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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. 

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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Peterson, who has quadriplegia, is an enthusiastic participant in an unusual test of autonomous vehicles in this corner of northern Minnesota. She helped attract government funding to bring five self-driving vans to Grand Rapids, a city of 11,000 people in a region of pine and birch forests along the Mississippi River.

The project’s self-driving vans always have a human operator in the driver’s seat, poised to take over in complicated situations. But the computers are in control about 90% of the time, and they’ve given 5,000 rides since 2022 without any accidents, organizers say.

“It’s been fun. I’m really sold on it,” said Peterson, who used to rely on her power wheelchair to travel around town, even in winter.

Autonomous vehicles, which can drive themselves at least part of the time, are making news in urban areas, such as San Francisco, where extensive tests of the technology are underway.

Rural experiments have been set up in a few other states, including Iowa and Ohio. Peterson hopes the pilot projects help bring a day when fully autonomous cars and vans assist the estimated 25 million Americans whose travel is limited by disabilities.

Fully independent vehicles remain far from everyday options, as tech companies and automakers struggle to perfect the technology. Recently, for example, General Motors recalled all its self-driving cars after one struck and dragged a pedestrian who had been hit by another vehicle.

But Waymo, a corporate relative of Google, is forging ahead with fully autonomous taxi rides in multiple cities.

Peterson is among those who believe autonomous vehicles someday will become safer than human-driven models.

“Look at how many times the lightbulb failed before it worked,” she said.

Unlike many smaller towns, Grand Rapids has public buses and a taxi service. But Peterson said those options don’t always work well, especially for people with disabilities. The autonomous vehicle program, known as goMARTI, which stands for Minnesota’s Autonomous Rural Transit Initiative, offers a flexible alternative, she said. She hopes it eventually will ease a national shortage of drivers, which tends to be especially acute in rural regions.

The project is funded through the spring of 2027 with more than $13 million from federal, state, and local sources, much of it coming from the 2021 federal infrastructure bill.

The project’s distinctive Toyota minivans are outfitted by a Michigan company, May Mobility, which is backed by the Japanese auto giant and other investors. Slogans painted on the side invite the public to “Experience Self Driving in Minnesota’s Nature.” The vans bristle with technology, including cameras, radar, GPS, and laser sensors. Their computer systems constantly monitor surroundings and learn from situations they encounter, said Jon Dege, who helps manage the project for May Mobility.

Users arrange free rides via a smartphone app or the 211 social service telephone line.

On a recent chilly afternoon, a goMARTI van pulled up near Peterson’s house. She soon emerged, bundled in a bright purple parka honoring her beloved Minnesota Vikings football team. She rolled her electric wheelchair to the van, up a ramp, and into the back. Van operator Mark Haase helped strap the wheelchair in, then climbed into the driver’s seat for a demonstration.

As the van pulled onto the street, the steering wheel seemed to shudder, reflecting tiny adjustments the computer made. Haase kept his foot poised near the brake pedal and his hands cupped around the steering wheel, ready to take over if a complication came up. After moments when he needed to take control of the vehicle, he pressed a button telling the computer system to resume command. “It was weird at first, but it didn’t take long to get used to it and trust the system,” Haase said.

The Minnesota Department of Transportation helped direct federal money toward the Grand Rapids project, which followed a similar effort in the southern Minnesota city of Rochester. Tara Olds, the department’s director of connected and automated vehicles, said her agency sought smaller communities that wanted to give autonomous vehicles a shot.

Neither kind of driver will ever be perfect, Olds said. “You know, humans make mistakes, and computers make mistakes,” she said. But the public would understandably react differently if a fatal crash were caused by an autonomous vehicle instead of a human, she said.

Frank Douma, a research scholar at the University of Minnesota’s Center for Transportation Studies, has analyzed the Grand Rapids project and other autonomous vehicle programs. He said running such projects in smaller towns isn’t necessarily harder than doing so in urban areas. “It’s just different.”

For the foreseeable future, such services probably will need to run on predetermined routes, with regular stops, he said. It would be more complicated to have autonomous vehicles travel on demand to unfamiliar addresses out in the countryside.

Developers will need to overcome significant challenges before autonomous vehicles can become a regular part of rural life, he said. “But it’s no longer something that can be dismissed as impossible.”

A 2022 report from the National Disability Institute predicted that autonomous vehicles could help many people with disabilities get out of their homes and obtain jobs.

Tom Foley, the group’s executive director, said a lack of transportation often causes isolation, which can lead to mental health problems. “There’s an epidemic of loneliness, particularly for older people and particularly for people with disabilities,” he said.

Foley, who is blind, has tried fully autonomous vehicles in San Francisco. He believes someday they will become a safe and practical alternative to human drivers, including in rural areas. “They don’t text. They don’t drink. They don’t get distracted,” he said.

For now, most riders who use wheelchairs need attendants to secure them inside a van before it starts moving. But researchers are looking into ways to automate that task so people who use wheelchairs can take advantage of fully autonomous vehicles.

The Grand Rapids project covers 35 miles of road, with 71 stops. The routes initially avoided parking lots, where human drivers often make unexpected decisions, Dege said. But organizers recognized the street-side stops could be challenging for many people, especially if they’re among the 10% of goMARTI riders who use wheelchairs. The autonomous vans now drive into some parking lots to pick riders up at the door.

During the recent demonstration ride with Peterson and Haase, the van turned into a clinic parking lot. A lady in an orange car cut across the lot, heading for the front of the van. The computer driving the van hit the brakes. A split second later, Haase did the same. The orange car’s driver smiled and gave a friendly Midwestern wave as she drove past.

The autonomous vans have gone out in nearly all kinds of weather, which can be a challenge in northern Minnesota. Grand Rapids received more than 7 feet of snow last winter.

