When the Indian Health Service can’t provide medical care to Native Americans, the federal agency can refer them elsewhere. But each year, it rejects tens of thousands of requests to fund those appointments, forcing patients to go without treatment or pay daunting medical bills out of their own pockets.

In theory, Native Americans are entitled to free health care when the Indian Health Service foots the bill at its facilities or sites managed by tribes. In reality, the agency is chronically underfunded and understaffed, leading to limited medical services and leaving vast swaths of the country without easy access to care.

Its Purchased/Referred Care program aims to fill gaps by paying outside providers for services patients might be unable to get through an agency-funded clinic or hospital, such as cancer treatment or pregnancy care. But resource shortages, complex rules, and administrative fumbles severely impede access to the referral program, according to patients, elected officials, and people who work with the agency.

The Indian Health Service, part of the Department of Health and Human Services, serves about 2.6 million Native Americans and Alaska Natives.

Native Americans qualify for the referred-care program if they live on tribal land — only 13% do — or within their nation’s “delivery area,” which usually includes surrounding counties. Those who live in another tribe’s delivery area are eligible in limited cases, while Native Americans who live beyond such borders are excluded.

Eligible patients aren’t guaranteed funding or timely help, however. Some of the Indian Health Service’s 170 service units exhaust their annual pool of money or reserve it for the most serious medical concerns.

Referred-care programs denied or deferred nearly $552 million in spending for about 120,000 requests from eligible patients in fiscal year 2022.

As a result, Native Americans might forgo care, increasing the risk of death or serious illness for people with preventable or treatable medical conditions.

The problem isn’t new. Federal watchdog agencies have reported concerns with the program for decades.

Connie Brushbreaker, a member of the Rosebud Sioux Tribe, has been denied or waitlisted for funding at least 14 times since 2018. She said it doesn’t make sense that the agency sometimes refuses to pay for treatment that will later be approved once a health problem becomes more serious and expensive.

“We try to do this preventative stuff before something gets to the point where you need surgery,” said Brushbreaker, who lives on her tribe’s reservation in South Dakota.

Many Native Americans say the U.S. government is violating its treaties with tribal nations, which often promised to provide for the health and welfare of tribes in return for their land.

“I keep having my elders here saying, ‘There’s treaty rights that say they’re supposed to be able to provide these services to us,’” said Lyle Rutherford, a council member for the Blackfeet Nation in northwestern Montana who said he also worked at the Indian Health Service for 11 years.

Native Americans have high rates of diseases compared with the general population, and a median age of death that’s 14 years younger than that of white people. Researchers who have studied the issue say many problems stem from colonization and government policies such as forcing Indigenous people into boarding schools and isolated reservations and making them give up healthy traditions, including bison hunting and religious ceremonies. They also cite an ongoing lack of health funding.

Congress budgeted nearly $7 billion for the Indian Health Service this year, of which roughly $1 billion is set aside for the referred-care program. A committee of tribal health and government leaders has long made funding recommendations that far exceed the agency’s budget. Its latest report says the Indian Health Service needs $63 billion to cover patients’ needs for fiscal year 2026, including $10 billion for referred care.

Brendan White, an agency spokesperson, said improving the referred-care program is a top goal of the Indian Health Service. He said about 83% of the health units it manages have been able to approve all eligible funding requests this year.

White said the agency recently improved how referred-care programs prioritize such requests and it is tackling staff shortages that can slow down the process. An estimated third of positions within the referred-care program were unfilled as of June, he said.

The Indian Health Service also recently expanded some delivery areas to include more people and is studying whether it can afford to create statewide eligibility in the Dakotas.

Jonni Kroll of the Little Shell Tribe of Chippewa Indians of Montana doesn’t qualify for the referred-care program because she lives in Deer Park, Washington, nearly 400 miles from her tribe’s headquarters.

She said tying eligibility to tribal lands echoes old government policies meant to keep Indigenous people in one place, even if it means less access to jobs, education, and health care.

Kroll, 58, said she sometimes worries about the medical costs of aging. Moving to qualify for the program is unrealistic.

“We have people that live all across the nation,” she said. “What do we do? Sell our homes, leave our families and our jobs?”

People applying for funding face a system so complicated that the Indian Health Service created flowcharts outlining the process.

Misty and Adam Heiden, of Mandan, North Dakota, experienced that firsthand. Their nearest Indian Health Service hospital no longer offers birthing services. So, late last year, Misty Heiden asked the referred-care program to pay for the delivery of their baby at an outside facility.

Heiden, 40, is a member of the Sisseton-Wahpeton Oyate, a South Dakota-based tribe, but lives within the Standing Rock Sioux Tribe’s delivery area. Native Americans who live in another tribe’s area, as she does, are eligible if they have close ties. Even though she is married to a Standing Rock tribal member, Heiden was deemed ineligible by hospital staff.

Now, the family has had to cut into its grocery budget to help pay off more than $1,000 in medical debt.

“It was kind of a slap in the face,” Adam Heiden said.

White, the Indian Health Service spokesperson, said many providers offer educational materials to help patients understand eligibility. But the Standing Rock rules, for example, aren’t fully explained in its brochure.

When patients are eligible, their needs are ranked using a medical priority list.

Connie Brushbreaker’s doctor at the Indian Health Service hospital in Rosebud, South Dakota, said she needed to see an orthopedic surgeon. But hospital staffers said the unit covers only patients at imminent risk of dying.

She said that, at one point, a worker at the referred-care program told her she could handle her pain, which was so intense she had to limit work duties and rely on her husband to put her hair in a ponytail.

“I feel like I am being tossed aside, like I do not matter,” Brushbreaker wrote in an appeal letter. “I am begging you to reconsider.”

The 55-year-old was eventually approved for funding and had surgery this July, two years after injuring her shoulder and four months after her referral.

Patients said they sometimes have trouble reaching referred-care departments due to staffing problems.

Patti Conica, a member of the Standing Rock Sioux Tribe, needed emergency care after developing a serious infection in June 2023. She said she applied for funding to cover the cost but has yet to receive a decision on her case despite repeated phone calls to referred-care staffers and in-person visits.

“I’ve been given the runaround,” said Conica, 58, who lives in Fort Yates, North Dakota, her tribe’s headquarters.

She now faces more than $1,500 in medical bills, some of which have been turned over to a collection agency.

Tyler Tordsen, a Republican state lawmaker and member of the Sisseton-Wahpeton Oyate in South Dakota, says the referred-care program needs more funding but officials could also do a “better job managing their finances.”

Some service units have large amounts of leftover funding. But it’s unclear how much of this money is unspent dollars versus earmarked for approved cases going through billing.

Meanwhile, more tribes are managing their health care facilities — an arrangement that still uses agency money — to try new ways to improve services.

Many also try to help patients receive outside care in other ways. That can include offering free transportation to appointments, arranging for specialists to visit reservations, or creating tribal health insurance programs.

For Brushbreaker, begging for funding “felt like I had to sell my soul to the IHS gods.”

“I’m just tired of fighting the system,” she said.

Have you had an experience navigating the Indian Health Service’s Purchased/Referred Care program that you’d like to share with KFF Health News for our reporting? Tell us here.

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Harris cast the tie-breaking Senate vote in 2022 for legislation that allows Medicare to negotiate drug prices for its more than 60 million beneficiaries. Before that, she was an aggressive regulator of the drug industry as California attorney general.

As president, Trump would likely retain Medicare price negotiations unless the pharmaceutical industry can come up with something more compelling that they’d put on the table, people close to him say. In his first term, he proposed various policies aimed at reducing prescription costs but had limited success with their implementation.

The drug industry could benefit, though, if Trump remains unable to advance such proposals.

“His efforts were largely fragmented and faced resistance from both the industry and lawmakers,” said Sergio Jose Gutierrez, a political strategist who has primarily worked with Democrats in the U.S. “The lack of a cohesive strategy and the limited ability to implement significant changes made his approach less effective compared to what a Harris-Walz administration could offer.”

