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.

Nurse Crystal Dhooghe is used to dealing with blood and broken bones in the emergency room. But she didn’t expect to witness so much violence against her own colleagues.

“I’ve seen nurses get shoved, pushed, scratched. The biggest one is bitten,” said Dhooghe, who works at Henry Ford Genesys Hospital in Grand Blanc, Michigan.

The prevalence of workplace violence in healthcare has fueled strikes in states such as Louisiana, New York, Pennsylvania, Rhode Island, and Michigan, where Dhooghe and many of her co-workers have been on the picket line since Labor Day last year.

“People will question me and be like, ‘Why are you still working in a place if you’re treated like this?’” said Dhooghe, who gets by on strike benefits and working extra shifts at another hospital. The problem, she said, is that other hospitals aren’t any better. “It’s the same everywhere I go.”

In a statement, Henry Ford Health spokesperson Dana Jay acknowledged violence against healthcare workers is a “national epidemic” and said the health system’s efforts to address the problem include metal detectors, armed security officers trained to make “misdemeanor arrests,” and de-escalation training.

“We have zero tolerance for violence of any kind,” said Jay, asserting the strike is not about safety but is instead “simply an economic strike.”

Nationwide, hospital workers are seven times as likely to be injured on the job due to violent acts as members of the general working population, according to the most recent data available from the Bureau of Labor Statistics. The outcry over workplace violence in healthcare is pitting workers’ demands for better compensation and staffing against hospital operators pressured to cut costs.

‘A Powder Keg’

Violent outbursts are so common that they’ve been dramatized on the popular medical TV series The Pitt. “Emergency rooms right now are like a powder keg,” said Rachel Odes, an assistant professor at the University of Wisconsin-Madison School of Nursing.

In hospitals, a combative or violent patient is known as a “code gray.” Outbursts can be spontaneous and unpredictable, making some almost impossible to prevent. But research shows the risk of violence increases when hospitals are understaffed or employees are insufficiently trained or experienced.

Mental health worker Andrew Kimball-Mirzaie said he got hurt in February 2024 at Butler Hospital in Providence, Rhode Island.

Andrew Kimball-Mirzaie, a mental health worker at Butler Hospital in Providence, Rhode Island, who says he was assaulted by a patient, participated in a three-month strike in spring and summer 2025. (Lynn Arditi)

He’d been working at the private psychiatric hospital for about six weeks and said he hadn’t yet worked in the ER. He said he was sent there to “monitor” a man in his 20s who was waiting for an inpatient bed.

The patient was alone in a back room watching a Knicks basketball game on TV, he recalled. Kimball-Mirzaie said he got the patient a drink and a snack. They were watching the game when, suddenly, he said, the patient stood up and punched him in the face. He said the assault left him with a concussion and broken nose. His injuries were documented in the hospital’s incident log.

“I understand that there is an inherent danger with the job,” Kimball-Mirzaie said. He doesn’t blame the patient, who was very ill at the time. “We should have had at least another staff member with us,” he said, “and I should have been adequately trained on the unit.”

The attack emboldened Kimball-Mirzaie to join some 700 other unionized Butler workers last spring and summer in a months-long strike, which forced the hospital to close nearly half of its beds. Service Employees International Union 1199 New England declared the strike a win.

Employees received wage increases that union leaders said would enable the hospital to attract and retain more staff. The hospital also agreed to provide financial support for workers violently injured on the job. And the hospital and union agreed to jointly fund a “time bank” to supplement workers’ compensation for injured workers who need more time to recover.

But five months later, a nurse supervisor at Butler had to call 911 because an unarmed patient in the hospital’s ER was assaulting staff. According to the police report, by the time police arrested the patient, he’d injured two nurses, a security guard, and a police officer.

“Butler recognizes the importance of being proactive in protecting those who provide care,” Mary Marran, Butler’s president and chief operating officer, said in a statement. She added that hospital leadership meets regularly with staff to review safety measures and “identify opportunities to strengthen protection for everyone.”

The patient was charged with four counts of felony assault, including against the two nurses.

The American Hospital Association has said punishment is key to preventing violence. It has been lobbying Congress to make assaulting healthcare workers a federal crime that would carry up to 10 years in prison. At least 45 states, including Michigan and Rhode Island, have enacted similar laws. But workplace safety experts say there is no evidence that such laws have reduced the incidence of violence against healthcare workers.

