Indeed, it was a plotline on the sitcom Seinfeld. But for some it has been a tragedy.

People have died after drinking tea brewed from unwashed poppy seeds.

And after eating lemon poppy seed bread or an everything bagel, mothers reportedly have been separated from newborns because the women failed drug tests.

Poppy seeds come from the plant that produces opium and from which narcotics such as morphine and codeine are derived. During harvesting and processing, the seeds can become coated with the opium fluid.

Members of the House and Senate have proposed legislation “to prohibit the distribution and sale of contaminated poppy seeds in order to prevent harm, addiction, and further deaths from morphine-contaminated poppy seeds.” The bill was one of several on the agenda for a Sept. 10 House hearing.

The day before the hearing, The Marshall Project and Reveal reported on a woman who ate a salad with poppy seed dressing before giving birth, tested positive at the hospital for opiates, was reported to child welfare, and saw her baby taken into protective custody. Almost two weeks passed before she was allowed to bring her baby home, the story said.

“It’s not an urban legend: Eating poppy seeds can cause diners to test positive for codeine on a urinalysis,” the Defense Department warned military personnel in 2023.

The U.S. Anti-Doping Agency long ago issued a similar warning to athletes.

The Center for Science in the Public Interest, a watchdog group, petitioned the FDA in 2021 to limit the opiate content of poppy seeds. In May, after more than three years with no response, it sued the agency to force action.

“So far the FDA has been negligent in protecting consumers,” said Steve Hacala, whose son died after consuming poppy seed tea and who has joined forces with CSPI.

The lawsuit was put on hold in July, after the FDA said it would respond to the group’s petition by the end of February 2025.

The FDA did not answer questions for this article. The agency generally does not comment on litigation, spokesperson Courtney Rhodes said.

A 2021 study co-authored by CSPI personnel found more than 100 reports to poison control centers between 2000 and 2018 resulting from intentional abuse or misuse of poppy seeds, said CSPI scientist Eva Greenthal, one of the study’s authors.

Only rarely would baked goods or other food items containing washed poppy seeds trigger positive drug tests, doctors who have studied the issue said.

It’s “exquisitely doubtful” that the “relatively trivial” amount of morphine in an everything bagel or the like would cause anyone harm, said Irving Haber, a doctor who has written about poppy seeds, specializes in pain medicine, and signed the CSPI petition to the FDA.

On the other hand, tea made from large quantities of unwashed poppy seeds could lead to addiction and overdose, doctors said. The risks are heightened if the person drinking the brew is also consuming other opioids, such as prescription pain relievers.

Benjamin Lai, a physician who chairs a program on opioids at the Mayo Clinic in Rochester, Minnesota, said he has been treating a patient who developed long-term opioid addiction from consuming poppy seed tea. The patient, a man in his 30s, found it at a health food store and was under the impression it would help him relax and recover from gym workouts. After a few months, he tried to stop and experienced withdrawal symptoms, Lai said.

Another patient, an older woman, developed withdrawal symptoms under similar circumstances but responded well to treatment, Lai said.

Some websites tout poppy seed tea as offering health benefits. And some sellers “may use specific language such as ‘raw,’ ‘unprocessed,’ or ‘unwashed’ to signal that their products contain higher concentrations of opiates than properly processed seeds,” the CSPI lawsuit said.

Steve Hacala’s son, Stephen Hacala, a music teacher, had been experiencing anxiety and insomnia, for which poppy seed tea is promoted as a natural remedy, the lawsuit said. In 2016, at age 24, he ordered a bag of poppy seeds online, rinsed them with water, and consumed the rinse. He died of morphine poisoning.

The only source of morphine found in Stephen’s home, where he died, was commercially available poppy seeds, a medical examiner at the Arkansas State Crime Lab said in a letter to the father. The medical examiner wrote that poppy seeds “very likely” caused Stephen’s death.

Steve Hacala estimated that the quantity of poppy seeds found in a 1-liter plastic water bottle in his son’s home could have delivered more than 10 times a lethal dose.

Steve Hacala and his wife, Betty, have funded CSPI’s efforts to call attention to the issue. (The publisher of KFF Health News, David Rousseau, is on the CSPI board.)

The lawsuit also cited mothers who, like those in the investigation by The Marshall Project and Reveal, ran afoul of rules meant to protect newborns. For example, though Jamie Silakowski had not used opioids while pregnant, she was initially prevented from leaving the hospital with her baby, the suit said.

Silakowski recalled that, before going to the hospital, she had eaten lemon poppy seed bread at Tim Hortons, a fast-food chain, CSPI said in its petition. “No one in the hospital believed Ms. Silakowski or appeared to be aware that the test results could occur from poppy seeds.”

People from child protective services made unannounced visits to her home, interviewed her other children, and questioned teachers at their school, she said in an interview.

While on maternity leave, she had to undergo drug testing, Silakowski said. “Peeing in front of someone like I’m a criminal — it was just mortifying.”

Even family members were questioning her, and there was nothing she could do to dispel doubts, she said. “Relationships were torn apart,” she said.

The parent company of Tim Hortons, Restaurant Brands International, which also owns Burger King and Popeyes, did not respond to questions from KFF Health News.