The industry is increasingly under attack by lawmakers from both parties for drug prices most Americans regard as unreasonable, according to KFF polling, so the election outcome could be pivotal to drug companies’ fortunes. Their predicament is a sharp reversal from years past, when the firms enjoyed a reputation as being almost untouchable. For more than a decade, manufacturers successfully fended off proposals to let Medicare negotiate lower drug prices before losing the battle two years ago.

The shift in their political standing shows up in pharmaceutical companies’ contributions to candidates. An industry that gave three or four times as much to GOP candidates as to Democrats in the 1990s and early 2000s is now hedging its bets. So far in the 2024 cycle, drug companies have given $4.89 million to Democrats and $4.35 million to Republicans, according to OpenSecrets, a nonpartisan research group.

Harris has received $518,571 from the industry and Trump has received $204,748.

At the Democratic National Convention in Chicago last week, Harris and fellow Democrats touted their records on curbing drug prices. Harris supporters point to her past and present.

While she was California’s attorney general, she joined cases that resulted in nearly $7.2 billion (about $22 per person in the U.S.) in fines for drug companies.

Her vote to pass President Joe Biden’s Inflation Reduction Act paved the way not only for Medicare price negotiation but also an annual $2,000 cap on Medicare beneficiaries’ total drug spending and a $35 cap on their monthly insulin supplies.

“In the United States of America, no senior should have to choose between either filling their prescription or paying their rent,” Harris said Aug. 15 in her first joint appearance with Biden since he exited the presidential race.

She has promised to extend both the annual drug spending cap and the insulin price cap to all Americans with insurance, not just those on Medicare, if elected president.

Harris also backed a contentious policy that, in some instances, would empower the federal government to inject more competition into the marketplace by seizing the patents on some high-cost drugs developed with federal funds.

Doug Hart, 77, of Tempe, Arizona, has been spending about $7,000 annually on prescription drugs. A drug he takes to prevent blood clots will cost less under the Medicare price negotiations. The retired labor union president said the decrease will be considerable and it is one reason he backs Harris.

“The Republicans all voted against Medicare negotiation. Harris broke the tie in the Senate to allow it,” said Hart, who is a board member for the Arizona Alliance for Retired Americans, which works to mobilize returned union members and activists on progressive issues.

While Republicans as a party remain more friendly to the pharmaceutical industry, Trump has been willing to challenge GOP orthodoxy by taking action to combat high drug costs.

He sought during his administration to tie drug prices in Medicare to lower international prices, a proposal that the PricewaterhouseCoopers health research institute estimated would cost five drugmakers as much as $500 million a year. What was known as the “most favored nation” interim final rule was blocked because of legal challenges and later rescinded by the Biden administration.

Trump issued a rule setting up a path to import drugs from Canada and other countries, with Florida this year becoming the first state to get federal approval to import some prescriptions from Canada. But the state has been stymied by pushback from Health Canada, the Canadian government department responsible for national health policy.

And on his campaign website, Trump posted a video in which he questioned whether childhood health problems are the result of “overprescription” of medications.

“Too often, our public health establishment is too close to Big Pharma — they make a lot of money, Big Pharma — big corporations, and other special interests, and does not want to ask the tough questions about what is happening to our children’s health,” he said. “If Big Pharma defrauds American patients and taxpayers or puts profits above people, they must be investigated and held accountable.”

Trump hasn’t said much about drug prices in his 2024 campaign, but allies and former advisers say he remains committed to knocking down prescription prices if reelected.

He would likely focus on increasing generic and biosimilar competition, importing drugs made in the U.S. but sold overseas back to the U.S., and capping out-of-pocket insulin costs, according to former Trump administration officials. Other goals may be lowering prices for drugs in the Medicare 340B program, which requires drugmakers to provide outpatient drugs at reduced prices to eligible health organizations that serve lower-income and uninsured patients.

“The No. 1 issue he cared about while I was in the White House, and I continue to hear him talk about, is lowering drug prices,” said Theo Merkel, a senior research fellow at conservative think tanks Paragon Health Institute and the Manhattan Institute. Merkel was also a special assistant in the Trump White House. “I’m confident that will be at the top of the agenda,” he added.

Catherine Hill, a spokesperson for Pharmaceutical Research and Manufacturers of America, or PhRMA, said the industry trade group looks forward to collaborating with any future presidential administration.

She criticized the Biden administration’s plan for Medicare price negotiation as well as Trump’s plan to align U.S. prices with those in foreign countries. This month, the administration announced new, reduced prices for 10 drugs in the program following negotiations between the federal government and drugmakers. The lower costs take effect in 2026.

“Previous price controls adopted by the Biden administration threaten to stifle that innovation,” Hill said. “Undermining intellectual property protections and borrowing other countries’ price controls will further undercut innovation and threaten patients’ access to medicine.”

The new vaccine should provide some protection to everyone. But many healthy people who have already been vaccinated or have immunity because they’ve been exposed to COVID enough times may want to wait a few months.

COVID has become commonplace. For some, it’s a minor illness with few symptoms. Others are laid up with fever, cough, and fatigue for days or weeks. A much smaller group — mostly older or chronically ill people — suffer hospitalization or death.

It’s important for those in high-risk groups to get vaccinated, but vaccine protection wanes after a few months. Those who run to get the new vaccine may be more likely to fall ill this winter when the next wave hits, said William Schaffner, an infectious disease professor at Vanderbilt University School of Medicine and a spokesperson for the National Foundation for Infectious Diseases.

On the other hand, by late fall the major variants may have changed, rendering the vaccine less effective, said Peter Marks, the FDA’s top vaccine official, at a briefing Aug. 23. He urged everyone eligible to get immunized, noting that the risk of long COVID is greater in the un- and undervaccinated.

Of course, if last year’s COVID vaccine rollout is any guide, few Americans will heed his advice, even though this summer’s surge has been unusually intense, with levels of the COVID virus in wastewater suggesting infections are as widespread as they were in the winter.

The Centers for Disease Control and Prevention now looks to wastewater as fewer people are reporting test results to health authorities. The wastewater data shows the epidemic is worst in Western and Southern states. In New York, for example, levels are considered “high” — compared with “very high” in Georgia.

Hospitalizations and deaths due to COVID have trended up, too. But unlike infections, these rates are nowhere near those seen in winter surges, or in summers past. More than 2,000 people died of COVID in July — a high number but a small fraction of the at least 25,700 COVID deaths in July 2020.

Partial immunity built up through vaccines and prior infections deserves credit for this relief. A new study suggests that current variants may be less virulent — in the study, one of the recent variants did not kill mice exposed to it, unlike most earlier COVID variants.

Public health officials note that even with more cases this summer, people seem to be managing their sickness at home. “We did see a little rise in the number of cases, but it didn’t have a significant impact in terms of hospitalizations and emergency room visits,” said Manisha Juthani, public health commissioner of Connecticut, at a news briefing Aug. 21.

Unlike influenza or traditional cold viruses, COVID seems to thrive outside the cold months, when germy schoolkids, dry air, and indoor activities are thought to enable the spread of air- and saliva-borne viruses. No one is exactly sure why.

“COVID is still very transmissible, very new, and people congregate inside in air-conditioned rooms during the summer,” said John Moore, a virologist and professor at Cornell University’s Weill Cornell Medicine College.

Or “maybe COVID is more tolerant of humidity or other environmental conditions in the summer,” said Caitlin Rivers, an epidemiologist at Johns Hopkins University.

Because viruses evolve as they infect people, the CDC has recommended updated COVID vaccines each year. Last fall’s booster was designed to target the omicron variant circulating in 2023. This year, mRNA vaccines made by Moderna and Pfizer and the protein-based vaccine from Novavax — which has yet to be approved by the FDA — target a more recent omicron variant, JN.1.

The FDA determined that the mRNA vaccines strongly protected people from severe disease and death — and would do so even though earlier variants of JN.1 are now being overtaken by others.