“There were only three or four times when it was so snowy we had to pull it in,” Dege said. The autonomous driving systems can handle snowflakes in the air and ice on the pavement, he said. They tend to get confused by snow piles, however. The human operators step in to assist in those situations while the computers learn how to master them.

The robot drivers can get stymied as well by roundabouts, also known as traffic circles. The setups are touted as safer than four-way stops, but they can befuddle human drivers too.

Haase took control each time the van approached a roundabout. He also took the wheel as the van came up on a man riding a bicycle along the right side of the road. “Better safe than sorry,” Haase said. Once the van was a few yards past the bicycle, he pressed a button that told the robot to resume control.

Peterson takes the vans to stores, restaurants, community meetings, hockey games — “and church, of course, every Sunday and Wednesday,” she said.

She said the project has brought Grand Rapids residents together to imagine a more inclusive future. “It’s not just a fancy car,” she said.

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KFF Health News Midwest correspondent Samantha Liss discussed Missouri’s Medicaid “unwinding” on KCUR’s “Kansas City Today” on Dec. 5.

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KFF Health News senior correspondent Aneri Pattani unpacked the opioid settlement case before the Supreme Court on WBUR’s “Here & Now” on Dec. 4.

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KFF Health News rural editor and correspondent Tony Leys discussed Iowa’s rural hospitals on Iowa PBS’ “Iowa Press” on Dec. 1.

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• Read Leys’ “Rural Hospital Rescue Program Is Met With Skepticism From Administrators” with reporting from Sarah Jane Tribble

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But then something caught her attention: When she went to her doctor last month, she learned that the doctor and the hospital where she works will not accept her insurance next year.

Faced with either finding a new doctor or finding a new plan, Du Bois said the decision was easy. “I’m sticking with her because she knows everything about me,” she said of her doctor, whom she’s been seeing for more than a decade.

Du Bois isn’t the only one tuning out when commercials about the open enrollment deadline flood the airwaves each year — even though there could be good reasons to shop around. But sifting through the offerings has become such an ordeal that few people want to repeat it. Avoidance is so rampant that only 10% of beneficiaries switched Medicare Advantage plans in 2019.

Once open enrollment ends, there are limited options for a do-over. People in Medicare Advantage plans can go to another Advantage plan or back to the original, government-run Medicare from January through March. And the Centers for Medicare & Medicaid Services has expanded the criteria for granting a “special enrollment period” to make changes in drug or Advantage plans anytime.

But most seniors will generally allow their existing policy to renew automatically, like it or not.

Keeping her doctor was not Du Bois’ only reason for switching plans, though. With help from Senior PharmAssist, a Durham nonprofit that advises seniors about Medicare, she found a Humana Medicare Advantage plan that would not only be accepted by her providers but also cover her medications — saving her more than $14,000 a year, said Gina Upchurch, the group’s executive director.

Senior PharmAssist is one of the federally funded State Health Insurance Assistance Programs, known as SHIPs, available across the country to provide unbiased assistance during the open enrollment season and year-round to help beneficiaries appeal coverage denials and iron out other problems.

“Many people are simply overwhelmed by the calls, ads, the sheer number of choices, and this ‘choice overload’ contributes to decision-making paralysis,” said Upchurch. Seniors in Durham have as many as 74 Advantage plans and 20 drug-only plans to choose from, she said.

Upchurch said the big insurance companies like the way the system works now, with few customers inclined to explore other plans. “They call it ‘stickiness,’” she said. “If we had fewer and clear choices — an apple, orange, grape, or banana — most people would review options.”

In Washington state, one woman switched from a plan she had had for more than a decade to one that will cover all her drugs and next year will save an estimated $7,240, according to Tim Smolen, director of the state’s SHIP, Statewide Health Insurance Benefits Advisors.

In Northern California, another woman changed drug plans for the first time since 2012, and her current premium of $86 will plummet to 40 cents a month next year, an annual savings of about $1,000, said Pam Smith, a local director for California’s SHIP, called the Health Insurance Counseling & Advocacy Program.

And in Ohio, a woman sought help after learning that her monthly copayment for the blood thinner Eliquis would rise from $102 to $2,173 next year. A counselor with Ohio’s SHIP found another plan that will cover all her medications for the year and cost her just $1,760. If she stuck with her current plan, she would be paying an additional $24,852 for all her drugs next year, said Chris Reeg, who directs that state’s program.

In some cases, CMS tries to persuade beneficiaries to switch. Since 2012, it has sent letters every year to thousands of beneficiaries in poorly performing Advantage and drug plans, encouraging them to consider other options. These are plans that have received less than three out of five stars for three years from CMS.

“You may want to compare your plan to other plans available in your area and decide if it’s still right for you,” the letter says.

CMS allows low-scoring plans to continue to operate. In an unusual move, officials recently found that one plan had such a terrible track record that they will terminate its contract with government health programs next December.

CMS also contacts people about changing plans during open enrollment if they get a subsidy — called “extra help” — that pays for their drug plan’s monthly premium and some out-of-pocket expenses. Because some premiums will be more expensive next year, CMS is warning beneficiaries that they could be in for a surprise: a monthly bill to cover cost increases the subsidy doesn’t cover.

But many beneficiaries receive no such nudge from the government to find out if there is a better, less expensive plan that meets their needs and includes their health care providers or drugs.

That leaves many people with Medicare drug or Advantage plans on their own to decipher any changes to their plans while there is still time to enroll in another. Insurers are required to alert members with an “annual notice of change,” a booklet often more than two dozen pages long. Unless they plow through it, they may discover in January that their premiums have increased, the provider network has changed, or some drugs are no longer covered. If a drug plan isn’t offered the next year and the beneficiary doesn’t pick a new one, the insurer will select a plan of its choosing, without considering costs or needed drug coverage.