Catherine Maynard, a nurse at Butler Hospital, speaks at a union rally at the State House in Providence, Rhode Island, on May 23, 2025. (Steve Ahlquist)

Calls for ‘Safe Staffing’

Striking healthcare workers around the country often have demanded “safe staffing” instead of stronger punishments for patients who cause injuries.

The rise in violence against healthcare workers has caught the attention of the Joint Commission, the accreditation organization for more than 80% of U.S. hospitals and health systems. The commission released national performance goals that took effect in January and require hospitals to be properly staffed and that staff be trained “to provide safe, quality care.”

But no federal law limits the number of patients in a nurse’s care across healthcare settings, despite the nation’s largest nurses union, National Nurses United, having pressed for a national standard since 2018. Hospitals must “safely staff all units” to enable nurses to “provide the care that patients need before they get agitated or disoriented,” said Jane Thomason, lead industrial hygienist for National Nurses United.

Some states have passed their own staffing laws. Only California has enacted broad mandatory nurse staffing ratios, which research shows were associated with lower mortality rates and likely higher retention. Oregon enacted a staffing law, with exceptions. Legislators in Massachusetts and New Jersey have introduced similar bills, but they have failed to advance to floor votes.

The American Hospital Association opposes mandatory minimum nurse staffing ratios in hospitals, saying they would “remove real-time clinical judgment and flexibility,” compound staffing shortages, and potentially force some hospitals to turn away patients or delay care, spokesperson Colleen Kincaid said. And she pointed to California, whose new emergency nurse staffing ratios for psychiatric hospitals reportedly forced bed closures in at least four counties.

“There are a lot of other things you can do to prevent workplace violence than just increasing staffing levels,” said Jordan Barab, who was a deputy assistant secretary of labor for the Occupational Safety and Health Administration during the Obama administration and helped develop OSHA’s 2016 guidelines for healthcare and social service workers.

Barab said hospitals can, for example, train employees in de-escalation, install metal detectors, or have specially trained security guards on-site so staff don’t have to wait for police to arrive when an incident happens.

Debbie Berkowitz, a worker safety and health policy expert at Georgetown University, said the health provisions in congressional Republicans’ One Big Beautiful Bill Act will squeeze hospitals’ budgets in the next few years.

When funding dries up, she said, “protecting workers is going to be the first thing that gets cut.”

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

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

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

Tammy Chalala, a retired dietitian in New York, was thrilled with the results of her cataract surgeries, which left her with close to 20/20 vision.

She said she paid nearly $4,000 out-of-pocket for her two surgeries last year because she opted to have her doctor use a laser to assist with the procedure.

Chalala, 69, chose that method over the traditional scalpel after doing research online and consulting with her doctors, believing it would give her the best outcome. “It seemed like the better option,” she said.

Cataract surgery — one of the most common operations paid for by Medicare — typically leaves enrollees owing a few hundred dollars. Some patients pay more to have their vision corrected during the procedure.

But, like Chalala, a growing number of those patients are paying even more out-of-pocket simply because they agree to have their doctor use a laser rather than the scalpel method.

Both methods are safe and can significantly reduce or eliminate the need for patients to wear glasses.

However, many doctors say the laser helps make more precise cuts than the scalpel. The laser method gives patients more options, they say, and recoups more revenue as Medicare has gradually cut what it pays doctors for cataract surgery.

Others, such as Oliver Schein, an ophthalmologist at Johns Hopkins Medicine, point out the strong financial incentive to use the laser, as the equipment can cost a practice up to $500,000.

Schein said his colleagues used the laser a few years after it came out but did not see any benefit over traditional cataract surgery. Still, the laser doesn’t cause harm and provides patients with good results.

“That’s a powerful combination for a surgeon,” Schein said. But in the end, he added, most patients believe paying more will yield a better result.

Medicare pays doctors about $520 for a standard cataract procedure, down about 20% in the past decade. The fee includes pre- and postoperative visits.

While Medicare generally prohibits doctors from billing patients above what the government program pays, doctors are allowed to bill patients extra when using the laser only when it is used to improve vision, because most vision correction is not covered by traditional Medicare.

Specifically, doctors may bill patients when using the laser to insert premium lenses or fix astigmatism. Doctors typically charge $1,000 to $3,000 per eye for use of the laser.

Medicare enrollees also pay out-of-pocket for the premium lenses that can eliminate their need for reading or distance glasses, with charges ranging from $1,000 to $4,000.