Public interest in COVID vaccines has waned, with only 1 in 5 adults getting vaccinated since last September, compared with about 80% who got the first dose. New Yorkers have been slightly above the national vaccination rate, while in Georgia only about 17% got the latest shot.

Vaccine uptake is lower in states where the majority voted for Donald Trump in 2020 and among those who have less money and education, less health care access, or less time off from work. These groups are also more likely to be hospitalized or die of the disease, according to a 2023 study in The Lancet.

While the newly formulated vaccines are better targeted at the circulating COVID variants, uninsured and underinsured Americans may have to rush if they hope to get one for free. A CDC program that provided boosters to 1.5 million people over the last year ran out of money and is ending Aug. 31.

The agency drummed up $62 million in unspent funds to pay state and local health departments to provide the new shots to those not covered by insurance. But “that may not go very far” if the vaccine costs the agency around $86 a dose, as it did last year, said Kelly Moore, CEO of Immunize.org, which advocates for vaccination.

People who pay out-of-pocket at pharmacies face higher prices: CVS plans to sell the updated vaccine for $201.99, said Amy Thibault, a spokesperson for the company.

“Price can be a barrier, access can be a barrier” to vaccination, said David Scales, an assistant professor of medicine at Weill Cornell Medical College.

Without an access program that provides vaccines to uninsured adults, “we’ll see disparities in health outcomes and disproportionate outbreaks in the working poor, who can ill afford to take off work,” Kelly Moore said.

New York state has about $1 million to fill the gaps when the CDC’s program ends, said Danielle De Souza, a spokesperson for the New York State Department of Health. That will buy around 12,500 doses for uninsured and underinsured adults, she said. There are roughly one million uninsured people in the state.

CDC and FDA experts last year decided to promote annual fall vaccination against covid and influenza along with a one-time respiratory syncytial virus shot for some groups.

It would be impractical for the vaccine-makers to change the COVID vaccine’s recipe twice every year, and offering the three vaccines during one or two health care visits appears to be the best way to increase uptake of all of them, said Schaffner, who consults for the CDC’s policy-setting Advisory Committee on Immunization Practices.

At its next meeting, in October, the committee is likely to urge vulnerable people to get a second dose of the same COVID vaccine in the spring, for protection against the next summer wave, he said.

If you’re in a vulnerable population and waiting to get vaccinated until closer to the holiday season, Schaffner said, it makes sense to wear a mask and avoid big crowds, and to get a test if you think you have COVID. If positive, people in these groups should seek medical attention since the antiviral pill Paxlovid might ameliorate their symptoms and keep them out of the hospital.

As for conscientious others who feel they may be sick and don’t want to spread the COVID virus, the best advice is to get a single test and, if positive, try to isolate for a few days and then wear a mask for several days while avoiding crowded rooms. Repeat testing after a positive result is pointless, since viral particles in the nose may remain for days without signifying a risk of infecting others, Schaffner said.

The Health and Human Services Department is making four free COVID tests available to anyone who requests them starting in late September through covidtest.gov, said Dawn O’Connell, assistant secretary for preparedness and response, at the Aug. 23 briefing.

The government is focusing its fall vaccine advocacy campaign, which it’s calling “Risk less, live more,” on older people and nursing home residents, said HHS spokesperson Jeff Nesbit.

Not everyone may really need a fall COVID booster, but “it’s not wrong to give people options,” John Moore said. “The 20-year-old athlete is less at risk than the 70-year-old overweight dude. It’s as simple as that.”

KFF Health News correspondent Amy Maxmen contributed to this report.

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But those laws remain a hurdle and straightforward access to abortions has yet to resume, said Bethany Lewis, executive director of the Preterm abortion clinic in Cleveland. “Legally, what actually happened in practice was not much,” she said.

Today, most of those laws limiting abortions — including a 24-hour waiting period and a 20-week abortion ban — continue to govern Ohio health providers, despite the constitutional amendment’s passage with nearly 57% of the vote. For abortion rights advocates, it’s going to take time and money to challenge the laws in the courts.

Voters in as many as 13 states could also weigh in this year on abortion ballot initiatives. But the seven states that have voted on abortion-related ballot measures since the Supreme Court overturned federal abortion protections two years ago in Dobbs v. Jackson Women’s Health Organization show that an election can be just the beginning.

The state-by-state patchwork of constitutional amendments, laws, and regulations that determine where and how abortions are available across the country could take years to crystallize as old rules are reconciled with new ones in legislatures and courtrooms. And even though a ballot measure result may seem clear-cut, the residual web of older laws often still needs to be untangled. Left untouched, the statutes could pop up decades later, like an Arizona law from 1864 did this year.

Michigan was one of the first states where voters weighed in on abortion rights following the Dobbs decision in June 2022. In November of that year, Michigan voters approved by 13 percentage points an amendment to add abortion rights to the state constitution. It would be an additional 15 months, however, before the first lawsuit was filed to unwind the state’s existing abortion restrictions, sometimes called “targeted regulation of abortion providers,” or TRAP, laws. Michigan’s include a 24-hour waiting period.

The delay had a purpose, according to Elisabeth Smith, state policy and advocacy director at the Center for Reproductive Rights, which filed the lawsuit: It’s preferable to change laws through the legislature than through litigation because the courts can only strike down a law, not replace one.

“It felt really important to allow the legislative process to go forward, and then to consider litigation if there were still statutes that were on the books the legislature hadn’t repealed,” Smith said.

Michigan’s Democratic-led legislature did pass an abortion rights package last year that was signed into law by the state’s Democratic governor in December. But the package left some regulations intact, including the mandatory waiting period, mandatory counseling, and a ban on abortions by non-doctor clinicians, such as nurse practitioners and midwives.

Smith’s group filed the lawsuit in February on behalf of Northland Family Planning Centers and Medical Students for Choice. Smith said it’s unclear how long the litigation will take, but she hopes for a decision this year.

Abortion opponents such as Katie Daniel, state policy director for Susan B. Anthony Pro-Life America, are critical of the lawsuit and such policy unwinding efforts. She said abortion rights advocates used “deceptive campaigns” that claimed they wanted to restore the status quo in place before the Dobbs decision left abortion regulation up to the states.

“The litigation proves these amendments go farther than they will ever admit in a 30-second commercial,” Daniel said. “Removing the waiting period, counseling, and the requirement that abortions be done by doctors endangers women and limits their ability to know about resources and support available to them.”

A lawsuit to unwind most of the abortion restrictions in Ohio came from Preterm and other abortion providers four months after that state’s ballot measure passed. A legislative fix was unlikely because Republicans control the legislature and governor’s office. Preterm’s Lewis said she anticipated the litigation would take “quite some time.”

Dave Yost, the Ohio attorney general, is one of the defendants named in the suit. In a motion to dismiss the case, Yost argued that the abortion providers — which include several clinics as well as a physician, Catherine Romanos — lacked standing to sue.

He argued that Romanos failed to show she was harmed by the laws, explaining that “under any standard, Dr. Romanos, having always complied with these laws as a licensed physician in Ohio, is not harmed by them.”

Jessie Hill, an attorney representing Romanos and three of the clinics in the case, called the argument “just very wrong.” If Romanos can’t challenge the constitutionality of the old laws because she is complying with them, Hill said, then she would have to violate those laws and risk felonies to honor the new amendment.

“So, then she’s got to go get arrested and show up in court and then defend herself based on this new constitutional amendment?” Hill said. “For obvious reasons, that is not a system that we want to have.”

This year, Missouri is among the states poised to vote on a ballot measure to write protections for abortion into the state constitution. Abortions in Missouri have been banned in nearly every circumstance since 2022, but they were largely halted years earlier by a series of laws seeking to make abortions scarce.

Over the course of more than three decades, Missouri lawmakers instituted a 72-hour waiting period, imposed minimum dimensions for procedure rooms and hallways in abortion clinics, and mandated that abortion providers have admitting privileges at nearby hospitals, among other regulations.

