility bills. Also cut the entire CDC labs studying hepatitis, all full-time CDC employees who inspect cruise ships. And, by the way, fees are paid by cruise ship operators to cover those jobs, not tax dollars. 

Also cut the entire HHS office that sets poverty levels to determine who is eligible for government benefits including Medicaid. That last scoop came from my KFF Health News colleague, Arthur Allen. One laid-off employee told Arthur about the cuts: “It was random, as far as we can tell.” Meanwhile, Wired reports that cuts to staff at HHS are endangering the technological and cybersecurity infrastructure underpinning the entire health system. Is there a common thread here? Are there ways to summarize what’s been cut and why? 

Edney: I don’t know if there’s really a great way to summarize it. I think a lot of them are, what you just mentioned with the Wired story, are kind of people who create the scaffolding to hold HHS up essentially, who do IT security, who order supplies, who make sure that inspectors can safely get to their locations and have what they need. It’s people like that who seem to have just been completely decimated. And then you do have the bucket of anything that seems to indicate diversity, equity, inclusion, which we know is something that this administration does not agree with. And we have seen a lot of top people step down on their own as well, leadership disagreeing with what ways the administration has talked about different things. So I think there are at least some buckets, but it does seem pretty random, I’m sure, to a lot of the workers. But if you do even look at the people who calculate the poverty levels, that kind of goes towards the diversity, equity, inclusion, maybe lump kind of low-income in there where those are the things that they’d like to get rid of. 

Hellmann: And there have been people that has been “RIF’ed,” or received a reduction in force, and then have been asked to come back and help wind down an office, which I feel like shows that there might not have been a lot of thinking about some of these positions that they’re eliminating and how it could affect the agencies. And there’s already been a lot of stories about how things are getting really bogged down at the FDA and drug approvals are getting delayed and companies are having to delay clinical trials because they’re just not getting a lot of communication from the people that work there. And in some cases they may not work there anymore. 

Huetteman: That’s true. There was reporting out this week too, or who can even tell which week it was, that talked about how the FDA was bringing back laid-off employees or hiring contractors to cover food and drug safety that they had kind of not thought all the way through before they let go those workers. It’s just a lot of confusion, I think it’s a good way to sum it up. And Julie and I talk a lot about ways to describe this that aren’t just using the word “chaos,” but it’s true. There’s a lot of people around Washington who just have no sense of what’s going on and then the ripples out into the rest of the country and the health system from people who are trying to decide how to plan for their businesses, how to plan for their health clinic, how to order supplies. It’s an incredible sense of upheaval, I can say, in the way that it looks from here.  

All right, there’s much more to be learned, and if you’re a fan of sunshine, I do have some good news. Wired reports that the government accountability office is collecting information from Elon Musk’s DOGE effort about their work with Americans’ private data, including at HHS. That report is expected to be released this spring. In abortion news, the Guttmacher Institute is out this week with new data, which shows that the number of abortions in the United States increased slightly last year. For the second year in a row, there were more than 1 million abortions performed nationally. Shefali, what does this data tell us, and what are we seeing in states with abortion bans compared to those without? 

Luthra: I think what this shows us is that in the almost three years since Roe v. Wade was overturned, we settled into this deeply unequal state around the country in which in some states it is much easier to get abortions and others very difficult. And at the same time, people are really turning to immense workarounds to continue accessing abortion care. The data, if you look into it, shows the number of abortions really fell quite dramatically in a lot of states. For instance, Florida and South Carolina, states that enacted six-week abortion bans in the study period. And other places like Illinois, like Virginia, like New Mexico and Kansas, the number of abortions continues to go up. Virginia is interesting because it is now the only state in the South to allow abortions for much of pregnancy, and it is seeing a lot of people travel there from Florida, from South Carolina, Georgia, etc. 

I think what’s really important for us to also understand is how deeply fragile this whole ecosystem is. The Guttmacher data showed that 15% of people getting abortions are traveling out of state for that care. That is very expensive, often an inherently unplanned expense, and people are spending, in some cases, thousands of dollars to make this journey, sometimes even more. And the funds that have allowed them in many cases to pay for that travel are running out of resources and seeing declines in support even as need grows. 