Private insurers, including those operating Medicare Advantage plans, typically follow Medicare benefit rules.

Research shows the laser does not provide better outcomes than the scalpel for a standard cataract procedure.

The American Academy of Ophthalmology, the world’s largest organization of eye physicians and surgeons, says on its website: “Studies do not show that laser surgery results in fewer complications. Also, studies haven’t found that laser surgery provides better outcomes.”

Nearly 12% of the 5 million annual cataract surgeries performed nationally are laser-assisted, and that number has been growing, according to the St. Louis-based ophthalmic market data company Market Scope.

“It’s a win-win for patient and doctor,” said Kevin Miller, a UCLA ophthalmology professor. “Doctor makes a little more money on top of the Medicare reimbursement; the industry gets money to develop new technology; and society benefits because these patients are not going for eyeglasses anymore.”

By age 80, more than half of Americans have had cataracts, a condition that causes blurred vision and poor night vision. Most cataracts develop slowly as part of the aging process when proteins and fibers in the eye’s lens break down and clump together.

Doctors for decades have used scalpels to perform cataract surgery, which involves removing the cataract and replacing the cloudy natural lens with a clear artificial one.

Barbara Cobuzzi, 71, a medical billing consultant with traditional Medicare coverage, needed cataract surgery last year. When her eye doctor in New Jersey recommended she get the surgery using a laser at a cost to her of $1,500 per eye, she went looking for a second opinion. “I felt like he was trying to pull a fast one.”

Cobuzzi said the second doctor performed her procedure without a laser, and she was happy with the results, including no longer needing glasses for distance vision.

“Doctors are using the laser as a moneymaker,” she said.

Vance Thompson, an ophthalmologist who is a past president of the American Society of Cataract and Refractive Surgery, said some patients want the laser because it provides a more precise way of doing the surgery, while others choose it to avoid the need for glasses.

He said he talks to patients about the advantages of the laser and lets them decide which method is right for them. “They deserve to be educated on all their options,” Thompson said.

He said about half his patients at his Sioux Falls, South Dakota, practice choose the laser, up from about 10% a decade ago.

The laser is not suitable for all patients, though, including those who have corneal scarring or a small pupil, Thompson said.

It’s challenging to illustrate the benefit of the laser because traditional cataract surgery is already safe and effective, with low infection rates, said Barrett Eubanks, a U.S.-trained ophthalmologist in Toronto.

He said he’s found that, compared with the older method, using the laser makes it easier to implant premium lenses or remove certain types of cataracts. That’s because the laser can make the exact cut it’s programmed to make, unlike the human hand.

Miller, the UCLA ophthalmologist, said the laser helps bring money to his practice as Medicare reimbursement continues to decline. “One of the problems with ophthalmology is everybody is scrambling to keep the lights on,” he said.

Miller said his practice has offered laser cataract surgery for several years. He compares the choice to buying a Toyota Camry or buying a Lexus. “Both will get you where you want to go, but one will get you there with a premium feel and leather seats,” he said.

He said his patients know they can choose the surgery without a laser. “We do not pressure anybody to do anything,” Miller said.

At his practice in an affluent part of Los Angeles, he said, 80% of patients opt for laser cataract surgery. “What you buy with a laser is precision and reproducibility, as every laser cut looks exactly the same,” he said. “It does not make vision better.”

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.

Connecting people with clinical trials is complicated — even if people identify a promising match, there’s a slew of potentially thorny factors, including geographic incompatibility, and financial and time considerations.

Simply finding an appropriate trial can present an enormous hurdle. In a recent online survey of more than 2,000 adults, 71% of patients with chronic conditions said they would be likely to participate in a clinical trial if given the chance. But two-thirds said that their healthcare provider had never discussed clinical trials with them. According to one study using data from 2020, just 9% of adults reported ever being invited to participate in a clinical trial.

Clinical trials are essential to the development of new and effective medical treatments. But gathering the real-world human data necessary to win Food and Drug Administration approval for drugs, devices, and other interventions can be an arduous task. By one estimate, up to 86% of clinical trials don’t meet their recruitment targets during the trial time frame.

Getting people signed up isn’t the only challenge.

“Recruitment is one thing — retention is another,” said Alan Balch, executive board chair at the Patient Advocate Foundation, which has a clinical trial search tool and maintains extensive educational materials online. “Every touchpoint is an opportunity for access and affordability to be a problem.”