Emily Wales, president and chief executive of Planned Parenthood Great Plains, said trying to comply with those laws visibly changed her organization’s facility in Columbia, Missouri: widened doorways, additional staff lockers, and even the distance between recovery chairs and door frames.

Even so, by 2018 the organization had to halt abortion services at that Columbia location, she said, with recovery chairs left in position for a final inspection that never happened. That left just one abortion clinic operating in the state, a separate Planned Parenthood affiliate in St. Louis. In 2019, that organization opened a large facility about 20 miles away in Illinois, where lawmakers were preserving abortion access rather than restricting it.

By 2021, the last full year before the Dobbs decision opened the door for Missouri’s ban, the number of recorded abortions in the state had dwindled to 150, down from 5,772 in 2011.

“At that point, Missourians were generally better served by leaving the state,” Wales said.

Both of Missouri’s Planned Parenthood affiliates have vowed to restore abortion services in the state as swiftly as possible if voters approve the proposed ballot measure. But the laws that diminished abortion access in the state would still be on the books and likely wouldn’t be overturned legislatively under a Republican-controlled legislature and governor’s office. The laws would surely face challenges in court, yet that could take a while.

“They will be unconstitutional under the language that’s in the amendment,” Wales said. “But it’s a process.”

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.

In late 2022, Sarah Gutilla’s treatment-resistant depression had grown so severe, she was actively contemplating suicide. Raised in foster care, the 34-year-old’s childhood was marked by physical violence, sexual abuse, and drug use, leaving her with life-threatening mental scars.

Out of desperation, her husband scraped together $600 for the first of six rounds of intravenous ketamine therapy at Ketamine Clinics Los Angeles, which administers the generic anesthetic for off-label uses such as treating depression. When Gutilla got into an Uber for the 75-mile drive to Los Angeles, it was the first time she had left her home in Llano, California, in two years. The results, she said, were instant.

“The amount of relief I felt after the first treatment was what I think ‘normal’ is supposed to feel like,” she said. “I’ve never felt so OK, and so at peace.”

For-profit ketamine clinics have proliferated over the past few years, offering infusions for a wide array of mental health issues, including obsessive-compulsive disorder, depression, and anxiety. Although the off-label use of ketamine hydrochloride, a Schedule III drug approved by the FDA as an anesthetic in 1970, was considered radical just a decade ago, now between 500 and 750 ketamine clinics have cropped up across the nation.

Market researcher Grand View Research pegged industry revenues at $3.1 billion in 2022, and projects them to more than double to $6.9 billion by 2030. Most insurance doesn’t cover ketamine for mental health, so patients must pay out-of-pocket.

While it’s legal for doctors to prescribe ketamine, the FDA hasn’t approved it for mental health treatment, which means that individual practitioners must develop their own treatment protocols. The result is wide variability among providers, with some favoring gradual, low-dosage treatments while others advocate larger amounts that can induce hallucinations, as the drug is psychedelic at the right doses.

“Ketamine is the wild West,” said Dustin Robinson, the managing principal of Iter Investments, a venture capital firm specializing in hallucinogenic drug treatments.

Ketamine practitioners stress that the drug’s emergence as a mental health treatment is driven by a desperate need. Depression is the leading cause of disability in the United States for individuals ages 15-44, according to the National Institute of Mental Health, and around 25% of adults experience a diagnosable mental disorder in any given year.

Meanwhile, many insurance plans cover mental health services at lower rates than physical health care, despite laws requiring parity. Thus, many patients with disorders receive little or no care early on and are desperate by the time they visit a ketamine clinic, said Steven Siegel, chair of psychiatry and the behavioral sciences at the University of Southern California’s Keck School of Medicine.

But the revelation that “Friends” star Matthew Perry died in part from a large dose of ketamine, along with billionaire Elon Musk’s open use of the drug, has piqued fresh scrutiny of ketamine and its regulatory environment, or lack thereof.

Commercial ketamine clinics often offer same-day appointments, in which patients can pay out-of-pocket for a drug that renders immediate results. The ketamine is administered intravenously, and patients are often given blankets, headphones, and an eye mask to heighten the dissociative feeling of not being in one’s body. A typical dose of ketamine to treat depression, which is 10 times lower than the dosage used in anesthesia, costs clinics about $1, but clinics charge $600-$1,000 per treatment.

Ketamine is still shadowed by its reputation as the party drug known as “Special K”; Siegel’s first grant from the National Institutes of Health was to study ketamine as a drug of abuse. It has the potential to send users down a “K hole,” otherwise known as a bad trip, and can induce psychosis. Research in animals and recreational users has shown chronic use of the drug impairs both short- and long-term cognition.

Perry’s death in October raised alarms when the initial toxicology screening attributed his death to the acute effects of ketamine. A December report revealed Perry received infusion therapy a week before his death but that the fatal blow was a high dose of the substance taken with an opioid and a sedative on the day of his death — indicating that medical ketamine was not to blame.

Variety of protocols

Sam Mandel co-founded Ketamine Clinics Los Angeles in 2014 with his father, Steven Mandel, an anesthesiologist with a background in clinical psychology, and Sam said the clinic has established its own protocol. That includes monitoring a patient’s vital signs during treatment and keeping psychiatrists and other mental health practitioners on standby to ensure safety. Initial treatment starts with a low dose and increases as needed.

While many clinics follow the Mandels’ graduated approach, the dosing protocol at MY Self Wellness, a ketamine clinic in Bonita Springs, Florida, is geared toward triggering a psychedelic episode.

Christina Thomas, president of MY Self Wellness, said she developed her clinic’s procedures against a list of “what not to do” based on the bad experiences people have reported at other clinics.

The field isn’t entirely unregulated: State medical and nursing boards oversee physicians and nurses, while the FDA and Drug Enforcement Administration regulate ketamine. But most anesthesiologists don’t have a background in mental health, while psychiatrists don’t know much about anesthesia, Sam Mandel noted. He said a collaborative, multidisciplinary approach is needed to develop standards across the field, particularly because ketamine can affect vital signs such as blood pressure and respiration.

The protocols governing Spravato, an FDA-approved medication based on a close chemical cousin of ketamine called esketamine, are illustrative. Because it has the potential for serious side effects, it falls under the FDA’s Risk Evaluation and Mitigation Strategies program, which puts extra requirements in place, said Robinson. Spravato’s REMS requires two hours of monitoring after each dose and prohibits patients from driving on treatment days.

Generic ketamine, by contrast, has no REMS requirements. And because it is generic and cheap, drugmakers have little financial incentive to undertake the costly clinical trials that would be required for FDA approval.

That leaves it to the patient to assess ketamine providers. Clinics dedicated to intravenous infusions, rather than offering the treatment as an add-on, may be more familiar with the nuances of administering the drug. Ideally, practitioners should have mental health and anesthesia expertise, or have multiple specialties under one roof, and clinics should be equipped with hospital-grade monitoring equipment, Mandel said.

Siegel, who has researched ketamine since 2003, said the drug is especially useful as an emergency intervention, abating suicidal thoughts for long enough to give traditional treatments, like talk therapy and SSRI antidepressants, time to take effect. “The solutions that we have and have had up until now have failed us,” Mandel said.

The drug is now popular enough as a mental health treatment that the name of Mandel’s clinic is a daily sight for thousands of Angelenos as it appears on 26 Adopt-A-Highway signs along the 405 and 10 freeways.

And the psychedelic renaissance in mental health is accelerating. A drug containing MDMA, known as ecstasy or molly, is expected to receive FDA approval in 2024. A drug with psilocybin, the active ingredient in “magic mushrooms,” could launch as early as 2027, the same year a stroke medicine with the active ingredient of DMT, a hallucinogen, is expected to debut.

