The Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social 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.

Summer may be approaching its end, but the health policy stories that have marked the season continue. In Washington and across the country, public health officials are still struggling with outbreaks of vaccine-preventable diseases such as measles, while states and health systems are preparing for the impact of major federal funding cuts to their Medicaid programs.

This week’s panelists are Julie Rovner of KFF Health News, Shefali Luthra of The 19th, Rachel Roubein of The Washington Post, and Margot Sanger-Katz of The New York Times.

Panelists Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories. Rachel Roubein The Washington Post @rachel_roubein Read Rachel's stories. Margot Sanger-Katz The New York Times @sangerkatz Read Margot's stories.

Among the takeaways from this week’s episode:

• More Americans are struggling to afford health coverage, even before some of the biggest GOP-initiated changes to Medicaid and Affordable Care Act plans take effect next year. And the federal government’s efforts to block coverage of drugs used in gender-affirming care and to claw back ACA subsidies are creating access issues for a wider pool of Americans.
• Pennsylvania health officials this week reported two measles-related deaths amid an ongoing outbreak and the national debate over vaccines. While many of the actions taken by the U.S. Department of Health and Human Services under Robert F. Kennedy Jr. remain held up in litigation, President Donald Trump has made his personal skepticism about vaccines known, including through his recent executive order. Meanwhile, the administration is scaling back enforcement of civil rights protections for people with autism.
• The Trump administration is inviting states to participate in price negotiations with manufacturers over GLP-1 drugs if the states opt to offer the drugs through their Medicaid programs. But, amid concerns over cost, only one state has taken the federal government up on its offer.
• And farewell to Dolly Parton, the superstar country music singer and songwriter, also known for her philanthropic work, who died this week at age 80. In addition to her donation in 2020 supporting the development of the mRNA-based covid vaccine, Parton funded pediatric infectious disease research, a women’s health center in the Tennessee county where she was raised, and training for pediatric medical professionals.

Also this week, Rovner interviews Dean Rosen about his work for former Sen. Nancy Landon Kassebaum, a Kansas Republican and the first woman to lead a major Senate committee, who died last week at age 94.

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

Julie Rovner: The Washington Post’s “Why We Should Stop Eating Lettuce, Cyclospora or Not,” by Tamar Haspel.  

Margot Sanger-Katz: Stat’s “Comments on OMB Research Rule Mysteriously Removed From Federal Website,” by Anil Oza.  

Rachel Roubein: The New York Times’ “Americans Encounter Risks at Psychedelic Clinics Abroad,” by Noah Daly and Andrew Jacobs.  

Shefali Luthra: The Washington Post and KFF Health News’ “Why Some Couples Are Combining a European Vacation With Their IVF Treatments,” by LJ Dawson.

Also mentioned in this week’s podcast:

• Stat’s “How Trump’s Cuts Are Reshaping America’s Health System,” by Daniel Payne.
• Modern Healthcare’s “Insurers Defend ‘No Claims’ Members as Feds Cut Exchange Rolls,” by Nona Tepper.
• Stat’s “Medicaid Transgender Care Rule Sets Precedent That Could Restrict Coverage of Other Drugs,” by John Wilkerson.
• The Washington Post’s “Fighting Measles Is Expensive. See What It Cost To Contain 10 Cases,” by Naema Ahmed, Lena H. Sun and Aaron Steckelberg.
• CIDRAP’s “mRNA Covid Vaccine Linked to Lower Risk of Myocarditis in Teens, Young Adults,” by Meghan Holohan.
• Stat’s “Newer Shingles Vaccine Linked to Lower Heart Disease Risk, ‘Natural Experiment’ Shows,” by Elizabeth Cooney.
• Politico’s “Trump Offered State Medicaid Programs Lower Prices on Weight-Loss Drugs. Most Are Rejecting the Deal,” by Kelly Hooper.
• KFF Health News’ “Trump Puts Autistic Kids in the Spotlight and Cuts Agencies Built To Protect Them,” by Claire Sibonney.

Credits Taylor Cook Audio producer Emmarie Huetteman Editor

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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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

HHS announced the winners of the 2026 KidneyX EMPOWER: Living Link Prize Challenge.

HHS Office for Civil Rights announced a settlement with Azul Vision for potential violation of the HIPAA Privacy Rule.

One year into its creation, a $50 billion federal program aimed at improving rural healthcare lacks transparency, which could make it difficult to protect against fraud, identify successful projects, and ensure the program delivers on its promise to transform the system.

Transparency “is really important to help protect the integrity of the program, ensure funds are reaching the communities they’re meant to serve,” said Maya Sandalow, director of health policy for the Bipartisan Policy Center, a nonprofit think tank.

The federal government and states are compelled by public records laws to share documents when requested. But those requests can take months to fulfill, making their release too late for meaningful oversight as states rush to spend their allotments under tight federal deadlines.

In the meantime, the Centers for Medicare & Medicaid Services — which oversees the Rural Health Transformation Program — and some states aren’t proactively sharing information about where the funding is going and how it will be used.

CMS spokesperson Timothy Foster said the agency “will publish an annual report on state progress.”

States’ individual reports to CMS are “intended to be” shared upon request, but the agency won’t be proactively publishing the individual state reports, according to a CMS document.

Foster didn’t respond to questions about whether the agency will share examples of projects that are and aren’t working or create a tracker of funding recipients, award amounts, and what organizations plan to do with their funding — ideas that health and government transparency advocates have requested.

Instead, much of the program’s transparency thus far has been up to state governments, and “the level of details that states have publicized really varies,” said Sandalow, who co-wrote a recent paper on how the federal government can strengthen the rural health program, including through transparency.

Some states are sharing information with lawmakers, holding public meetings, and explaining where organizations plan to invest their money.

Others are more secretive, with multiple states declining to release public records in response to KFF Health News’ requests. Mississippi’s governor vetoed a transparency-related bill, West Virginia holds closed-door advisory meetings, and a South Dakota official wrote that he hoped CMS would keep its application from public view.

“I just don’t believe in all this secrecy,” said Mississippi state Sen. Hob Bryan, who chairs his chamber’s public health committee. “If they’re not up to something nefarious, why do they have to do it all in secret?”

Bryan, a Democrat, said there’s bipartisan concern about the lack of transparency in his state.

Reaching Rural Patients

Congressional Republicans created the five-year Rural Health Transformation Program last summer as an eleventh-hour sweetener to President Donald Trump’s signature One Big Beautiful Bill Act. The money was intended to offset concerns about the outsize fallout anticipated in rural communities from the law, which is expected to reduce overall Medicaid spending by more than $900 billion over a decade.

Sandalow said some states may be struggling to share information since they’re busy rushing to hire staff and meet the program’s tight deadlines, including an annual report due Aug. 31.

In the meantime, a slew of media outlets, nonprofits, and businesses are stepping in to make it easier for the public to track the rural health program.

KFF Health News is collecting states’ applications and approved plans and budgets, not all of which have been posted on state websites.

Rural Health Payout Tracking Applications for Rural Health Transformation Funds

KFF Health News is working to collect and post complete application materials, by state, here and will update this repository as new materials, released in response to public records requests, arrive.

Dec. 4, 2025 Rural Health Payout Tracking State Rural Health Transformation Plans

KFF Health News is working to collect and post approved plans as more states respond to emails and public records requests for their documents.

July 27, 2026

And several health nonprofits and companies have created trackers that describe states’ rural health initiatives, post funding opportunities, or list award recipients. But some resources are available only through paid services, aimed at helping businesses interested in applying for money.

Sandalow said previous federal programs “tend to draw attention for gaps in transparency and oversight rather than for doing it well.”

As an example, she pointed to the lack of oversight and transparency with the CARES Act and other covid relief programs, which saw fraud and improper payments.

In March, CMS published proposed quarterly and annual state reporting requirements for the rural health program, and a notice seeking comments. At least three groups replied with letters expressing concerns about transparency.

CMS should share states’ progress reports, funding recipients, and what organizations plan to do with their awards, wrote Zachary Gaumer, the Bipartisan Policy Center’s vice president for health policy.

Sharing this information would make it easier to track progress, identify successful programs that other states may want to replicate, and “ensure funds reach the rural communities they are intended to serve,” he wrote.

Molly Smith, group vice president for public policy at the American Hospital Association, asked CMS “to be as detailed as possible” about the “final destinations of these funds, given the complexity of the grant funding process.”

In her letter, Charlene MacDonald, who leads the Federation of American Hospitals, noted that some funding recipients, such as large health systems and academic medical centers, will be distributing their awards to other entities.

CMS should collect those “downstream subrecipients,” wrote MacDonald, whose group represents for-profit hospitals and healthcare systems.

Without this information, she said, it will be difficult to know if “funding is reaching the rural hospitals, providers, and communities primarily intended to benefit from the program.”

It can also be difficult to know which for-profit companies are being paid with rural health money.

For example, Nevada and Kansas have listed hospitals and other health facilities that received funding to purchase telehealth, scanning devices, and other health technology. But the states list only some of the companies from which recipients will buy those products.