The need to improve patient participation in clinical trials is not a new concern, but it’s attracting new interest.

In June, the Department of Health and Human Services announced an effort to streamline and enhance clinical research in the United States. It included a public request for information about whether to modify federal rules that currently deter some trial sponsors from paying clinical trial participants for expenses such as travel and lodging.

In July, a group of nearly 200 patient advocacy and public health groups sent a letter to the Senate sponsors of the Clinical Trial Modernization Act, urging its passage. The bill would allow trial sponsors to cover trial participants’ medical costs, such as insurance deductibles and copays, and nonmedical expenses like travel and childcare. It would also exclude up to $2,000 in financial support for clinical trial participation from federal taxes, so people wouldn’t risk losing their eligibility for Medicaid or other income-based programs if they signed on.

While these efforts to improve clinical trials and patient participation are ongoing, here are answers to some questions about how the system works now and what patients can do if they want to take part.

Why Be a Guinea Pig? Understand the Facts

In some trials, some participants are given a new drug or therapy that’s being investigated while others receive a placebo with no physical effect.

But there are many types of clinical trials. Some test different drug combinations, for example. They can test medical devices, preventive measures such as vaccines, or lifestyle changes. Others test ways to screen for or diagnose medical conditions.

For people with very serious illnesses, a clinical trial may offer the best hope for extending their life or improving their quality of life.

“Cancer is often a fatal disease, and clinical trials offer an opportunity to try something that may or may not be better,” said Mark Fleury, the policy principal for emerging science at the American Cancer Society Cancer Action Network. “If you know the existing standard of care has an average survival of eight months, you want something with a better opportunity.”

In addition, even if patients don’t receive the therapy being tested in the clinical trial, they are monitored closely throughout and receive the gold standard of care, which they might not receive elsewhere, patient advocates said.

Some people decide to participate in trials to aid in advancing science.

Jim Taylor’s wife, Geri, died of Alzheimer’s disease two years ago, more than a decade after her diagnosis in 2012. The couple became advocates for people with the disease, and Taylor is continuing that effort. He’s currently participating in three observational Alzheimer’s trials that are employing cognitive tests and scans to track how his brain is changing compared with the brains of people who’ve been diagnosed with the disease.

“The reason I’ve done it is so I can explain to people, with some authenticness and experience, what a trial is like,” he said.

Finding a Clinical Trial

Despite widespread interest in clinical trial participation, most patients don’t know how to find one.

They can’t necessarily count on their doctors for help. According to an online survey of just over 500 primary care physicians in March, sponsored by the Patient Advocate Foundation, even though 86% of respondents said they were somewhat or very likely to refer their patients to a trial, only 37% had ever done so. When doctors did discuss clinical trials with their patients, it was usually because they had asked about them (67%), they weren’t responding to standard treatment (65%), or their disease was progressing (55%).

But for time-strapped doctors, identifying clinical trials for which patients might be eligible isn’t a simple task. A community oncologist, for example, would typically have to conduct a search using one of the available clinical trial search engines (clinicaltrials.gov is the most comprehensive), type in all the patient’s characteristics, look at the trials that might be appropriate, and call the site to ask whether the trial is still open, Fleury said.

“And if they’re successful, what happens? They lose their patient,” he said.

Patients may have an even tougher time searching for trials on their own. Some patient advocacy groups have in-person or online navigators that can help people identify trials they might be eligible for.

The American Cancer Society has a clinical trial matching service, for example. Organizations such as the Arthritis Foundation and the National Multiple Sclerosis Society have information about disease-specific trials on their websites.

If a hospital or health facility is part of a clinical trial, patients there are often best positioned to enroll. Patients can ask their doctor or the facility for more information.

“Most recruitment for a trial happens at the site where the trial is happening,” Balch said.

There’s a Trial, but You Can’t Enroll

Much of the clinical research in the U.S. is conducted at large, often urban, academic medical centers. It can be tough for patients to enroll in a trial at a site unless they live nearby or are already being treated there, according to clinical trial experts.

To participate in a trial, people generally have to meet periodically with the researchers conducting it. They may also need to get regular blood draws or imaging, or to answer questionnaires to monitor their progress.

“The number one barrier keeping patients out of trials is a lack of onsite clinical trials,” Fleury said.