Robinson said many ketamine clinics have opened in anticipation of the expanded psychedelic market. Since these new drugs will likely be covered by insurance, Robinson advises clinics to offer FDA-approved treatments such as Spravato so they’ll have the proper insurance infrastructure and staff in place.

For now, Sarah Gutilla will pay out-of-pocket for ketamine treatments. One year after her first round of infusions, she and her husband are saving for her second. In the meantime, she spends her days on her ranch in Llano where she rescues dogs and horses, and relies on telehealth therapy and psychiatric medications.

While the infusions aren’t “a magic fix,” they are a tool to help her move in the right direction.

“There used to be no light at the end of the tunnel,” she said. “Ketamine literally saved my life.”

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.

According to the Environmental Working Group, a Washington, D.C.-based nonprofit that analyzed Department of Defense testing data, 2,805 wells spread across 29 states were contaminated with at least one of two types of per- and polyfluoroalkyl substances, or PFAS, above 4 parts per trillion, a limit proposed earlier this year by the Environmental Protection Agency. That new drinking water standard is expected to take effect by the end of the year.

But contamination in those wells was lower than the 70 parts per trillion threshold the Pentagon uses to trigger remediation.

EWG researchers said they did not know how many people rely on the wells for drinking, cooking, and bathing, but the 76 tested locations represent just a fraction of the private wells near 714 current or former military sites spread across the U.S. According to EWG, Texas had nearly a third of the contaminated wells, with 909. Researchers recorded clusters of tainted wells in both urban and rural areas, from Riverside County and Sacramento in California to Rapid City, South Dakota, and Helena, Montana.

“They are going to have to test more bases,” said Jared Hayes, a senior policy analyst with EWG, in an interview with KFF Health News. “Those 2,805 are going to be a small number when they start testing drinking water wells near every single base.”

Defense Department officials are investigating hundreds of current and former domestic U.S. military installations and communities that surround them to determine whether their soil, groundwater, or drinking water is contaminated with PFAS chemicals.

The Defense Department is a major contributor of PFAS pollution nationwide — the result of spills, dumping, or use of industrial solvents, firefighting foam, and other substances that contain what have been dubbed forever chemicals because they do not break down in the environment and can accumulate in the human body.

Exposure to PFAS has been associated with health problems such as decreased response to vaccines, some types of cancer, low birth weight, and high blood pressure during pregnancy, according to a report published last year by the National Academies of Sciences, Engineering, and Medicine.

A study published this year linked testicular cancer in military personnel to exposure to PFOS, the main type of PFAS chemical used in firefighting foam.

In July, a U.S. Geological Survey study estimated that at least 45% of U.S. tap water contains at least one type of PFAS chemical.

USGS researchers tested 716 locations nationwide and found the forever chemicals more frequently in samples that were collected near urban areas and potential sources of PFAS like military installations, airports, industrial sites, and wastewater treatment plants, according to Kelly Smalling, a USGS research chemist and lead author of the study.

“We knew we would find PFAS in tap water,” she told KFF Health News in July. “But what was really interesting was the similarities between the private wells and the public supply.”

Drinking water sources near military installations that test above 70 parts per trillion draw immediate action from the Defense Department. Those responses include providing alternate drinking water sources, treatment, or water filtration systems.

Below that threshold, federal officials leave it up to homeowners to weigh and mitigate the health risks of contamination, Hayes said.

“It’s unclear what, if anything, these private individuals are being advised,” Hayes said. “If DoD is saying that 70 parts per trillion is the level they are going to provide clean water … the understanding would be if it’s below that, it must be fine.”

The Pentagon bases its 70 parts per trillion standard for PFOS and PFOA chemicals on a 2016 health advisory issued by the EPA. Officials have said they’re waiting for the new federal standard to go into effect before changing Defense Department parameters.

The Department of Defense did not respond by publication deadline to questions about EWG’s findings, or how it will address the new EPA limits.

While EWG’s examination found that thousands of wells contained PFAS at levels above the new EPA standard, but below the military’s 70 ppt threshold for action, it also learned that the Defense Department had found 1,800 private wells that registered higher than 70 ppt and had provided mitigation services to the owners of those wells.

Hayes said the combined levels of PFOS and PFOA in some wells were as high as 10,000 ppt.

Hayes said it’s unclear how long people near those military sites have been drinking contaminated water. “Chances are it’s been years, decades,” he said.

Federal law requires public water systems to be monitored regularly for pollutants, but private wells have no similar requirements. Hayes recommended that people who live near any current or former military installations and use a well for their drinking water have their water tested and use a filter designed specifically to remove PFAS.

According to the DoD’s PFAS remediation website, as part of its ongoing investigation and remediation effort, it has closed contaminated wells, installed new water sources, and treated drinking water on military bases. According to DoD, it is working to “to ensure no one on-base is exposed to PFOS or PFOA in drinking water above 70ppt.”

“Addressing DoD’s PFAS releases is at the core of the Department’s commitment to protect the health and safety of its Service members, their families, the DoD civilian workforce, and the communities in which DoD serves,” Pentagon officials said on the site.

KFF Health News’ Hannah Norman contributed to this report.

This summer is Makenna’s third lifeguarding at the public pool in Roxana, Illinois, a village in the St. Louis area. Although dramatic rescues are relatively rare, she estimates that up to a quarter of the roughly 50 people she keeps a watchful eye on during a shift can’t swim. Then there are the daredevils and children whose parents think they’re better swimmers than they are.

“It’s stressful because you’re responsible for ensuring the safety of all the people at the pool,” said Makenna, 17.

Lifeguarding may look like a cushy job. What’s not to like about lounging in a chair by the pool all day? But the job carries a load of responsibility.

Drowning is the No. 1 cause of death for children ages 1 to 4, according to the Centers for Disease Control and Prevention. Most of those deaths occur in swimming pools. For kids 5-14, drowning is the second-most common type of unintentional injury death, behind motor vehicle deaths.

As schools let out and warm summer days draw people to pools and beaches around the country, many cities and towns are scrambling to hire enough lifeguards to safely oversee swimmers. If they can’t meet their targets, they may cut back pool hours or opt not to open some pools at all. While a shuttered pool on a hot summer day is a letdown for many residents, it can be a particularly big blow for low-income families who don’t have a lot of affordable summer fun options.

Up to 90% of Des Moines kids qualify for free or reduced-cost lunch, said Ben Page, director of Des Moines Parks and Recreation in Iowa. “People can’t afford to go to the movies for air conditioning,” he said.

When local officials make decisions about where to close pools or cut back hours, they do so knowing that swimming has a fraught history of racial inequities.

Racial disparities play a significant role in drowning deaths. Overall, the drowning death rate for Black people in the U.S. is 1.5 times that of white people. The difference is starkest for swimming pool deaths, in which Black children ages 10 to 14 drown at a rate 7.6 times that of their white peers, according to the CDC.

Research conducted in 2017 by the USA Swimming Foundation found that two-thirds of Black children have minimal swimming ability or can’t swim at all. Forty-five percent of Hispanic children are nonswimmers, as are 40% of white kids. (Hispanic people can be of any race or combination of races.) The same study found that 79% of kids in families with incomes less than $50,000 are unable to swim.

When Cullen Jones, the first Black American to hold a world record in swimming, was 5, he nearly drowned at a water park near his home in Irvington, New Jersey. At the time, he didn’t know how to swim, and lifeguards saved his life.

“Most people expect that if you have a near drowning, you were doing something you weren’t supposed to be doing, you were horseplaying or someone pushed you,” said Cullen, a four-time Olympic medalist.

Now 39, Jones travels the country as an ambassador for the USA Swimming Foundation, talking to kids about the importance of learning to swim.

It’s not hard to see the thread connecting lack of swimming ability and higher drowning rates among Blacks with the expansion of swimming pools in the United States. As cities embarked on a municipal pool building boom in the 1920s and ’30s, Black Americans were generally excluded from them, either explicitly because they were white-only pools, or by threats and violence, according to an exhibit at Philadelphia’s Fairmount Water Works titled “Pool: A Social History of Segregation.”