In July, The Washington Post reported that Trader Joe’s Everything but the Bagel seasoning was banned and being confiscated in South Korea because it contains poppy seeds. Trader Joe’s did not respond to inquiries for this article. The seasoning is listed for sale on the company’s website.

The U.S. Drug Enforcement Agency says unwashed poppy seeds can kill when used alone or in combination with other drugs. While poppy seeds are exempt from drug control under the Controlled Substances Act, opium contaminants on the seeds are not, the agency says. The Justice Department has brought criminal prosecutions over the sale of unwashed poppy seeds.

Meanwhile, the legislation to control poppy seed contamination has not gained much traction.

The Senate bill, introduced by Sen. Tom Cotton (R-Ark.), has two co-sponsors.

The House bill, introduced by Rep. Steve Womack (R-Ark.), has none. Though it was on the agenda, it didn’t come up at the recent hearing.

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Translating “cardiac arrest” into Spanish is also tricky because “arresto” means getting detained by the police. Likewise, “intoxicado” means you have food poisoning, not that you’re drunk.

The examples of how translation could go awry in any language are endless: Words take on new meanings, idioms come and go, and communities adopt slang and dialects for everyday life.

Human translators work hard to keep up with the changes, but California plans to soon entrust that responsibility to technology.

State health policy officials want to harness emerging artificial intelligence technology to translate a broad swath of documents and websites related to “health and social services information, programs, benefits and services,” according to state records. Sami Gallegos, a spokesperson for California’s Health and Human Services Agency, declined to elaborate on which documents and languages would be involved, saying that information is “confidential.”

The agency is seeking bids from IT firms for the ambitious initiative, though its timing and cost is not yet clear. Human editors supervising the project will oversee and edit the translations, Gallegos said.

Agency officials said they hope to save money and make critical health care forms, applications, websites, and other information available to more people in what they call the nation’s most linguistically diverse state.

The project will start by translating written material. Agency Secretary Mark Ghaly said the technology, if successful, may be applied more broadly.

“How can we potentially not just transform all of our documents, but our websites, our ability to interact, even some of our call center inputs, around AI?” Ghaly asked during an April briefing on AI in health care in Sacramento.

But some translators and scholars fear the technology lacks the nuance of human interaction and isn’t ready for the challenge. Turning this sensitive work over to machines could create errors in wording and understanding, they say — ultimately making information less accurate and less accessible to patients.

“AI cannot replace human compassion, empathy, and transparency, meaningful gestures and tones,” said Rithy Lim, a Fresno-based medical and legal interpreter for 30 years who specializes in Khmer, the main language of Cambodia.

Artificial intelligence is the science of designing computers that emulate human thinking by reasoning, problem-solving, and understanding language. A type of artificial intelligence known as generative AI, or GenAI, in which computers are trained using massive amounts of data to “learn” the meaning of things and respond to prompts, is driving a wave of investment, led by such companies as Open AI and Google.

AI is quickly being integrated into health care, including programs that diagnose diabetic retinopathy, analyze mammograms, and connect patients with nurses remotely. Promotors of the technology often make the grandiose claim that soon everyone will have their own “AI doctor.”

AI also has been a game changer in translation. ChatGPT, Google’s Neural Machine Translation, and Open Source are not only faster than older technologies such as Google Translate, but they can process huge volumes of content and draw upon a vast database of words to nearly mimic human translation.

Whereas a professional human translator might need three hours to translate a 1,600-word document, AI can do it in a minute.

Arjun “Raj” Manrai, an assistant professor of biomedical informatics at Harvard Medical School and the deputy editor of New England Journal of Medicine AI, said the use of AI technology represents a natural progression in medical translation, given that patients already use Google Translate and AI platforms to translate for themselves and their loved ones.

“Patients are not waiting,” he said.

He said GenAI could be particularly useful in this context.

These translations “can deliver real value to patients by simplifying complex medical information and making it more accessible,” he said.

In its bidding documents, the state says the goal of the project is to increase “speed, efficiency, and consistency of translations, and generate improvements in language access” in a state where 1 in 3 people speak a language other than English, and more than 200 languages are spoken.

In May 2023, the state Health and Human Services Agency adopted a “language access policy” that requires its departments to translate all “vital” documents into at least the top five languages spoken by Californians with limited English proficiency. At the time, those languages were Spanish, Chinese, Tagalog, Vietnamese, and Korean.

Examples of vital documents include application forms for state programs, notices about eligibility for benefits, and public website content.

Currently, human translators produce these translations. With AI, more documents could be translated into more languages.

A survey conducted by the California Health Care Foundation late last year found that 30% of Spanish speakers have difficulty explaining their health issues and concerns to a doctor, compared with 16% of English speakers.

Health equity advocates say AI will help close that gap.

“This technology is a very powerful tool in the area of language access,” said Sandra R. Hernández, president and CEO of the foundation. “In good hands, it has many opportunities to expand the translation capability to address inequities.”

But Hernández cautioned that AI translations must have human oversight to truly capture meaning.

“The human interface is very important to make sure you get the accuracy and the cultural nuances reflected,” she said.

Lim recalled an instance in which a patient’s daughter translated preoperative instructions to her mother the night before surgery. Instead of translating the instructions as “you cannot eat” after a certain hour, she told her mom, “You should not eat.”

