The money is part of the approximately $50 billion that states and local governments will receive nationwide in opioid settlement funds over nearly two decades. The payments come from more than a dozen companies that made, distributed, or sold prescription opioid painkillers that were sued for their role in fueling the overdose epidemic.

Many places have begun deciding where that money will go and making payments to schools, public health departments, and local governments. South Carolina, for example, has awarded more than $7 million to 21 grantees. Wisconsin has posted two years’ worth of spending plans that total nearly $40 million.

Montana, West Virginia, and Hawaii are among the states moving slower.

Montana began receiving its first settlement payments in January, and, by fall, payments totaled roughly $13 million. As of early December, the Montana Opioid Abatement Trust — a private nonprofit created to oversee 70% of the state’s share — had met once to agree to its rules of operation, and its money remained locked behind an inactive grant portal. The remainder, divided among the state and local governments, either hadn’t been spent or wasn’t publicly recorded.

Those charged with distributing the money say they’re building a framework to spend it in ways that last. Meanwhile, some addiction treatment providers are eager to use the funds to plug gaps in services.

The tension in Montana reflects a nationwide push-pull. Those handling settlement dollars say governments should take their time planning how to use the enormous windfall. Others argue for urgency as the drug supply has become increasingly deadly. More than 100,000 Americans died of overdoses in 2022, surpassing the previous year’s record-setting death toll.

Nearly 200 Montanans died of a drug overdose in 2021, the latest year state data is available. That number, likely an undercount, is roughly 40 more deaths than the year before. Emergency medical responders have continued to record an increasing number of opioid-related emergencies this year.

In Billings, the Rimrock Foundation, one of the state’s largest behavioral health providers, has seen its number of clients with opioid use dependency more than triple since 2021. Like other treatment facilities, Rimrock has a waitlist, and addiction treatment providers worry about the limited community resources that exist for patients once they are discharged. “The result of not addressing this is a lot of deaths,” said Jennifer Verhasselt, Rimrock Foundation’s chief clinical officer.

Debbie Knutson, Rimrock’s medical unit and nursing supervisor, said there is widespread confusion about how and when the state’s settlement dollars can be used.

“It’s very concerning if we have money available that we could use to help people that is just kind of sitting, waiting for somebody to decide where it should go,” Knutson said.

Rusty Gackle, the Montana Opioid Abatement Trust executive director, said a lot of work has happened behind the scenes to get local governments ready to accept their initial payments and for regional leaders to form systems to request money from the trust. That included hosting a series of town hall-style meetings to share information about the process. He said many of those local regions are still finalizing their governance structures.

“I would love to progress a little bit faster,” Gackle said. “But I’d rather do it right so that we’re not having to go backwards.”

Montana officials got a late start too, he added. Some states began receiving settlement dollars last year, but Montana was toward the tail end of the line.

Montana is dividing its money three ways: 15% to the state, 15% to local governments, and the rest to the Montana Opioid Abatement Trust, with some money set aside for attorneys’ fees.

As of late November, the state hadn’t begun spending the $2.4 million it had in hand for state agencies. Officials also aren’t tracking how and when local governments spend their direct payments.

Similarly, West Virginia and Hawaii hadn’t — by late November — begun spending the largest shares of their funding. In West Virginia, the makeup of the foundation board that will oversee roughly 70% of the state’s settlement dollars was announced only in August, six weeks after the state’s deadline, and the board is now sitting on more than $217 million.

Nationwide, state and local governments have received more than $4.3 billion as of Nov. 9. How much of that has been used remains uncertain due to states’ lack of public reporting. But from what is known, it varies.

Colorado, whose spending plan is similar to Montana’s but received its settlement money earlier, has allocated millions toward school and community-based programs, recovery housing services, and expanded treatment services.

Sara Whaley, a Johns Hopkins researcher who tracks states’ uses of opioid settlement funds, said a slower start isn’t inherently wrong. She prefers governments take time to spend the money well rather than fund outdated or untested practices. In some cases, governments are building entirely new systems to dole out the money. Several waited until the courts finalized the settlement amounts and details.

“There are definitely states that were like, ‘We are going to get money at some point. We don’t know how much or when, but let’s start setting up our system,’” Whaley said. “Other folks were like, ‘We have a lot going on already. We’ll just wait until we get it and then we’ll know what the settlement terms are.’”

Even once committees start meeting, it can take months for the money to reach front-line organizations.

Connecticut’s opioid settlement advisory committee made its first allocation in November, eight months after it was formed. Maine’s recovery council, which controls half the state’s settlement funds, has been meeting since November 2022, but just recently voted on priorities for the more than $14 million it has on hand and still needs to establish a grant application process.

Tennessee’s Opioid Abatement Council accepted grant applications this fall. Stephen Loyd, council chair, said the process — from picking awardees to processing payments — will take roughly six months. Within that time, he said, 2,808 Tennesseans are likely to die of drug overdoses.

As an interim step, Loyd proposed at an October meeting to award $7.5 million to an emergency six-month initiative to flood the state with naloxone, a medication that reverses opioid overdoses.

But his proposal was met with protests from council members, who pushed back on what they saw as a circumvention of the grant process they had spent months establishing. The council didn’t vote on the emergency initiative but instead created an expedited review process to consider fast-tracking future applications.

Gackle said he doesn’t think Montana is far behind others. Now that spending systems are almost in place, he said, things should move faster.

Lewis and Clark County, home to the state capital, Helena, has a yearlong plan and budget for opioid settlement funds. A cohort of 17 counties in rural eastern Montana defined its regional settlement decision-makers in November and, by early December, had yet to begin official talks about where the money should go.

Brenda Kneeland, CEO of Eastern Montana Community Mental Health Center and an advisory committee member for the Montana Opioid Abatement Trust, said eastern Montana has one inpatient treatment center for substance use disorders and zero detox facilities, so emergency rooms end up serving as a fallback resource.

Kneeland said local officials want to ensure they understand the rules to avoid trouble later and to stretch the funding.

“You don’t get an opportunity to try to correct such a wrong very often,” Kneeland said. “It’s just a huge job at a county level. I’ve never seen an undertaking like this in my career.”

The Montana Opioid Abatement Trust advisory committee will meet quarterly, meaning its next chance to review any submitted grants will be next spring.

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Related Links

• Police Blame Some Deaths on ‘Excited Delirium.’ ER Docs Consider Pulling the Plug on the Term. Oct 2, 2023
• California Bans Controversial ‘Excited Delirium’ Diagnosis Oct 12, 2023
• Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway. Oct 16, 2023

Quinto, 30, had been pinned on the ground for at least 90 seconds by police in California and stopped breathing. He died three days later.

Now his relatives are asking a federal judge to exclude any testimony about “excited delirium” in their wrongful death case against the city of Antioch. Their case may be stronger than ever.

Their push comes at the end of a pivotal year for the long-standing, nationwide effort to discard the use of excited delirium in official proceedings. Over the past 40 years, the discredited, racially biased theory has been used to explain away police culpability for many in-custody deaths. But in October, the American College of Emergency Physicians disavowed a key paper that seemingly gave it scientific legitimacy, and the College of American Pathologists said it should no longer be cited as a cause of death.

That same month, California’s Democratic Gov. Gavin Newsom signed the nation’s first law to ban the term “excited delirium” as a diagnosis and cause of death on death certificates, autopsy reports, and police reports. Legislators in other states are expected to consider similar bills next year, and some law enforcement agencies and training organizations have dropped references to excited delirium from their policy manuals and pulled back from training police on the debunked theory.