States won’t have to report “downstream” funding in their August reports to CMS but will have to do so for all future reports, according to the agency’s recently finalized reporting requirements.

The CMS documents say states must list subrecipients that receive subawards as well as vendors or contractors paid by an organization using rural health funding. Although states must report how much money these downstream recipients receive, they don’t have to describe which specific services or products the recipient is providing.

DIY Dashboards

As groups ask CMS to share more information, some states have created their own rural health spending dashboards or recipient lists, with varying levels of detail.

Alaska, Kansas, Oklahoma, and other states list which organizations receive funding, their award amounts, and detailed descriptions of how recipients will spend the money.

Florida and Nebraska, however, are among the states that don’t share what awardees plan to do with their funding.

New Hampshire is posting recipient contracts that detail projects and their budgets on its Rural Health Transformation Program website. Some other states have uploaded contracts and grants on general procurement or award databases, which can be difficult to navigate.

Ohio, Virginia, and New Jersey have used press releases to announce awards. But the announcements aren’t posted on their Rural Health Transformation Program websites, which could make it difficult to find this information.

Many states created advisory groups to provide transparency and accountability for their programs. Most committees host public meetings and upload minutes, recordings, or other materials from the discussions.

But the West Virginia Department of Health won’t share what’s discussed in its rural health advisory panel’s closed-door meetings, according to spokesperson Gailyn Markham.

“The panel is intended to serve as an informal forum for discussion and feedback among invited participants and program staff,” Markham said.

South Dakota, North Dakota, and Mississippi are among the states without advisory committees.

In response to public records requests, South Dakota released a nearly completely redacted version of its budget for the rural health program while Mississippi declined to release its budget.

Mississippi’s governor said he vetoed a transparency-related bill because it would “create an unnecessary layer of bureaucracy” that would have slowed the award process, which could cause the state to lose out on future funds. Mississippi is “an incredible outlier in all this secrecy,” Bryan, the state lawmaker, told KFF Health News.

Sandalow said it’s important for states to publish the impact of their rural health projects, adding that CMS should share which rural health projects are and aren’t working.

She said national and state health organizations are creating networks and holding conferences to help spread this information. States should “be able to learn from each other, get a sense of lessons learned and best practices, and then be able to pivot their initiatives accordingly,” Sandalow said.

Michael Cannon, who oversees health policy studies at the libertarian Cato Institute, said people should know how their $50 billion in taxes is being spent on the rural health program, and whether state projects are making rural patients healthier.

If investors put that much money into a project, there is “no way” they “would let the recipients of those funds get away with the shoddy approach to transparency and accountability that the states are taking,” he said.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

HHS announced a $32.5M initiative to replace processed foods with nutrient‑dense, real food and identify scalable strategies to improve school meals.

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BAKERSFIELD, Calif. — Carlos A. grew up in a family on Medicaid, which made healthcare an afterthought since the public insurance is free for low-income enrollees. But when he received a raise two years ago, he found himself earning too much to qualify for the safety net program. And when he browsed Covered California plans, he found that marketplace prices were still too steep for his comfort.

“It was a panic at first,” Carlos said.

He has a chronic immune condition that needs to be managed by regular medication. KVPR and KFF Health News agreed to withhold his diagnosis and last name to protect him from repercussions related to his health.

“I have to be able to afford my health insurance to go to the doctor, because if not, then there’s no peace of mind,” he added.

Now in his late 20s, he receives employer-based coverage through his job at an Amazon warehouse. In addition to adjusting to monthly premiums and copays for medical visits and prescriptions, he also learned he needs prior authorization for that medication he had been on for a decade. Without it, he could get only the generic version, which he’s nervous to try. He felt his insurer failed to justify the switch.

“I felt that this was a slap in the face because I’m paying for my premiums,” he said. “It’s a contract. I’m going to pay my premiums, you cover my insurance, and if there’s a copay to my medicine, I’ll pay it. So why are you playing funny business with my medication?”

Carlos is one of many voters weighing healthcare costs in California’s 22nd Congressional District, which stretches from Bakersfield up to parts of western Fresno County. It’s newly redrawn to improve Democrats’ chances, but it remains among the nation’s most competitive this cycle and could determine control of the U.S. House. It’s long been held by Republican Rep. David Valadao, who’s been voted into the seat in almost every election since 2012.

Rep. David Valadao (R-Calif.) at the U.S. Capitol on March 25, 2025. (Bill Clark/CQ-Roll Call, Inc via Getty Images)

Carlos was among dozens of people who attended a rally in Bakersfield this month in support of Democratic challenger Randy Villegas. Carlos said healthcare costs will be among the key considerations in his vote in this fall’s midterm election, calling it an issue that both candidates need to address.

“I do expect them to campaign on healthcare,” Carlos said. “They’d be very foolish not to.”

Democrats are calling out Valadao’s vote for HR 1, the GOP tax-and-spending law known as the One Big Beautiful Bill Act, which cut billions in healthcare for poor people. The last time healthcare was on the ballot to this extent, Valadao lost his Central Valley seat in 2018 during a “blue wave” after the Republican lawmaker voted to repeal the Affordable Care Act. He retook his seat in 2020 by just 1,522 votes.

Valadao has said he voted for HR 1 because it protected Medicaid, known as Medi-Cal in California, for the most vulnerable, including children, pregnant women, disabled people, and seniors. He supported a rural health fund for hospitals in underserved areas. At the same time, he said the legislation’s work requirements for nondisabled adults were reasonable and would help maintain the program.

“Polling shows that the majority of Americans want us to have our programs to be sustainable,” Valadao told TV channel KERO in Bakersfield before the vote. “Sustainable means taking care of those who need it most, and those who should be working in part of society and being productive should be. And it’s not an unfair ask.”

The work requirement’s documentation mandate will take effect in 2027 for Medi-Cal enrollees. According to the California Health Care Foundation, an estimated 1.1 million people are expected to lose coverage by 2030 due to the eligibility and administrative changes.

Villegas, a populist who favors universal healthcare and is backed by Sen. Bernie Sanders (I-Vt.), has highlighted how Valadao’s HR 1 vote will be felt by low-income residents across the district. The Visalia school board member said he grew up as a Medi-Cal recipient. As of 2024, the current 22nd District, which has some overlap with its redistricted replacement, had the highest Medicaid enrollment rate — 64% — of any Republican-held seat in the nation, according to KFF, a health information nonprofit that includes KFF Health News.

Randy Villegas, a Democrat running for California’s 22nd Congressional District, campaigns in Bakersfield on May 23. (Myung J. Chun/Los Angeles Times via Getty Images)

“David Valadao voted to cut healthcare for nearly 70,000 people in the Valley to give tax breaks to billionaires and his wealthy donors,” Villegas said in a statement. “In Congress, I’ll fight to reverse those cuts and lower healthcare costs.”

Valadao’s office didn’t return requests for comment. His campaign touts his support for quality, affordable health coverage and maintaining access for the most vulnerable. Polling also finds that the Trump administration’s recent withholding of Medicaid funds from states is resonating with Republicans, with 55% saying it’s important for candidates to discuss fraud in government health programs. Republicans in swing districts, including Valadao, have begun airing ads emphasizing reform.

But many in the electorate remain undecided in this district where nearly a quarter of voter registrations are nonpartisan. Some said they haven’t heard enough from candidates about affordability solutions, which they hope will change because healthcare costs top the list of their economic anxieties.

Matthew Depue, who lives in Hanford and has private health insurance through his employer, said he has been fortunate to have reliable coverage. His healthcare premiums affect his monthly budget, but he said he hasn’t had to delay care or choose between paying medical bills and other necessities.

Still, Depue said, rising healthcare costs are quickly becoming harder to ignore. Last year, federal lawmakers declined to extend enhanced tax credits, which state officials say contributed to an average 10% premium increase for Covered California plans.

He also sees how affordability is pushing people across borders to find cheaper treatments and medications.

“People go from here to Mexico to get stuff done because it’s so much cheaper,” Depue said.

Even though healthcare is important to him, it isn’t the only issue driving his vote. Depue, who doesn’t know whom he’ll vote for, said he would evaluate candidates based on everything they stand for, including their positions on things like taxes and the difficult job market. District 22’s voter registration is 42% Democratic, 26% Republican, and 24% no party preference, according to the California secretary of state’s May report, the latest available.

Hanford, with a population of roughly 62,000, is the seat of Kings County. (Cresencio Rodriguez-Delgado/KVPR)

For Hanford resident Patreza Newton, affording healthcare has become deeply cumbersome. She hopes that whoever wins the election will work to prioritize healthcare, saying the current health system is unaffordable.

She used to purchase her own plan under Obamacare and is now covered by her church’s insurance. But to keep monthly premiums affordable, she chose a high-deductible plan, which means she has to pay out-of-pocket for some prescriptions and specialist visits.

Newton said she falls into what she calls “the in-between,” people who earn too much to qualify for Medicaid but still struggle to afford coverage.

Years ago, Newton was hit with a hospital bill of roughly $65,000 after surgery and had to apply for financial hardship assistance because she couldn’t afford to pay the bill.