The mother ate breakfast, and the surgery had to be rescheduled.

“Even a few words that change meaning could have a drastic impact on the way people consume the information,” said Sejin Paik, a doctoral candidate in digital journalism, human-computer interaction, and emerging media at Boston University.

Paik, who grew up speaking Korean, also pointed out that AI models are often trained from a Western point of view. The data that drives the translations filters languages through an English perspective, “which could result in misinterpretations of the other language,” she said. Amid this fast-changing landscape, “we need more diverse voices involved, more people thinking about the ethical concepts, how we best forecast the impact of this technology.”

Manrai pointed to other flaws in this nascent technology that must be addressed. For instance, AI sometimes invents sentences or phrases that are not in the original text, potentially creating false information — a phenomenon AI scientists call “hallucination” or “confabulation.”

Ching Wong, executive director of the Vietnamese Community Health Promotion Project at the University of California-San Francisco, has been translating health content from English into Vietnamese and Chinese for 30 years.

He provided examples of nuances in language that might confuse AI translation programs. Breast cancer, for instance, is called “chest cancer” in Chinese, he said.

And “you” has different meanings in Vietnamese, depending on a person’s ranking in the family and community. If a doctor uses “you” incorrectly with a patient, it could be offensive, Wong said.

But Ghaly emphasized that the opportunities outweigh the drawbacks. He said the state should “cultivate innovation” to help vulnerable populations gain greater access to care and resources.

And he was clear: “We will not replace humans.”

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At issue is not just whether people are using enough sunscreen, but what ingredients are in it.

The Food and Drug Administration’s ability to approve the chemical filters in sunscreens that are sold in countries such as Japan, South Korea, and France is hamstrung by a 1938 U.S. law that has required sunscreens to be tested on animals and classified as drugs, rather than as cosmetics as they are in much of the world. So Americans are not likely to get those better sunscreens — which block the ultraviolet rays that can cause skin cancer and lead to wrinkles — in time for this summer, or even the next.

Sunscreen makers say that requirement is unfair because companies including BASF Corp. and L’Oréal, which make the newer sunscreen chemicals, submitted safety data on sunscreen chemicals to the European Union authorities some 20 years ago.

Steven Goldberg, a retired vice president of BASF, said companies are wary of the FDA process because of the cost and their fear that additional animal testing could ignite a consumer backlash in the European Union, which bans animal testing of cosmetics, including sunscreen. The companies are asking Congress to change the testing requirements before they take steps to enter the U.S. marketplace.

In a rare example of bipartisanship last summer, Sen. Mike Lee (R-Utah) thanked Rep. Alexandria Ocasio-Cortez (D-N.Y.) for urging the FDA to speed up approvals of new, more effective sunscreen ingredients. Now a bipartisan bill is pending in the House that would require the FDA to allow non-animal testing.

“It goes back to sunscreens being classified as over-the-counter drugs,” said Carl D’Ruiz, a senior manager at DSM-Firmenich, a Switzerland-based maker of sunscreen chemicals. “It’s really about giving the U.S. consumer something that the rest of the world has. People aren’t dying from using sunscreen. They’re dying from melanoma.”

Every hour, at least two people die of skin cancer in the United States. Skin cancer is the most common cancer in America, and 6.1 million adults are treated each year for basal cell and squamous cell carcinomas, according to the Centers for Disease Control and Prevention. The nation’s second-most-common cancer, breast cancer, is diagnosed about 300,000 times annually, though it is far more deadly.

Though skin cancer treatment success rates are excellent, 1 in 5 Americans will develop skin cancer by age 70. The disease costs the health care system $8.9 billion a year, according to CDC researchers. One study found that the annual cost of treating skin cancer in the United States more than doubled from 2002 to 2011, while the average annual cost for all other cancers increased by just 25%. And unlike many other cancers, most forms of skin cancer can largely be prevented — by using sunscreens and taking other precautions.

But a heavy dose of misinformation has permeated the sunscreen debate, and some people question the safety of sunscreens sold in the United States, which they deride as “chemical” sunscreens. These sunscreen opponents prefer “physical” or “mineral” sunscreens, such as zinc oxide, even though all sunscreen ingredients are chemicals.

“It’s an artificial categorization,” said E. Dennis Bashaw, a retired FDA official who ran the agency’s clinical pharmacology division that studies sunscreens.

Still, such concerns were partly fed by the FDA itself after it published a study that said some sunscreen ingredients had been found in trace amounts in human bloodstreams. When the FDA said in 2019, and then again two years later, that older sunscreen ingredients needed to be studied more to see if they were safe, sunscreen opponents saw an opening, said Nadim Shaath, president of Alpha Research & Development, which imports chemicals used in cosmetics.

“That’s why we have extreme groups and people who aren’t well informed thinking that something penetrating the skin is the end of the world,” Shaath said. “Anything you put on your skin or eat is absorbed.”

Adamson, the Austin dermatologist, said some sunscreen ingredients have been used for 30 years without any population-level evidence that they have harmed anyone. “The issue for me isn’t the safety of the sunscreens we have,” he said. “It’s that some of the chemical sunscreens aren’t as broad spectrum as they could be, meaning they do not block UVA as well. This could be alleviated by the FDA allowing new ingredients.”