Despite all that momentum, families, attorneys, policing experts, and doctors say much remains to be done to correct the mistakes of the past, to ensure justice in ongoing trials, and to prevent avoidable deaths in the future. But after years of fighting, they’re heartened to see any movement at all.

“This entire thing, it’s a nightmare,” said Bella Collins, Angelo’s sister. “But there are silver linings everywhere, and I feel so fortunate to be able to see change happening.”

Ultimately, the campaign against excited delirium seeks to transform the way police deal with people undergoing mental health crises.

“This is really about saving lives,” said Joanna Naples-Mitchell, an attorney who worked on an influential Physicians for Human Rights review of excited delirium.

Changing Law Enforcement Training

The use of the term “excited delirium syndrome” became pervasive after the American College of Emergency Physicians published a white paper on it in 2009. It proposed that individuals in a mental health crisis, often under the influence of drugs or alcohol, can exhibit superhuman strength as police try to control them, and then die suddenly from the condition, not the police response.

The ACEP white paper was significant in catalyzing police training and policy, said Marc Krupanski, director of criminal justice and policing at Arnold Ventures, one of the largest nonprofit funders of criminal justice policy. The theory contributed to deaths, he said, because it encouraged officers to apply greater force rather than call medical professionals when they saw people in aggressive states.

After George Floyd’s 2020 death, which officers blamed on excited delirium, the American Medical Association and the American Psychiatric Association formally rejected it as a medical condition. Then came disavowals from the National Association of Medical Examiners and the emergency physicians’ and pathologists’ groups this year.

The moves by medical societies to renounce the term have already had tangible, albeit limited, effects. In November, Lexipol, a training organization used by thousands of public safety agencies in the U.S., reiterated its earlier move away from excited delirium, citing the California law and ACEP’s retraction of the 2009 white paper.

Lexipol now guides officers to rely on what they can observe, and not to guess at a person’s mental status or medical condition, said Mike Ranalli, a lawyer and police trainer with the Texas-based group. “If somebody appears to be in distress, just get the EMS,” he said, referring to emergency medical services.

Patrick Caceres, a senior investigator at the Bay Area Rapid Transit’s Office of the Independent Police Auditor, successfully pushed to remove excited delirium from the BART Police Department’s policy manual after learning about Quinto’s death in 2020 and seeing the American Medical Association’s rejection of it the following year.

Caceres fears that rooting out the concept — not just the term — more broadly will take time in a country where law enforcement is spread across roughly 18,000 agencies governed by independent police chiefs or sheriffs.

“The kinds of training and the kinds of conversations that need to happen, we’re still a long way away from that,” said Caceres.

In Tacoma, Washington, where three police officers have been charged with the 2020 death of Manuel Ellis, The Seattle Times reported that local first responders testified as recently as October that they still “embrace” the concept.

But in Colorado, the state’s Peace Officer Standards and Training board ruled on Dec. 1 to drop excited delirium training for new law enforcement officers, KUSA-TV reported.

And two Colorado lawmakers, Democratic state Reps. Judy Amabile and Leslie Herod, have drafted a bill for the 2024 legislative session banning excited delirium from other police and EMS training and prohibiting coroners from citing it as a cause of death.

“This idea that it gives you superhuman strength causes the police to think they should respond in a way that is often completely inappropriate for what’s actually happening,” Amabile said. “It just seems obvious that we should stop doing that.”

She would like police to focus more on de-escalation tactics, and make sure 911 calls for people in mental health crisis are routed to behavioral health professionals who are part of crisis intervention teams.

Taking ‘Excited Delirium’ Out of the Equation

As the Quinto family seeks justice in the death of the 30-year-old Navy veteran, they are hopeful the new refutations of excited delirium will bolster their wrongful death lawsuit against the city of Antioch. On the other side, defense lawyers have argued that jurors should hear testimony about the theory.

On Oct. 26, the family cited both the new California law and the ACEP rebuke of the diagnosis when it asked a U.S. District Court judge in California to exclude witness testimony and evidence related to excited delirium, saying it “cannot be accepted as a scientifically valid diagnosis having anything to do with Quinto’s death.”

“A defense based on BS can succeed,” family attorney Ben Nisenbaum said. “It can succeed by giving jurors an excuse to give the cops a way out of this.”

Meanwhile, advocates are calling for a reexamination of autopsies of those who died in law enforcement custody, and families are fighting to change death certificates that blame excited delirium.

The Maryland attorney general’s office is conducting an audit of autopsies under the tenure of former chief medical examiner David Fowler, who has attributed various deaths to excited delirium. But that’s just one state reviewing a subset of its in-custody deaths.

The family of Alexander Rios, 28, reached a $4 million settlement with Richland County, Ohio, in 2021 after jail officers piled on Rios and shocked him until he turned blue and limp in September 2019. During a criminal trial against one of the officers that ended in a mistrial this November, the pathologist who helped conduct Rios’ autopsy testified that her supervisor pressured her to list “excited delirium” as the cause of death even though she didn’t agree. Still, excited delirium remains his official cause of death.

The county refused to update the record, so his relatives are suing to force a change to his official cause of death. A trial is set for May.

Changing the death certificate will be a form of justice, but it won’t undo the damage his death has caused, said Don Mould, Rios’ stepfather, who is now helping to raise one of Rios’ three children.

“Here is a kid that’s life is upside down,” he said. “No one should go to jail and walk in and not be able to walk out.”

In some cases, death certificates may be hard to refile. Quinto’s family has asked a state judge to throw out the coroner’s findings about his 2020 death. But the California law, which takes effect in January and bans excited delirium on death certificates, cannot be applied retroactively, said Contra Costa County Counsel Thomas Geiger in a court filing.

And, despite the 2023 disavowals by the main medical examiners’ and pathologists’ groups, excited delirium — or a similar explanation — could still show up on future autopsy reports outside California. No single group has authority over the thousands of individual medical examiners and coroners, some of whom work closely with law enforcement officials. The system for determining a cause of death is deeply disjointed and chronically underfunded.

“One of the unfortunate things, at least within forensic pathology, is that many things are very piecemeal,” said Anna Tart, a member of the Forensic Pathology Committee of the College of American Pathologists. She said that CAP plans to educate members through conferences and webinars but won’t discipline members who continue to use the term.

Justin Feldman, principal research scientist with the Center for Policing Equity, said that medical examiners need even more pressure and oversight to ensure that they don’t find other ways to attribute deaths caused by police restraint to something else.

Only a minority of deaths in police custody now cite excited delirium, he said. Instead, many deaths are being blamed on stimulants, even though fatal cocaine or methamphetamine overdoses are rare in the absence of opioids.

Yet advocates are hopeful that this year marks enough of a turning point that alternative terms will have less traction.

The California law and ACEP decision take “a huge piece of junk science out of the equation,” said Julia Sherwin, a California civil rights attorney who co-authored the Physicians for Human Rights report.

Sherwin is representing the family of Mario Gonzalez, who died in police custody in 2021, in a lawsuit against the city of Alameda, California. Excited delirium doesn’t appear on Gonzalez’s death certificate, but medical experts testifying for the officers who restrained him cited the theory in depositions. 

She said she plans to file a motion excluding the testimony about excited delirium in that upcoming case and similar motions in all the restraint-asphyxia cases she handles.

“And, in every case, lawyers around the country should be doing that,” Sherwin said.

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

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Six-foot-tall corn plants tower over large green squash and black-and-yellow sunflowers. Around the perimeter, stalks of sweetgrass grow.