A 2019 study that examined 8,893 cancer patients’ participation in clinical trials found that more than half (55.6%) didn’t have an available trial for their type and stage of cancer at the medical facility where they were being treated. An additional 21.5% didn’t meet the eligibility criteria for an available trial.

If a patient identifies a clinical trial at a viable location and wants to be considered, the patient should contact the trial recruiters directly and ask them, Balch said.

“That’s just the beginning,” he said. Patients also need to find out whether they meet a trial’s eligibility requirements and whether it’s covered by insurance, and to consider how they’re going to pay for any medical or nonmedical costs.

Recently there’s been a lot of interest in decentralized access to clinical trials, so patients could do at least some of the trial tasks at home or at their local cancer center, for example.

“It’s not common yet,” Balch said. But if decentralization grows, he said, it will open up the opportunity to more patients — and more representative groups of patients.

There’s a Trial, but You Can’t Afford It

If someone participates in a clinical trial, the trial sponsor picks up the tab for costs stemming directly from the trial, including the drug or device being investigated.

In addition, under the Affordable Care Act, most commercial health plans are required to cover routine patient costs associated with participating in a clinical trial.

But that doesn’t mean members won’t owe anything. They are generally still responsible for any deductibles, copays, or coinsurance amounts for the routine care that they receive during a clinical trial. And the ACA doesn’t require plans to have out-of-network benefits. That means if a clinical trial is sponsored by a provider that is out of someone’s provider network, the plan might not cover those costs.

Medicare and Medicaid have similar requirements for coverage of routine clinical trial costs.

For some patients, incidental expenses can put participation in a clinical trial out of financial reach. Participants may face costs for travel to the trial site, parking, lodging, childcare, or taking time off work.

“There shouldn’t be an added set of concerns and disincentives around costs and financial toxicity,” said Wendy Selig, the founder and CEO of WSCollaborative, a healthcare consultancy. Selig is also the project lead for Equitable Access to Clinical Trials, which aims to eliminate incidental costs for patients in trials.

Some trial sponsors pay for incidental expenses but might not make that clear up front to patients who are considering participating.

Patients should take the initiative and ask, Selig said. “There may in fact be help, and you should take advantage of it if it’s available.”

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 U.S. Department of Health and Human Services added new peer support programs to the Title-IV Prevention Services Clearinghouse

Media round-up related to HHS food policy reforms to advance President Trump’s MAHA agenda.

It had been a rough few months. Cynthia Tompkins was hospitalized in May for osteomyelitis — a bone infection — then spent six weeks in a rehabilitation facility. “It was a struggle,” she said. “I didn’t bounce back too well.”

Tompkins returned to her home in San Diego, but she was still taking antibiotics, along with a host of other drugs for diabetes, pain, and blood clots. The deaths of her husband the previous year and her closest friend more recently had sapped her spirits.

In early July, a new symptom appeared: violent vomiting three times within about 24 hours. “I was so depleted,” she said. “I got weaker and weaker.” A friend who was visiting her called an ambulance.

“It’s the last place you think you want to go, the ER,” said Tompkins, 75, a retired teacher and family program director. She anticipated spending hours on an uncomfortable stretcher in a chilly hallway. Arriving at the emergency department at UC San Diego Health in La Jolla early in the morning, “I was in a knot,” she said.

But the place upended Tompkins’ expectations. Since 2022, this and every other adult ER in San Diego has been accredited as a geriatric emergency department, redesigned to address the specific risks and needs of older patients. It’s an approach, recent studies show, that can reduce hospital admissions and deaths among older adults and lower costs.

“They took me right to a room,” Tompkins said. She was transferred to a gurney with a thicker mattress to prevent bedsores and given blankets. “I got an IV right away because I needed fluids,” she said.

She was pleased that the small, curtained room, with sound-absorbing walls to lower the cacophony of emergency care, had a cushioned chair for her friend, who would stay with her, and a window looking out on trees.

The window served a medical purpose, too. Patients “can see whether it’s day or night,” said Denise Valenzuela, the geriatric emergency nurse assigned to Tompkins. “It prevents delirium,” the sudden change in mental status that can arise in hospitalized older patients and increase dementia risk.

Before long, “I just felt a calmness,” Tompkins said. “I felt, I’m where I need to be right now.”

