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Baby Goats From a Traveling Petting Zoo Test Positive for Rabies

Farm Adventures of Harmony, N.C., owned the goats, state health officials said. It was unclear how many people might have been exposed to them since late July.

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With Midterms Looming, Journalists Consider Measles, Food Recalls, and Obamacare

Céline Gounder, KFF Health News’ editor-at-large for public health, discussed fatal measles cases on CBS News 24/7’s Mornings on Aug. 26. Gounder fact-checked Centers for Medicare & Medicaid Services Administrator Mehmet Oz’s comments about vaccines and drug prices on CBS News 24/7’s The Daily Report on Aug. 24. She also discussed food recalls this summer on CBS News 24/7’s The Takeout With Major Garrett on Aug. 24.

KFF Health News chief Washington correspondent Julie Rovner discussed kindergarten vaccination rates on WNYC’s The Brian Lehrer Show on Aug. 25.

KFF Health News contributor Mark Kreidler discussed the use of artificial intelligence for Medicaid reenrollment on KVPR’s Central Valley Daily on Aug. 24.

KFF Health News senior correspondent Julie Appleby discussed the state of the Affordable Care Act on Vox’s Today, Explained podcast on Aug. 24.

KFF Health News Georgia correspondent Briah Lumpkins discussed the importance of healthcare policy in upcoming elections on WUGA’s The Georgia Health Report on Aug. 21.

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.



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An Experimental Single-Time Treatment Slashed Cholesterol for a Year

A small gene-editing study significantly reduced LDL cholesterol levels, and the results have stuck a year later.

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High Fertility Costs Push Americans Abroad for IVF Treatment

In the summer of 2024, Emilie and Justin Solomon found themselves on a top-secret mission in Greece.

Their family and friends thought the adventure-loving couple was on another jet-setting vacation, but they were keeping something else under wraps: They had turned off their phone locations to hide visits to a Greek clinic where they were trying to get pregnant.

The Solomons are among the growing numbers of Americans looking abroad, particularly to Greece and Spain, to escape the high cost of fertility treatments in the U.S., where such procedures are often not covered by insurance. The treatments include in vitro fertilization, which involves ovulation stimulation, retrieving the eggs, fertilizing them in a lab, and transferring the embryos into the uterus. Other less intensive medical therapies also address infertility.

A man and woman pose for a selfie on sunny day in a rocky landscape in Greece.
Emilie and Justin Solomon visited Greece for IVF treatment in 2024 after they were quoted $40,000 for one round of treatment in Florida. (Emilie Solomon)

President Donald Trump has made fertility, and IVF in particular, a focus of his administration’s agenda after he promised total coverage for women during his 2024 campaign. His administration proposed a rule in May intended to make it easier for employers to offer fertility coverage, although it has yet to be finalized. So far, the most concrete result has been lower costs for some IVF medications through TrumpRx, a site where cash-paying patients can find some discounted medicines through participating pharmacies. The White House projected that patients could save up to $2,200 per IVF cycle.

While significant, those savings are up against a 90% rise in IVF medication costs since 2014, according to GoodRx, a prescription discount service. A study of insured Americans released in July by Axene Health Partners and the Women’s Reproductive Health Foundation found that the overall cost for a cycle of IVF was over $29,000 — or 35% of the median annual household income in the U.S. Genetic testing, embryo storage, pregnancy care, and delivery costs can push the total over $54,000 per IVF-conceived birth, according to the study. An average patient needs two to three cycles to successfully have a child, so the costs for many patients would be even higher.

Infertility affects nearly 7 million people in the U.S., but only an estimated 24% of treatment needs are met, because of those high costs and limited insurance coverage, according to the American Society for Reproductive Medicine. The condition is believed to be rising partly because of people having children later, as well as environmental factors such as pollution.

Still, more than 100,000 babies were born via IVF in the U.S. in 2024 — a record, according to the Society for Assisted Reproductive Technology. An increasing share of people hoping to be parents are seeking help in Europe: The number of Americans choosing European clinics grew by more than 37% last year, according to Jakub Dejewski, the chair of the European Fertility Society, a group that tracks data on fertility treatment in Europe.

The Solomons knew IVF was their only chance to have children together biologically, because Justin had testicular cancer in his late teens. What the college sweethearts had not expected was the cost — and they learned early in their IVF journey that their insurance would not cover their treatment. While some states have passed laws to require insurers to pay for some fertility care, the coverage varies widely.