Ultraviolet radiation falls between X-rays and visible light on the electromagnetic spectrum. Most of the UV rays that people come in contact with are UVA rays that can penetrate the middle layer of the skin and that cause up to 90% of skin aging, along with a smaller amount of UVB rays that are responsible for sunburns.

The sun protection factor, or SPF, rating on American sunscreen bottles denotes only a sunscreen’s ability to block UVB rays. Although American sunscreens labeled “broad spectrum” should, in theory, block UVA light, some studies have shown they fail to meet the European Union’s higher UVA-blocking standards.

“It looks like a number of these newer chemicals have a better safety profile in addition to better UVA protection,” said David Andrews, deputy director of Environmental Working Group, a nonprofit that researches the ingredients in consumer products. “We have asked the FDA to consider allowing market access.”

The FDA defends its review process and its call for tests of the sunscreens sold in American stores as a way to ensure the safety of products that many people use daily, rather than just a few times a year at the beach.

“Many Americans today rely on sunscreens as a key part of their skin cancer prevention strategy, which makes satisfactory evidence of both safety and effectiveness of these products critical for public health,” Cherie Duvall-Jones, an FDA spokesperson, wrote in an email.

D’Ruiz’s company, DSM-Firmenich, is the only one currently seeking to have a new over-the-counter sunscreen ingredient approved in the United States. The company has spent the past 20 years trying to gain approval for bemotrizinol, a process D’Ruiz said has cost $18 million and has advanced fitfully, despite attempts by Congress in 2014 and 2020 to speed along applications for new UV filters.

Bemotrizinol is the bedrock ingredient in nearly all European and Asian sunscreens, including those by the South Korean brand Beauty of Joseon and Bioré, a Japanese brand.

D’Ruiz said bemotrizinol could secure FDA approval by the end of 2025. If it does, he said, bemotrizinol would be the most vetted and safest sunscreen ingredient on the market, outperforming even the safety profiles of zinc oxide and titanium dioxide.

As Congress and the FDA debate, many Americans have taken to importing their own sunscreens from Asia or Europe, despite the risk of fake products.

“The sunscreen issue has gotten people to see that you can be unsafe if you’re too slow,” said Alex Tabarrok, a professor of economics at George Mason University. “The FDA is just incredibly slow. They’ve been looking at this now literally for 40 years. Congress has ordered them to do it, and they still haven’t done it.”

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Through their phones, young people and some caregivers can meet BrightLife Kids and Soluna coaches, some who specialize in peer support or substance use disorders, for roughly 30-minute virtual counseling sessions that are best suited to those with more mild needs, typically those without a clinical diagnosis. The apps also feature self-directed activities, such as white noise sessions, guided breathing, and videos of ocean waves to help users relax.

“We believe they’re going to have not just great impact, but wide impact across California, especially in places where maybe it’s not so easy to find an in-person behavioral health visit or the kind of coaching and supports that parents and young people need,” said Gov. Gavin Newsom’s health secretary, Mark Ghaly, during the Jan. 16 announcement.

The apps represent one of the Democratic governor’s major forays into health technology and come with four-year contracts valued at $498 million. California is believed to be the first state to offer a mental health app with free coaching to all young residents, according to the Department of Health Care Services, which operates the program.

However, the rollout has been slow. Only about 15,000 of the state’s 12.6 million children and young adults have signed up for the apps, school counselors say they’ve never heard of them, and one of the companies isn’t making its app available on Android phones until summer.

Advocates for youth question the wisdom of investing taxpayer dollars in two private companies. Social workers are concerned the companies’ coaches won’t properly identify youths who need referrals for clinical care. And the spending is drawing lawmaker scrutiny amid a state deficit pegged at as much as $73 billion.

An App for That

Newsom’s administration says the apps fill a need for young Californians and their families to access professional telehealth for free, in multiple languages, and outside of standard 9-to-5 hours. It’s part of Newsom’s sweeping $4.7 billion master plan for kids’ mental health, which was introduced in 2022 to increase access to mental health and substance use support services. In addition to launching virtual tools such as the teletherapy apps, the initiative is working to expand workforce capacity, especially in underserved areas.

“The reality is that we are rarely 6 feet away from our devices,” said Sohil Sud, director of Newsom’s Children and Youth Behavioral Health Initiative. “The question is how we can leverage technology as a resource for all California youth and families, not in place of, but in addition to, other behavioral health services that are being developed and expanded.”

The virtual platforms come amid rising depression and suicide rates among youth and a shortage of mental health providers. Nearly half of California youths from the ages of 12 to 17 report having recently struggled with mental health issues, with nearly a third experiencing serious psychological distress, according to a 2021 study by the UCLA Center for Health Policy Research. These rates are even higher for multiracial youths and those from low-income families.

But those supporting youth mental health at the local level question whether the apps will move the needle on climbing depression and suicide rates.

“It’s fair to applaud the state of California for aggressively seeking new tools,” said Alex Briscoe of California Children’s Trust, a statewide initiative that, along with more than 100 local partners, works to improve the social and emotional health of children. “We just don’t see it as fundamental. And we don’t believe the youth mental health crisis will be solved by technology projects built by a professional class who don’t share the lived experience of marginalized communities.”