Since 2017, the American College of Emergency Physicians has accredited 624 such geriatric emergency departments across the United States, including 73 in Department of Veterans Affairs medical centers. “A fairly exponential rate of growth,” said Kevin Biese, the emergency doctor who directs the Geriatric Emergency Department Collaborative.

Few of these units are restricted to older patients. Instead, like the ER in La Jolla, they serve all ages but incorporate senior-friendly practices and protocols in an environment aimed at staving off disorientation, falls, and other elder hazards. They’re classified from Level 1, for those fulfilling the highest number of criteria, to Level 3.

Adults 75 and older visit the emergency room at a higher rate than any other age group except infants: 76 visits per 100 people in 2022. Yet standard emergency care “wasn’t correctly designed for the needs of older adults,” Biese said.

The mission of a traditional ER is to speedily identify the central problem and either fix it or admit the patient to the hospital for ongoing care. “We ask, ‘What’s your chief complaint?’” Biese said. “You fell down the stairs and broke your leg.”

Older patients rarely arrive with a single ailment, however. Like Tompkins, most contend with several chronic conditions, take multiple prescriptions, and need a variety of tests and assessments. Trained geriatric emergency teams focus not only on the broken leg but on determining what caused the fall, and how to prevent another one.

“An emergency department doesn’t routinely screen for delirium” and cognitive impairment, said Ula Hwang, an emergency doctor and researcher at NYU Langone Health. “But it’s one of the first things geriatric emergency departments will do,” along with a careful review of all the patient’s medications.

Geriatric ERs also try to counter sensory impairment, another contributor to delirium, by distributing reading glasses and sound-amplifying devices. They dim glaring lights and offer eye masks and earplugs to promote sleep. If Tompkins had forgotten her walker, the unit would have lent her one.

These ERs also aim to address a rising concern in emergency departments: hours or even days spent “boarding,” when admitted patients wait for open beds before they can leave the ER.

“Prolonged boarding has increased among older adults,” said Cameron Gettel, an emergency doctor and researcher at the Yale School of Medicine, referring to waits that last over three hours. He is a co-author of a study on the topic published in Health Affairs Scholar.

Spending more time boarding isn’t merely uncomfortable or inconvenient. Researchers studied patients 75 and older in emergency departments across France. They found that those kept there overnight before moving to an inpatient ward had a higher in-hospital mortality rate (15.7%) than those admitted to a ward before midnight (11.1%). Overnight boarding was associated with more falls and infections, too.

What geriatric emergency staffers prefer, however, is to help patients avoid hospitalization altogether. “Admission may not be the best thing for an older adult,” Hwang said. “It might be the worst.”

Hospital patients, she said, are exposed to infections, staff errors, and the rapid deconditioning that accompanies days spent in bed. All pose a greater threat to older patients.

Previous studies have found reduced admissions from geriatric emergency departments, but most of those studies involved one or two hospitals. Now, Hwang and her team have used nationwide data from the federal “Health and Retirement Study” and Medicare claims for nearly 4,600 adults age 65 or up, comparing those treated in geriatric emergency departments with a matched group seen in standard ERs.

The differences were stark: Patients in the geriatric units had a 39% lower likelihood of hospital admission and a 38% reduction in mortality over 30 days. The geriatric ERs also saved Medicare up to about $3,000 a visit, according to an earlier study Hwang led.

So having more than 600 accredited geriatric emergency departments nationwide represents both great strides and — in a country with more than 5,000 emergency departments — missed opportunities, Biese said.

“I’d encourage people to ask why their hospitals don’t have an accredited GED,” he added, referring to a geriatric emergency department. “We should demand that.”

In La Jolla, Tompkins began feeling stronger. The intravenous fluids supplied anti-nausea medication and corrected the electrolyte abnormalities that her lab work revealed. She was able to sip water and juice and eat a few graham crackers.

A battery of other screens and scans found no serious concerns. After completing a geriatric assessment, Valenzuela, the nurse, suspected Tompkins hadn’t been eating well and was taking medications on a mostly empty stomach.

By about 6 p.m., Tompkins and her doctor agreed she could return home. She left the hospital with numbers to call for further help, and several staff members checked in by phone to see how she was doing.

Better, was her answer. “They took care of the whole me and put me on the right track,” Tompkins said. “I’m progressing. It’s slow, but I’m OK.”

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

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

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

HHS launched the Systems for Tracking and Resilience in Efficient Agricultural-input Management program

HHS announced $96.7 million in grants and cooperative agreements to strengthen behavioral health services.