Other people are accessing abortion through telehealth, getting medication mailed to them in their home states, using providers who are protected by their state shield laws. And those are also under threat — whether that comes from federal conversations on whether to change how those medications are prescribed and how they can legally be used, or bills in individual states where abortion opponents and anti-abortion lawmakers see that these workarounds are very effective and are trying to find ways to stop people from ordering medication into their state. 

I think the most important thing for us to understand right now is that people are going to immense means to get abortions. Some of them, and the data can’t fully paint this picture, are not able to do this so successfully. And there are real inequalities in terms of who can and who can’t. And even this status quo is so deeply fragile. I wouldn’t be surprised at all if it changes again or looks dramatically different in the next few years. 

Huetteman: Absolutely. Actually, to that end, I’m wondering what’s the significance of Guttmacher’s work now that the Trump administration is in place? How is that data collection going nationwide? 

Luthra: Frankly, work like this is going to be so crucial because we aren’t going to have a lot of places that will be tracking abortion or the impact of overturning Roe in a meaningful way. When we look at the HHS grants, the NIH grants that have been cut, some of that was in fact to research that would have followed people who tried to get abortions or were denied abortions and helped us illustrate the health consequences of that. So we don’t know if government-funded research will continue to help us better understand the impact of abortion bans. Organizations like Guttmacher, like the Society for Family Planning are really our only option at this point unless we see private donors step in and try and support researchers to make sure we keep getting information without which we could very well be in the dark while people’s health and economic well-being is dramatically affected. 

Huetteman: Well put. OK, that’s this week’s news. Now we’ll play Julie’s interview with UCSF researchers Krista Harrison and Robbie Zimbroff, and then we’ll come back and do our extra credits. 

Julie Rovner: I am so pleased to welcome to the podcast Krista Harrison and Robbie Zimbroff from the University of California-San Francisco, who have written about what could happen if the Supreme Court rules that the members of the U.S. Preventive Services Task Force were not constitutionally appointed and how that could impact what kind of preventive care will be covered by insurance without cost sharing. The Supreme Court is hearing the case Kennedy v. Braidwood on Monday, April 21. Drs. Harrison and Zimbroff, welcome to “What the Health?” 

Krista Harrison: Thank you so much for having us. 

Robbie Zimbroff: Thank you. 

Rovner: Let’s start by talking about what the USPSTF is and what it does. Robbie, you want to start off? 

Zimbroff: Sure. The USPSTF stands for the United States Preventive Services Task Force. It is an independent advisory board within the Department of Health and Human Services. They are volunteer physicians, experts in epidemiology, preventive care who make the best possible recommendations about which preventive services can help Americans live longer, healthier lives. 

Rovner: And they basically grade them like you do in school, right? 

Zimbroff: Yeah. So they make recommendations based on the quality of evidence and the magnitude of the net benefit of how much a preventive service might help a given individual. And they can either say, yes, that gets an A, that is strongly recommended by the USPSTF, a B, or an I, if it’s sort of not totally known yet, there’s not enough evidence to say We recommend this. Overall, there are over 90 USPSTF recommendations that span from pre and perinatal care all the way to cancer screenings and care of older adults. 

Rovner: And just to be clear, this task force has been around since the 1980s. This is not something that was created by the Affordable Care Act, right? They’ve been making these recommendations and people have been using these recommendations to decide what to cover, right? 

Zimbroff: Absolutely. 

Harrison: Absolutely. 

Rovner: So what is the issue now and here and what does it have to do with the Affordable Care Act? 

Harrison: So when the Affordable Care Act was being designed and enacted, their goal was to improve health and well-being for the most people possible by improving coverage. And of course, one of the things research has shown over time is that one of the best ways to do that is to reduce the amount that people have to pay to get preventive services. Because, of course, if you catch things before they become big problems, they’re often either cheaper or you just have people live in better health longer, which allows them to do more things and be in greater health. So when the Affordable Care Act got enacted, they said, Well, since we’re requiring all of this new coverage, we will use what is already out there, this existing task force, these existing recommendations. And if this independent task force says this is a high-quality recommendation, we will require all insurers who are participating, who are not grandfathered into a different echelon, to provide this care at no cost so that more people get preventive services. 

Rovner: Because we know that even small copays, even small requirements, can deter people. Right? 

Harrison: Exactly. That is what the research says. 

Zimbroff: The copays that deter many patients from seeking care that we know works and help people live longer is as low as $5; it’s not a copay that is $0 to $500 — $5, $10, under $100. There is data for every cut point of what price will deter people from being able to afford medication that can help keep them healthier. 