The apps, BrightLife Kids and Soluna, are operated by two companies: Brightline, a 5-year-old venture capital-backed startup; and Kooth, a London-based publicly traded company that has experience in the U.K. and has also signed on some schools in Kentucky and Pennsylvania and a health plan in Illinois. In the first five months of Kooth’s Pennsylvania pilot, 6% of students who had access to the app signed up.

Brightline and Kooth represent a growing number of health tech firms seeking to profit in this space. They beat out dozens of other bidders including international consulting companies and other youth telehealth platforms that had already snapped up contracts in California.

Although the service is intended to be free with no insurance requirement, Brightline’s app, BrightLife Kids, is folded into and only accessible through the company’s main app, which asks for insurance information and directs users to paid licensed counseling options alongside the free coaching. After KFF Health News questioned why the free coaching was advertised below paid options, Brightline reordered the page so that, even if a child has high-acuity needs, free coaching shows up first.

The apps take an expansive view of behavioral health, making the tools available to all California youth under age 26 as well as caregivers of babies, toddlers, and children 12 and under. When KFF Health News asked to speak with an app user, Brightline connected a reporter with a mother whose 3-year-old daughter was learning to sleep on her own.

‘It’s Like Crickets’

Despite being months into the launch and having millions in marketing funds, the companies don’t have a definitive rollout timeline. Brightline said it hopes to have deployed teams across the state to present the tools in person by midyear. Kooth said developing a strategy to hit every school would be “the main focus for this calendar year.”

“It’s a big state — 58 counties,” Bob McCullough of Kooth said. “It’ll take us a while to get to all of them.”

So far BrightLife Kids is available only on Apple phones. Brightline said it’s aiming to launch the Android version over the summer.

“Nobody’s really done anything like this at this magnitude, I think, in the U.S. before,” said Naomi Allen, a co-founder and the CEO of Brightline. “We’re very much in the early innings. We’re already learning a lot.”

The contracts, obtained by KFF Health News through a records request, show the companies operating the two apps could earn as much as $498 million through the contract term, which ends in June 2027, months after Newsom is set to leave office. And the state is spending hundreds of millions more on Newsom’s virtual behavioral health strategy. The state said it aims to make the apps available long-term, depending on usage.

The state said 15,000 people signed up in the first three months. When KFF Health News asked how many of those users actively engaged with the app, it declined to say, noting that data would be released this summer.

KFF Health News reached out to nearly a dozen California mental health professionals and youths. None of them were aware of the apps.

“I’m not hearing anything,” said Loretta Whitson, executive director of the California Association of School Counselors. “It’s like crickets.”

Whitson said she doesn’t think the apps are on “anyone’s” radar in schools, and she doesn’t know of any schools that are actively advertising them. Brightline will be presenting its tool to the counselor association in May, but Whitson said the company didn’t reach out to plan the meeting; she did.

Concern Over Referrals

Whitson isn’t comfortable promoting the apps just yet. Although both companies said they have a clinical team on staff to assist, Whitson said she’s concerned that the coaches, who aren’t all licensed therapists, won’t have the training to detect when users need more help and refer them to clinical care.

This sentiment was echoed by other school-based social workers, who also noted the apps’ duplicative nature — in some counties, like Los Angeles, youths can access free virtual counseling sessions through Hazel Health, a for-profit company. Nonprofits, too, have entered this space. For example, Teen Line, a peer-to-peer hotline operated by Southern California-based Didi Hirsch Mental Health Services, is free nationwide.

While the state is also funneling money to the schools as part of Newsom’s master plan, students and school-based mental health professionals voiced confusion at the large app investment when, in many school districts, few in-person counseling roles exist, and in some cases are dwindling.

Kelly Merchant, a student at College of the Desert in Palm Desert, noted that it can be hard to access in-person therapy at her school. She believes the community college, which has about 15,000 students, has only one full-time counselor and one part-time bilingual counselor. She and several students interviewed by KFF Health News said they appreciated having engaging content on their phone and the ability to speak to a coach, but all said they’d prefer in-person therapy.

“There are a lot of people who are seeking therapy, and people close to me that I know. But their insurances are taking forever, and they’re on the waitlist,” Merchant said. “And, like, you’re seeing all these people struggle.”

Fiscal conservatives question whether the money could be spent more effectively, like to bolster county efforts and existing youth behavioral health programs.

Republican state Sen. Roger Niello, vice chair of the Senate Budget and Fiscal Review Committee, noted that California is forecasted to face deficits for the next three years, and taxpayer watchdogs worry the apps might cost even more in the long run.

“What starts as a small financial commitment can become uncontrollable expenses down the road,” said Susan Shelley of the Howard Jarvis Taxpayers Association.

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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KFF Health News has been tracking how that money is used — or misused — nationwide.

But determining how much of that windfall arrived in a specific county or city — and how much will follow in the future — can be challenging. Most localities are not required to make the information public.

BrownGreer, the court-appointed firm administering the settlements, tracks much of this data but kept it private until KFF Health News negotiated to obtain it last year. KFF Health News made that information public for the first time last June.