When the couple first explored IVF in Florida, where they live, they were quoted $40,000 for one round of treatment. The price shocked them, and Emilie said the clinic’s offer of a spring discount for an embryo transfer felt “off-putting.”

“They just kind of prey upon your hopes and dreams to be parents,” Emilie said.

Treatment Plus Island-Hopping Tours

The price of IVF and uncertainty around proposed personhood legislation in Florida, which the Solomons feared could jeopardize their control over their embryos, sent them to the Pelargos IVF Medical Group in Athens. There, in the first of two trips, Emilie underwent ovulation stimulation and egg retrieval.

Including medication, fertilization, storage, and the ultimate embryo insertion, the total treatment cost about $12,000, not including travel, according to the Solomons, a fraction of what they might have spent in America. That affordability drew the couple abroad, but so did the allure of sightseeing and experiencing a new country.

On that first trip, they spent a weekend between doctor appointments exploring the Greek island of Milos. Between Emilie’s hormonal injections, they rented a boat to explore the island. Their video from the trip shows them climbing the island’s striking white volcanic cliffs, and Emilie floating in the turquoise water of the Aegean Sea. Despite the emotional and physical toll of the IVF process, the couple remembers being in a little bubble, away from everyone, exploring a beautiful place.

“It was one of the best summers that we’ve had,” Emilie said.

A selfie of Emilie Solomon with her husband, Justin.
In Greece, the Solomons were able to get a round of the IVF treatment for about $12,000, not including their travel expenses. (Emilie Solomon)

When they traveled back to Greece for their embryo transfer in October 2025, they spent two days in Croatia.

IVF in Greece using a patient’s own eggs typically costs around $3,000 to $4,000, not including medication, so even with travel, it is often a fraction of what patients pay in the U.S.

“Americans choose Greece because they can access treatment that is more affordable, faster to begin, and well supported for international patients,” Dejewski said.

A professional headshot of Jakub Dejewski.
Jakub Dejewski, the chair of the European Fertility Society, which tracks data on fertility treatment in Europe, says the number of Americans choosing European IVF clinics grew by more than 37% in 2025 from the year before. (Dawid Linkowski)

Patients in Greece do face some legal restrictions: Embryo storage is time-limited, donor anonymity is standard, sex selection and embryo-transfer numbers are restricted, surrogacy access is limited for nonresidents, and patients must carefully consider documentation requirements if they plan to move embryos between Greece and the U.S.

Penny Ampatzi said she is clear about these legal differences when Americans consult with her clinic in Athens. Serum IVF offers to schedule airport pickup for patients, as well as island-hopping tours. Ampatzi, the co-founder and clinic director at Serum IVF, said the main draw for the dozen or so American patients her clinic sees each month is the personalized fertility treatment plans. Affordability is close behind. A cycle at her clinic costs just under $6,000, not including embryo freezing. Almost all of Serum’s patients are foreigners, according to Ampatzi.

“You consider that you have a good possibility of success, plus you don’t pay that high amount of money, and you also have combined the treatment with holidays — so it’s a ‘Why not?’” she said.

Not Without Risks

IVF costs in the U.S. have been driven up by a mix of inflation, a shortage of embryologists, a surge in demand after pandemic backlogs, and private equity ownership, Dejewski said.

William Kiltz, vice president of marketing and business development at U.S.-based CNY Fertility, said that the costs are becoming too far out of reach. “IVF is almost a treatment that only the top 1% can afford reasonably,” he said.

Kiltz said CNY’s model — offering IVF for around $8,000, not including embryo storage, at its 18 locations across the country — brings just enough profit to “keep the lights on” and open new locations while keeping its costs lower. “We’re trying to deliver this care at the absolute bare-minimum cost,” he said.

More than half of CNY’s patients travel from out of state in search of those lower-cost options, Kiltz said.

He said he hopes the IVF market will eventually settle out, as happens with many new technologies. But nearly five decades in, that normalization hasn’t come. Kiltz believes that’s because the market is so emotionally driven.

“People will do just about anything,” Kiltz said. “There’s certainly some risk in something like that, where the demand and the desire from a single individual is so strong that they could be taken advantage of.”

Tarita Pakrashi, the head fertility doctor at the CNY location in Norfolk, Virginia, pointed to the difficulties of trying to vet a clinic overseas when one doesn’t speak the language or understand the local IVF regulations. It also can be challenging to transport temperature-sensitive medication back home.