Rovner: And … going and taking time out of your day to go have a medical procedure is not always something people are really gung-ho to do. So who’s challenging it? 

Zimbroff: The challengers are a set of plaintiffs who actually are bringing a religious freedom claim against preventive services that are covered or recommended by the USPSTF and thus have a mandate to be covered by insurers and payers without any cost sharing. Those specific services initially spanned from ASIP, the committee that makes independent recommendations about vaccines for HPV vaccines, but also in this case it is strictly focused on the USPSTF’s recommendations about HIV preexposure prophylaxis, more commonly known as PrEP. The claim from the plaintiffs is that it is not in line with their religious beliefs to be providing these services and they should not be required to. The lawsuit is about whether the USPSTF is constitutionally structured as one argument against why they should not be mandated to provide this coverage to their employees. 

Rovner: So what would happen if the Supreme Court ruled that the task force members were not appropriately appointed? Would all free preventive care just stop? 

Harrison: Well, we don’t entirely know, because it hasn’t happened yet. But the guess is that a lot of insurers will decide that they don’t in fact want to cover certain types of preventive services, particularly for things that are long in the future. So if somebody is being screened for something that is likely to develop after age 65, insurers might decide, well, that’s Medicare’s problem. We don’t want to put in the money. We’ll just assume that if they get sick, we won’t have to pay for it. And so that could really result in quite a bit of coverage being dropped, 

Rovner: Although things that were pre-the ACA would continue, right? 

Zimbroff: Yes. The recommendations don’t go away and the coverage is still possible to be offered with zero cost to patients. There’s just a lot of uncertainty. I think the uncertainty both offers insurers a lot of options for trying to shift costs back to patients, but it also provides uncertainty to patients about whether they will have to pay for a colon cancer screening or a lung cancer screening. That might be another deterrent from them going, just not knowing one way or the other. 

Rovner: And there are potential health implications here, right? 

Zimbroff: Yeah. I think one of the great examples of the effect of this provision of the Affordable Care Act has been lung cancer screening. So this was initially a recommendation that was made by the United States Preventive Services Task Force in 2013, and since that was after the Affordable Care Act, its implementation for coverage by payers has been cost-free to patients. It has lowered barriers to getting lung cancer screening. And there’s research that estimates that over 80,000 life years have been added to Americans by catching cancer early or pre-malignant lesions on low-dose CT scans for millions of Americans across the board. 

Rovner: So I was a little bit surprised that the Trump administration decided to defend this case. Asking for expert medical advice doesn’t seem to be on Secretary Kennedy’s short list of priorities, or do you think he has other plans for the task force? 

Harrison: That’s a good question. I don’t know if we’ve seen much evidence, that you would think that this very much aligns with Secretary Kennedy’s focus on preventing and reducing the burden of chronic diseases. Certainly lung cancer and colorectal cancer fall in those categories. But on the other hand, we’re seeing a lot of changes to how this administration thinks about external advisory groups that were formerly independent or considered to be independent. So again, we’re just seeing — and the word “unprecedented” doesn’t really cut it anymore — but a novel amount of uncertainty and change. 

Zimbroff: Julie, I was also surprised that the administration initially decided to maintain their posture of the prior administration. Reading their most recent filings — again, with the full disclaimer that I’m not a constitutional scholar and so take my read with a grain of salt — is that the reading of the powers of the Health and Human Services secretary, who’s a political appointee overseeing this independent agency, the secretary actually has at-will removal powers for any task force member with which the secretary may disagree, may be able to delay the implementation of those recommendations and effectively veto a recommendation. The language is pretty strong by my, again, non-legal read of the reply brief from the government in this take, which I think is a different relationship or different understanding of the role of the secretary in evaluating and potentially vetoing expert recommendations that are designed to be explicitly nonpartisan and evidence-based. 

Rovner: So we will have to see what happens in this case, Dr. Krista Harrison and Dr. Robbie Zimbroff, thank you so much for joining us. 

Harrison: Our pleasure. 

Zimbroff: Thanks for having us. 

Harrison: Thank you for having us. 

Huetteman: OK, we’re back. Now it’s time for our extra-credit segment. That’s where we each recognize a story we read this week that we think you should read, too. Don’t worry if you miss it. We’ll put the links in our show notes on your phone or other mobile device. Shefali, why don’t you go first this week? 