Five months later, BrownGreer began quietly posting updated versions of the information on a public website.

Roma Petkauskas, a partner at BrownGreer, told KFF Health News that the change was made to assist state and local governments in accessing the information easily and “to promote transparency into the administration” of the settlements. She said the data is updated “regularly when new payments are issued,” which can be as frequent as twice a month.

KFF Health News downloaded the data on March 4 and transformed it from state-by-state spreadsheets with separate entries for each settling company to a searchable database. Users can determine the total dollar amount their city, county, or state has received or expects to receive each year.

Determining how much money has arrived is the first step in assessing whether the settlements will make a dent in the nation’s addiction crisis.

Although this is the most comprehensive data available at a national scale, it provides just a snapshot of all opioid settlement payouts.

The information currently reflects only the largest settlement to date: $26 billion to be paid by pharmaceutical distributors AmerisourceBergen (now called Cencora), Cardinal Health, and McKesson, as well as opioid manufacturer Janssen (now known as Johnson & Johnson Innovative Medicine).

Most states have also settled with drug manufacturers Teva and Allergan, as well as Walmart, Walgreens, and CVS. Petkauskas said BrownGreer began distributing payments from these five companies in 2024 and plans to update its data to reflect such payments in July.

Other settlements, including with OxyContin manufacturer Purdue, are still pending.

This data does not reflect additional settlements that some state and local governments have entered into beyond the national deals, such as the agreement between Illinois, Indiana, Kentucky, Michigan, and Ohio and regional supermarket chain Meijer.

As such, this database undercounts the amount of opioid settlement money most places have received and will receive.

Payment details for some states are not available because those states were not part of national settlement agreements, had unique settlement terms, or opted not to have their payments distributed via BrownGreer. A few examples include:

• Alabama and West Virginia declined to join several national settlements and instead reached individual settlements with many of these companies.
• Texas and Nevada were paid in full by Janssen outside of the national settlement, so their payout data reflects payments only from AmerisourceBergen, Cardinal Health, and McKesson.
• Florida, Louisiana, and Pennsylvania, among others, opted to receive a lump-sum payment via BrownGreer then distribute the money to localities themselves.

KFF Health News’ Colleen DeGuzman contributed to this report. Jai Aslam also contributed.

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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.”

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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(If you can’t see the audio player, click here to listen on SoundCloud.)

Singing was the only time I felt in control of my lungs and, paradoxically, able to forget about them.

It was October and my shortness of breath had worsened after weeks of teasing improvement. I felt breathless walking or resting, lying down or sitting, working or watching Netflix, talking or silently meditating. But not while singing.

Since my likely covid infection last June, I’ve grown familiar with the discomfort and frustration of feeling as if my body is not getting all the air it needs. I’ve also come to deeply appreciate the moments when my breathing returns to its autonomous function and takes up no portion of my consciousness.

My early symptoms a year ago were fairly typical for covid: sore throat, headache, fatigue and shortness of breath. Although I never tested positive for SARS-CoV-2, some of my doctors believe I was infected. I also suspect it, given I’m still dealing with symptoms a year later.

Music has always been part of my life, including through the pandemic. I began classical violin lessons at age 5, leaving them behind for folk music six years later. I longed to be part of the various folk music traditions my older sister was playing on the piano and hammered dulcimer. I joined my first choir at age 12, which spoiled me with a repertoire of songs ranging the world over. As an adult, I’ve done my best to satisfy ethnomusicological proclivities with workshops, song-sharing events and jam sessions, but I haven’t regularly sung with a choir since college. The pandemic provided a new opportunity: a “cross-countries” virtual choir.

From September 2020 through April 2021, we met one weekend a month to learn a Yoruba play song from Nigeria, a song from the Sevdalinka tradition in Bosnia and Herzegovina, an Appalachian standard, a folk song from the Gilan province of Iran and many more.

Quebec was one of our “destinations” in October, and all stress melted from my body the first time I heard “Mes chers amis, je vous invite.” The dissonant harmonies of the mournful French Canadian drinking song may not relax everybody, but they resonated with me so strongly that I started spending much of my free time learning its tricky middle harmony.

I was surprised by how much relief it gave — both physical and emotional. Even after I’d mastered the notes and memorized the words of that Québécois song, I’d sing through it anytime I needed a break from the shortness of breath.

Lydia Zuraw sings the melody and a harmony of the first verse of “Mes chers amis, je vous invite”:

(Can’t see the audio player? Click here to listen on SoundCloud.)

Longer Breaths, Lower Stress

Long before covid, music therapists used singing and wind instruments to help patients with respiratory issues like chronic obstructive pulmonary disease (COPD) and asthma.

Longer breaths can help promote relaxation and reduce the body’s stress response, said Seneca Block, who oversees most of the music and art therapy programs at University Hospitals health system in northeastern Ohio. This is why practices like yoga and meditation focus so much on breathwork.

And the controlled breathing required for singing or playing the harmonica can help a person fully grasp what it means to lengthen exhalation.

“When you breathe into a harmonica … you’re hearing a pitch,” said Block, whose team has led harmonica groups for COPD patients. “That’s teaching them that that’s the marker, so they’re doing it right.”