“It’s almost like a full-time job trying to play regulatory expert and inspector all at the same time, while you’re a patient,” Pakrashi said.

She said she also has had patients who sought treatment abroad return to her clinic struggling to transfer records or understand a diagnosis they received overseas. They often have to repeat tests.

And going abroad for IVF is still out of reach financially for many Americans.

The Solomons said seeking treatment overseas takes a certain type of adventurous spirit, too. But for them, all the logistics and travel were worth it. Their one cycle of IVF and two trips to Greece allowed them to welcome a healthy baby boy this summer.

A photo of Emilie Solomon in a hospital bed. She holds her newborn son in her arms. Her husband, Justin, is by the bed.
After undergoing one round of IVF treatment in Greece, Emilie Solomon gave birth to a son this summer in Florida. (Susie Urff)
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.



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Listen to the Latest ‘KFF Health News Minute’

The KFF Health News Minute is available every Thursday via direct download or the RSS feed.

Aug. 27

Katheryn Houghton [CATH-er-in HOW-tun] reads the week’s news: A wristband with the words “I Gave Birth” could be a lifesaving tool for new moms, and many homeless people will have to prove they’re working to stay on Medicaid.

Can’t see the audio player? Visit kffhealthnews.org to listen.

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.



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Americans Encounter Risks at Psychedelic Clinics Abroad

Participants, often in vulnerable states, have little recourse if mistreated or injured.

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Trump Puts Autistic Kids in the Spotlight and Cuts Agencies Built To Protect Them

At Chain of Lakes Elementary School in Winter Haven, Florida, Josette Smith’s 9-year-old son, Ethan, gets to do what he loves most: crafts, math, and science. That is, when he isn’t being pulled out of class.

Ethan has autism and attention-deficit/hyperactivity disorder. He was diagnosed with autism in kindergarten after displaying behavior that concerned his relatives: He paced, flapped his arms, and became consumed with highly specific interests, such as Martin Luther King Jr. and dachshunds.

In a meeting with school administrators and the district to develop his individualized education program, a legal agreement that outlines the support Ethan requires, the team agreed he required a trained paraprofessional to help him regulate his emotions and remain in class, according to complaints Smith filed against the school. However, the complaints alleged, administrators were unwilling to provide the dedicated aide. Instead of implementing the supports her son needed, his school repeatedly removed him from instruction, suspended him, and even called police on him when he was in third grade, Smith wrote.

Smith, a seventh grade science teacher, said she first filed complaints with the school district and the state with these allegations. But when problems persisted, she turned to the U.S. Department of Education’s Office for Civil Rights, the federal agency tasked with resolving complaints like hers. Smith’s federal complaint included the same account and alleged that the school discriminated against her son because of his disability and race, including deploying pressure tactics to push her Black son out of the public school. In May, the office said it would investigate several of her allegations.

For families who believe their child’s rights were violated based on race, disability, or gender in school, the federal agency often has been one of the main places to turn. But the White House cut its offices and weakened its ability to follow up with cases, as well as slashed funding to research on disparities that people of color face in getting diagnosed and attaining resources for disabilities.

About 1 in 31 U.S. kids by age 8 had been diagnosed with autism spectrum disorder as of 2022. Although previous research on disparities in childhood autism diagnoses has had mixed results, a recent study from the State University of New York at Albany’s Institute for Social and Health Equity found that race, gender, and socioeconomic gaps persist. Among fourth graders from 2003 to 2022, students of color, girls, low-income students, and multilingual learners were less likely than peers to be identified with autism in school, even as diagnoses rose among children from historically marginalized groups, the study found. A large forthcoming study by the same researchers found the biggest gaps among overlapping identities. Black and Hispanic girls were especially unlikely to be identified.

All this has happened as President Donald Trump’s second administration has put autism in the spotlight. In early August, Trump signed an executive order to whittle down routine immunizations for kids while falsely tying vaccines to autism. He has presented it as a personal priority and one of “the most alarming public health developments in history.” Health and Human Services Secretary Robert F. Kennedy Jr. in April 2025 called autism a “tragedy” that “destroys families,” and he’s lent credence to ungrounded claims of autism’s causes, including unfounded links to childhood vaccines and Tylenol during pregnancy.