HHS announced the latest action to advance a major shift in the federal government’s approach to homelessness.

SAN FRANCISCO — At a Walgreens in this city’s bustling Japantown neighborhood, pharmacist Margaret On stocks two boxes of long-acting insulin pens from California’s new prescription drug label, CalRx, emblazoned with the state’s iconic grizzly bear.

Although she hasn’t dispensed any, On plans to keep them on hand. “It’s good to have if a patient comes in and doesn’t have health insurance,” she said. “Or just in case of emergencies.”

Seven months after the launch of its own low-cost insulin brand, state health officials said California has distributed more than 120,000 five-pen packs of insulin glargine priced at $55 each, significantly less than the $89 to $411 that the state says most popular brand names charge before any retail markups or consumer discounts.

While it represents a tiny amount of the state’s insulin pipeline, it marks the first time a state is competing against the three biggest insulin drugmakers — Eli Lilly, Sanofi, and Novo Nordisk — under its own prescription drug label. CalRx, Gov. Gavin Newsom’s experimental initiative, has dual aims: to act as an emergency supplier for people who are uninsured or can’t afford their prescriptions, and to disrupt the nation’s deep-pocketed pharmaceutical industry, which cost the U.S. $467 billion in 2024, the federal government reported in June.

Newsom, a Democrat considering a presidential run in 2028, is expected to make healthcare a central pillar of his national platform as he concludes his second and final term as governor. To create the state brand of generic drugs, California inked a $50 million contract with Civica, a Utah-based nonprofit drugmaker, to develop the CalRx insulin, known as a biosimilar. Though major distributors make the drug available in pharmacies around the state, uptake has been limited.

Newsom’s goal is to saturate the insulin market and offer generic versions of drugs either high in cost or low in supply, or that can improve public health. The state is also distributing free naloxone, used in a nasal spray to reverse opioid overdoses, and trying to bring albuterol inhalers to public schools for students with asthma emergencies. In the next two years, the state plans to launch epinephrine injectables, commonly known by the brand name EpiPen, which are used to treat severe allergic reactions, as well as a state-branded medication to treat tuberculosis.

Before he leaves office in January, Newsom said, he wants to add generic GLP-1 medications to compete with brand-name drugs such as Ozempic and Wegovy. The drugs have exploded in popularity, but employers have raised concerns about their cost.

Taking on drug costs is a winning political issue for both Democrats and Republicans, who have for years tried to rein in soaring healthcare spending as Americans feel the pinch of high prices at pharmacy counters, in doctors’ offices, and from health insurance premiums. The U.S. spends roughly twice as much per capita on prescription drugs as other industrialized countries. Six in 10 adults in the U.S. say they’re worried about being able to afford their prescription drug costs, according to a poll last winter by KFF, and 4 in 10 say they’ve tried to save money such as by skipping doses and not filling prescriptions.

In February, President Donald Trump launched TrumpRx to potentially lower out-of-pocket costs for consumers. But TrumpRx doesn’t produce drugs; rather, it directs consumers to find more affordable medications with coupons or on drugmakers’ websites. Newsom, in contrast, is trying to drive down the underlying price of medicines by increasing the manufacturing and availability of generic drugs.

While some people with diabetes may benefit from CalRx insulin, California’s generic drug effort is largely symbolic at this time, said Geoffrey Joyce, director of health policy at the Schaeffer Center at the University of Southern California. “There is some value, but it’s for a very limited number of drugs for just a fraction of the population,” Joyce said.

And TrumpRx isn’t helping at a large scale either, Joyce added, because many medications it advertises have cheaper generic versions available elsewhere. It would be better, he said, to develop large-scale initiatives that tackle key drivers of the high cost of drugs, for rare cancers for instance, and produce safer and higher-quality medicines.

“What you really need is a national effort that focuses on vulnerabilities like supply shortages and increasing the supply of generic products for higher-priced drugs,” Joyce said.

Market Disruptor

CalRx aims to make insulin more affordable and accessible for the nearly 3.7 million California adults diagnosed with diabetes. Newsom last year singled out the three major drugmakers that control more than 90% of the global insulin market, while also targeting intermediaries known as pharmacy benefit managers for promoting higher-priced drugs over cheaper generic alternatives.