As she considers how to vote this fall, she said she isn’t looking for overwhelming promises but rather a leader who understands what families are experiencing. She’s undecided on a candidate, saying none has shown the initiative she is looking for.

“I do think there should be a way that people can afford it,” she said, “no matter who they are.”

This article is from a partnership that includes KVPR, an NPR affiliate in central California, 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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Last year, Stephanie Halver’s primary care doctor consulted a risk assessment tool to calculate her chances of one day developing breast cancer. Halver, now 43, remembered the likelihood “popped up really high.”

That’s partly because Halver’s mother and aunt have had breast cancer. Her age and dense breast tissue also put her at higher risk.

Halver, who lives in Vancouver, Washington, said her doctor recommended she get an annual breast MRI, six months after her yearly mammogram. The scan would serve as an additional safeguard, since breast MRIs can detect abnormalities that mammograms miss.

Case in point, actress Olivia Munn had a breast MRI in 2023 that detected an aggressive form of cancer in both breasts, even though a recent mammogram had been clear, she told People magazine. Like Halver, Munn said her doctor recommended the MRI after a risk assessment score showed she faced a greater-than-normal chance of developing breast cancer.

Catching breast cancer early, before it spreads, improves survival rates, according to the National Cancer Institute. After Halver’s insurer preapproved the scan, she scheduled the MRI for September.

“Luckily, they find nothing,” Halver recalled.

Then the bill came.

The Medical Service

A breast MRI — short for magnetic resonance imaging — is a preventive and diagnostic tool that captures pictures of breast tissue in higher detail than a mammogram. MRIs may be recommended for patients at an increased risk for breast cancer, including those with dense tissue, a family history of breast cancer, or certain genetic markers.

But the scans are generally not recommended for women considered at average risk, according to the American Cancer Society, because they can also yield false positives, subjecting patients to unnecessary follow-up tests and procedures.

Breast MRIs are also used to diagnose cancer when an abnormality is detected during a mammogram, and they can determine the cancer’s stage after diagnosis.

The Bill

$1,205: After an insurance payment of $13.90, the patient was responsible for $1,191.10. The clinic also charged $65.60 for “Injectable/Oral Med,” often used to keep patients still or less anxious during the scan. Halver’s insurance covered about half of that charge.

The Billing Problem: Not Always Preventive

When Halver received the bill from Vancouver Clinic, where the MRI was conducted on Sept. 26, she was confused.

She knew that the Affordable Care Act requires health plans to cover preventive care, such as Pap smears and mammograms, at no cost to patients.

What’s more, Halver’s breast MRI had been recommended by her doctor and preapproved by Blue Cross Blue Shield of Texas, of which she is a beneficiary through her employer-sponsored plan. The whole point of it was preventive. That’s why she assumed it would cost her nothing.

To make things more confusing, a state law in Washington requires many health insurers to cover breast MRIs.

“I’ve had many phone calls trying to understand” the bill, Halver said.

Halver thought her health insurance plan would pay for a breast MRI recommended by her doctor in 2025. Even though the scan had been preapproved, she ended up with a $1,200 bill. (Kristina Barker for KFF Health News)

It came down to this: The U.S. Preventive Services Task Force, a panel of outside experts that advises the federal government, is charged with recommending which screenings health insurers are required to cover at no cost to patients, and preventive breast MRIs don’t fall into that category.

The task force has determined “the current evidence is insufficient to assess the balance of benefits and harms” of breast MRIs for women with dense breast tissue “on an otherwise negative screening mammogram.”

The federal guidelines are different for patients whose mammograms detect an abnormality, said Cathy Peters, senior director of state and local campaigns at the American Cancer Society Cancer Action Network.

In these cases, Peters said, guidelines published by the federal Health Resources and Services Administration specify that additional imaging, such as ultrasounds and MRIs, are preventive.

After an abnormal mammogram, these services are recommended “to address findings on the initial screening mammography” and to “complete the screening process for malignancies,” according to HRSA.

Those guidelines are a step in the right direction, but women who have not had an abnormal mammogram may end up “running into a big bill,” Peters said. This can be a deterrent when it comes to future screenings, she said, because when “you get hit with that once, you’re going to be very careful the next time you go.”

Some states have enacted laws that require insurers to cover breast MRIs, Peters said, but they generally don’t benefit patients like Halver who are enrolled in large, employer-sponsored insurance plans. These “self-insured” plans are regulated by the federal government, not by state lawmakers.

“Sadly, these state-by-state laws,” Peters said, don’t “fix the federal problem.”

The Resolution

Blue Cross Blue Shield of Texas declined to answer questions about Halver’s benefits or bill.

Halver appealed the insurer’s coverage determination, and in July she received a letter indicating that her appeal was denied.

Halver said she contacted her employer’s human resources department earlier this year and learned that mammograms are covered as a preventive screening under her health plan but breast MRIs are not. That means her annual breast MRI will be subject to deductibles, coinsurance, and other cost-sharing requirements.

In this case, the cost of Halver’s breast MRI was applied to her $3,300 annual deductible, an explanation of benefits from her insurer showed.

“I think I’m on the hook for this bill,” she said.

And because her risk of breast cancer is high, she said, “that’s a guaranteed bill every year.”

Halver learned that mammograms are covered as a preventive screening under her health plan but breast MRIs are not. (Kristina Barker for KFF Health News)

The Takeaway

If your doctor or medical provider recommends an annual breast MRI in addition to an annual mammogram, consider researching your state’s coverage rules on the DenseBreast-Info website. The nonprofit organization maintains a map with up-to-date information on state laws about breast cancer screenings. Depending on where you live and what type of health plan you have, preventive breast MRIs might be covered at no cost.

If it turns out you could be on the hook for a future bill, there are a few things you can do beforehand to potentially lower your out-of-pocket costs.

Ricki Fairley, co-founder of Touch, the Black Breast Cancer Alliance, recommended first finding a patient navigator at the hospital or cancer center to assist you.

She urged women to seek out resources in their communities or through national advocacy groups, including Touch, to find ways to lower screening costs. Programs funded by some states can help offset the cost of breast cancer screenings for low-income patients, Fairley said.

Beyond that, shop around for the best price. Freestanding imaging centers may charge less for a preventive breast MRI than a hospital. If possible, also consider scheduling the MRI at the end of your health plan’s deductible year. If you’ve already met your deductible, you could end up owing less out-of-pocket.

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

In January, Jeff La Marca got a prescription for the popular weight loss drug Zepbound. But he couldn’t afford the $750 monthly price tag.

Then Medicare launched an 18-month pilot program that offers GLP-1 medications to some enrollees for only $50 a month. La Marca thought he might finally be able to afford the drug.

“I thought, ‘Thank God, there’s a path,’” said La Marca, who lives in Basking Ridge, New Jersey, and has tried numerous diets and exercise regimes.

But the 68-year-old’s celebration was short-lived.

His application to the pilot program was denied.

La Marca has severe obstructive sleep apnea, one of several diagnoses that exclude patients from the Bridge program’s $50 monthly price. The notification didn’t say why he was rejected. He thinks that if he didn’t have that diagnosis, he would qualify due to his weight.

“I’m obese, morbidly obese, BMI 42. I had quadruple heart bypass surgery. I’m at risk for stroke. I’m prediabetic. And yet I can’t get it. I’m livid,” he said.

Jeff La Marca uses a machine to treat his obstructive sleep apnea. It adjusts his breathing with every breath. (Erica S. Lee for KFF Health News) La Marca, a retired professor living in Basking Ridge, New Jersey, is among an estimated 5.9 million Medicare enrollees excluded from a GLP-1 discount program because they have a medical condition such as Type 2 diabetes or sleep apnea. (Erica S. Lee for KFF Health News)

A Temporary Patch for a Long-Standing Gap

About 1 in 5 American adults have taken a GLP-1 medication, and most of them, including those with health insurance, say the drugs are difficult to afford. Federal law has long barred Medicare from covering drugs prescribed solely for weight loss, which is why the Medicare GLP-1 Bridge program made a big splash when it launched in July.

It’s a short-term pilot program in which Medicare is offering coverage of three GLP-1s for weight loss and management, to see if that would save Medicare money later. Eligible patients must be enrolled in Medicare Part D, a prescription drug coverage add-on to Medicare. Even though people must have Part D insurance to qualify, the preauthorization request doesn’t go through the insurer; it’s instead submitted to a separate system run by a contractor for the Centers for Medicare & Medicaid Services.

The pilot includes Wegovy, the KwikPen formulation of Zepbound, and the oral medication Foundayo.

Under the pilot, many Medicare beneficiaries with a body mass index of 35 or higher — the upper range of obesity — qualify for coverage of one of those drugs, if prescribed. Those otherwise eligible who have a BMI of 27 to 34 can qualify if they also have certain health conditions, such as prediabetes or cardiovascular disease.

But buried in the fine print is a distinction that’s tripping up patients like La Marca: The $50 price under Bridge applies only to people using the drug solely for weight loss. Anyone who has a qualifying medical condition that the Food and Drug Administration has approved GLP-1s to treat, such as Type 2 diabetes or moderate to severe obstructive sleep apnea, is instead routed back to their Medicare Part D prescription drug plan, which can require copays of hundreds of dollars a month for GLP-1s.