The seeds for some of these plants grew for millennia in Native Americans’ gardens along the upper Missouri River. It’s one of several Native American ancestral gardens growing in the Bozeman area, totaling about an acre. Though small, the garden is part of a larger, multifaceted effort around the country to promote “food sovereignty” for reservations and tribal members off reservation, and to reclaim aspects of Native American food and culture that flourished in North America for thousands of years before the arrival of European settlers. Restoring bison to reservations, developing community food gardens with ancestral seeds, understanding and collecting wild fruits and vegetables, and learning how to cook tasty meals with traditional ingredients are all part of the movement.

“We are learning to care for plant knowledge, growing Indigenous gardens, cultivating ancestral seeds — really old seeds from our relatives the Mandan, Hidatsa, and Arikara: corn, beans, squash, and sunflowers,” said Jill Falcon Ramaker, an assistant professor of community nutrition and sustainable food systems at Montana State. She is a member of the Turtle Mountain Band of Anishinaabe.

“A lot of what we are doing here at the university is cultural knowledge regeneration,” she said.

But it also has a very practical application: to provide healthier, cheaper, and more reliable food supplies for reservations, which are often a long way from supermarkets, and where processed foods have helped produce an epidemic of diabetes and heart disease.

Many reservations are food deserts where prices are high and processed food is often easier to come by than fresh food. The Montana Food Distribution Study, a 2020 paper funded by the U.S. Department of Agriculture, found that the median cost in the state of a collection of items typically purchased at a grocery store is 23% higher on a reservation than off.

“With food sovereignty we are looking at the ability to put that healthy food and ancestral foods which we used to survive for thousands of years, putting those foods back on the table,” Ramaker said. What that means exactly can vary by region, depending on the traditional food sources, from wild rice in the Midwest to salmon on the Pacific coast.

Central to the effort, especially in Montana, are bison, also referred to as buffalo. In 2014, 13 Native nations from eight reservations in the U.S. and Canada came together to sign the Buffalo Treaty, an agreement to return bison to 6.3 million acres that sought “to welcome BUFFALO to once again live among us as CREATOR intended by doing everything within our means so WE and BUFFALO will once again live together to nurture each other culturally and spiritually.”

Nearly a decade later, dozens of tribes have buffalo herds, including all seven reservations in Montana.

The buffalo-centered food system was a success for thousands of years, according to Ramaker, who directs both the regional program, known as the Buffalo Nations Food Systems Initiative — a collaboration with the Native American Studies Department and College of Education, Health and Human Development at Montana State — and the Montana-specific effort, known as the Montana Indigenous Food Sovereignty Initiative. It wasn’t a hand-to-mouth existence, she wrote in an article for Montana State, but a “knowledge of a vast landscape, including an intimate understanding of animals, plants, season, and climate, passed down for millennia and retained as a matter of life and death.”

With bison meat at the center of the efforts, the BNFSI is working to bring other foods from the northern Plains Native American diet in line with modern palates.

The BNFSI has received a $5 million grant from the U.S. Department of Agriculture to carry out that work, in partnership with Nueta Hidatsa Sahnish College in New Town, North Dakota.

Life on reservations is partly to blame for many Native people eating processed foods, Ramaker said. Food aid from the federal government, known as the Commodity Supplemental Food Program, has long been shipped to reservations in the form of boxes full of packaged foods. “We were forced onto the reservations, where there was replacement food sent by the government — white flour, white sugar, canned meat, salt, and baking powder,” she said.

Experts say processed foods contribute to chronic inflammation, which in turn leads to heart disease, cancer, and diabetes, which occurs at three times the rate in Native Americans as it does in white people.

Studies show that people’s mental and physical health declines when they consume a processed food diet. “In the last decade there’s a growing amount of research on the impact of good nutrition on suicide ideation, attempts, and completion,” said KayAnn Miller, co-executive director of the Montana Partnership to End Childhood Hunger in Bozeman, who is also involved with the BNFSI.

All Native American reservations in Montana now have community gardens, and there are at least eight gardens on the Flathead Reservation north of Missoula, home to the Confederated Salish and Kootenai Tribes. The tribe is teaching members to raise vegetables, some of them made into soup that is delivered to tribal elders. This year members grew 5 tons of produce to be given away.

Ancestral seeds are part of the effort. Each year the BNFSI sends out 200 packets of seeds for ancestral crops to Indigenous people in Montana.

Creating foods that appeal to contemporary tastes is critical to the project. The BNFSI is working with Sean Sherman, the “Sioux Chef,” to turn corn, meat, and other Native foods into appealing dishes.

Sherman founded the award-winning Owamni restaurant in Minneapolis and in 2020 opened the Indigenous Food Lab, through his nonprofit, North American Traditional Indigenous Food Systems. The lab, in downtown Minneapolis, is also a restaurant and an education and training center that creates dishes using only Indigenous foods from across the country — no dairy, cane sugar, wheat flour, beef, chicken, or other ingredients from what he calls the colonizers.

“We’re not cooking like it’s 1491,” Sherman said last year on the NPR program “Fresh Air,” referring to the period before European colonization. “We’re not a museum piece or something like that. We’re trying to evolve the food into the future, using as much of the knowledge from our ancestors that we can understand and just applying it to the modern world.” Among his signature dishes are bison pot roast with hominy and roast turkey with a berry-mint sauce and black walnuts.

In consultation with Sherman, Montana State University is building the country’s second Indigenous food lab, which will be housed in a new $29 million building with a state-of-the-art kitchen, Ramaker said. It will open next year and expand the ongoing work creating recipes, holding cooking workshops, feeding MSU’s more than 800 Native students, and preparing cooking videos.

Angelina Toineeta, who is Crow, is studying the BNFSI at Montana State as part of her major in agriculture. “Growing these gardens really stuck out to me,” she said. “Native American agriculture is something we’ve lost over the years, and I want to help bring that back.”

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The Dec. 1 report, prepared for the state legislature by Colorado’s Department of Health Care Policy & Financing, says that state officials approached 23 drugmakers in the last year about an importation program. Only four agreed even to discuss the proposal; none expressed interest in participating.

“Generally, the challenges that remain are outside state authority and rely on action by FDA and/or drug manufacturers,” the report reads.

Lawmakers in both parties, at the state and national level, have sought for decades to legalize importing drugs from Canada. Since 2020, when President Donald Trump’s administration opened the door to Canadian drug imports with regulations issued just weeks before he lost reelection, only a few states have filed applications with the Food and Drug Administration to create importation programs.

The FDA hasn’t yet ruled on any of them. Colorado filed its application in December 2022. Florida, which applied in 2020, has been waiting nearly three years for a decision from the Biden administration on its importation plan, pushed by Gov. Ron DeSantis, now a Republican presidential candidate.

FDA spokesperson Cherie Duvall-Jones said the FDA has not acted on states’ importation applications because it has not determined whether they would save significant money for consumers without posing risks to public health.

U.S. consumers pay some of the highest prices in the world for brand-name pharmaceuticals. Drugs are generally less expensive in Canada, where the government controls prices.

Under Trump, the federal government declared that importing drugs from Canada could be done safely — satisfying for the first time a condition spelled out in a 2003 law.

But Colorado officials cited another catch: The rule didn’t take into account that states would have to negotiate directly with drug manufacturers, which oppose selling their brand-name drugs in the United States at Canadian prices.

“As the federal Final Rule did not contemplate the need for this negotiation step, we have urged FDA to release further guidance regarding how states can operationalize the program with this in mind, but to date, no guidance has been released,” the Colorado report said.