People with respiratory issues are sometimes given an “incentive spirometer” — a medical device to help them exercise their lungs. Singing therapy works in a similar but less technical way, with notes that replace a rising and falling ball as the incentive, Block said.

Breathing incentives with singing and wind instruments have been linked to better sleep, less shortness of breath and brighter mood, said Joanne Loewy, director of the Louis Armstrong Center for Music and Medicine at Mount Sinai Health System in New York.

Loewy leads a choir of patients recovering from stroke. It can look like any other choir at certain moments, “but in between the songs, we might focus on the memory,” she said. “We’re constantly seeking ways to help people stay well with music.”

Researchers are beginning to study whether these same therapies can help patients recover from covid as well.

In early August, about a month into my recovery, I heard about one such program being developed in England called ENO Breathe. In the pilot program, 12 participants learned breathing and singing exercises based on the techniques of professional singers. By the end of the trial, most participants reported improvement in their breathlessness and a drop in anxiety.

Having first experienced breathing exercises in choirs, I thought ENO Breathe made sense. Singing warmups can help prepare the body for sustained exhalations. Breathing from the diaphragm — a muscle separating the chest and abdomen — is how singers get more air into their lungs to support the power and length of their notes.

Loewy’s team and Mount Sinai’s Center for Post-COVID Care plan to launch a yearlong study of how weekly virtual group music therapy might improve respiratory symptoms, depression, anxiety, quality of life, fatigue, sleep and resilience in long-covid patients with continuing respiratory issues.

The University of Limerick in Ireland is running a similar study with the aim of retraining the muscles used in breathing.

‘Peace in the Chaos’

I turned to music for help in a less clinical capacity, but I’m not the only person with persistent covid symptoms to do so.

When Danielle Rees, 34, of Tucson, Arizona, learned about a breathwork program used by many other “long haulers,” it reminded her of singing, so she dug out CDs of her high school choir and started singing along, “because it’s way more fun than just trying to breathe in and out for 10 minutes.”

Singing through an entire song again makes her feel accomplished, as does playing piano, something she hadn’t done since grade school.

“When I felt like I wanted to practice piano, I was able to sit down and make that happen,” Rees said. “That, for me, was a big sign that my brain was functioning again.”

I’ve heard from other long haulers struggling with cognitive challenges, often referred to as “brain fog,” who hope that teaching themselves to play a new musical instrument will help them out of it. Others sing, play instruments or just listen to music to bring some normalcy back into their lives and help them find solace from the anger and anguish of long covid.

Music therapists say it’s difficult to separate the entwined physical and psychological benefits of their work because of how connected the mind and body are.

I don’t know whether singing through my shortness of breath last October simply soothed me or actually improved how my lungs functioned. I suspect it helped on both fronts.

Dona Nobis Pacem #SongsOfComfort pic.twitter.com/llIpE8MRPw

— Lydia Zuraw (@lydiazuraw) March 31, 2020

Music helps combat the anxiety and stress caused by a lack of socialization, said Block of University Hospitals in Ohio. “Music, historically, was something that was just always really amazing at bringing people together and kind of creating a social context in and of itself,” he said.

Because of internet latencies, syncing voices or musical instruments is practically impossible over Zoom. I spent my virtual choir rehearsals on mute, singing along with an instructor or recording, unable to hear anyone else in the choir doing the same in their own homes.

Over the eight months, we recorded ourselves singing what we learned and sent those recordings to the choir leaders, who edited them together. During our last gathering in April, we listened to all the collaborations in a Zoom concert.

I miss the feeling when first learning a song when my vocal cords finally notch into the right note and hearing it in the context of the harmonies all around me. I miss the energy you give and take with people around you during a performance.

A virtual choir may not have been the same as in-person, but through the isolation, stress and physical limitation, I was deeply grateful to have had it.

“During these times of great stress and great anxiety, things like music and the arts become even more important to people,” Block said. “It helps retain a sense of hope and a sense of peace in the chaos.”

This story was produced by KHN, 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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Table of Contents

Health care for the nation’s seniors looms large as the baby-boom generation ages into retirement. President Joe Biden tacitly acknowledged those needs in March with his proposal to spend $400 billion over the next eight years to improve access to in-home and community-based care.

The swelling population of seniors will far outpace growth in other age groups. That acceleration — and the slower growth in other age groups — could leave many older Americans with less family to rely on for help in their later years. Meanwhile, federal officials estimate that more than half of people turning 65 will need long-term care services at some point. That care is expensive and can be hard to find.

Spending for paid long-term care already runs about $409 billion a year. Yet that staggering number doesn’t begin to reflect the real cost. Experts estimate that 1 in 6 Americans provide billions of dollars’ worth of unpaid care to a relative or friend age 50 or older in their home.

As the country weighs Biden’s plan, here’s a quick look at how long-term care works currently and what might lie ahead.

A Variety of Services

More than 65,000 paid, regulated service providers cared for 8 million Americans in 2016, according to the most recent federal report. In addition, AARP estimates more than 50 million people provide unpaid care, generally to family members.

Home Health Care

Care that occurs in the home, usually done by an unpaid caregiver or by a health aide, who may be employed by an agency (does not include hospice services).