“The Bridge program was designed to target those people who can’t get GLP-1 coverage through Part D but would benefit from taking one for weight loss,” said Juliette Cubanski, who directs the Program on Medicare Policy at KFF, a health information nonprofit that includes KFF Health News.

The cost to Medicare of subsidizing the drugs will depend largely on how many people use the program, and the federal government hasn’t released an estimate.

Cubanski has estimated that 3.8 million people qualify and that, if a quarter of them enroll in Bridge and remain on treatment for the program’s full 18 months, it will cost Medicare about $3.3 billion. If three-quarters enroll, costs could rise to $10 billion.

If the government expanded the program to include the additional 5.9 million people who are overweight and already eligible for GLP-1 coverage through Medicare Part D, it would add billions more to the program’s cost.

The demonstration’s initial weeks have been positive, and most prior authorization requests have been completed in under 12 hours, CMS spokesperson Timothy Foster said.

“This has allowed thousands of eligible beneficiaries to access GLP-1 medications for weight loss at pharmacies nationwide,” Foster said.

“I’m obese, morbidly obese, BMI 42. I had quadruple heart bypass surgery. I’m at risk for stroke. I’m prediabetic. And yet I can’t get it. I’m livid,” La Marca says, referring to the popular weight loss drug Zepbound. (Erica S. Lee for KFF Health News)

GLP-1s Aren’t Covered

Patients like La Marca are left in a tough spot, qualifying for Part D coverage of a GLP-1 but facing much higher cost sharing.

“‘Coverage’ doesn’t always mean ‘affordable,’” said primary care physician Taylor Lacy, who describes herself as a “big proponent” of GLP-1s and practices at Sunflower Medical Group in Roeland Park, Kansas.

The Bridge program is leaving behind patients with the greatest medical need, she said. She noted that many Medicare patients already must navigate prior authorization and spend months trying alternate, often cheaper treatments, a process known as step therapy, before finally getting approval — only to arrive at the pharmacy counter and discover that their GLP-1 copays will run them $200 to $600 a month, if not more.

Researchers studying how Medicare insurers cover GLP-1s have found that recipients have faced increases in out-of-pocket costs and that almost all plans now require prior authorization, which can make getting the drugs more difficult.

Chris Bond, a spokesperson for insurance industry trade group AHIP, blamed drugmakers’ prices, “which they alone set and they alone can lower.”

La Marca’s insurer declined to answer specific questions about La Marca’s case.

Left Waiting

For now, La Marca’s GLP-1 prescription remains unfilled. The severe sleep apnea diagnosis that helps establish his medical need is also what excludes him from the discount program that would bring the cost within his reach.

As he reflected on his appeals and the dead ends, La Marca paused, his eyes filling with tears of frustration.

“This is now my quest, because it’s my only chance to improve my health,” he said. “It’s the only thing left. I’ve tried everything.”

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

HHS and USDA announced efforts to strengthen school meals by connecting American farmers with local schools, investing in school kitchens, and more.

California is weighing stiff penalties for hospitals and other healthcare entities that don’t stay under state spending limits, potentially levying hundreds of millions of dollars in fines if these providers don’t take steps to rein in rising healthcare costs.

If the state Office of Health Care Affordability adopts the fines next week, hospitals, medical groups, insurers, and others could face penalties that amount to as much as 125% of the total they spend above the state’s annual growth targets.

The penalty proposal comes after healthcare entities in California were asked to limit growth by 3.5% last year and ramp down to 3% by 2029. Seven hospitals that state officials consider particularly expensive face even smaller growth targets: 1.8% in 2026, dropping to 1.6% by 2029.

Consumer advocates argue that state financial deterrents are critical to bring relief to millions of Californians struggling with high insurance premiums and out-of-pocket expenses. Hospitals accounted for 40% of the increase in U.S. health spending from 2022 to 2024, compared with 11% from retail prescription drugs. But adding teeth to those targets sets up a fight with the powerful hospital industry, which has a pending lawsuit challenging the spending limits as unreasonable. Hospitals warned that they will cut back on vital services, including in emergency rooms, obstetrics, and behavioral health.

Healthcare industry representatives said the state affordability office hasn’t accounted for year-to-year volatility or other factors beyond the industry’s control, such as rising minimum wages, state earthquake retrofit requirements, and expensive new drugs.

“They’re building the plane while flying it,” said Ben Johnson, group vice president for financial policy at the California Hospital Association. “We know improvements in affordability are needed, but we have serious questions about how and about what the unintended consequences could be under OHCA’s rather stringent approaches.”

When calculating penalties, California regulators would consider various factors, including a healthcare entity’s financial situation, its market impact, and the gravity and number of offenses, according to a board presentation in June. And entities would first be given opportunities to implement performance improvement plans to bring their spending into line before penalties are imposed. For those that don’t comply, the board is considering penalties of $10,000 a day or a flat $500,000.

The penalties, which the affordability office’s eight-member board is required by state law to adopt, are slated for discussion, and a potential vote, at the board’s Aug. 26 meeting. The soonest healthcare providers would be subject to penalties is 2028, because it’s expected it will take two years to collect and publicly report spending data to measure against the 2026 targets. The state is still collecting data on how entities performed against the 2025 targets, which aren’t enforceable, according to Andrew DiLuccia, a spokesperson for the California Department of Health Care Access and Information.

States Set Targets

California is one of at least eight states that have set spending targets as part of an expanding effort to curb soaring healthcare spending across the nation. Connecticut, Massachusetts, Oregon, and Rhode Island have also authorized the use of some type of financial penalty. The specifics of each vary widely, although so far no state has applied them.

A survey last year by the California Health Care Foundation found that 4 out of 10 state residents said they had medical debt, and 6 in 10 reported that they or a family member had skipped or delayed medical care in the previous 12 months because of cost. Nationwide, about half of adults say it is difficult to afford healthcare costs.

After Rosalyn Book got stiches on her chin, the elementary school teacher received a $15,000 ER bill from a local hospital, despite having insurance. Many teachers in her district leave because they can’t afford the cost of healthcare and insurance premiums, she said.

“The healthcare charges are just insanity, and what we get as patients for the care, it’s not the best either,” said Book, president of the Monterey Bay Teachers Association. “If you’re a working, regular individual in terms of how much you make, the cost of living and especially the healthcare is just not doable.”

Meanwhile, hospitals are warning there’s a risk of more closures. According to Yale University’s Health Care Affordability Lab, 17 hospitals have closed in the state since 2016, compared with only six openings.

Hospitals and other healthcare providers have said the proposed multimillion-dollar penalties are too steep and could destabilize their operations at a time when they’re facing funding challenges, including massive federal cuts to Medicaid, the end of enhanced federal subsidies for Affordable Care Act plans, and a sharp rise in uninsured patients. The One Big Beautiful Bill Act, passed by congressional Republicans and signed by President Donald Trump last summer, is expected to reduce federal Medicaid spending by more than $900 billion — including by $30 billion in California — and increase the rolls of the uninsured in the U.S. by 10 million people over a decade.

Johnson said hospitals raise prices on commercial payers to offset the expense of treating uninsured patients, as well as patients on Medicaid and Medicare, which can reimburse care providers at rates that fall short of treatment costs.

In addition, said Anete Millers, vice president of legal and regulatory affairs at the California Association of Health Plans, tax increases on managed-care plans recently approved by state legislators to offset federal Medicaid cuts will force plans to increase their prices for consumers.

“Some spending pressures originate outside of the control of health plans and are the result of public policy decisions rather than underlying changes in healthcare utilization or efficiency,” she told the affordability office’s board at the June meeting.

Kristof Stremikis, the director of market analysis and insight at the nonprofit California Health Care Foundation, acknowledged that external forces can drive costs but said that plenty of unnecessary spending is within the healthcare system’s control, such as administrative waste and duplicative tests and procedures. Almost 25% of U.S. healthcare spending is considered wasteful, according to research published in JAMA.

Elizabeth Mitchell, a former Office of Health Care Affordability board member whose term ended in May, agreed.

“Every business has external challenges,” she said. “The hospital industry has not taken accountability to actually manage costs. I have heard those excuses for decades, and at some point, they have to make changes.”

First Step To Bring Down Costs

An analysis of five states with cost growth benchmarks, published in June, found that some have succeeded in modestly slowing healthcare spending, particularly those with enforcement mechanisms. However, spending growth in most states has still exceeded the targets set. 

Jeremy Vandehey, a consultant with the Peterson-Milbank Program for Sustainable Health Care Costs, said setting benchmarks and collecting data to analyze which entities meet them is only a first step. Armed with information about what and who is driving up costs, states are more empowered to take additional action, such as imposing penalties or regulating prices, to bring down costs, he said.

“I don’t think anybody in any state is declaring victory on healthcare costs, but I wouldn’t say that that means the programs are a failure,” Vandehey said. “In all of these states, there’s much more robust conversations happening about, OK, we haven’t solved our cost crisis, so we need additional action.”