“Every year, our call volume skyrockets in January when folks get invoices for that new premium,” said Reeg, the Ohio program director. At that point, Medicare Advantage members have until March 30 to switch to another plan or enroll in government-run Medicare. There’s no similar grace period for people with stand-alone drug plans. “They are locked into that plan for the calendar year.”

One cost-saving option is the government’s Medicare Savings Program, which helps low-income beneficiaries pay their monthly premium for Medicare Part B, which covers doctor visits and other outpatient services. The Biden administration’s changes in eligibility for subsidies announced in September will extend financial assistance to an estimated 860,000 people — if they apply. In the past, only about half of those eligible applied.

Fixing a mistake after the open enrollment period ends Dec. 7 is easy for some people. Individuals who receive “extra help” to pay for drug plan premiums and those who have a subsidy to pay for Medicare’s Part B can change drug plans every three months.

At any time, beneficiaries can switch to a Medicare Advantage plan that earns the top five-star rating from CMS, if one is available. “We’ve been able to use those five-star plans as a safety net,” said Reeg, the Ohio SHIP director.

Other beneficiaries may be able to get a “special enrollment period” to switch plans after the open enrollment ends if they meet certain conditions. Local SHIP offices can help people make any of these changes when possible.

Reeg spends a lot of time trying to ensure that unwelcome surprises — like a drug that isn’t covered — don’t happen in the first place. “What we want to do is proactively educate Medicare patients so they know that they can go to the doctors and hospitals they want to go to in the upcoming year,” she said.

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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 19-year-old sophomores — Harvey is enrolled at UTSA and Mumford at Northeast Lakeview College — founded the organization Black Book Sex Ed last spring. Their mission is to educate students and others in need about sexual health and connect them with free services and products packaged into kits they distribute on campus, in the community, and through their website.

“Both of us grew up rather lower-income,” Mumford said, “so there’s a soft spot as it relates to people who say, ‘Oh, I just don’t have it right now.’ That’s part of the reason we started doing this.”

Harvey and Mumford aren’t alone. A growing number of students on college campuses nationwide are stepping in to provide other students with free or low-cost emergency contraceptives, birth control, and menstrual products.

They are also pushing back against threats to their reproductive freedom since the U.S. Supreme Court’s Dobbs decision last year, which eliminated federal abortion protections.

Although emergency contraceptives are legal in every state, some policymakers worry that in states that ban or severely restrict abortion, access to emergency contraceptives and other types of birth control may erode because of people failing to distinguish between drugs that prevent pregnancy and medications used for abortions.

“Our requests for help have quadrupled since Dobbs,” said Kelly Cleland, the executive director of the American Society for Emergency Contraception, which provides toolkits and technical assistance to help students develop what are becoming known as peer-to-peer distribution networks. Those student networks provide emergency contraceptives and bring vending machines to their campuses that carry the medications and other personal health care products. The organization has worked with students at more than 200 campuses.

Many types of emergency contraceptive pills are available over the counter and without age restrictions. Students who distribute them are generally not putting themselves at legal risk, especially if they ensure the products are in their original packaging and haven’t expired and refrain from providing medical advice, Cleland said. It’s like giving a friend a Tylenol, one advocate explained.

“It’s really growing and a really interesting new route for people to get what they need in trusted ways, especially in Texas and other states where there are repercussions from the Dobbs decision,” said Mara Gandal-Powers, director of birth control access at the National Women’s Law Center.

Like those of many student groups, Harvey and Mumford’s kits contain products — emergency contraceptive pills, tampons, lube, etc. — donated by nonprofits and companies. Black Book Sex Ed accepts financial donations as well and uses the money to buy items at big-box stores.

The University of Texas-San Antonio didn’t respond to requests for comment.

Across the country, at Bowie State University in Maryland, a graduate student took a different approach to improving student access to contraceptives.

What started as a class project last year for Jakeya Johnson’s master’s degree program in public administration and policy, eventually became state law.

Starting next year, the measure will require many Maryland public colleges to provide round-the-clock access to emergency contraception and develop a comprehensive plan to ensure students have access to all FDA-approved forms of birth control, plus abortion services.

As part of her project, Johnson, 28, started researching the availability of reproductive health care at Bowie State, and she quickly learned that options were somewhat limited. When she called the health center, she was told that emergency contraception was available only to students who went through counseling first and that, while the college prescribed birth control, there was no pharmacy on campus where students could fill their prescriptions. She proposed that the school install a vending machine stocked with emergency contraceptives, condoms, pregnancy tests, and other sexual health products. But college officials told her they didn’t have money for the machines. Her research showed that students at other colleges in Maryland faced similar roadblocks.

So, Johnson approached state Delegate Ariana Kelly, now a state senator, about introducing a bill that would require schools to provide access to emergency contraceptives and other contraceptive services.

The bill, which was signed in May, requires the schools to provide the services by August 2024.

“There was definitely some pushback” from conservative legislators during the process, Johnson said. Although the final bill didn’t include requirements for transportation services or school reporting that Johnson wanted, she was heartened by the amount of support the bill received from parents and students.

In the spring, Johnson received a public service fellowship from the University System of Maryland that has enabled her to work with her student health center to develop a blueprint for Bowie State that other schools can follow, she said.

“It’s something that in 2023 we shouldn’t have to be fighting for,” she said.” We should already have it.”

“The legislation was confirmation and affirmation of the direction we were headed anyway,” said Michele Richardson, director of the Henry Wise Wellness Center at Bowie State. She noted that the school is in the process of bringing to campus wellness vending machines, which will be installed by August.

But increasing access is more challenging elsewhere.

At Loyola University Chicago, a Jesuit college, members of the organization Students for Reproductive Justice aren’t permitted to host events on campus or reserve space in meeting rooms. The Loyola for Life group, which opposes abortion, faces no such restrictions.