When desegregation was mandated after World War II, many towns closed or relocated their pools to secluded white neighborhoods rather than allow Black people to use them.

Funds also weren’t provided to support pools in majority-Black communities, said Kevin Dawson, an associate professor of history at the University of California-Merced, who has written on the topic. “They might not fill them all the time or not have lifeguards, so people couldn’t use them.”

As cities and towns today make decisions about which pools to open, many are doing so with a clear intention that they be accessible to poor or minority kids as well as those in less diverse or wealthier neighborhoods.

In Baltimore, where the public pools are free to all, city officials carefully selected which 12 of its 23 pools would open this year.

“We picked our pools so that it will be equitable and there would be locations on bus lines so that everyone will have access,” said Nikki Cobbs, chief of aquatics at the Baltimore City Department of Recreation and Parks.

Recreational experts who’ve canvassed jurisdictions say they expect fewer closed pools this year than last.

“Things are a little bit better than they were,” said Kevin Roth, vice president for research, evaluation, and technology at the National Recreation and Park Association, an advocacy organization for people working in the parks and recreation field. “The open times may still be compressed, but there were communities that didn’t open half their pools last year, and we’re not hearing that this year.”

Still, lifeguard staffing shortages continue to put pressure on pool availability. In recent years, it’s become increasingly hard to fill seasonal lifeguard positions with teenagers, the backbone of the workforce.

That’s largely because employment patterns have changed.

Until 2000, about half of teenagers worked at least part of the summer, on average, according to a Pew Research Center analysis of data from the federal Bureau of Labor Statistics. But by 2010, in the aftermath of the Great Recession, the employment rate for teens had dropped to about 30%. Many local parks and recreation staffers are well aware of this new reality.

“The opportunities for young people have increased, and many travel and do internships; they do sports and camp. We’re competing with a lot of things,” said April Chappell, aquatics director for the Cincinnati Recreation Commission.

“There’s been a bit of a cultural shift,” Roth said.

The tight labor market has also given teens better-paying employment options — such as fast-food, retail, or office jobs — that don’t require them to carve out time to get certified in swimming, CPR, and rescue operations by the Red Cross or another group.

Many cities and towns are now taking steps to compete, including boosting lifeguards’ hourly rates, promising bonuses, and offering to pay for lifeguard certification classes. Some are reaching out to retirees and nontraditional workers to fill their ranks.

Des Moines has hired 151 lifeguards to date, far more than the 125 minimum needed to staff its five pools, said Ian Knutsen, who supervises the city’s aquatics program.

Before recruitment got underway, they surveyed former lifeguards about what would make them want to sign up for a stint this year.

“Money was the biggest deciding factor,” Page said.

Des Moines lifeguards start at $15 an hour, compared with $13 last year. That makes the city jobs competitive with other local employers. Lifeguards get an additional $5 per hour for working on holidays. Those who stay through July can get a $200 bonus, which grows by $25 each year they come back, capping at $300.

Cincinnati raised lifeguard wages to $16 an hour, from $11.53 last year, and offered $500 bonuses to returning lifeguards. Despite that, lifeguard shortages persist and mean the city may be able to open only 13 of its 23 pools, said Chappell.

Kids often want to lifeguard at their neighborhood pool, Chappell said. But in some neighborhoods, there may not be enough kids who are swimmers to fill the spots. The city has programs to help increase those numbers.

Last winter, Cincinnati funded a lifeguard academy for people 14-24. The program pays for swimming lessons if they need them and pays for their lifeguard training, as well. About 150 applied, and over 60 became lifeguards, Chappell said.

It’s not only the number of lifeguards that determines pool availability. In Phoenix, lifeguard recruitment has been going great, said Adam Waltz, a spokesperson for the city’s parks and recreation division. Still, the city plans to open only 18 of its 29 pools for the summer, with some on staggered schedules. The sticking point: pool managers.

“In order to open 29 pools, you need to have 29 pool managers, and we couldn’t get that this year,” he said. “We can’t have a first-summer lifeguard calling the shots during a water emergency.”

The conflict involves the Title X family planning program, which provides services to low-income people, including minors. As of 2021, more than 3,200 clinics used federal grants to supply free or low-cost contraception, testing for sexually transmitted infections, screening for breast and cervical cancer, and pregnancy-related counseling.

Federal regulations for the program, which was established more than 50 years ago to reduce unintended pregnancies, say participating clinics must offer pregnant women information about terminating pregnancies and abortion referrals on request. But following those rules puts medical providers at odds with state laws banning abortion, some of which threaten jail time, fines, or the loss of medical licenses if they help someone end a pregnancy.

President Joe Biden’s administration at the end of March cut off Tennessee’s Title X funds after determining the state health department — which oversees its clinics and was awarded $7.1 million last year — violated federal rules by not counseling patients about abortion. “Continued funding is not in the best interest of the government,” two Department of Health and Human Services officials wrote to Tennessee officials on March 20. The state had more than 100 Title X clinics as of March, according to an HHS directory.

In 2022, the federal government awarded Title X grants to roughly 90 entities, a mix of state and local governments and private organizations. Those grantees distribute funds to public or private clinics.

Federal law prohibits clinics from using Title X money to pay for abortions. However, HHS requires clinics to offer pregnant women information about prenatal care and delivery, infant care, foster care, adoption, and pregnancy termination.

In states where abortion is generally illegal, that could mean directing patients to providers in other states. But Tennessee told family planning clinics they could discuss only services that were legal in the state — effectively cutting off any talk about abortion.

Tennessee allows abortions only under limited circumstances, including to save a pregnant person’s life. State health department policies for family planning “are consistent with state law,” said Jade Byers, a spokesperson for Republican Gov. Bill Lee. Tennessee allocated state funds to replace the federal money.

Whitney Rice, director of Emory University’s Center for Reproductive Health Research in the Southeast, said failing to provide timely information and referrals for abortion “could contribute to further delays in people’s ability to access that care,” especially because women may need to travel long distances for it.

The clash over the federally funded clinics is part of the widening fallout from the Supreme Court’s June 2022 decision in Dobbs v. Jackson Women’s Health Organization ending the constitutional right to an abortion.

In Idaho, which has a near-total abortion ban, two Planned Parenthood clinics with Title X funding recently stopped giving patients abortion information and halted out-of-state referrals, according to a lawsuit Planned Parenthood and the American Civil Liberties Union filed in April against Idaho’s attorney general.

State law prohibits providers from assisting in performing or attempting to perform an abortion, and violators risk having their medical license suspended.

The clinics’ decision came after Idaho Attorney General Raúl Labrador, in a March 27 letter, said Idaho law prohibits providers from “referring a woman across state lines to access abortion services.”

That interpretation is “preventing medical professionals from providing full information to their patients,” said Mack Smith, spokesperson for Planned Parenthood Great Northwest, Hawaii, Alaska, Indiana, Kentucky.

Though Labrador later withdrew the letter, Planned Parenthood clinics there still are not referring patients out of state for abortions, Smith said.

Before Labrador’s letter, the lawsuit states, Planned Parenthood staff would furnish general information about pregnancy options, a list of abortion providers in other states and organizations that help defray patients’ abortion and related costs, and a flyer about Idaho’s abortion law. Staff would also occasionally help patients schedule care outside of Idaho. Now, “Planned Parenthood providers no longer do so.”

“When my patients require abortions, I am now forced to tell them that I am unable to help them and that I cannot say anything about their abortion options in other states,” Caitlin Gustafson, a physician who had practiced at an Idaho Planned Parenthood clinic, said in a legal declaration.

Kimberley Harris, a visiting assistant professor at Texas Tech University School of Law, said clinicians in states with strict bans worry about referring patients to other states because a prosecutor could interpret that as “aiding and abetting an abortion.”