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Céline Gounder, KFF Health News’ editor-at-large for public health, discussed the potential of Moderna’s melanoma vaccine breakthrough on CBS News 24/7’s The Daily Report on Aug. 19, drawing on her experience as a former melanoma patient.

• Click here to watch Gounder on The Daily Report.

KFF Health News senior correspondent Rachana Pradhan discussed how an issue with Deloitte-run information technology systems denied Medicaid coverage to disabled Michiganders on NPR’s Stateside on Aug. 18.

• Click here to hear Pradhan on Stateside.
• Read Pradhan’s “A Deloitte-Run System Denied Medicaid Benefits for Michigan’s Disabled. Now Trump’s Law Piles On,” with reporting from Samantha Liss and Kate Wells.

KFF Health News senior correspondent Renuka Rayasam discussed how hospitals are using wristbands to help reduce maternal deaths on WUGA’s The Georgia Health Report on Aug. 14.

• Click here to hear Rayasam on The Georgia Health Report.
• Read Andrew Jones’ “Hospitals Say They Found a Tool To Help Reduce Childbirth Risks: Wristbands.”

KFF Health News chief Washington correspondent Julie Rovner discussed President Donald Trump’s executive order on childhood vaccines on Slate’s What Next podcast on Aug. 13. Rovner also discussed Medicare on Attitude With Arnie Arnesen on Aug. 11.

• Click here to hear Rovner on What Next.
• Click here to hear Rovner on Attitude With Arnie Arnesen.

KFF Health News ethnic media editor Paula Andalo discussed how an uninsured patient saved thousands by shopping around for the best surgery price on Radio Bilingüe’s Línea Abierta on Aug. 12.

• Click here to hear Andalo on Línea Abierta, starting at the 31:21 mark.
• Read Andalo’s “Uninsured but Undaunted, a Surgical Patient Searched the Globe for a Deal.”

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

HHS announced Mark Cruz will serve a four-tear term as director of the Indian Health Service (IHS).

HHS Secretary Kennedy announced the first-ever National Autism Missing and Endangered Person Alert initiative.

In just 555 days, President Trump and HHS Secretary Kennedy have delivered sweeping changes across American health policy.

HHS announced a Request for Information (RFI) for public input on federal vaccine recommendations and shared clinical decision-making.

People with disabilities have long fought for the right to live at home rather than in institutions. Now, the Department of Justice says states don’t have to help make that happen.

The decision by the Trump administration comes amid massive cuts in federal funding for Medicaid. Advocates worry this could be a one-two punch for disabled Americans who want to live independently.

KFF Health News senior correspondent Stephanie Armour joined WAMU’s Health Hub on Aug. 19 to explain what this change means for Americans with disabilities and their loved ones.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

The ongoing debate over the U.S. health system shouldn’t be based on whether the government or the private sector is the dominant player, billionaire entrepreneur Mark Cuban said this week. The bigger issue, he said, is whether the system’s participants are transparent about what they charge and what they pay.

“I’m not opposed to single-payer or universal healthcare at all,” Cuban said Aug. 18 in an interview with KFF Health News. But “when you don’t know all the costs, when there’s no transparency, it’s impossible to determine if it’s a better solution or not,” he said.

Cuban’s remarks came on the heels of primary election victories by progressive supporters of “Medicare for All” — most notably Abdul El-Sayed, who recently clinched the Democratic Senate nomination in Michigan.

The former majority owner of the Dallas Mavericks and a former investor on the hit TV show Shark Tank, Cuban changed the way generic prescription drugs are sold in 2022 by co-founding Mark Cuban Cost Plus Drugs. The website, which posts all its costs and takes a blanket 15% markup, sells thousands of medications, often at deep discounts compared with buying through private insurance plans or self-pay pharmacies.

“We took the transparent path for an industry where there was zero transparency,” Cuban said. “Everybody else prices to the market; we price to what we thought was fair.”

Cuban said that, in thinking about the broader problems facing the U.S. healthcare system, the key is to rebuild trust. “Trust really is a formula,” he said. “Trust equals transparency divided by self-interest.”

One way to build trust, he said, is to give consumers incentives to find the best price for nonemergency health services. Cuban said that means every medical purchase should count toward health insurance deductibles and out-of-pocket maximums, which is not currently the case.

He also advocates breaking up some of the vertically integrated health companies that have grown so large — owning insurers, care providers, and the companies that serve them — that they can dictate their prices. “If you break up these big, huge conglomerates, everything changes. The price of everything drops like a rock,” he said.

But so far, only a few lawmakers have been brave enough to push that goal, Cuban said, citing the Break Up Big Medicine Act co-sponsored by senators Josh Hawley of Missouri, a Republican, and Elizabeth Warren of Massachusetts, a Democrat.

In the end, Cuban said, what matters is not who is running the system but whether all the cards are on the table — in particular, whether the terms of healthcare contracts are public. Whether it’s the government or private businesses doing the negotiating, “if you don’t know how the deals are structured, it’s impossible to negotiate better ones.”

The interview was part of the “How Would You Fix It?” series featuring Julie Rovner, KFF Health News’ chief Washington correspondent and host of the What the Health? podcast.

An abbreviated version of this interview aired Aug. 20 in Episode 460 of What the Health? From KFF Health News: “Headless FDA Gets a New Nominee.”

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Evelyn Griffin had led a life out of the spotlight until she testified at the Louisiana Statehouse five years ago and experienced what she called her “great awakening.”

The state health department wanted to add covid vaccines to the school immunization schedule, a move no state has ever implemented. Robert F. Kennedy Jr., then known as a leading vaccine skeptic, had already claimed the covid shot was “the deadliest vaccine ever made” during a poster board presentation at the legislative hearing.

Griffin, a longtime OB-GYN, relied on nearly identical images during her own blistering testimony against the proposal. After the hearing, she expected splashy headlines about Kennedy’s assertions, shifting the public debate over covid policies and vaccines. But that did not happen; one news outlet dismissed him as a promulgator of propaganda. Griffin was shocked.

That is “when I saw how the world worked,” she recalled in a podcast interview. Griffin said she and her husband, a vascular surgeon, decided to take action and “shine light on things.”

Now, Kennedy is the nation’s health secretary, and Griffin holds prominent roles that position her to help carry out his vision.

Last September, Kennedy appointed her to ACIP, the advisory panel for federal immunization policy, where she voted to recommend limiting access to covid vaccines and ending universal newborn immunizations for hepatitis B, steps that a federal judge has blocked. In December, Gov. Jeff Landry of Louisiana, a conservative Republican and an ally of President Donald Trump’s, named Griffin as the state’s surgeon general.

That makes her the top public health physician in Louisiana, which has the worst health outcomes among states.

She is an unconventional choice. Griffin has no background or specialty training in infectious diseases or public health. She is aligned with alternative health movements — including Make America Healthy Again, or MAHA — and has hosted some speakers promoting fringe medical views.

Griffin declined interview requests for this article. “My vision as Louisiana’s surgeon general is to help shift our healthcare system toward preventing disease, not just managing or treating it,” she said in a statement.

Eight months into her tenure, she has yet to make major changes at the health department. She has faced hurdles in her efforts to tighten access to vaccines and limit public health powers, testifying on several bills that legislators rejected.

Still, Griffin’s political rise reflects the gains of Kennedy’s vaccine agenda at the state level, a vital testing ground for laws aimed at eroding government mandates. State officials have enormous power to set health policy and beat back infectious disease outbreaks. While Griffin’s post is largely a bully pulpit, she could spur real change by advising the governor, state health secretary, and lawmakers.

Some public health and infectious disease experts warned that if Griffin eventually succeeded in curtailing the state’s authority, illnesses and deaths could escalate and Louisiana could be hamstrung in a future pandemic. At one vaccine panel meeting last year, she said it was “unclear” whether vaccines were linked to autism, as Kennedy has suggested. When asked by The New York Times, she declined to say whether she believed any vaccines should be mandated for schoolchildren.

“Someone who has expressed the views she has, who’s now in a public policy position, is very dangerous,” said Georges Benjamin, the chief executive of the American Public Health Association.

But Kirk Milhoan, a pastor and pediatric cardiologist who serves as chair of the federal vaccine panel, defended Griffin as an “excellent choice” for surgeon general. “No one should be afraid of Dr. Evelyn Griffin having the heart’s desire to take care of the population of Louisiana,” he said in an interview.

While Griffin is on a learning curve as a political novice, she has signaled big ambitions.

She called for “dramatic transformational change” during a public meeting in January, promising to focus on women’s health, rural health, and the root causes of disease. An accompanying slide presentation said Louisiana would lead through “family, faith, and fearlessness.”

Griffin, 49, often cites her family background in explaining her trajectory.

She was born Ewelina Bulczynski under Communist rule in Poland in 1976. When she was 5, her family defected to a refugee camp in Austria before immigrating to Canada. She and her two brothers later came to the United States to practice as physicians. She has credited this history with giving her a “different perspective” as a doctor and influencing her skepticism of government mandates.