Unlike many other Trump administration health policies, Biden hasn’t revoked or revised the importation rule. But his administration hasn’t shown much support for the idea, either. Health and Human Services Secretary Xavier Becerra told KFF Health News last December that he wouldn’t commit to the FDA ruling on any state application in 2023.

The president has repeatedly suggested that under his watch Americans would be able to import drugs from Canada.

During his 2020 campaign, Biden said he’d allow for the importation of drugs the government certified as safe. In 2021, he ordered the FDA to work with states to import prescription drugs from Canada. In a 2022 speech about how he planned to reduce drug prices, he cited Colorado estimates of how much people in the state could save through importation.

FDA officials responded to Colorado’s application in March by asking for more information and a smaller list of drugs to target, to prove that importation could save money. Colorado’s initial application listed 112 high-cost drugs. The state estimates residents and employers could save an average of 65% on the costs of those medicines, including drugs for diabetes, asthma, and cancer.

Colorado said it plans to submit an updated application early next year. By then, it’s possible the FDA will have ruled on Florida’s application.

The Colorado and Florida importation proposals differ. Colorado’s program is intended to directly help consumers obtain cheaper medicines. Florida’s plan aims to cut spending on drugs in government programs such as Medicaid, the prison system, and facilities run by the state Department of Children and Families.

The drug industry has argued the Trump administration didn’t properly certify that drugs imported from Canada would be safe, jeopardizing Americans’ health. Canada’s government, too, has expressed concern that U.S. imports would lead to shortages and higher prices in its country.

Drug manufacturers “will do anything to protect their golden goose that is United States consumers and patients who pay the largest amount for drugs in the world,” said Colorado state Sen. Sonya Jaquez Lewis, a Democrat, pharmacist, and leading advocate for drug importation.

The White House and Congress, she said, should force drugmakers to negotiate with states to start importation programs.

In its initial response to Colorado’s application, the FDA listed several types of information it still needed, including plans on labeling and drug eligibility, according to a March letter from the FDA to the state. Another problem, the FDA said: The state planned to import medicines across the U.S. border in Buffalo, New York. The FDA said the only port of entry it allows for medicines is in Detroit.

Colorado officials told the FDA in March that without federal approval of its application, it was having difficulty securing commitments from drug manufacturers to obtain medicines.

“It has been made clear that potential partners will be more interested in committing to participate once our program has been approved by the FDA,” Kim Bimestefer, executive director of the Colorado Department of Health Care Policy & Financing, wrote to the FDA.

“While we understand the regulatory framework does not permit for a provisional approval, we know that showing progress towards an approved program will aid in our negotiations with drug manufacturers,” she added.

Another complication is that the FDA’s rule doesn’t allow states to buy drugs directly from secondary drug wholesalers. Instead, they must purchase medicines directly from manufacturers, said Marc Williams, a spokesperson for the Colorado agency.

That’s proven challenging because drug manufacturers have prohibited the export of products intended for sale in Canada to the U.S., Williams said.

“Without their permission and a supply agreement directly with a manufacturer, Colorado is unable to buy and import these lower-priced drugs that would save people money,” he said.

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But this transaction was different from typical exchanges that occur every day at thousands of pharmacies across the United States. The cost to Phoenix, 50, who lives in the nearby community of Falcon and has no health insurance, was nothing.

Open Bible Medical Clinic and Pharmacy runs Colorado’s only current drug donation program. Most of the medications it dispenses come from nursing homes across the state.

“We take any and all of it,” said founding pharmacist Frieda Martin, who used those donations to fill 1,900 prescriptions for 200 low-income and uninsured adults last year. Participants pay a $15 annual registration fee for free medications and care at the adjoining clinic.

Drug donation programs like this one in Colorado and one in California take unopened, unexpired medications from health care facilities, private residents, pharmacies, or prisons that pile up when patients are discharged, change drugs, or die, and re-dispense them to uninsured and low-income patients. About 8% of adults in the U.S. who took prescription drugs in 2021, about 9 million people, did not take them as prescribed because of cost, and uninsured adults were more likely to skip medications than those with insurance, according to the National Health Interview Survey.

The programs vary in size but are often run by charitable pharmacies, nonprofits, or governments, and keep drugs out of landfills or incinerators, where an estimated $11 billion in unused medications are disposed of each year.

Forty-four states already have laws allowing drug donations, according to the National Conference of State Legislatures. Many programs, like Colorado’s, are small or underutilized. Now, Colorado and other states are seeking to expand their approach.

“Drug donation programs are effective. There is a huge need for them. And there are opportunities for states to help their residents by enacting new laws,” said George Wang, a co-founder of SIRUM, which stands for Supporting Initiatives to Redistribute Unused Medicine, a nonprofit with the largest network of drug donors and distributors in the U.S.

Colorado Senate Majority Leader Robert Rodriguez, a Democrat, said he plans to introduce a bill next year to create a drug donation program to help the estimated 10% of state residents who can’t fill their prescriptions because of cost.

Similarly, legislation in California signed last year allows expansion of the state’s first and only drug donation program, Better Health Pharmacy in Santa Clara County, to San Mateo and San Francisco counties. Kathy Le, the supervising pharmacist at Better Health, said it is in “the early stages” of working with other county-run pharmacies in California to develop similar programs.

The Wyoming Medication Donation Program, based in Cheyenne, uses mail distribution to reach residents, including those in remote parts of the state who may not have local pharmacies, said Sarah Gilliard, a pharmacist and its program manager. The program mails a total of approximately 16,000 free prescriptions annually to 2,000 Wyoming residents who are low-income, uninsured, or underinsured.

“Access is definitely a big consideration when it comes to the design of our program,” she said.

Many of the Wyoming program’s participants are 65 and older, on Medicare, with fixed incomes and unaffordable copays, but Gilliard said there has been a recent increase in participants between the ages of 20 and 40. Wyoming is one of 10 states that have not expanded Medicaid to cover more low-income residents, which could be a factor in that uptick, Gilliard said.

Donations come from all 50 states, with the majority from people who find the program online or through word of mouth. Sometimes donors tuck handwritten notes inside the packages about the high cost of medication or memories of a relative who died.

Gilliard saves each one and tacks them to the pharmacy wall.

Wyoming’s program, with its central state-run pharmacy that receives, processes, and mails prescriptions to residents, could be a model for Colorado, said Gina Moore, a pharmacist and senior associate dean at the University of Colorado’s Skaggs School of Pharmacy and Pharmaceutical Sciences in Aurora. Moore co-authored a task force report for the state government last December about the feasibility of a drug donation program.

The report noted the success of programs with external funding, which, in Wyoming’s case, comes directly from taxpayer dollars. Using Wyoming’s budget, it projected a Colorado drug donation program would cost an estimated $431,000 in the first year, with a pharmacist and pharmacy technician serving roughly 1,500 patients.

In Colorado Springs, Martin and her husband, Jeff Martin, who is the executive director of Open Bible Medical Clinic and Pharmacy, believe a charitable, volunteer-run model like theirs would be feasible for Colorado, and they wonder how their long-running pharmacy will fit in with potential state-run efforts. In the task force report, Moore and her colleagues write that the state-run model and the Martins’ program could coexist.

Since Colorado enacted a law to allow drug donation in 2005, it has been amended several times in attempts to help it grow. But the state has not invested money or infrastructure to make a drug donation program take off.

Drug donations mailed to Open Bible dwindled during the pandemic and are only now slowly rebounding. The pharmacy ships roughly half of all donated medications to clinics across Colorado that serve uninsured and low-income patients in other cities such as Denver, Loveland, and Longmont.