While Loyola “welcomes an open exchange of ideas,” only registered student organizations that are “congruent with our values as a Jesuit, Catholic institution” can submit activity requests or reserve space on campus, said Matthew McDermott, a spokesperson for the university.

Oral contraceptives are provided only to students who need them for reasons unrelated to preventing pregnancy, and resident advisers are not permitted to distribute condoms or other forms of birth control.

“That’s where Students for Reproductive Justice comes in,” said Andi Beaudouin, 21, who for the past two years has overseen the group’s distribution of free emergency contraception. “We were like, ‘If the university isn’t going to do it then we will.’ Everyone deserves this and we don’t need to feel embarrassed or hesitant about getting the resources that we need.”

Beaudouin and other volunteers take orders for emergency contraception by email. They package pills with two pregnancy tests and some pads and liners in case of bleeding and hand off the kits to students either on campus or nearby. In the past two years, they’ve filled orders for more than 100 kits.

When the Supreme Court ruled in Dobbs, the number of requests skyrocketed, Beaudouin said. The group posted on Instagram pleading with students not to stockpile pills, because its supplies were very limited.

“People understood, but I felt really bad about it,” they said. (Beaudouin uses the pronoun they.)

Beaudouin doesn’t think university officials know that the reproductive health group distributes emergency contraceptives on campus. And Loyola for Life has picketed their off-campus condom distribution events, but it has gotten better since the reproductive health group asked them to stop, Beaudouin said.

Loyola for Life didn’t respond to a request for comment.

The national anti-abortion group Students for Life of America wouldn’t object to students distributing free pregnancy tests and menstrual products, said Kate Maloney, manager of the group’s Campaign for Abortion Free Cities. But they would object to distribution of emergency contraception, which they claim is an abortion-causing drug.

Still, the reproductive justice groups shouldn’t be prohibited from operating on campus, Maloney said. “We’re not going to say whether a group should be denied the right to exist,” she said, “because that has happened a lot to us.”

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The KFF survey of nearly 6,300 patients who have had care in the past three years found that about 55% of Black adults feel they have to be very careful about their appearance to be treated fairly by doctors and other health providers. Nearly half of American Indian, Alaska Native, and Hispanic patients feel similarly, as do about 4 in 10 Asian patients.

By comparison, 29% of white people surveyed said they worried about their appearance before appointments.

“In 2023, the notion that any person must prepare for discrimination is sad on one hand and angering on the other,” Burgess Harrison, executive director of the National Minority Health Association, wrote in an email. “The stress that this causes, in addition to whatever health issue involved, is crazy.”

Discrimination has long been a concern for both patients and health providers in the U.S., where racial disparities in health outcomes are vast and particularly unfavorable toward Black people.

A 30-year-old Hispanic man in Illinois who responded to the KFF survey told researchers he wears clothes to health care appointments with the logo of the university where he works. He noticed, he said, that when health care providers know he is a professor, they listen to him more intently and involve him more in care decisions.

A 44-year-old Asian woman in California told the researchers that her white male doctors ignored her concerns about breathing issues, telling her she “was probably just thinking too hard about breathing.” She was later diagnosed with asthma.

The two respondents were not identified in the study.

The survey offers “a way to actually quantify what those experiences are with racism and discrimination, and the multitude of ways they then impact people’s lives,” said Samantha Artiga, director of KFF’s racial equity and health policy program.

“For folks who have been following these issues for a long time, the findings are not unexpected,” she said.

Other findings:

• A third of adults reported at least one of several negative experiences with a health care provider in the past three years, such as a professional assuming something about them without asking, or suggesting they were to blame for a health problem.
• Nearly a quarter of Black adults, 19% of Alaska Native and Native American adults, 15% of Hispanic adults, and 11% of Asian adults said they believed they endured negative treatment because of their race or ethnicity.
• Twenty-two percent of Black adults who were pregnant or gave birth in the past 10 years said they were denied pain medication they thought they needed. Just 10% of white adults in similar circumstances reported the same complaint.

When people don’t feel respected or welcomed by their health care providers, they may be discouraged to reach out for medical help or may switch providers more often, Artiga said. Members of minority populations are found to be “experiencing worse health as a result of experiencing unfair treatment in the health care system,” she said.

The survey also found that discrimination outside the health care system had health consequences. People who said they experienced discrimination in their everyday lives were more than twice as likely to report often feeling anxious, lonely, or depressed compared with those who rarely or never faced discrimination.

Black people who self-reported darker skin tones were more likely to have encountered discrimination than those with lighter skin, the survey found.

The survey reveals “how persistent and prevalent experiences with racism and discrimination remain today, in daily life and also in health care, despite, really, the increased calls and focus on addressing racism,” said Liz Hamel, KFF’s director of public opinion and survey research.

Diversity among health care providers matters, the survey found. Most people of color who participated in the survey said that fewer than half of their medical visits in the past three years were with a provider who shared their race or ethnicity. But Black patients who had at least half their visits with a provider of their race or ethnicity, for example, were more likely to report better experiences, such as their doctor explaining things “in a way they could understand” or asking them about health factors such as their employment, housing, and access to food and transportation.

Nearly 40% of Black adults whose health providers were also Black said they discussed such economic and social subjects, while just 24% of Black adults who saw providers who weren’t Black said those issues were brought up.

Harrison, of the National Minority Health Association, wrote that “a renewed emphasis on recruiting more people of color into the health care field is vital.”

The survey, he added, “painfully illustrates that racial bias in healthcare is as damaging as any disease.”

KFF’s “Survey on Racism, Discrimination and Health” was conducted from June 6 to Aug. 14 online and by telephone among a nationally representative sample of U.S. adults in English, Spanish, Chinese, Korean, and Vietnamese.

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GANN VALLEY, S.D. — Rural medics who rescued rancher Jim Lutter after he was gored by a bison didn’t have much experience handling such severe wounds.