Luthra: Absolutely. This story is from my colleague Jessica Kutz, who covers gender, climate and sustainability for The 19th. The headline is “Trump’s Push for ‘Beautiful Clean Coal’ Could Lead to More Premature Births.” The headline says what the story is about. She examines the potential implications for an executive order meant to bring what he calls “clean coal” as a more meaningful resource, again, to expand coal mining in public lands. And what I like about this story is that it reminds us who is affected and what the implications would be. I think the research that she cites about the relationship between coal mining and premature birth, which can lead to infant mortality, is really compelling and really important as we consider the talk about building a pro-family administration, a pro-life administration, and at the same time embracing these environmental policies, but could be quite harmful for people’s health, and particularly for the health of people who are already in many cases left out of what this administration’s embraced policy is around access to health care. 

Huetteman: Thanks for that. Anna, why don’t you go next? 

Edney: Sure. Mine is by Heather Vogell in ProPublica. It’s titled “Unsanitary Practices Persist at Baby Formula Factory Whose Shutdown Led to Mass Shortages, Workers Say.” This was just a brilliant follow-up to all the issues that went on with Abbott Laboratories a couple years ago that led to huge infant formula shortages across the U.S. The lab was unsanitary. The FDA had to basically tell them, You need to shut this down and fix everything. 

And they were able to work with FDA, get back open, take care of a lot of the shortages, but she talked to several workers who are concerned that they’re just back to their unsanitary practices. Again, there’s a lot of disturbing detail in here that I think is worth a read and also something really worthy of keeping an eye on for accountability because the Food and Drug Administration’s new head of food is an industry lawyer, Kyle Diamantas, who has defended Abbott in his past life, working at a big law firm. So what FDA will do here will be interesting as well, whether they’ll go back there and see if they see the same things that this reporter was told was going on. 

Huetteman: Wow. We’ll keep an eye on that. Jessie, your turn. 

Hellmann: My extra credit is from Sharon Udasin and Rachel Frazin at The Hill. It’s titled, “Military’s Use of Toxic ‘Forever Chemicals’ Leaves Lasting Scars.” It’s an excerpt from an entire book that they did called “Poisoning the Well,” focusing on how synthetic chemicals known as PFAS have been tied to health issues despite scientists knowing for decades that these products are dangerous and linked to many health problems, including cancer. So this specific excerpt looks at the military’s use of firefighting foam in military bases and how it has leached into water supplies all across the country and has made people really sick, and some people have even died. The military continued to use this foam for decades, and they’re doing evaluations now to determine which bases require cleanup, but that’s something that could take decades and communities are continuing to experience the fallout from this. And it’s just one example of the impact of PFAS in America and the kind of impact that it has on communities and something that, I think, deserves more attention even as we’re all just dealing with an onslaught of health news right now. 

Huetteman: Well, thanks for bringing attention to that one. I appreciate it. And my extra credit this week is from my KFF Health News colleagues Sam Whitehead, Phil Galewitz, and Katheryn Houghton. This headline is “States Push Medicaid Work Rules, but Few Programs Help Enrollees Find Jobs.” We all know from this podcast that Republicans in several states and in Congress are considering work requirements, which would mandate that many people have jobs in order to qualify for Medicaid coverage. So my colleagues explored what Medicaid health plans do to help people find work. They found that few Medicaid programs offer job help, and it can be transformative, but for the most part, these programs have low enrollment and they don’t collect the data to know if they work. As the story points out, there’s limited demand for employment help. And well, here’s the rub for GOP claims about the significance of work requirements: There’s limited demand because most people on Medicaid already work, just not in jobs that provide health benefits.  

OK, that’s this week’s show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us, too. Thanks as always to our producer, Francis Ying, and to Stephanie Stapleton, our substitute editor while I’m on the other side of the mic this week. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can find me on LinkedIn. Where are you guys these days? 

Edney: I’m also on LinkedIn and on Bluesky or Twitter [X] at @annaedney. 

Huetteman: Shefali? 

Luthra: I am at Bluesky, @shefali. 

Huetteman: And Jessie. 

Hellmann: I’m on LinkedIn and I’m on X and Bluesky, @jessiehellmann. 

Huetteman: Julie will be back next week. Until then, be healthy. 

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