Elsewhere in the U.S., SIRUM ensures that donors have packaging to ship donated medications, and it provides software to make inventorying and dispensing easier. Recently, it built a live online inventory of medications for Good Pill, a nonprofit pharmacy that mails 90-day prescriptions for about $6 to residents of Illinois and Georgia.

SIRUM helps facilitate donations for California’s Better Health Pharmacy, which has dispensed medications to 15,000 Santa Clara County residents since opening in 2015, Le said. Many are uninsured, underinsured, and speak Spanish or Vietnamese. Ten volunteers, often students, help log donations, and Better Health Pharmacy fills roughly 40,000 prescriptions a year with annual operating costs of just over $1 million, according to Le and Santa Clara County public health officials.

Besides prescriptions, Better Health Pharmacy provides free covid antigen tests and flu vaccinations to address its community’s needs. “We try to come up with creative solutions to expand the scope of our services,” Le said.

This commitment to addressing gaps in health care access and reducing impact on the environment means the “timing is right” for expansion of drug donation programs in California and beyond, said Monika Roy, assistant health officer and communicable disease controller at Santa Clara County’s Public Health Department.

“During the pandemic, inequities in access to care were magnified,” Roy said. “When we have solutions like these, it’s a step forward to address both equity and climate change in the same model.”

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Twice, she’d tried to use Montana’s public assistance help line to complete an interview required to recertify her Supplemental Nutrition Assistance Program, or SNAP, benefits. Each time, the call dropped after more than an hour on hold.

“I was ready to cry,” Brost said as she stood in line with about a dozen other people waiting for the office to open on a recent November morning. “I’ve got a hungry 13-year-old kid.”

Low-income families that need safety-net services, such as food and cash assistance, have become collateral damage in the bureaucratic scramble to determine whether tens of millions of people still qualify for Medicaid after a pandemic-era freeze on disenrollment ended this spring. These are people whose applications and renewal forms have been delayed or lost, or who, like Brost, can’t reach overwhelmed government call center workers.

The impact on services for low-income families is an overlooked consequence of the Medicaid “unwinding,” which has led to coverage being terminated for millions of people since April, with millions more expected to lose coverage in the coming months.

“The Medicaid unwinding has created huge problems for administrative staff,” said Leighton Ku, director of the Center for Health Policy Research at George Washington University’s Milken Institute School of Public Health.

Most states rely on the same workers and computer systems to sort eligibility for Medicaid and SNAP, according to the Center on Budget and Policy Priorities, a left-leaning think tank in Washington, D.C. The difficulty of signing up for other public assistance benefits varies, depending on how each state sets up its programs and how well agencies are staffed to handle extra work caused by Medicaid redeterminations.

People seeking public aid have historically encountered long call center wait times and limited options for in-person help. Those long-standing problems have worsened as record numbers of Medicaid recipients seek help with enrollment.

Attorneys and organizations assisting applicants for food benefits in Montana, Missouri, and Virginia, for example, said applications have vanished without a response and phone calls to workers determining eligibility frequently go unanswered.

“Our clients are already living on a razor’s edge, and this can just knock them off,” said Megan Dishong, deputy director of the Montana Legal Services Association.

SNAP enrollment is about half that of Medicaid. In April, nearly 42 million Americans received food assistance, compared with 87.4 million enrolled in the health coverage program.  

SNAP itself has undergone major changes this year — a policy that increased benefits during the pandemic expired, and work requirements have been reinstated. According to the most recent federal data, SNAP enrollment dropped by 1 million from January to August, much less than the decline in Medicaid enrollment that started in April.

Still, official data sources don’t capture delays and other difficulties people face in getting benefits.

In Virginia, where local offices of the state Department of Social Services handle Medicaid and SNAP applications, “I’ve had several clients who have submitted applications and they’ve just gone into the ether,” said Majesta-Doré Legnini, an Equal Justice Works fellow at the Legal Aid Justice Center who works on SNAP issues.

A client applying for assistance for the first time didn’t hear anything for three months and had to refile. Another got benefits after 2½ months, after having endured application processing delays, a denial letter, and an appeal. A family with mixed immigration status — the children qualified for benefits — didn’t have benefits for eight months after being erroneously cut off and then experienced delays after reapplying.

Virginia is supposed to process each application within 30 days. “Most of my clients have kids that are under 15,” Legnini said, and many tell her “they’re having trouble getting enough food to feed their kids.” The Virginia Department of Social Services did not answer questions from KFF Health News.

In Missouri, a federal lawsuit filed before the unwinding began alleges that a dysfunctional system prevents low-income residents from getting food aid. More than half of Missouri applicants were denied aid in July because they couldn’t complete an interview — not because they were ineligible, according to a document filed in the case.

The application of Mary Holmes, a 57-year-old St. Louis woman with throat cancer and other chronic conditions, was denied in February 2022 because she couldn’t reach a call center to complete her interview. Holmes repeatedly phoned the call center but waited for hours on hold, often with hundreds of people ahead of her. Her benefits were reinstated after the judge admonished the state for the long waits during a March 2022 hearing. The lawsuit remains open.

Now, with Missouri reassessing the Medicaid enrollment of more than 1 million recipients, advocates said those systemic flaws have escalated into a crisis for the most vulnerable.

“It’s a major firestorm with both these things going on at once,” said Joel Ferber, director of advocacy for Legal Services of Eastern Missouri, which represents Holmes and the other plaintiffs.

State officials said they had “made significant strides to make interviews more widely available,” according to a recent case filing, such as by hiring “outside vendors to handle Medicaid calls to free up more state employees to handle SNAP interviews.”

Montana officials said the Medicaid redetermination process similarly collided with an already troubled system in that state.

In September, Charlie Brereton, director of the Montana Department of Public Health and Human Services, told lawmakers the state was working to improve its public assistance help line, “which, frankly, has been plagued with some challenges and issues for many, many years.”

Brereton said the agency increased the wages of client coordinators to fill in-person jobs. The state contracted about 50 workers from national agencies to supplement the call center’s staff and created a separate queue on its help line for people applying for food or temporary cash assistance.

Jon Ebelt, a Montana health department spokesperson, didn’t directly answer how long SNAP and cash assistance callers are waiting on hold on average, but said applications “are being processed in a timely fashion.”

People trying to use the state’s system said the long waits persisted in November.

Since April, nearly 5,000 fewer Montanans are receiving SNAP benefits. But that doesn’t necessarily mean fewer people qualify, said Lorianne Burhop, chief policy officer for the Montana Food Bank Network. Clients without internet access, unlimited cellphone minutes, or the ability to travel to a public assistance office may not be able to jump through the hoops to keep their benefits.

“We’ve seen consistently high numbers at food banks, whereas SNAP, we’ve seen trickling down,” Burhop said. “I think you have to consider access as a factor that’s driving that decline.”

In Missoula, DeAnna Marchand waited on hold on Montana’s help line as a November deadline approached. She fell into a category of people facing multiple cutoffs: one to recertify food assistance for her and her grandson, another to prove she still qualifies for the Medicaid program that pays for her in-home caregiver, and a third to keep her grandson’s Medicaid.

“I don’t know what they want,” Marchand said. “How am I supposed to get that if I can’t talk with somebody?”

After half an hour, she followed prompts to schedule a callback. But an automated voice announced slots were full and instructed her to wait on hold again. An hour later, the call dropped.

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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 Defense Department’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 the Pentagon, it is working “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.