Facilitating medication abortion in particular could “pose potential risk to health care providers,” Harris said, because a patient they refer to obtain pills out of state might then take them in a state where abortion is illegal. Medication abortion accounts for most abortions in the U.S. and involves taking a series of pills during the first 10 weeks of pregnancy.

“The federal regulation might require me to provide counseling and provide information,” Harris said of clinicians. “But if you’re telling providers that they may lose their license, or they might go to jail, or they might face a huge fine? Rightfully, they’re going to be concerned.”

As senior HHS officials travel the country, they are getting an earful about the issue.

HHS spokesperson Tara Broido said that, increasingly, “providers and patients have raised concerns about the impact that the Dobbs decision has had on access” to pregnancy counseling and referrals.

KFF Health News asked Broido which grantees have not been following the counseling and referral requirements. She declined to say.

People who use Title X’s services are disproportionately women. A report from HHS’ Office of Population Affairs said roughly two-thirds of 1.7 million patients in 2021 had family incomes at or below the poverty line. Thirty-six percent were uninsured, more than two times the national uninsured rate for adults.

The Office of Population Affairs and the Centers for Disease Control and Prevention jointly recommend family planning services that clinics are expected to follow. They include pregnancy testing and counseling.

The Title X program has been whipsawed before.

In 2019, the Trump administration barred Title X clinics from making abortion referrals. And the administration said abortion providers couldn’t share physical space with Title X clinics. The number of participating clinics subsequently dropped sharply — from 3,825 sites in 2019 to 3,031 the following year. With fewer clinics, the number of people receiving free or low-cost family planning services through the program plummeted from 3.1 million in 2019 to 1.5 million in 2020.

The Biden administration in 2021 overturned many of the Trump policies. The Biden rules remain in effect, but several states sued to block them. That litigation is ongoing.

Sarah Parshall Perry, a senior legal fellow at the conservative Heritage Foundation think tank, anticipates additional challenges to Title X rules because “states have an interest in defending their own laws and their ability to enforce their own laws.”

In Texas, which prohibits abortion with few exceptions, the nonprofit Every Body Texas oversees 154 Title X family planning clinics.

Its providers are still counseling pregnant women about options, but “that’s not to say it hasn’t been made very, very difficult,” said Stephanie LeBleu, the group’s acting Title X director.

LeBleu said the approach to counseling “can look different” from clinic to clinic. For example, clinics in rural Texas “have to be a lot more cautious about how they share information with their clients,” LeBleu said. Sometimes that means making a “referral to the referral” — such as directing patients to organizations like All-Options, which operates a national pregnancy options hotline.

Other Title X grantees also say they are fully complying with federal regulations. In Alabama, if patients ask for information on pregnancy options, “our clinics refer clients to other resources,” Karen M. Landers, chief medical officer for the Alabama Department of Public Health, said in a statement. The department declined to say what those resources are and whether clinicians worry about being prosecuted under Alabama law for providing abortion counseling or referrals.

“Clients are additionally informed of the legality of pregnancy termination in the state,” Landers wrote.

Under normal circumstances, states review their Medicaid enrollment lists regularly to ensure every recipient qualifies for coverage. But because of a nationwide pause in those reviews during the pandemic, the health insurance program for low-income and disabled Americans kept people covered even if they no longer qualified.

Now, in what’s known as the Medicaid unwinding, states are combing through rolls and deciding who stays and who goes. People who are no longer eligible or don’t complete paperwork in time will be dropped.

The overwhelming majority of people who have lost coverage in most states were dropped because of technicalities, not because state officials determined they no longer meet Medicaid income limits. Four out of every five people dropped so far either never returned the paperwork or omitted required documents, according to a KFF Health News analysis of data from 11 states that provided details on recent cancellations. Now, lawmakers and advocates are expressing alarm over the volume of people losing coverage and, in some states, calling to pause the process.

KFF Health News sought data from the 19 states that started cancellations by May 1. Based on records from 14 states that provided detailed numbers, either in response to a public records request or by posting online, 36% of people whose eligibility was reviewed have been disenrolled.

In Indiana, 53,000 residents lost coverage in the first month of the unwinding, 89% for procedural reasons like not returning renewal forms. State Rep. Ed Clere, a Republican, expressed dismay at those “staggering numbers” in a May 24 Medicaid advisory group meeting, repeatedly questioning state officials about forms mailed to out-of-date addresses and urging them to give people more than two weeks’ notice before canceling their coverage.

Clere warned that the cancellations set in motion an avoidable revolving door. Some people dropped from Medicaid will have to forgo filling prescriptions and cancel doctor visits because they can’t afford care. Months down the line, after untreated chronic illnesses spiral out of control, they’ll end up in the emergency room where social workers will need to again help them join the program, he said.

Before the unwinding, more than 1 in 4 Americans — 93 million — were covered by Medicaid or CHIP, the Children’s Health Insurance Program, according to KFF Health News’ analysis of the latest enrollment data. Half of all kids are covered by the programs.

About 15 million people will be dropped over the next year as states review participants’ eligibility in monthly tranches.

Most people will find health coverage through new jobs or qualify for subsidized plans through the Affordable Care Act. But millions of others, including many children, will become uninsured and unable to afford basic prescriptions or preventive care. The uninsured rate among those under 65 is projected to rise from a historical low of 8.3% today to 9.3% next year, according to the Congressional Budget Office.

Because each state is handling the unwinding differently, the share of enrollees dropped in the first weeks varies widely.

Several states are first reviewing people officials believe are no longer eligible or who haven’t recently used their insurance. High cancellation rates in those states should level out as the agencies move on to people who likely still qualify.

In Utah, nearly 56% of people included in early reviews were dropped. In New Hampshire, 44% received cancellation letters within the first two months — almost all for procedural reasons, like not returning paperwork.

But New Hampshire officials found that thousands of people who didn’t fill out the forms indeed earn too much to qualify, according to Henry Lipman, the state’s Medicaid director. They would have been denied anyway. Even so, more people than he expected are not returning renewal forms. “That tells us that we need to change up our strategy,” said Lipman.

In other states, like Virginia and Nebraska, which aren’t prioritizing renewals by likely eligibility, about 90% have been renewed.

Because of the three-year pause in renewals, many people on Medicaid have never been through the process or aren’t aware they may need to fill out long verification forms, as a recent KFF poll found. Some people moved and didn’t update their contact information.

And while agencies are required to assist enrollees who don’t speak English well, many are sending the forms in only a few common languages.

Tens of thousands of children are losing coverage, as researchers have warned, even though some may still qualify for Medicaid or CHIP. In its first month of reviews, South Dakota ended coverage for 10% of all Medicaid and CHIP enrollees in the state. More than half of them were children. In Arkansas, about 40% were kids.

Many parents don’t know that limits on household income are significantly higher for children than adults. Parents should fill out renewal forms even if they don’t qualify themselves, said Joan Alker, executive director of the Georgetown University Center for Children and Families.

New Hampshire has moved most families with children to the end of the review process. Lipman, the state’s Medicaid director, said his biggest worry is that a child will end up uninsured. Florida also planned to push kids with serious health conditions and other vulnerable groups to the end of the review line.

But according to Miriam Harmatz, advocacy director and founder of the Florida Health Justice Project, state officials sent cancellation letters to several clients with disabled children who probably still qualify. She’s helping those families appeal.

Nearly 250,000 Floridians reviewed in the first month of the unwinding lost coverage, 82% of them for reasons like incomplete paperwork, the state reported to federal authorities. House Democrats from the state petitioned Republican Gov. Ron DeSantis to pause the unwinding.

Advocacy coalitions in both Florida and Arkansas also have called for investigations into the review process and a pause on cancellations.

The state is contacting enrollees by phone, email, and text, and continues to process late applications, said Tori Cuddy, a spokesperson for the Florida Department of Children and Families. Cuddy did not respond to questions about issues raised in the petitions.

Federal officials are investigating those complaints and any other problems that emerge, said Dan Tsai, director of the Center for Medicaid & CHIP Services. “If we find that the rules are not being followed, we will take action.”