“My parents escaped Communist Poland so that we could come here for the freedoms, such as medical freedom, that this country has,” she told Louisiana lawmakers in 2022.

Evelyn Griffin, Louisiana’s surgeon general, and her husband, Joseph Griffin, attend a wellness event sponsored by the Northshore Alternative Health Alliance in Mandeville, Louisiana, in June. (Christiana Botic for The New York Times)

She met her husband, Joseph Griffin, while they attended Ross University School of Medicine, then located in Dominica. After residency programs in New Orleans, they settled in Baton Rouge and raised two children.

People who have known Griffin during her 20-year career delivering babies and treating women described her as a kind, caring, and smart physician. “Patients loved her,” said Francis Dauterive, who worked with her.

In the years before the pandemic, Griffin had noticed a rise in chronic health problems among her patients. She began studying how nutrition and lifestyle choices could treat and prevent illness, and pursued online training in functional medicine. She started an Instagram account filled with images of jackfruit sloppy Joes and vegan jambalaya, her dog lounging on a yoga mat, and her backyard strawberry plants.

She also learned of Barbara O’Neill, a Christian wellness figure popular on social media. O’Neill was barred in 2019 from giving medical advice in Australia after claiming that cancer was caused by a fungus and could be treated with baking soda, and that vaccines caused “an epidemic of ADHD, autism, epilepsy and cot death.” In a 2025 podcast, Griffin called O’Neill a “sage” teacher who was ostracized for focusing on lifestyle solutions to medical issues. She said she kept O’Neill’s advice for a healthy life — including exercise, sunshine, and trust in God — posted on her fridge.

But it was the pandemic that transformed her career. In speeches and interviews, she said she began to question public health guidance and that of her former employer, Ochsner Health, Louisiana’s largest health system, on masking, vaccines, and mandates.

Griffin wanted to share research with colleagues that wasn’t “mainstream” science, as she put it, studies she said were from contacts in Europe on early covid treatments. Griffin was repeatedly rebuffed, she said.

Eventually, she resigned. “I’m going to stick to my principles,” she later recalled thinking. She now works at the Baton Rouge General health system. Ochsner officials declined to comment.

Louisiana had been hit hard by the pandemic. By December 2021, more than 14,000 people had died from covid. That summer, the Delta surge had killed six pregnant women there over two months, and maternal health organizations were urging vaccination.

But in her testimony to lawmakers that December, Griffin had questioned the vaccine’s safety after health officials had reported rare adverse reactions. She invoked a public health catastrophe: The drug thalidomide, prescribed during pregnancy in Europe (and tested in the United States) in the 1950s, had left thousands of babies with missing or malformed limbs. She also reminded lawmakers of the Nuremberg trials, where Nazi collaborators had been sentenced to death for medical experimentation.

“So everyone has to be on notice when making these types of decisions,” Griffin said, looking at the politicians. The state later dropped plans to require covid vaccines for students.

Griffin and her husband have since embedded themselves in Louisiana’s right-leaning alternative health communities. They have espoused views that, amid the swirl of social-media-fueled wellness trends, pandemic backlash, and widespread dismay over Americans’ poor health, have become ascendant in the second Trump presidency.

Jay Luneau (top center), a Democrat in Louisiana’s Senate, questions Griffin in May about a bill to prohibit businesses and schools from mandating new vaccines or other medical interventions. (Christiana Botic for The New York Times)

Griffin returned to the state Capitol over the next three years to testify for favored causes, including bills supported by Health Freedom Louisiana, a group aligned with Kennedy. One would have expanded access to ivermectin, an antiparasitic drug popular among vaccine skeptics, though numerous studies have shown it is ineffective in treating covid, and another would have banned future government health mandates, which Griffin has called “a slippery slope.” Neither got out of committee. She also testified in support of a ban on gender-transition treatments for minors, which became law.

After the U.S. Supreme Court overturned Roe v. Wade in 2022 and Louisiana’s near-total abortion ban took effect, Griffin became an ally of Louisiana Right to Life, the state’s leading anti-abortion group. She recorded videos arguing that the law did not impede pregnancy care. The ban was later found to delay miscarriage treatment and lead to unnecessary cesarean sections, according to doctors and reproductive rights groups.

Griffin and her husband struck up a friendship with Tony Spell, the pastor of Life Tabernacle Church in Baton Rouge, sometimes joining him for Bible study. Pastor Spell refused to shut his evangelical church during the pandemic, leading to criminal charges that were overturned by the Louisiana Supreme Court. Griffin called him “an absolute hero.”

Benjamin Clapper, executive director of Louisiana Right to Life (center left), speaks to Griffin at the Louisiana Capitol in May. (Christiana Botic for The New York Times) Tony Spell, the pastor at Life Tabernacle Church in Baton Rouge, is friends with Griffin and her husband. (Christiana Botic for The New York Times)

She has spoken at annual health freedom gatherings on the church’s sprawling grounds and launched her own wellness events there two years ago. Guests have talked about backyard gardening, naturopathic medicine, the benefits of doulas and raw milk — a passion of Kennedy’s — which recently sickened nearly a dozen Louisiana residents.

One speaker, an OB-GYN, said contraception encouraged abortion. Another, an ophthalmologist, questioned the safety of wireless technology, as has Griffin. Quoting O’Neill, the Australian wellness figure, Griffin warned the crowd to “stay away from sunscreen,” adding there were “lots and lots of chemicals” in it.

Spirituality is “the foundation for health,” she said during the event in 2025, and some of her speakers have presented faith in Jesus as essential to being healthy. At the 2024 gathering, Sean Troxclair, an internist who is now her deputy, said that when he was “injured” by a vaccine, “I got with Jesus.” He added, “If you’re not with him, no matter what you do, you’re not going to get better.”

In written comments to the Times, Griffin said that faith was not a prerequisite for good health, and that she “may not share every perspective presented” by her speakers.

Griffin’s appointment is among Gov. Landry’s wider efforts to move Louisiana, already a deeply red state, further to the right. He has supported a crackdown on doctors who mail abortion pills to Louisiana patients and a lawsuit against the Food and Drug Administration to stop the practice nationwide. The U.S. Supreme Court said the pills could still be sent by mail while the FDA case continues in the lower courts.

The governor’s first appointee as surgeon general, Ralph Abraham, another supporter of Kennedy’s, blocked his staff from promoting any vaccines amid an outbreak of whooping cough that killed two babies.

Griffin has begun her tenure more quietly, seeking ties with the state’s medical community while trying to find her place in a health department hierarchy where the secretary still wields much of the power.

Griffin and her deputy, Sean Troxclair (right), attend a women’s wellness event at the Louisiana Capitol in May. (Christiana Botic for The New York Times)

For her staff, she’s recruited figures from wellness and vaccine-skeptical circles, including Troxclair and Kathleen Willis, an internist who has questioned the safety of the childhood vaccine schedule, as has Trump.

A surprising presence in the department is Griffin’s husband, whom she’s called “like-minded.” Though he is not employed by the agency, he has joined her appointments with state and federal officials and participated in department meetings, sometimes providing feedback or asking questions, according to two people present at the sessions. Griffin has also placed him on a Medicaid advisory subcommittee. Griffin said in a statement that he was “not involved in formal decision-making.”

Bruce Greenstein, the state health secretary, introduced the couple during a public meeting in January, saying, “We basically get two doctors for the price of one.” In May, Griffin’s husband joined the governor on a contentious trip to Greenland, which Trump has periodically threatened to control.

Griffin’s beliefs represent a shift away from public health policies that prioritize the protection of the wider community in favor of ones that prioritize individual choice. Like Kennedy, she has said this is necessary to restore faith in public health systems battered by the anger over pandemic restrictions.

Such a reframing of the government’s role would upend long-standing public health principles and risk harming society’s most vulnerable, said Paul Offit, director of the Vaccine Education Center at the Children’s Hospital of Philadelphia.

“Are we in no way responsible for people who we are going to sit next to on a bus or get into a crowded elevator?” he asked. “Do we have no sense of responsibility to other members of society?”

Florida’s former health secretary and surgeon general, Scott Rivkees, whose successor tried to roll back vaccine mandates, said rising vaccine skepticism was already contributing to outbreaks of measles and whooping cough. “This is something that our country will regret as we start seeing our sons, daughters, neighbors, friends, cousins, pay the price,” he said in an interview.

Even though Griffin has allied herself with some lawmakers in the Republican-controlled legislature, she testified on three bills this year that failed to proceed. One would have created new informed-consent requirements for vaccines — including banning mothers from agreeing to vaccines for 12 hours after giving birth, when Griffin said hormones and other factors could impede their thinking.

Another would have significantly limited the government’s ability to require vaccines, testing, or masks in a future outbreak, mandates that Griffin testified infringed on individual rights and were discriminatory. A third bill, her own proposal, would have given her office sweeping access to all medical records in the state, which are now protected by medical privacy laws.

Gov. Landry did not publicly push for the measures, a sign that they may not be priorities for his administration. A majority of Louisiana voters support school vaccine mandates, according to polls by Louisiana Families for Vaccines and the Center for Individual Freedom. Most proposals to weaken vaccine laws also failed in other states this year.