“This administration is taking us backwards,” said Camille Proctor, founder and executive director of The Color of Autism Foundation.

HHS spokesperson Emily Hilliard said in an email that Kennedy’s statements last spring “emphasized the need for increased research into environmental factors contributing to the rise in autism diagnoses, not to stigmatize individuals with autism or their families.” She added that the agency changes are “about making federal support systems work better for children and families.” White House spokesperson Kush Desai did not respond to a request for comment. Neither did the press office for the Department of Education.

A child plays with toys at a table
Josette Smith filed a complaint with the federal Department of Education’s Office for Civil Rights on behalf of her 9-year-old son, Ethan, alleging that his school in Winter Haven, Florida, discriminated against him because of his disability and race. The office said it would investigate several of her allegations and dismissed others that the state had already reviewed. (Octavio Jones for KFF Health News)
A young boy jumps on a trampoline while his mother watches
Ethan was repeatedly removed from class, suspended, and charged with battery as a third grader at a public school in Winter Haven. (Octavio Jones for KFF Health News)

The cuts to agencies and research have affected parts of the federal government focused on students with disabilities. In March 2025, Trump signed an executive order to dismantle the Department of Education and closed seven of its Office for Civil Rights’ 12 regional offices. This June, his administration largely shifted special-education oversight to HHS and the Office for Civil Rights to the Department of Justice.

“On paper, it’s a reorganization,” said Nancy Potter, a former supervising attorney at the Office for Civil Rights who now runs her own education law firm. In practice, she said, it could leave families whose complaints involve overlapping harms — such as race and disability discrimination — caught between agencies built for different jobs. “The hardest thing to prove in these cases is now the thing with no obvious home.”

In April, a year after the order, a Senate committee report from Sen. Bernie Sanders (I-Vt.) concluded that the Office for Civil Rights had reached a 12-year-low in resolutions to discrimination complaints and had a backlog of nearly 12,000 civil rights cases. A recent Washington Post investigation found that the Trump administration “indefinitely froze” many of these cases.

On top of those cuts, the White House vowed to stop “equity” investigations in areas such as school discipline despite research showing that nonwhite and low-income kids disproportionately face barriers to being identified with autism and attaining resources for the condition and other neurodevelopmental diagnoses.

It also decimated the Institute of Education Sciences, the Department of Education’s research arm, canceling roughly $900 million in funding for research, including long-standing data collection in schools. The administration further proposed ending data collection on racial disparities in school discipline. The National Institutes of Health and National Science Foundation have purged projects referencing terms including “race” and “gender,” gutting research focused on diversity, equity, or inclusion.

“If we’re cutting any data collection that helps us understand the problem, we’re not going to fix it,” said Paul Morgan, director of the Institute for Social and Health Equity at SUNY-Albany, who led the studies on disparities in autism diagnoses. “All we’re doing right now is making the situation worse.”

The nation’s influential federal autism panel also appears to lack prominent scientists and Black members and has fewer autistic self-advocates than before, said Proctor of The Color of Autism Foundation, who served on the panel before the Trump administration took over. The panel has also been criticized for including vaccine opponents.

HHS’ Hilliard said the members “bring decades of experience in autism research and clinical care” and are committed to aligning “federal policy with gold-standard science.”

Disability advocates say federal officials are focused on the wrong priorities.

“All of it creates chaos where chaos is not necessary,” said Cameron Lynch, a former policy analyst for the Autistic Self Advocacy Network.

A woman sits on a couch
Josette Smith’s son was diagnosed with autism in kindergarten after displaying behavior that concerned his relatives: He paced, flapped his arms, and became consumed with highly specific interests, such as Martin Luther King Jr. and dachshunds. (Octavio Jones for KFF Health News)

Disability rights advocates fear the changes to special education oversight weaken the federal safety net for autistic students and others with disabilities, making these systems more confusing when families need help enforcing students’ rights.

David Sitcovsky, Autism Speaks’ vice president of advocacy, said families, especially those from marginalized communities, already often lack support for their children to receive a timely diagnosis or services in their school systems.

“The common thread across these issues is access,” Sitcovsky said. “If their child’s rights are not being upheld, do they have a clear path to get help?”

Smith awaits a decision about her federal civil rights case, which she was told could take more than a year amid the backlog, as Ethan has started fourth grade. She wants Ethan transferred to a school better equipped to support him. She has also requested an expedited hearing for a due process complaint she filed with the state.