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Utah has dropped more than 130,000 out of about 500,000 Medicaid beneficiaries since April, after the federal government lifted a pandemic-era requirement that states keep people enrolled in the insurance program for low-income people. Since then, every state has started what’s called an “unwinding” to reassess whether people in Medicaid are still eligible and drop those no longer qualified — including people who fail to respond to government inquiries.

Utah’s survey sheds light on the fate of the 11 million people cut from the program nationwide so far. While officials predicted some of them would wind up uninsured, little information is yet available about how many obtained coverage elsewhere. States have renewed Medicaid coverage for more than 20 million people, according to KFF’s unwinding tracker.

The Utah survey, said Arielle Kane, director of Medicaid initiatives at the advocacy group Families USA, “does, unfortunately, give us a window, in a bad way, as Utah is a state with very low unemployment — so in a state with higher unemployment it may be worse.”

On top of the pandemic throwing millions of Americans out of work and onto Medicaid rolls, in 2020 Utah began expanding its program under the Affordable Care Act, raising eligibility to cover more working people with low incomes. As a result, tens of thousands who enrolled three years ago had never been through the process of renewing their coverage.

Utah’s Medicaid director, Jennifer Strohecker, announced the results of the survey of disenrolled people on Nov. 14. “This is really challenging for us and concerning to us as we consider what this means on the population,” she said.

Advocates for expanded U.S. insurance coverage fear many people left uninsured by the unwinding are children, as they make up more than 40% of Medicaid enrollees.

The survey had 1,003 respondents and a margin of error of plus or minus 3%, said Kolbi Young, a spokesperson for the Medicaid agency. The agency declined to make the full survey results available, saying they’re still under review.

Nationwide, there are other signs that many people dropped from Medicaid are winding up uninsured. Epic Research, a division of the electronic medical records company, published a study Nov. 17 showing that uninsured emergency room visits increased substantially this summer, after the unwinding began.

The researchers examined ER records from nearly 1,300 hospitals. They found that the self-pay rate among patients increased from 6.1% in March to 8.5% in August — the highest rate observed since the first weeks of the pandemic.

Even before the pandemic, it was typical for many people who lost Medicaid coverage to go without insurance for a time, said Robin Rudowitz, a Medicaid policy researcher and vice president at KFF. “We do know from earlier research that following a disenrollment from Medicaid, two-thirds of people had a period of uninsurance over the course of the following year,” she said.

So Utah’s survey results — showing about a third of disenrolled people lack insurance — is “not outlandish, but it is very concerning,” said Emily Zheutlin, a health policy analyst with the Utah Health Policy Project and a member of the state’s Medicaid advisory board.

She said people in the state have had difficulty renewing their Medicaid coverage, with long wait times on calls to the state Medicaid agency. Many people also don’t know they need to reverify their eligibility, she said.

Without health coverage, people may delay seeking needed care or be left with unaffordable bills when they get it.

Rachel Craig, government affairs manager for the Association for Utah Community Health, which represents community health centers, had feared up to half of those disenrolled from Medicaid would be uninsured.

“This is better than expected, though it’s still a big number,” she said.

But she said the state’s survey could be skewed because people with insurance may be more likely to respond than people who are uninsured.

KFF Health News data journalist Hannah Recht contributed to this report.

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“We want her to stay in her house,” Jemmott said. “That’s what’s probably keeping her alive, because she’s in her element, not in a strange place.” 

The private insurance market has proved wildly inadequate in providing financial security for most of the millions of older Americans who might need home health aides, assisted living, or other types of assistance with daily living. 

For decades, the industry severely underestimated how many policyholders would use their coverage, how long they would live, and how much their care would cost. 

And as Jemmott belatedly discovered, the older generation of plans — those from the 1980s — often covered only nursing homes. 

Only 3% to 4% of Americans 50 and older pay for a long-term care policy, according to LIMRA, an insurance marketing and research association. That stands in stark contrast to federal estimates that 70% of people 65 and older will need critical services before they die. 

Repeated government efforts to create a functioning market for long-term care insurance — or to provide public alternatives — have never taken hold. Today, most insurers have stopped selling stand-alone long-term care policies: The ones that still exist are too expensive for most people. And they have become less affordable each year, with insurers raising premiums higher and higher. Many policyholders face painful choices to pay more, pare benefits, or drop coverage altogether. 

“It’s a giant bait-and-switch,” said Laura Lunceford, 69, of Sandy, Utah, whose annual premium with her husband leaped to more than $5,700 in 2019 from less than $3,800. Her stomach knots up a couple of months before the next premium is due, as she fears another spike. “They had a business model that just wasn’t sustainable from the get-go,” she said. “Why they didn’t know that is beyond me, but now we’re getting punished for their lack of foresight.”

The glaring gaps in access to coverage persist despite steady increases in overall payouts. Last year, insurers paid more than $13 billion to cover 345,000 long-term care claims, according to industry figures. Many policyholders and their relatives reported that their plans helped them avert financial catastrophes when they faced long-term care costs that would have otherwise eviscerated their savings. 

But others have been startled to learn that policies they paid into over decades will not fully cover the escalating present-day costs of home health aides, assisted living facilities, or nursing homes. And in other cases, people entitled to benefits confront lengthy response times to coverage requests or outright denials, according to records kept by the National Association of Insurance Commissioners, the organization of state regulators. 

Jesse Slome, executive director of the American Association for Long-Term Care Insurance, an industry trade group, said long-term care was the most challenging type of insurance to manage. “You need multiple crystal balls,” Slome said. “And you have to look 20 years into the future and be right.”

The Pandemic Paused a Long-Term Decline 

The industry’s wobbly finances haven’t steadied despite a brief profitable surge during the coronavirus pandemic. Earnings rose because thousands of people who were drawing benefits, many in nursing homes or assisted living facilities, died from covid-19, and other policyholders died before using their insurance. Others stopped tapping their benefits because they fled facilities and went to live with their families, who provided unpaid care. 

Overall, earnings went from $2.3 billion in losses in 2019 to two years of profits totaling $1.1 billion, before receding into the red in 2022 by losing $304 million, according to Fitch Ratings. 

Still, none of that was enough to reverse the industry’s long-term decline. Doug Baker, a director in Fitch’s U.S. life insurance group, said long-term care insurance “is one of the riskiest in our universe” because of the lingering financial burden from underestimating the number of people who would tap their policies. 

More insurers now offer hybrid plans that combine life insurance with long-term care. Those policies are less generous than the ones offered a decade ago — and using the long-term care benefit drains some or all of the money policyholders hoped to leave to their heirs. 

“I don’t think people will offer unlimited again,” said Tom McInerney, the chief executive of Genworth Financial, which suspended selling plans through brokers in 2019. “One way or another, taxpayers are going to have to pay more for long-term care needs of the baby boomers.” 

Many experts believe it’s untenable to expect that a private insurance market can protect most people from the growing burden of long-term care costs. 

“The whole situation is poorly suited to that kind of insurance offering,” said Robert Saldin, a political science professor at the University of Montana who studies the industry. 

Falling Profits and Skyrocketing Premiums

Starting in the 1970s, long-term care insurance was touted as a way to keep older people from eroding their retirement savings or resorting to Medicaid, the state-federal program for the poor and disabled. Early plans were limited to nursing home care but later expanded to cover in-home care and assisted living centers. Sales of the policies doubled from 1990 to 2002.

As demand grew, however, there were signs the industry had vastly miscalculated the cost of its products. Insurers set early policy prices competitively low, based on actuarial models that turned out to be markedly inaccurate. Forecasters’ estimates of policyholders’ longevity were wrong. U.S. life expectancy increased to nearly 77 years in 2000 from about 68 years in 1950, federal records show. And as people lived longer, their need for care increased. 