Since her appointment, Griffin has traveled the state to meet with residents. In June, she and her husband wandered through a wellness event, sponsored by the Northshore Alternative Health Alliance, in Mandeville. She had been invited to give the keynote address by Abigail Licatino, a member of Health Freedom Louisiana who has said that vaccines cause “most” autism.

Booths featured local farmers, reiki practitioners, functional medicine doctors, chiropractors, spiritual healers, and purveyors of peptides, supplements, and IV treatments. The event represented some of the “holistic approaches” Griffin said she planned to highlight as surgeon general.

In speeches before her appointment, Griffin had offered a far-reaching vision. While conventional medicine would still play an indispensable role, she said, the current health system was failing Americans and would “collapse.” The health freedom and wellness movements would help show “the path forward.”

The New York Times’ Kitty Bennett, Sheelagh McNeill, and Kirsten Noyes contributed research for this article.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

The Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social 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.

Heidi Overton, a physician and White House domestic policy adviser, is President Donald Trump’s choice to be the next head of the Food and Drug Administration. Overton, an abortion opponent and supporter of Trump’s proposed changes to the childhood vaccine schedule, has made enemies while working on health policy from the White House and could face some tough questioning from senators.

Meanwhile, prescription drug prices are dropping for some people, and the wholesale retailer Costco is entering the Medicare market. Still, overall, the problem of healthcare being too expensive remains stubbornly hard to solve.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, Shefali Luthra of The 19th, and Alice Miranda Ollstein of Politico.

Panelists Joanne Kenen Johns Hopkins University and Politico @JoanneKenen @joannekenen.bsky.social Read Joanne's bio. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories. Alice Miranda Ollstein Politico @AliceOllstein @alicemiranda.bsky.social Read Alice's stories.

Among the takeaways from this week’s episode:

• Trump’s selection of Overton to lead the FDA is prompting concerns from a diverse crowd of skeptics that includes Sen. Bill Cassidy (R-La.) and adherents to the Make America Healthy Again movement. Her lack of managerial experience and history of controversial writings could be liabilities during the confirmation process, though Trump has a decent track record of clearing nominees through a hesitant Senate.
• Grant money continues to be held up at the National Institutes of Health pending political reviews, and new reporting sheds light on “zombie programs” at the Centers for Disease Control and Prevention, where money has been appropriated but there’s no staff to use it. Plus, the trend of declining childhood immunizations continues, with vaccine exemptions for kindergartners jumping to another high.
• New data shows the largest drop in prescription drug prices since the 1960s, and while the Trump administration is taking credit, it’s unclear what exactly caused it. Meanwhile, the federal government is investigating major health companies for allegedly dodging taxes or engaging in anticompetitive practices. And the wholesaler Costco is getting into the health insurance game, partnering with a nonprofit insurer to provide Medicare Advantage or Medigap plans in a few states.

Also this week, as part of the “How Would You Fix It?” series, Rovner interviews billionaire businessman Mark Cuban, who has already reshaped the generic drug market and now has his eye on the rest of the healthcare system.

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

Julie Rovner: Mother Jones’ “The Orwellian Company Behind ICE’s New Electric Shock Gloves,” by Sophie Hurwitz.

Shefali Luthra: The 19th’s “Tik Tok’s Fake GLP-1 Market Preys on Women Trying To Lose Weight,” by Barbara Rodriguez.

Alice Miranda Ollstein: The Texas Observer’s “Texas Maternal Mortality Committee’s Next Report Will Skip Post-‘Roe’ Deaths. Lawmakers Suspect Political Influence,” by Mary Tuma.

Joanne Kenen: Politico’s “AI Slop Is Swamping a House Office That Drafts US Laws,” by Owen Dahlkamp.

Also mentioned in this week’s podcast:

• NOTUS’ “‘Graveyard for Grants’: NIH Is Holding Up Medical Research Funding,” by Paige Winfield Cunningham.
• The Associated Press’ “The CDC Has Zombie Programs. Congress Funds Them, but Few People Are Left To Do the Work,” by Mike Stobbe.
• KFF Health News’ “Kennedy’s Quiet Hunt for Autism Culprits Stalls as Trump Orders Baseless Changes to Childhood Shots,” by Amanda Seitz and Stephanie Armour.
• The Wall Street Journal’s “Costco Sells Vacations, Gas and, Soon, Medicare Plans,” by Anna Wilde Mathews.
• Stat’s “Epic’s Alleged Anticompetitive Practices Under Scrutiny From Federal, State Investigators,” by Casey Ross and Brittany Trang.
• Stat’s “UnitedHealth Faces IRS Probe Over Potential Tax Avoidance,” by Bob Herman.

Credits Zach Dyer Audio producer Taylor Cook Audio producer Emmarie Huetteman Editor

Click here to find all our podcasts.

And subscribe to “What the Health? From KFF Health News” on Apple Podcasts, Spotify, the NPR app, YouTube, 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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Northwestern University economist Chuck Manski studies decision-making amid uncertainty. That prepared him better than many other cancer patients to decide whether to stay on an immunotherapy treatment that was making him very ill.

For six months in 2022, Manski received monthly infusions of nivolumab to fight advanced melanoma. The drug ruined his thyroid gland, he said, requiring him to go on a special medication for the rest of his life, and caused severe dryness in his eyes, lips, and mouth. The FDA’s protocol for the drug called for an entire year of treatment, but Manski said his oncologist couldn’t explain why. It’s FDA-approved, “so that’s what we use,” she said.

By that point, Manski showed no cancer signs or symptoms, and after reading a lot of medical journal articles, he concluded that the intense side effects probably meant the treatment had done about all it could do.

“She couldn’t tell me a year was the optimal dose. Nobody could,” he said in a June interview from Spain, where he received an award for his economics work. “So I made my own diagnosis. I took myself off.”

Manski’s decision was in line with what doctors in Canada, Israel, Sweden, and other countries were already doing: giving lower doses of nivolumab, sold under the brand name Opdivo, and of a similar drug, pembrolizumab (Keytruda), or giving them for shorter periods or over longer intervals than the FDA recommended. In India, oncologists found that as little as one-twelfth of the labeled dosage of nivolumab had a powerful impact on several cancers.

“There is incredible uncertainty in drug dosing,” Manski said.

His experience impelled him to join an informal yet determined community of researchers, doctors, and patients pushing for extra studies to help patients and doctors find the right dosage for an array of cancer drugs. They point to evidence suggesting that taking smaller doses of some cancer drugs, or remaining on them for shorter periods, could save billions of dollars and prevent some of the worst side effects.

In a recent KFF survey, 43% of U.S. adults said they had skipped their medication in the past year because of cost. A Vanderbilt University study of Medicare enrollees released in 2022 found that 30% of cancer drug prescriptions went unfilled at the pharmacy.

But dose-optimization studies rarely occur after the early stages of a drug’s development, or once it’s on the market. By then, few parties in the U.S. healthcare system — beyond patients — have a stake in learning that a lower dosage could work as well while causing less harm.

Pharmaceutical companies have shown little interest in dialing back recommended dosages. Once they set the price for a drug, the more sales, the more profit. One study that examined 29 expensive cancer drugs estimated that if minimum necessary dosages had been used in 2024, the U.S. healthcare system could have saved roughly $31 billion.

“Decisions aren’t always made with the best needs of the patients in mind. The bottom line is another reason,” said Matthew Goetz, a breast cancer researcher at the Mayo Clinic Comprehensive Cancer Center.

Doctors in other countries have been giving patients lower doses of nivolumab or giving them for shorter periods or over longer intervals than the FDA recommends. (George Frey/Bloomberg via Getty Images)

Merck last year sold nearly $32 billion worth of pembrolizumab, a drug that’s FDA-approved for more than 40 cancer conditions. It accounted for almost half of Merck’s drug sales. Bristol Myers Squibb, meanwhile, brought in $10 billion from nivolumab, which works similarly to pembrolizumab in tweaking the immune system. Three important but often toxic breast cancer drugs — Ibrance, Verzenio, and Kisqali — boosted revenue at Pfizer, Eli Lilly, and Novartis by $4.1 billion, $5.7 billion, and $4.8 billion, respectively.

Pembrolizumab is usually prescribed at a fixed dosage; nivolumab is sometimes prescribed at a fixed dosage, sometimes based on the patient’s weight. If the patient is dosed less than what’s on the label, drugmakers generally get less money. And they aren’t the only ones who lose out.

Through a federal program known as 340B, created in 1992 to subsidize the treatment of low-income patients, hospitals that treat a certain percentage of low-income patients can buy drugs at a steep discount, while charging insurers or patients more. For Medicare patients, doctors are paid an additional 6% of the drug’s average price for each infusion.

From 2010 to 2024, cancer drug revenue to doctors and hospitals increased from about $9 billion to nearly $36 billion, according to research by Aaron Mitchell of the Memorial Sloan Kettering Cancer Center. About half those profits came from immunotherapy drugs like pembrolizumab and nivolumab.