The family is also navigating battery charges against Ethan, the first of which was filed in March after the school called police on him for allegedly hitting staff. A police report and an email provided by Smith showed that police arrived at her door hours after Smith informed the school district in writing that she had filed a federal discrimination complaint. Smith also pointed out the timing in several of her complaints.

A Polk County Public Schools spokesperson declined to comment, citing student confidentiality. The Florida Department of Education did not respond to a request for comment.

“As a Black mom, you dare not complain about anything,” Smith said. “Once you start advocating for your kids, it’s a problem. But it’s not these kids’ fault that they have a disability.”

Without timely assessments and interventions, studies show, children of color with disabilities such as Ethan are disproportionately at risk of being funneled out of public schools and into the juvenile and criminal justice systems.

Catherine Lhamon led the Education Department’s Office for Civil Rights in the Obama and Biden administrations and is now executive director of the Edley Center on Law & Democracy at the University of California-Berkeley School of Law. She said it’s a scary time for families who want to protect their children’s rights.

“People speed if they don’t see a police car,” Lhamon said. “If they think that there’s no one at the federal government watching them in school, we will see an increase in discrimination.”

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.



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Some States Banned the Use of Food Stamps to Buy Soda. Did It Work?

A study shows a modest decline in soda purchases, but it’s not clear that the results will hold up in the long run.

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The Medicare GLP-1 Discount Has One Big Catch: Some Sick Patients Don’t Qualify

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.

A medical device used for obstructive sleep apnea sits on a table.
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)
An older man puts on an oxygen mask that is connected to a medical device for sleep apnea.
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.

An older man wearing a plaid shirt with suspenders sits on his front porch with his hands resting on his cane.
“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.



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Why Getting High Has Only Gotten Cheaper

The “war on drugs” sought to reduce substance abuse by driving up prices and lowering demand. Today, street drugs are less expensive and more dangerous than ever.

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Ebola Is Still Killing in Central Africa. These Groups Are Working To Save Lives.

Misinformation and distrust are among the challenges facing public health workers in the Democratic Republic of Congo as they confront the second-deadliest Ebola outbreak on record. Even though the virus has faded from U.S. headlines, key organizations are still at work providing medical care and training to counter the spread of the disease.

Since the World Health Organization’s May 17 declaration of a public health emergency, over 5,200 cases of the Bundibugyo strain of the Ebola virus have been confirmed and more than 2,500 people have died in Congo, according to the U.S. Centers for Disease Control and Prevention.

More than 550 people were in isolation with Ebola in Congo as of Aug. 7, the country’s National Public Health Institute said. Twenty cases and two deaths were reported in neighboring Uganda as well, but no new cases have been reported there since June 21, the World Health Organization said.

The worst Ebola outbreak in history, which hit several countries in West Africa from 2014 to 2016, claimed over 11,300 lives.

The current outbreak is only the third of the Bundibugyo strain in central Africa. Congo officials are reporting a 44% fatality rate for the rare strain, which does not yet have a vaccine. Military conflict in eastern Congo, where the outbreak is centered, has made the medical response more difficult.

“When everybody became aware of what was happening, we were already months behind where we should have been as a global community in stopping the spread of this disease,” said Erica Tavares, a senior director of the International Medical Corps.

The U.S. has pledged $512 million in direct aid in response to the outbreak and enacted a travel ban, temporarily preventing non-U.S. citizens traveling from the affected region from entering the country.

Meanwhile, public health workers in Congo continue to toil against Ebola.

Below, KFF Health News profiles five organizations involved in the ongoing public health work there. A fraction of the groups working in Congo, they’re a mix of smaller, local organizations and larger, internationally known groups.

1. Africa Centres for Disease Control and Prevention

Africa CDC is the African Union’s public health agency, in charge of helping health institutions in its member states with disease threat detection and response. With the WHO, Africa CDC announced a joint Ebola response plan on June 5. The organizations said they would need more than $500 million over the following six months for the effort.

Their primary goal is to strengthen cross-border communication and collaboration under a unified “One Response” plan. Africa CDC has released guidelines for travel and public gatherings, urging people to implement prevention methods including avoiding contact with bodily fluids instead of issuing blanket travel restrictions to affected areas.

2. Congo’s National Institute for Biomedical Research

This subagency within the Congolese Ministry of Public Health is tasked with monitoring and documenting the virus. Institute officials are conducting on-the-ground testing and have set up laboratories in Ituri province, the area hardest hit by the virus.