But the medics did have a doctor looking over their shoulders inside the ambulance as they rushed Lutter to a hospital.

The emergency medicine physician sat 140 miles away in a Sioux Falls, South Dakota, office building. She participated in the treatment via a video system recently installed in the ambulance.

“I firmly believe that Jim had the best care anyone has ever received in the back of a basic life support ambulance,” said Ed Konechne, a volunteer emergency medical technician with the Kimball Ambulance District.

The ambulance service received its video system through an initiative from the South Dakota Department of Health. The project, Telemedicine in Motion, helps medics across the state, especially in rural areas.

Telehealth became commonplace in clinics and patients’ homes during the covid-19 pandemic emergency, and the technology is starting to spread to ambulances. Similar programs recently launched in regions of Texas and Minnesota, but South Dakota officials say their partnership with Avel eCare — a Sioux Falls-based telehealth company — appears to be the nation’s only statewide effort.

Lutter, 67, and his wife, Cindy, are among the 12 residents of Gann Valley, a town just east of the Missouri River in central South Dakota. They operate a hunting lodge and ranch, where they raise more than 1,000 bison.

Last December, Lutter went to check on a sick bison calf. The animal was in the same pen as Bill, a 3-year-old bull that was like a family pet.

“We raised him from a tiny little calf, and I always told everybody he thinks I’m his mother. He just followed me everywhere,” Lutter recalled. Lutter climbed into the pen and saw Bill calmly walk toward him.

“What does Chuck Norris say? ‘Always expect the unexpected.’ Well, I didn’t do that. I didn’t expect the unexpected,” he said.

The bison suddenly hooked Lutter with his horns, repeatedly tossed him in the air, and then gored him in the groin. Lutter thought he was going to die but somehow escaped the pen and found himself on the ground, bleeding heavily.

“The red snow was just growing,” he said.

Lutter couldn’t reach his cellphone to call 911. But he managed to climb into a front-end loader, similar to a tractor, and drove a few miles to the house of his brother Lloyd.

Jim Lutter’s pain didn’t kick in until his brother pulled him out of the loader and into a minivan. Lloyd called 911 and began driving toward the ambulance base, about 18 miles away.

Rural ambulance services like the one in Kimball are difficult to sustain because insurance reimbursements from small patient volumes often aren’t enough to cover operating costs. And they’re largely staffed by dwindling ranks of aging volunteers.

That’s left 84% of rural counties in the U.S. with at least one “ambulance desert,” where people live more than 25 minutes from an ambulance station, according to a study by the Maine Rural Health Research Center.

Konechne, the volunteer medic, was working his regular job as a hardware store manager when a dispatcher came onto his portable radio with a call for help. He hustled two blocks to the Kimball fire station and hopped into the back of an ambulance, which another medic drove toward Gann Valley.

Lloyd Lutter and the ambulance driver both pulled over on the side of the country road once they saw each other coming from opposite directions.

“I opened the side door of the van where Jim was and just saw the look on his face,” Konechne said. “It’s a look I’ll never forget.”

Rural medics often have less training and experience than their urban counterparts, Konechne said. Speaking with a more experienced provider via video gives him peace of mind, especially in uncommon situations. Konechne said the Kimball ambulance service sees only about three patients a year with injuries as bad as Jim Lutter’s.

Katie DeJong was the emergency medicine physician at Avel eCare’s telehealth center who took the ambulance crew’s video call.

“What? A bison did what?” DeJong remembers thinking.

After speaking with the medics and viewing Lutter’s injuries, she realized the rancher had life-threatening injuries, especially to his airway. One of Lutter’s lungs had collapsed and his chest cavity was filled with air and blood.

DeJong called the emergency department at the hospital in Wessington Springs — 25 miles from Gann Valley — to let its staff know how to prepare. Get ready to insert a chest tube to clear the area around his lungs, she instructed. Get the X-ray machine ready. And have blood on standby in case Lutter needed a transfusion.

DeJong also arranged for a helicopter to fly Lutter from the rural hospital to a Sioux Falls medical center, where trauma specialists could treat his wounds.

Konechne said he was able to devote 100% of his time to Lutter since DeJong took care of taking notes, recording vital signs, and communicating with the hospitals.

Nurse practitioner Sara Cashman was working at the emergency department in Wessington Springs when she received the video call from DeJong.

“It was nice to have that warning so we could all mentally prepare,” Cashman said. “We could have the supplies that we needed ready, versus having to assess when the patient got there.”

A doctor inserted a tube into Lutter’s chest to drain the blood and air around his lungs. Medics then loaded him into the helicopter, which flew him to the Sioux Falls hospital where he was rushed into surgery. Lutter had a fractured collarbone, 16 broken ribs, a partially torn-off scalp, and a 4-inch-deep hole near his groin.

The rancher stayed in the hospital for about a week and compared his painful wound-packing regimen near his groin to the process of loading an old-fashioned rifle.

“That’s exactly what it was. Like packing a muzzleloader and you take a rod, let’s poke that in there,” Lutter said. “That was just a lot of fun.”

The video technology that helped save Lutter had only recently been installed in the ambulance after Telemedicine in Motion launched in fall 2022. The program is financed with $2.7 million from state funds and federal pandemic stimulus money.

The funding pays for Avel eCare employees to provide and install video equipment and teach medics how to use it. The company also employs remote health care professionals who are available 24/7.

So far, 75 of South Dakota’s 122 ambulance services have installed the technology, and an additional 18 plan to do so. The system has been used about 700 times so far.

Avel’s contract ends in April, but the company hopes the state will extend Telemedicine in Motion into a third year. Once the state funding ends, ambulance services will need to decide if they want to start paying for the video service on their own. Patients wouldn’t be charged extra for the video calls, said Jessica Gaikowski, a spokesperson for Avel eCare.