“Pembrolizumab is the lifeblood of American hospitals,” said Mark Ratain, a professor of medicine and chief hospital pharmacologist at University of Chicago Medicine. “That’s why you don’t see hospitals in this country running to do trials that test lower doses.”

Mark Ratain, a University of Chicago oncologist and clinical pharmacologist, battles what he sees as unnecessarily high dosages of high-cost cancer drugs such as Keytruda and Opdivo. (Taylor Glascock for KFF Health News)

Merck spokesperson Julie Cunningham said the drug’s dosage recommendations were based on extensive testing. “In a life-threatening and challenging disease such as cancer, it is critical that the dosing for a cancer therapy is established through well-designed clinical trials,” she said. “Changes in dose or duration that have not been similarly studied may potentially compromise the therapeutic effect.”

Still, some oncologists start their patients off slowly on any of a variety of cancer drugs, although there may be concerns about lawsuits by a patient or their survivors over a prescription of lower-than-labeled dosages.

Kathy Miller, a professor of oncology at the Indiana University School of Medicine, routinely starts metastatic breast cancer patients with 400 milligrams of Kisqali daily for three weeks (with one week off), rather than the 600 milligrams recommended on the label. Sometimes patients ask for the standard dosage.

“I have to tell them, ‘I don’t want to kill you,’” she said.

Insurers routinely challenge her lower-dosage prescriptions, Miller said, presumably because price rebates from the drug company are set to the standard dosage. To avoid endless phone battles with insurers, she prescribes 600 milligrams but tells her patients to take only two of the 200-mg pills and save the third for the next cycle.

Follow the Cures — And the Money

On May 31, at the annual meeting of the American Society of Clinical Oncology, or ASCO, at Chicago’s McCormick Place convention center, most of the audience of 8,000 rose in a prolonged standing ovation for the experimental drug daraxonrasib. Patients with pancreatic cancer who took the drug, according to the study presented that day, lived nearly twice as long — a median of 13 months — as those receiving chemotherapy.

The next day, in a slightly smaller hall, Amol Patel, a medical oncologist from New Delhi, discussed studies in various cancers in which 20- or 40-mg doses of nivolumab biweekly — one-sixth or one-twelfth the recommended dosage — gave Indian patients several months to a year longer survival than patients who underwent chemotherapy, and with fewer side effects.

Fewer than 100 people attended Patel’s talk.

The ingenious development of daraxonrasib was big news, since pancreatic cancer has been a death sentence until now. But from a global perspective, the news out of India might be just as important.

At the ASCO meeting, “the focus is always on the shiny new drug,” said Daniel Goldstein, an oncologist and drug policy researcher at the Rabin Medical Center in Israel who has fought for a decade, with some success, to lower pembrolizumab dosages in hospitals there and in other countries. “It can be quite lonely to be us,” he said, adding that he’s seen increasing appreciation of his work.

The data from India offered a glimpse of what could be. However, the studies Patel referred to compared ultralow-dosage immunotherapy to older chemo drugs; none compared ultralow doses against standard nivolumab or pembrolizumab treatments. In India, this would be a sterile exercise, because full-dose treatments are beyond the reach of any but the very wealthy, said Vanita Noronha, an oncologist at Tata Memorial Hospital in Mumbai.

Bristol Myers Squibb, or BMS, has a program to make its drugs available in lower-income countries. But the company hasn’t been involved in the lower-dose nivolumab trials and, in a statement to KFF Health News, said the evidence suggested that nivolumab at a lower dosage or shorter duration harmed patients.

While not all U.S. oncologists agree with BMS’ assertion, the Indian data is, to most, a mere curiosity. “Can we really give 20 milligrams as opposed to 240?” asked Jessica Bauman of the Fox Chase Cancer Center in Philadelphia. “The only way we know for sure is a randomized study between the low dose and the highest.”

And such trials are unlikely to occur. That means only poorer countries are going to host “this groundbreaking research,” said Ratain, who is also a cancer doctor at the University of Chicago Medical Center. “The Indians may have better immunotherapy than we do.”

Clinicians in Europe, where maximizing healthcare dollars has long been a priority, have taken a middle course, studying lower, but not ultralow, doses of immunotherapy.

Pulmonologist Michel van den Heuvel at Utrecht University is leading a study comparing the standard nivolumab dosage for lung cancer patients with one that is as much as 50% lower. He also considered giving the low doses half as frequently, but that would have raised ethical concerns and led to a more cumbersome research protocol, van den Heuvel said.

In the United States, researchers led by a group at the Dana-Farber Cancer Institute are taking another tack: evaluating whether patients who’ve done well on 27 weeks of pembrolizumab can stop taking it, rather than doing the additional six months per FDA protocol.

At the Veterans Health Administration, which has more leeway in testing money-saving medical procedures, doctors saved $1.5 million, about 10% of the previous pembrolizumab cost, over two years at three Veterans Affairs hospitals where they implemented a pilot program to dose patients less frequently, said Garth Strohbehn, a University of Michigan oncologist who also works at the VA.

It saves money and requires fewer visits for veterans who often live hours from the hospital, he said. “It also helps other patients because it opens more slots for infusion.”

Julie Gralow, ASCO’s executive vice president and chief medical officer, has made testing dosage a priority. She’s working with scientists in India on an ambitious clinical trial to compare standard nivolumab with four lower dosage levels.

She’s also leading an $11 million trial, supported by the federally funded Patient-Centered Outcomes Research Institute, to see whether breast cancer patients can be effectively started on lower doses of the drugs Kisqali and Ibrance, which, along with Verzenio, are in a class of key breast cancer drugs known as CDK4/6 inhibitors.

“We want to maintain efficacy. But we also want patients to have excellent quality of life,” she said. Especially for patients with advanced cancers, where absolute cure is unlikely, “it’s our job to make sure we’re not compromising quality of life with higher doses that are unnecessary.”

In 2021, at Ratain’s urging, Richard Pazdur, who led the FDA’s cancer drug division for many years, launched Project Optimus, intended to get companies to conduct dosing studies that are more precise before launching the large clinical trials they use to obtain FDA approval for new drugs.

The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug is approved, and by law the agency does not influence drug pricing, says Emily Hilliard, a Department of Health and Human Services spokesperson. (Valerie Plesch/Bloomberg via Getty Images)

The agency issued nonbinding guidelines for dosing studies in 2024 and has incorporated Project Optimus principles into the approval process for new cancer drugs, said Health and Human Services spokesperson Emily Hilliard. For example, two dosing regimens were evaluated for each of four lung cancer drugs (fam-trastuzumab deruxtecan, tarlatamab, zongertinib, sunvozertinib), and the lower dose with fewer toxicities was approved in each case, she said.

The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug’s approval, Hilliard noted. And by law the agency does not influence drug pricing, she said.

Future drugs should have better dosage information, Bauman said, but “newer drugs will probably be just as expensive at lower doses.”

Financial Toxicity

Verzenio’s side effects made Allegra Warfield feel so sick, tired, and bewildered, she said, that she considered suicide. She switched to Kisqali, which was tolerable until last September, when coverage of the drug stopped despite her monthly premium payment of $6,000. The cash price for Kisqali was at least $16,000 a month.

After fighting her insurer for three months, Warfield, 42, sold her house and belongings in Palm Desert, California, and moved with her fiancé to Durham, North Carolina, where they’d found what they considered a reasonable insurance plan.

The cancer, the side effects, and the unpayable bills were bad enough. The lack of good answers for her treatment made everything worse, she said.

“I was left to research these medications on Facebook and Reddit. The only people talking about the daily reality of these drugs were other patients,” she said. “But I wanted the studies. I wanted practical guidance.”

Stories like these launched a new life mission for Kelly Shanahan, who was an OB-GYN in South Lake Tahoe, California, until side effects from a breast cancer drug caused her to lose sensation in her hands. Unable to practice medicine, Shanahan became a patient advocate who works with a group called the Patient-Centered Dosing Initiative. In 2021, Shanahan developed profound fatigue (“worse than caring for a newborn baby while being on call in my solo practice”) within a few weeks of going on Ibrance. Lowering the dosage caused her worst symptoms to lift, she said.

After gathering countless anecdotes, her group has approached drug companies seeking data — so far with little success — that might indicate what percentage of patients have needed dosage reductions, and how they fare on lower doses.

“If going down two dose levels cuts effectiveness by 50%, patients need to know that while making decisions. If it doesn’t, they need to know that,” Shanahan said — even if it means “the companies won’t make as much money.”

Shanahan suggested the data could be found in clinical trials and postmarket studies. But if drug companies won’t provide the necessary studies, Manski said, governments should.

“The knowledge to be gained is a common good,” he said.

Manski’s research, focused on how people deal with conditions of uncertainty, helped him decide whether to stay on a melanoma treatment after it caused severe side effects. (Taylor Glascock for KFF Health News)

Has an insurance company or pharmacy benefit manager refused to cover a drug an oncologist recommended or prescribed for you or a loved one because the cancer is unusual or rare and lacks clear guidelines? Click here to contact KFF Health News’ reporting team.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.