Industry officials also failed to account for the behavior of savvy consumers determined to keep their long-term care coverage. Insurers counted on policy lapse rates — people giving up their policies or defaulting on payments — of about 4% annually. The actual lapse rate was closer to 1%. 

As the miscalculations sent profits plummeting, insurers raised premiums or exited the market. By 2020, sales of traditional policies had dropped to 49,000 and the number of carriers offering plans had fallen to fewer than a dozen from more than 100. 

Premiums for some consumers doubled in just a year or two. Three class-action lawsuits accused Genworth of failing to disclose to policyholders that it had planned multiyear rate increases, leaving them without information they needed to decide whether to keep their policies. Genworth settled the lawsuits with offers to allow customers to adjust their policies, and in some cases it paid cash damage to those who accepted reduced benefits. The company did not admit wrongdoing.

The increases continue. AM Best, a rating agency, said in a report last November that Genworth “will continue to need annual rate increases for at least several more years to reach economic break-even.” 

Prices for new policies have jumped, too. A decade ago, a couple aged 55 could expect to pay about $3,725 a year for a policy that included $162,000 in total benefits and 3% annual inflation protection, according to the American Association for Long-Term Care Insurance. Today, a policy that is virtually the same would cost $5,025, 35% more, even as rising health costs and inflation have eroded the value of the benefits. 

And that’s only for the people who can qualify. To limit their losses, insurers have narrowed the eligible pool of clients. In 2021, about 30% of applicants ages 60 to 64 were denied long-term care insurance. For applicants 70 to 74, the rejection rate was 47%. Even among people in their 50s, more than 1 in 5 were turned down. Chronic health conditions, a history of stroke or diabetes, or psychiatric illness may all be grounds for disqualification. 

At the same time, insurers began scrutinizing claims more closely. “They tightened their belts,” said Alan Kassan, a senior partner with the California law firm Kantor & Kantor, which represents clients challenging denials. “Then they tightened their claim administration and started denying claims more and more.” 

In 2022, the proportion of traditional long-term care claim denials varied, from 4.5% in Rhode Island to 9.6% in Alaska, according to the National Association of Insurance Commissioners. 

Despite efforts to limit liability, financial problems forced several high-profile insurance providers to drastically revise policy terms and premiums or go into insolvency, affecting the investments of thousands of clients. 

They included Alice Kempski, a retired nurse who, after her husband died, bought a policy from the insurance company Penn Treaty and American Network in 2004 on the advice of a financial adviser, paying premiums of $180 a month for 16 years. By 2017, she was hobbled by osteoporosis and was struggling to manage her multiple medications, according to her daughter, Ann Kempski. She sold the family home in Wilmington, Delaware, in 2017 and, now needing help bathing, moved to an assisted living center there. But when the family tried to file a claim, they discovered that Penn Treaty was insolvent and the policy had been taken over by the Pennsylvania state insurance guaranty fund. 

The fund had frozen Kempski’s benefits and increased her premiums to about $280 a month, her daughter said. Her doctor told Penn that she had “mild dementia” and osteoporosis and should be in an assisted living facility. But the insurer said that there was not enough evidence that she needed help with two daily living activities or had severe cognitive impairment, conditions that would trigger coverage, according to correspondence between Kempski and the company. 

Kempski was paying roughly $5,400 a month out-of-pocket to the assisted living center. She moved in with her daughter when the pandemic hit, but she continued to pay full rent to the facility to save her spot until she returned in 2021. In March of that year, when her daughter was preparing to refile a claim for long-term care insurance and her premiums had reached $320 a month, Kempski had a massive stroke. She died the next month. The insurer never paid for any of her care. 

Coverage in a Facility but Not at Home

The policy held by Angela Jemmott’s mother, Jewell Thomas, went unused for a different reason: Like many older policies, it covered only skilled nursing care in a facility. Her children had purchased the policy after Thomas’ husband died at 56. 

But decades later, once Thomas developed dementia in her 80s, her children realized how desperately their mother wanted to stay home. Jemmott said they tried to add a rider to the policy to cover home care but were told that their mother’s age (older than 75) barred add-ons. Now the siblings jointly pay about $4,000 a month for two home health aides, while still paying the insurance premium of more than $2,500 a year. “We feel like if we stop paying it, another unforeseen need will arise and cause us to wish we kept it,” Jemmott said. 

Not all policyholders are displeased. 

Bert Minushkin, of Royal Palm Beach, Florida, paid monthly premiums for 27 years, beginning in 1993 when the policy was offered as a benefit by Westinghouse Electric Corp., where he worked as a nuclear engineer. Over time, he paid about $120,000 toward the policy, said his daughter Lisa Heffley, 61, of Louisville, Kentucky. 

Diagnosed with dementia, Minushkin began declining swiftly in 2019. His wife spent $220,000 on assisted living facilities and private aides for him over three years, with about $90,000 of the cost offset by his policy, Heffley said. He died in February 2022 at age 91. 

“He didn’t break even, but thank God he had it,” she said. 

Turning to Crowdfunding

Many experts say what’s needed is a government-subsidized or public program that requires people to carry long-term care insurance, as the Netherlands and Singapore have. But federal efforts to create such a system, including the CLASS Act, which was repealed in 2013, and the WISH Act, introduced in 2021, have failed to gain traction in Congress. At the state level, Washington this summer started a first-in-the-nation program that will provide long-term care benefits for residents who pay into a fund, but the maximum benefit of $36,500 will not cover a year in most assisted living facilities.

Lack of a safety net leaves some people unprotected, like Jeffrey Tanck, a real estate broker in Washington, D.C. In 2021, his mother, Sue Tanck, at 75, suffered a serious fall, leaving her with broken arms and a traumatic brain injury. She had been the primary caretaker for his father, Roger, then 77, who had rapidly worsening dementia. 

Without warning, Jeffrey Tanck had to assume charge of his father’s care, moving him into an assisted living center in Ocala, Florida, that now charges $4,600 a month, and had to get his mother into a skilled nursing facility paid for by Medicaid. With no money to cover his father’s costs until he sold their house, Tanck resorted to a plea on the crowdfunding site GoFundMe. 

Wanting to shield himself from a similar financial crisis somewhere down the road, Tanck, who is 51, applied for long-term care insurance, only to be denied. The reason? He takes antidepressants, which help him cope with the anxiety and stress of caring for his parents. 

“What are people supposed to do?” Tanck asked. “I’m going to need something.” 

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Now, as regulators propose restrictions on their use or manufacturing, Pentagon officials have told Congress that eliminating the chemicals would undermine military readiness.

PFAS, known as “forever chemicals” because they don’t break down in the environment and can build up in the human body, have been associated with such health problems as cancer. In July, a new federal study showed a direct link between testicular cancer and PFOS, a PFAS chemical that has been found in the blood of thousands of military personnel.

Congress has pressured the Defense Department to clean up U.S. military sites and take health concerns more seriously. Under the fiscal 2023 James M. Inhofe National Defense Authorization Act, the Pentagon was required to assess the ubiquity of per- and polyfluoroalkyl substances, or PFAS, in products and equipment used by the military.

In a report delivered to Congress in August, Defense Department officials pushed back against health concerns raised by environmental groups and regulators. “DoD is reliant on the critically important chemical and physical properties of PFAS to provide required performance for the technologies and consumable items and articles which enable military readiness and sustainment,” the authors said.

Further, they wrote: “Losing access to PFAS due to overly broad regulations or severe market contractions would greatly impact national security and DoD’s ability to fulfill its mission.”