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“Growing up, we ate whatever we caught — catfish, carp, freshwater drum,” he said. “That was the only real source of fish in our diet as a family, and we ate a lot of it.”

Today, a branch of the Rouge River runs through Eisenman’s property in a suburb north of Detroit. But in recent years, he has been wary about a group of chemicals known as PFAS, also referred to as “forever chemicals,” which don’t break down quickly in the environment and accumulate in soil, water, fish, and our bodies.

The chemicals have spewed from manufacturing plants and landfills into local ecosystems, polluting surface water and groundwater, and the wildlife living there. And hundreds of military bases have been pinpointed as sources of PFAS chemicals leaching into nearby communities.

Researchers, anglers, and environmental activists nationwide worry about the staggering amount of PFAS found in freshwater fish. At least 17 states have issued PFAS-related fish consumption advisories, KFF Health News found, with some warning residents not to eat any fish caught in particular lakes or rivers because of dangerous levels of forever chemicals.

With no federal guidance, what is considered safe to eat varies significantly among states, most of which provide no regulation.

Eating a single serving of freshwater fish can be the equivalent of drinking water contaminated with high levels of PFAS for a month, according to a recent study from the Environmental Working Group, a research and advocacy organization that tracks PFAS. It’s an unsettling revelation, especially for rural, Indigenous, and low-income communities that depend on subsistence fishing. Fish remain a large part of cultural dishes, as well as an otherwise healthy source of protein and omega-3s.

“PFAS in freshwater fish is at such a concentration that for anyone consuming, even infrequently, it would likely be their major source of exposure over the course of the year,” said David Andrews, a co-author of the study and researcher at EWG. “We’re talking thousands of times higher than what’s typically seen in drinking water.”

Dianne Kopec, a researcher and faculty fellow at the University of Maine who studies PFAS and mercury in wildlife, warned that eating fish with high concentrations of PFAS may be more harmful than mercury, which long ago was found to be a neurotoxin most damaging to a developing fetus. The minimal risk level — an estimate of how much a person can eat, drink, or breathe daily without “detectable risk” to health — for PFOS, a common PFAS chemical, is 50 times as low as for methylmercury, the form of mercury that accumulates in fish, according to the federal Agency for Toxic Substances and Disease Registry. But she emphasized, “They’re both really nasty.”

Just like mercury, PFAS bioaccumulate up the food chain, so bigger fish, like largemouth bass, generally contain more chemicals than smaller fish. Mercury is more widespread in Maine, but Kopec said PFAS levels near contamination sources are concerningly high.

‘Fishing Is a Way of Life’

The Ecology Center, an environmental group in Michigan, educates anglers about consumption advisories and related health impacts. But Erica Bloom, its toxics campaign director, noted that for many people out on the river, “fishing is a way of life.”

Eisenman participated in an Ecology Center community-based study published this year, which tested fish from Michigan’s Huron and Rouge rivers for PFAS that poured out from auto and other industry contamination. Across 15 sites, anglers caught 100 fish samples from a dozen species, and what they found scared him.

“There were no sites that registered zero,” said Eisenman, noting that some had significantly higher levels of chemicals than others. “You need to make a value judgment. I’m going to still eat fish, but I don’t know if that’s a good thing.”

Last year, the National Academies of Sciences, Engineering, and Medicine published a sweeping federally funded report that associated PFAS exposure with health effects like decreased response to vaccines, cancer, and low birth weight.

There are thousands of PFAS, or perfluoroalkyl and polyfluoroalkyl substances, many of them used to make both household and industrial products stain-resistant or nonstick. They’re in fire-retardant foam used for decades by fire departments and the military, as well as in cookware, water-repellent clothing, carpets, food wrappers, and other consumer goods.

In late October, the EPA added hundreds of PFAS compounds to its list of “chemicals of special concern.” This will require manufacturers to report the presence of those PFAS chemicals in their products — even in small amounts or in mixtures — starting Jan. 1.

Sparse Testing Leaves Blind Spots

About 200 miles north of Detroit, in rural Oscoda, Michigan, state officials have warned against eating fish or deer caught or killed near the former Wurtsmith Air Force Base because of PFAS contamination.

“We have a 9-mile stretch of river system in which the state determined way back in 2012 that it wasn’t safe to even eat a single fish,” said Tony Spaniola, an advocate for communities affected by PFAS. He owns a home across a lake from the shuttered military site.

In Alaska, several lakes are designated catch and release only because of PFAS contamination from firefighting foam. A study by the U.S. Geological Survey and Pennsylvania Department of Environmental Protection released in August led to a warning to avoid eating fish from the Neshaminy Creek watershed.

Nationwide, use of firefighting foam and other PFAS-loaded products by the Department of Defense alone has led to the contamination of at least 359 military bases and communities that need to be cleaned up, with an additional 248 still under investigation as of June.

But many lakes and streams haven’t been tested for PFAS contamination, and researchers worry far more sites hold fish laced with high levels of PFAS.

Federal efforts to curb PFAS exposure have focused mostly on drinking water. Earlier this year, the EPA proposed the nation’s first PFAS drinking water standards, which would limit contamination from six types of chemicals, with levels for the two most common compounds, PFOA and PFOS, set at 4 parts per trillion.

But the EWG researchers found that one serving of fish can be equivalent to a month's worth of drinking water contaminated with 48 parts per trillion of PFOS.

Store-bought fish caught in the ocean, like imported Atlantic salmon and canned chunk tuna, appear to have lower PFAS levels, according to FDA research.

A biomonitoring project focused on the San Francisco Bay Area’s Asian and Pacific Islander community measured PFAS levels in the blood and found higher amounts of the compounds compared with national levels. The researchers also surveyed participants about their fish consumption and found that 56% of those who ate locally caught fish did so at least once a month.