Patients with health insurance often receive discounts at the pharmacy counter and do not pay sticker prices, yet those discount programs can be hard to navigate and patients can face restrictions. While drugmakers and pharmacy benefit managers said they’ve already initiated $35-a-month caps on out-of-pocket costs and pass price discounts on to consumers, Newsom argues that consumers still struggle to afford their medications.

He has criticized pharmaceutical companies for gouging Californians and contended that the industry’s discounting schemes don’t adequately address inflated prescription drug spending, which in the U.S. rose 7.9% in the most recent reporting year.

In his announcement last year that CalRx insulin would go on sale in January 2026, Newsom said the industry had been using discounts to distract consumers from solutions that could bring overall prices own. “One of the things that all of us should be increasingly concerned about is announcements around caps, announcements around discounts,” he said.

In January, California joined dozens of other states in setting insulin price caps. It also passed a law attempting to ban price inflation practices by pharmacy benefit managers.

Representatives for drug companies and pharmacy benefit managers said insulin is largely an affordable medicine in the U.S., arguing that consumers have benefited from discounts.

“While insulin prices, set solely by pharma companies, may be high in some instances, the amount patients are paying out of pocket has declined significantly,” said Christine Rex, senior director of state public affairs for the Pharmaceutical Care Management Association, which represents pharmacy benefit managers.

Reid Porter, a spokesperson for Pharmaceutical Research and Manufacturers of America, which represents brand-name drugmakers, said PBMs have driven up costs for consumers by excluding lower-cost medicines from their lists of covered drugs. “Too often, patients face a system in which insurers and PBMs exclude coverage of those medicines on formularies because of supply-chain incentives,” he said.

Where To Find CalRx Insulin

CalRx insulin has been slow to reach pharmacies around the state, and in interviews, patient advocates said many people with diabetes aren’t aware it’s an option.

In Sacramento, pharmacist Sharon Ngo, who works at a Safeway pharmacy, was surprised to learn that California had a long-acting insulin product on the market. She didn’t know that CalRx insulin was interchangeable with Lantus, which was on back order for roughly two weeks.

“I had no idea this was available,” she said as she took notes on a pad of paper. “We’re going to give this a try.”

CalRx insulin has a suggested retail price of $55 a pack and is available with or without insurance. California has inked deals with four health insurers to cover CalRx insulin on their health plan formularies, potentially making it cheaper, depending on copays. They include Anthem Blue Cross, Blue Shield of California, the Valley Health Plan for Santa Clara County employees, and the Federal Employees Health Benefits Program, according to the state Department of Health Care Access and Information.

Pharmacist Margaret On keeps two boxes of California’s new generic insulin product under the CalRx brand on hand in case of emergencies. (Angela Hart/KFF Health News)

Elizabeth Landsberg, the department’s director, said the state is working to get more insurers to cover CalRx insulin and to provide it at more pharmacies. The state doesn’t know how many boxes have been dispensed. However, Landsberg said it was more meaningful that the state had reached agreements with three major pharmaceutical wholesalers to distribute its product in California. Currently, CalRx insulin is available on Amazon and at Costco, as well as at some retail and grocery store pharmacies including CVS, Walgreens, and Walmart.

“What we’re really trying to do is change market behavior and offer both affordable and transparent pricing,” Landsberg said. “The rebates and discounts are hard for consumers to understand and can change at any time, so we are trying to be straightforward and say, ‘Let’s not play this shell game anymore.’”

Allan Coukell, chief government affairs and public policy officer at Civica, said the company first partnered with the state on long-acting insulin that helps patients keep blood sugar steady for 24 hours or more. Next, it plans to help California develop rapid-acting insulin, which is used to pull elevated glucose down within minutes, to compete with brand names such as Humalog and NovoLog.

Health insurance companies welcomed the state’s efforts, in part because they could help save money they pay out on prescriptions.

“Making this drug available is really about helping people improve their health,” said Paul Markovich, CEO of Blue Shield of California’s parent company. “And the more supply we can get on the market, the more we can get rid of the profit motives in the pharmaceutical industry.”

One July afternoon in the Southern California city of Corona, Chris Noble went to a CVS pharmacy to get a box of CalRx insulin. The pharmacist didn’t have any on hand, but Noble, a healthcare organizer with Type 1 diabetes, was told he could get a prescription filled in 24 hours.

“I have insurance, but I see myself using this if I’m traveling and something happens like my insulin pump malfunctions,” he said. “Now I know I can go to a CVS and get insulin within a day.”

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.