According to the report, most major weapons systems, their components, microelectronic chips, lithium-ion batteries, and other products contain PFAS chemicals. These include helicopters, airplanes, submarines, missiles, torpedoes, tanks, and assault vehicles; munitions; semiconductors and microelectronics; and metalworking, cooling, and fire suppression systems — the latter especially aboard Navy ships.

PFAS are also present in textiles such as uniforms, footwear, tents, and duffel bags, for which the chemicals help repel water and oil and increase durability, as well as nuclear, chemical, and biological warfare protective gear, the report says.

The Pentagon’s report to Congress was released last month by the American Chemistry Council.

Defending a Tradition of Defense

Military officials’ defense of PFAS use comes as concerns mount over the health risks associated with the chemicals. Beyond cancer, some types of PFAS have been linked to low birth weight, developmental delays in children, thyroid dysfunction, and reduced response to immunizations. Health concerns grew with the release of the study definitively linking testicular cancer in military firefighters to a foam retardant containing PFAS.

But that wasn’t the first time U.S. military officials were warned about the potential health threat. In the 1970s, Air Force researchers found that firefighting foam containing PFAS was poisonous to fish and, by the 1980s, to mice.

In 1991, the U.S. Army Corps of Engineers told Fort Carson, Colorado, to stop using firefighting retardants containing PFAS because they were “considered hazardous material in a number of states.”

The Environmental Protection Agency has struggled to determine whether there are acceptable levels of PFAS in drinking water supplies, given the existence of hundreds of varieties of these chemicals. But in March, the EPA did propose federal limits on the levels of PFAS in drinking water supplies.

The regulation would dramatically reduce limits on six types of the chemicals, with caps on the most common compounds, known as PFOA and PFOS, at 4 parts per trillion. Currently, the Defense Department’s threshold for drinking water is 70 parts per trillion based on a 2016 EPA advisory. As part of a widespread testing program, if levels are found on installations or in communities above that amount, the military furnishes alternative drinking water supplies.

The Defense Department has used PFAS-laced firefighting foam along with other products containing the chemicals for more than a half-century, leading to the contamination of at least 359 military sites or nearby communities, with an additional 248 under investigation, according to the department.

In its report, however, the Department of Defense did not address the health concerns and noted that there is “no consensus definition of PFAS as a chemical class.” Further, it said that the broad term, which addresses thousands of man-made chemical chains, “does not inform whether a compound is harmful or not.”

Researchers with the Environmental Working Group, an advocacy group that focuses on PFAS contamination nationwide, said the report lacked acknowledgment of the health risks or concerns posed by PFAS and ignored the availability of PFAS-free replacements for material, tents, and duffel bags.

The military report also did not address possible solutions or research on non-PFAS alternatives or address replacement costs, noted EWG’s Jared Hayes, a senior policy analyst, and David Andrews, a senior scientist.

“It’s kind of like that report you turn in at school,” Andrews said, “when you get a comment back that you did the minimum amount possible.”

Andrews added that the report fell short in effort and scope.

The Defense Department announced this year it would stop buying firefighting foam containing PFAS by year’s end and phase it out altogether in 2024. It stopped using the foam for training in 2020, by order of Congress.

The report noted, however, that while new Navy ships are being designed with alternative fire suppression systems such as water mists, “limited use of [PFAS-containing systems] remains for those spaces where the alternatives are not appropriate,” such as existing ships where there is no alternative foam that could be swapped into current systems.

According to the report, “the safety and survivability of naval ships and crew” from fires on ships depends on current PFAS-based firefighting foams and their use will continue until a capable alternative is found.

Pervasive Yet Elusive

Commercially, PFAS chemicals are used in food packaging, nonstick cookware, stain repellents, cosmetics, and other consumer products.

The fiscal 2023 National Defense Authorization Act also required the Defense Department to identify consumer products containing PFAS and stop purchasing them, including nonstick cookware and utensils in dining facilities and ship galleys as well as stain-repellent upholstered furniture, carpeting, and rugs.

But in a briefing to Congress in August accompanying the report on essential uses, Pentagon officials said they couldn’t comply with the law’s deadline of April 1, 2023, because manufacturers don’t usually disclose the levels of PFAS in their products and no federal laws require them to do so.

Come Jan. 1, however, makers of these chemicals and products containing them will be required to identify these chemicals and notify “downstream” manufacturers of other products of the levels of PFAS contained in such products and ingredients, even in low concentrations, according to a federal rule published Oct. 31 by the EPA.

This would include household items like shampoo, dental floss, and food containers.

Officials reiterated that the Defense Department is committed to phasing out nonessential and noncritical products containing PFAS, including those named above as well as food packaging and personal protective firefighting equipment.

And it is “developing an approach” to remove items containing PFAS from military stores, known as exchanges, also required by the fiscal 2023 NDAA.

Risk-Benefit Assessments

In terms of “mission critical PFAS uses,” however, the Pentagon said the chemicals provide “significant benefits to the framework of U.S. critical infrastructure and national and economic security.”

Andrews of EWG noted that the industry is stepping up production of the chemicals due to market demand and added that the federal government has not proposed banning PFAS chemicals, as the Defense Department alluded to when it emphasized the critical role these substances play in national security and warned against “overly broad regulations.”

“The statements are completely unsubstantiated, and it’s almost a fear-mongering statement,” Andrews said. “I think the statement is really going beyond anything that’s even being considered in the regulatory space.”

“There haven’t been realistic proposals policy-wise of a complete ban on PFAS,” his colleague Hayes added. “What people have been pushing for and talking about are certain categories of products where there are viable alternatives, where there is a PFAS-free option. But to ban it outright? I haven’t really seen that as a realistic policy proposal.”

Kevin Fay, executive director of the Sustainable PFAS Action Network, a coalition of corporations, industry advocates, and researchers who support the use and management of PFAS compounds, said the Defense Department has a point and it is up to federal regulators to “responsibly manage” these chemicals and their use to strike a balance among environmental, health, and industrial needs.

“The U.S. Department of Defense’s report on critical PFAS uses is crystal clear: regulating PFAS through a one-size fits all approach will gravely harm national security and economic competitiveness,” Fay wrote in an email to KFF Health News.

Adding that not all PFAS compounds are the same and arguing that not all are harmful to human health, Fay said risk-based categorization and control is vital to the continued use of the chemicals.

But, he added, in locations where the chemicals pose a risk to human health, the government should act.

“The federal government should implement plans to identify and remediate contaminated sites, properly identify risk profiles of the many types of PFAS compounds, and encourage innovation by clearing the regulatory path for viable alternatives to specific dangerous compounds,” Fay wrote.

Assessments are completed or underway at 714 active and former military installations, National Guard facilities, and other former defense sites to determine the extent of contamination in groundwater, soil, and the water supply to these locations and nearby communities.

Last year, the Pentagon issued a temporary moratorium on burning materials containing PFAS. Studies have shown that the practice can release toxic gases. But on July 11, the Defense Department lifted the moratorium on incineration, along with interim guidance on PFAS disposal.

Military personnel who were exposed to PFAS — including through firefighting foam — say they live in fear that they or their family members will develop cancer as a result of their service.

“I’ve got more of some of those materials in my system than 90-plus percent of those on the planet. This is bad. It doesn’t go away,” said Christian Jacobs, who served in the Army for four years and worked as a civilian Defense Department firefighter for nearly three decades. “It keeps me up at night.”

KFF Health News visual reporter Hannah Norman contributed to this report.

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

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