Eating a fish’s fillet is often recommended, as it accumulates fewer chemicals than organs or eggs, but many participants reported eating other parts of the fish, too.

California is one of many states with no fish consumption advisories in place for PFAS. Jay Davis, senior scientist at the San Francisco Estuary Institute, said that’s in part because of “limited monitoring dollars” and a priority on legacy chemicals like PCBs as well as mercury left over in particularly high concentrations from gold and mercury mining.

Wesley Smith, a senior toxicologist with California’s Office of Environmental Health Hazard Assessment, said the state is reviewing the latest scientific literature but needs more data to develop an advisory that is “neither too restrictive nor too permissive.”

States like New Hampshire, Washington, Maine, and New Jersey have some of the most protective guidance, while other states, such as Maryland and Michigan, lag when it comes to designating fish unsafe to eat.

Advisory levels for at-risk groups — such as children and women of childbearing age — are usually lower, while “do not eat” thresholds for the general population range from 25.7 parts per billion in New Hampshire to 300 ppb in Michigan, 408 ppb in Maryland, and 800 ppb in Alabama.

“That’s wicked outdated to have levels that high and consider that safe for folks to eat,” said Kopec, the University of Maine researcher.

Though it is no longer made in the U.S., PFOS remains the most commonly found — and tested for — PFAS chemical in fish today.

The primary maker of PFOS, 3M, announced it would begin phasing the chemical out in 2000. This year, the company said it would pay at least $10.3 billion to settle a class-action lawsuit brought by public water system operators. But in July, attorneys general from 22 states asked the court to reject the settlement, saying it was insufficient to cover the damages.

The military first documented health concerns surrounding PFAS chemicals in the 1970s yet continued to use firefighting foam made with them. Mandated by Congress, the Defense Department was required to stop buying retardant containing PFAS by Oct. 1 and phase it out altogether by 2024. A recently published study linked testicular cancer among military personnel to PFOS.

Tackling Pollution at the Source

Pat Elder, an activist and director of the environmental advocacy group Military Poisons, has tested water for PFAS up and down the East Coast, including in Piscataway Creek, which drains from Joint Base Andrews, the home of Air Force One.

In 2021, after testing fish from Piscataway Creek, Maryland officials released the state’s sole PFAS fish consumption advisory to date. But Elder worries Maryland has not gone far enough to protect its residents.

“People eat the fish from this creek, and it creates an acute health hazard that no one seems to be paying attention to,” Elder said.

Since then, Maryland’s Department of the Environment has conducted more fish monitoring in water bodies near potential PFAS sources, as well as at spots regularly used by subsistence anglers, said spokesperson Jay Apperson. He added that the state plans to put out more advisories based on the results, though declined to give a timeline or share the locations.

Part of the challenge of getting the word out and setting location-specific consumption advisories is that contamination levels vary significantly from lake to lake, as well as species to species, said Brandon Reid, a toxicologist and the manager of Michigan’s Eat Safe Fish program.

Michigan set its screening values for fish consumption advisories in 2014, and the state is in the process of updating them within the next year, Reid said.

But to see the chemicals dip to healthier levels, the pollution needs to stop, too. There is hope: Andrews, the EWG researcher, compared EPA fish sample data from five years apart and found about a 30% drop on average in PFAS contamination.

Bloom has watched this cycle happen in the Huron River in southeastern Michigan, where PFAS chemicals upstream seeped into the water from a chrome plating facility. While the levels of PFAS in the water have slowly gone down, the chemicals remain, she said.

“It's very, very hard to completely clean up the entire river,” Bloom said. “If we don't tackle it at the source, we're going to just keep having to spend taxpayer money to clean it up and deal with fish advisories.”

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Officials at the Centers for Medicare & Medicaid Services are encouraging seniors and other members of the public to become fraud detectives by reporting misleading or deceptive sales tactics to 800-MEDICARE, the agency’s 24-hour information hotline. Suspects include postcards designed to look like they’re from the government and TV ads with celebrities promising benefits and low fees that are available only to some people in certain counties.

The new rules, which took effect Sept. 30, close some loopholes in existing requirements by describing what insurers can say in ads and other promotional materials as well as during the enrollment process.

Insurance companies’ advertising campaigns kick into high gear every fall, when seniors can buy policies that take effect Jan. 1. People with traditional government Medicare coverage can add or change a prescription drug plan or join a Medicare Advantage plan that combines drug and medical coverage. Although private Advantage plans offer extra benefits not available under the Medicare program, some services require prior authorization and beneficiaries are confined to a network of health care providers that can change anytime. Beneficiaries in traditional Medicare can see any provider. The open enrollment season ends Dec. 7.

Catching Medicare Advantage plans that step out of line isn’t the only reason to keep an eye out for marketing scams. Accurate plan information can help avoid enrollment traps in the first place.

Although insurers and advocates for older adults have generally welcomed the new truth-in-advertising rules, compliance is the big challenge. Expecting beneficiaries to monitor insurance company sales pitches is asking a lot, said Semanthie Brooks, a social worker and advocate for older adults in northeast Ohio. She’s been helping people with Medicare sort through their options for nearly two decades. “I don’t think Medicare beneficiaries should be the police,” she said.

Choosing a Medicare Advantage plan can be daunting. In Ohio, for example, there are 224 Advantage and 21 drug plans to choose from that take effect next year. Eligibility and benefits vary among counties across the state.

“CMS ought to be looking at how they can educate people, so that when they hear about benefits on television, they understand that this is a promotional advertisement and not necessarily a benefit that they can use,” Brooks said. “If you don’t realize that these ads may be fraudulent, then you won’t know to report them.”

The agency relies on beneficiaries to help improve services, Meena Seshamani, CMS’ Medicare director, told KFF Health News in a written statement. “The voices of the people we serve make our programs stronger,” she said. Beneficiary complaints prompted the government’s action. “That’s why, after hearing from our community, we took new critical steps to protect people with Medicare from confusing and potentially misleading marketing.”