In July, the agency said it had also stepped up detection and monitoring of the virus’s evolution. Genomic surveillance, or analyzing the virus’s genetic code, is an “essential tool” for containing the virus, officials said in a news release. It also helps with vaccine development, which is underway with trials of potential vaccines.

3. Doctors Without Borders

Doctors Without Borders has worked in Ituri for over two decades responding to humanitarian and medical crises. The well-known international organization provides emergency medical aid, as well as disease surveillance.

Kate White, an emergency medical coordinator for the organization, is working in Bunia, the capital of Ituri. In a phone interview, she said the financial stability and size of MSF, the abbreviation for the group’s French name, enable it to work with partner organizations in the region to distribute resources and care. More than 1,400 MSF workers are responding to the current Ebola outbreak.

Looking forward, she said, MSF will reinforce some of its existing programs, including providing general healthcare, to prepare for any additional spread of the Ebola virus.

4. International Medical Corps

Since mid-May, International Medical Corps members have provided case management and community education specific to Ebola and the current outbreak.

IMC operates rapid response teams in the region and has established treatment centers where patients can receive medicine and other care, as well as centers where people await test results.

“We’re also supporting the continuity of primary healthcare in the most at-risk regions,” Tavares said in an interview. “We want people to continue to come to facilities.”

The training of local health professionals is a focus of IMC’s work in Congo. It is also one way the organization partners with other entities, such as Africa Humanitarian Action.

“Historically, we’ve always had training as part of our response program,” Tavares said. “It means that [other organizations] will just have that much more capacity in the future and looking forward.”

Eventually, IMC-run facilities will be turned over to local healthcare leaders, Tavares said, and her hope is that the communities will then be better equipped to respond to future outbreaks. IMC also focuses on improving hygiene and water sanitation, she said.

5. SOFEPADI

SOFEPADI is a Congolese nonprofit that primarily serves women and girls. The women-led organization works to prevent gender-based violence, reduce inequality, and help women take charge of their own healthcare.

In the Ebola outbreak, SOFEPADI officials say, they are working to protect women. During past outbreaks, women have been overrepresented in Ebola deaths due to their increased exposure as caregivers in their communities. The functioning of communities, in turn, is dependent on the health of women. “If the women fall, the whole community falls with them,” SOFEPADI officials wrote in French in a June 1 post on their website.

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.



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Maker of Clear Eyes Recalls Nearly 40,000 Bottles Over Contamination Risk

Federal safety regulators said the maker of Clear Eyes Maximum Itchy Eye Relief voluntarily recalled the drops because of a “lack of assurance of sterility.”

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Nearly 40,000 Eye Drop Bottles Are Recalled Over Potential Contamination

Federal safety regulators said the maker of Clear Eyes Maximum Itchy Eye Relief voluntarily recalled the drops because of a “lack of assurance of sterility.”

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Journalists Highlight Innovations in Vaccines and Safeguarding Maternal Health

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.

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.

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.

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.

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.

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.



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5 Surprising Signs of Aging

Hint: You may need to buy new shoes.

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New DOJ Guidance Could Give States Cover To Cut Disability Services

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.



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Moderna’s Shift to Cancer Company Lifts Stock Up 177%

The company’s fortunes cratered as demand for Covid-19 vaccines plummeted. But it was busy working on something else.

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How Much of a Cancer Drug Is Too Much? Patients, Researchers Challenge FDA-Approved Dosages

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.

A photo of two IV bags as someone receives immunotherapy medication for melanoma treatment. The leftmost IV bag has "nivolumab" written on it.
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.”

A man stands in a garden area outside of his home. Foliage is seen blurred in the foreground.
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.

An exterior shot of the Food and Drug Administration headquarters.
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.

A photo of Chuck Mansku standing in his home.
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.



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What Is Treatment-Resistant Depression?

If multiple antidepressants haven’t helped, there are other avenues to explore.

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Former Fauci Adviser Pleads Guilty to Trying to Conceal Covid-Related Records

Dr. David Morens, a former N.I.H. official, admitted to attempts to conceal emails that discussed the origins of the pandemic.

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You Want To Join a Clinical Trial. Here’s What To Know About the Hurdles.

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.



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Baby Goats From a Traveling Petting Zoo Test Positive for Rabies

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