His agency has directed states to automatically reenroll residents using data from other government programs like unemployment and food assistance when possible. Anyone who can’t be approved through that process must act quickly.

“For the past three years, people have been told to ignore the mail around this, that the renewal was not going to lead to a termination.” Suddenly that mail matters, he said.

Federal law requires states to tell people why they’re losing Medicaid coverage and how to appeal the decision.

Harmatz said some cancellation notices in Florida are vague and could violate due process rules. Letters that she’s seen say “your Medicaid for this period is ending” rather than providing a specific reason for disenrollment, like having too high an income or incomplete paperwork.

If a person requests a hearing before their cancellation takes effect, they can stay covered during the appeals process. Even after being disenrolled, many still have a 90-day window to restore coverage.

In New Hampshire, 13% of people deemed ineligible in the first month have asked for extra time to provide the necessary records. “If you’re eligible for Medicaid, we don’t want you to lose it,” said Lipman.

Clere, the Indiana state representative, pushed his state’s Medicaid officials during the May meeting to immediately make changes to avoid people unnecessarily becoming uninsured. One official responded that they’ll learn and improve over time.

“I’m just concerned that we’re going to be ‘learning’ as a result of people losing coverage,” Clere replied. “So I don’t want to learn at their expense.”

La residente de Philadelphia se sorprendió cuando recibió un mensaje en línea informándole que debido a que no visitó a su médico en más de tres años, ya no era una paciente.

Y como no estaba aceptando nuevos pacientes, debería otro médico de atención primaria.

“Es inconcebible”, dijo Siegel, observando que muchos pacientes no fueron al médico en los últimos años por la pandemia de covid. “No hubo ninguna notificación a los pacientes de que estaban a punto de perder a su médico”.

Ser eliminado de la lista de pacientes resulta desalentador, pero no es inusual.

El argumento para dejar “huérfano de médico” al paciente tiene cierto sentido. Dado que muchos médicos de cabecera tienen una lista de espera de potenciales pacientes, eliminar a los que rara vez ven abre espacios y mejora el acceso para otros.

“La mayoría de las prácticas de atención primaria están increíblemente ocupadas, en parte debido a la demanda acumulada por covid”, dijo el Russell Phillips, director del Centro de Atención Primaria de la Facultad de Medicina de Harvard e internista general en el Centro Médico Beth Israel Deaconess.

“Aunque la continuidad de la atención es importante, si el paciente no ha venido y no sabemos si vendrá, es difícil dejarle espacio”, dijo.

Los pacientes a menudo se mudan o buscan un médico diferente cuando cambian de seguro sin notificar al consultorio, dicen expertos.

Además, los médicos pueden buscar clasificar a las personas que no han visto en mucho tiempo como nuevos pacientes, ya que su historial médico, familiar y social puede necesitar actualizarse, algo que lleva tiempo después de estos paréntesis en las visitas. El estado del paciente es un elemento que determina cuánto se les paga a los médicos.

Aún así, la transición puede ser difícil para los pacientes.

“Puedo entender completamente la perspectiva del paciente”, dijo Courtney Jones, directora senior de gestión de casos en la Patient Advocate Foundation. “Crees que tienes un equipo médico en el que confiaste para ayudarte a tomar decisiones, y ahora debes encontrar otro equipo de confianza”.

Siegel dijo que rara vez iba al médico, siguiendo el consejo de su padre médico de que las personas no deberían ir a menos que estén enfermas. Aunque no había estado en persona en el consultorio de su médico recientemente, explicó que se contactó con el personal del consultorio, incluso informándoles sobre su estatus de vacunación contra covid.

Después de recibir la notificación de que ya no era paciente a través del portal de Jefferson Health, Siegel llamó por teléfono. Le dijeron que tres años era el protocolo y que debían seguirlo.

“Pregunté, ‘¿Qué pasa con el paciente?'”, dijo Siegel. “No tuvieron respuesta”.

Pasó un mes antes de que Siegel, que tiene Medicare, pudiera ver a un médico que aceptara nuevos pacientes. En ese momento, los síntomas del virus estomacal ya habían desaparecido.

Jefferson Health no tiene una política sobre este tipo de situaciones, según un comunicado del vocero Damien Woods.

Sin embargo, dijo, “los pacientes que no han sido vistos por su proveedor durante tres años o más se clasifican en los registros médicos electrónicos como pacientes nuevos, según la guía del Centro de Servicios de Medicare y Medicaid (CMS). Siempre que sea posible, Jefferson trabaja con estos pacientes para mantenerlos con su proveedor de atención primaria y ofrece opciones para nuevos proveedores en ciertas circunstancias”.

Las guías de ética de la Asociación Médica Estadounidense (AMA) recomiendan que los médicos notifiquen a los pacientes con anticipación, para que tengan tiempo de encontrar otro doctor.

La lista de pacientes de un médico de atención primaria generalmente incluye a aquellos que fueron vistos en los últimos dos años, dijo Phillips, de Harvard. Los médicos pueden tener 2,000 o más pacientes, según muestran estudios. Mantener un número viable de pacientes es crucial, tanto para una atención eficaz de los pacientes como para los médicos.

“Los consultorios se dan cuenta de que uno de los principales contribuyentes al agotamiento de los médicos es tener más pacientes de los que se pueden atender”, dijo Phillips.

Se espera que la demanda de servicios médicos continúe superando la oferta en las próximas décadas, a medida que las personas envejecen y necesitan más atención al mismo tiempo que aumenta el número de médicos que se jubilan.

Según las proyecciones de la Asociación de Colegios Médicos Estadounidenses, para 2034 habrá una escasez de hasta 48,000 médicos de atención primaria.

Mantener una relación regular con un proveedor de atención primaria puede ayudar a las personas a controlar las afecciones crónicas e identificar rápidamente nuevos problemas.

El control regular también ayuda a garantizar que las personas reciban servicios de rutina esenciales, como inmunizaciones y controles de presión arterial, dijo el doctor David Blumenthal, ex médico de atención primaria y presidente de The Commonwealth Fund, una organización de investigación y políticas.

Las organizaciones de atención médica se enfocan cada vez más en exigir a los médicos que cumplan con ciertas métricas de calidad, como el control de la presión arterial alta de los pacientes o la atención integral de la diabetes. En este entorno, “podría ser problemático para los médicos ser responsables de la salud de los pacientes a los que no ven”, dijo Blumenthal.

El dinero también juega un rol. Las visitas constantes son buenas para el resultado final de una práctica. Las prácticas también pueden decidir no recibir nuevos pacientes de Medicare o aquellos con ciertos tipos de seguro porque los pagos son demasiado bajos, dijo Owen Dahl, consultor de Medical Group Management Association, una organización para administradores de atención médica.

En general, los médicos no están obligados a seguir atendiendo a un paciente. Un médico puede “despedir” a los pacientes porque no siguen las recomendaciones clínicas o cancelan o pierden citas de forma constante. El comportamiento beligerante también es motivo para eliminar a un paciente.

En ciertos casos, los médicos pueden ser legalmente responsables por “abandono del paciente”, una forma de negligencia médica.

Las reglas estatales varían, pero hay elementos comunes. Esas reglas generalmente se aplican cuando un médico daña a un paciente al dejarlo abruptamente en una etapa crítica del tratamiento. Por lo general, no se aplicaría si un paciente no ha visto al médico durante varios años.

Pero en cualquier caso se debe informar a los pacientes, dijeron expertos.

“Es realmente un buen servicio al cliente explicar la situación”, dijo Rick Gundling, vicepresidente senior de Healthcare Financial Management Association. En cuanto a Siegel, dijo: “Esta mujer no debe quedar en el limbo. Si usted es el paciente, el médico debe ser proactivo”.

Kaiser Health News (KHN) es un servicio nacional de noticias sobre políticas de salud. Es un programa editorialmente independiente de la Fundación de la Familia Henry J. Kaiser