Although about 31 million of the 65 million people with Medicare are enrolled in Medicare Advantage, even that may not be enough people to monitor the tsunami of advertising on TV, radio, the internet, and paper delivered to actual mailboxes. Last year more than 9,500 ads aired daily during the nine-week marketing period that started two weeks before enrollment opened, according to an analysis by KFF. More than 94% of the TV commercials were sponsored by health insurers, brokers, and marketing companies, compared with only 3% from the federal government touting the original Medicare program.

During just one hourlong Cleveland news program in December, researchers found, viewers were treated to nine Advantage ads.

For the first time, CMS asked insurance and marketing companies this year to submit their Medicare Advantage television ads, to make sure they complied with the expanded rules. Officials reviewed 1,700 commercials from May 1 through Sept. 30 and nixed more than 300 deemed misleading, according to news reports. An additional 192 ads out of 250 from marketing companies were also rejected. The agency would not disclose the total number of TV commercials reviewed and rejected this year or whether ads from other media were scrutinized.

The new restrictions also apply to salespeople, whether their pitch is in an ad, written material, or a one-on-one conversation.

Under one important new rule, the salesperson must explain how the new plan is different from a person’s current health insurance before any changes can be made.

That information could have helped an Indiana woman who lost coverage for her prescription drugs, which cost more than $2,000 a month, said Shawn Swindell, the State Health Insurance Assistance Program supervisor of volunteers for 12 counties in east-central Indiana. A plan representative enrolled the woman in a Medicare Advantage plan without telling her it didn’t include drug coverage because the plan is geared toward veterans who can get drug coverage through the Department of Veterans Affairs instead of Medicare. The woman is not a veteran, Swindell said.

In New York, the Medicare Rights Center received a complaint from a man who had wanted to sign up just for a prepaid debit card to purchase nonprescription pharmacy items, said the group’s director of education, Emily Whicheloe. He didn’t know the salesperson would enroll him in a new Medicare Advantage plan that offered the card. Whicheloe undid the mistake by asking CMS to allow the man to return to his previous Advantage plan.

Debit cards are among a dizzying array of extra nonmedical perks offered by Medicare Advantage plans, along with transportation to medical appointments, home-delivered meals, and money for utilities, groceries, and even pet supplies. Last year, plans offered an average of 23 extra benefits, according to CMS. But some insurers have told the agency only a small percentage of patients use them, although actual usage is not reportable.

This month, CMS proposed additional Advantage rules for 2025, including one that would require insurers to tell their members about available services they haven’t used yet. Reminders will “ensure the large federal investment of taxpayer dollars in these benefits is actually making its way to beneficiaries and are not primarily used as a marketing ploy,” officials said in a fact sheet.

Medicare Advantage members are usually locked into their plans for the year, with rare exceptions, including if they move out of the service area or the plan goes out of business. But two years ago, CMS added an escape hatch: People can leave a plan they joined based on misleading or inaccurate information, or if they discovered promised benefits didn’t exist or they couldn’t see their providers. This exception also applies when unscrupulous plan representatives withhold information and enroll people in an Advantage policy without their consent.

Another new rule that should prevent enrollments from going awry prohibits plans from touting benefits that are not available where the prospective member lives. Empty promises have become an increasing source of complaints from clients of Louisiana’s Senior Health Insurance Information Program, said its state director, Vicki Dufrene. “They were going to get all these bells and whistles, and when it comes down to it, they don’t get all the bells and whistles, but the salesperson went ahead and enrolled them in the plan.”

So expect to see more disclaimers in advertisements and mailings like this unsolicited letter an Aetna Medicare Advantage plan sent to a New York City woman: “Plan features and availability may vary by service area,” reads one warning packed into a half-page of fine print. “The formulary and/or pharmacy network may change at any time,” it continues, referring to the list of covered drugs. “You will receive notice when necessary.”

However, the rules still allow insurers to boast about their ratings from CMS — five stars is the top grade — even though the ratings do not reflect the performance of the specific plan mentioned in an ad or displayed on the government’s Medicare plan finder website. “There is no way for consumers to know how accurately the star rating reflects the specific plan design, specific provider network, or any other specifics of a particular plan in their county,” said Laura Skopec, a senior researcher at the Urban Institute who recently co-authored a study on the rating system.

And because ratings data can be more than a year old and plans change annually, ratings published this year don’t apply to 2024 plans that haven’t even begun yet — despite claims to the contrary.

How to spot misleading Medicare Advantage and drug plan sales pitches (and what to do about it)

The Centers for Medicare & Medicaid Services has new rules cracking down on misleading or inaccurate advertising and promotion of Medicare Advantage and drug plans. Watch out for pitches that:

• Suggest benefits are available to all who sign up when only some individuals qualify.
• Mention benefits that are not available in the service area where they are advertised (unless unavoidable because the media outlet covers multiple service areas).
• Use superlatives like “most” or “best” unless claims are backed up by data from the current or prior year.
• Claim unrealistic savings, such as $9,600 in drug savings, which apply only in rare circumstances.
• Market coverage without naming the plan.
• Display the official Medicare name, membership card, or logo without CMS approval.
• Contact you if you’re an Advantage or drug plan member and you told that plan not to notify you about other health insurance products.
• Pretend to be from the government-run Medicare program, which does not make unsolicited sales calls to beneficiaries.

If you think a company is violating the new rules, contact CMS at 800-MEDICARE, its 24-hour information hotline. If you believe you chose a plan based on inaccurate information and want to change plans, contact CMS or your State Health Insurance Assistance Program: www.shiphelp.org or 877-839-2675. For more information about protecting yourself from marketing violations, go to www.shiphelp.org/about-medicare/blog/protecting-yourself-marketing-violations.

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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