12,200 home health care agencies

Community Support Services

Supplemental care including services such as adult day care centers and transportation.

4,600 adult day care centers

286,300 adults enrolled in adult day care service centers

Assisted Living/Retirement Communities

Residential facilities that can offer a variety of care levels, including assisted living centers and memory care.

28,900 assisted living and other residential care communities

811,500 residents

Nursing Homes

Full-time residential facilities that offer 24-hour supervision and nursing care.

15,600 nursing homes

1.35 million residents

Note: Data from 2016

Source: National Center for Health Statistics

Note: Data from 2016 Source: National Center for Health Statistics

Booming Number of Seniors

As baby boomers age, 10,000 people a day pass their 65th birthday. The Census Bureau estimates that more than 94.6 million people will be 65 or older in 2060.

From January to June 2018, the percentage of older adults age 85 and over needing help with personal care was more than twice the percentage for adults ages 75-84 and five times the percentage for adults ages 65-74. 

4% of 65-74

Source: Administration for Community Living’s 2019 Profile of Older Americans

8% of 75-84

21% of 85+

The Cost of Long-Term Care Services

From 2004 to 2020, the cost for facility and in-home care services has risen, on average, between 1.88% and 3.8% each year.

The median income for a household in which the head of the household is 65 or older was $47,357 in 2019.

Sources: Genworth; U.S. Census Bureau

The Physical – And Financial – Burden

The $61 Billion Price Tag

Medicaid pays for the majority of long-term care services, but Americans also pay $61 billion out-of-pocket.

Note: Data from 2018Source: Congressional Research Service

Medicaid

The federal-state health care insurance program for low-income and disabled Americans is the single-largest payer of long-term and community-based care and some in-home services. To qualify, many families must “spend down,” or reduce the older adult’s income and assets. And waiting lists for in-home care services in many states are long.

Medicare

The federal health insurance program for seniors and certain people with disabilities usually pays for acute care and post-acute, skilled nursing care and home health care services.

Other Public Programs

Other public spending comes from different sources, including states, localities, the Veterans Health Administration and the Children’s Health Insurance Program. Over half of this spending covered long-term care services given at residential care facilities for people with various mental health conditions and developmental disabilities.

Out-of-Pocket

These costs, paid for by individuals, include deductibles and copays for services as well as the direct payments made toward covering long-term care.

Private Insurance

Private health care plans usually cover payments for some limited home health and skilled nursing related to rehabilitation. Long-term care insurance may also help with these costs.

Other Private Funding

These funds generally come from nonprofit philanthropic groups, private individuals or corporations.

KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.

This story was produced by KHN, 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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Wu, 38, didn’t have a fever, cough or sore throat — the symptoms most associated with covid-19 at the time — so doctors at the hospital told her she was having a panic attack. But later she developed those symptoms, along with difficulty breathing, fatigue and neurological issues.

Wu, of San Carlos, California, believes she had covid — although, like many others who were unable to get tested early in the pandemic, she never got an official diagnosis. And, she said, its aftereffects continue to plague her.

Wu has struggled to get help from doctors, even those who take her symptoms seriously. “There’s no actual treatment,” she said, for people experiencing these lasting symptoms, often referred to as long covid. When seeking help, “you’re basically a guinea pig at this point.”

For people suffering with lingering, debilitating symptoms months after a bout with covid, pinning down a definition for long covid may seem pointless. They just want relief.

“I don’t care if it’s covid or some other illness,” Wu said. “I want to get better.”

But to public health experts, medical researchers and health care providers, understanding the causes, risk factors and spectrum of symptoms is vital.

“There’s no single sign or lab test that can distinguish this syndrome from something else,” said Dr. John Brooks, chief medical officer for the Centers for Disease Control and Prevention’s covid response. “Having something that we can use to define a [long-covid] case is critical” for tracking how many people get it and how well they do, and to establish research criteria for clinical trials.

It’s no easy task. There is no typical covid “long hauler.” After an infection, some people’s initial symptoms don’t abate, while other people develop entirely new symptoms that may affect multiple organs and systems. Studies have documented hundreds of lingering problems, but intense fatigue; chest pain; memory and concentration problems, often referred to as “brain fog”; shortness of breath; and a loss of taste and smell are common.

Having been hospitalized or placed on a ventilator isn’t a reliable sign that someone will develop the condition. Many young, previously healthy people who had a mild initial infection are battling long covid. Some people’s symptoms drag on for months after their acute infection, while others’ symptoms ebb and flow on a “corona coaster” of relapse and recovery.

In February, the National Institutes of Health announced a $1.15 billion, four-year initiative to study the causes and prevention of long covid. The new research will bolster the growing number of studies that have already been published.

Younger and Sicker

A year ago, when the novel coronavirus was surging through New York, Mount Sinai Health System created an app to monitor covid patients at home, said David Putrino, the system’s director of rehabilitation innovation. By early May it was apparent that roughly 10% of these non-hospitalized patients weren’t getting better, he said. Many were younger and, until they got sick, healthier than the average covid patient. And they were struggling with new symptoms they hadn’t experienced in their original illness, such as heart palpitations and extreme fatigue.

An interdisciplinary team started to see these patients at what later became the Center for Post-Covid Care. Up to 30% of the patients have persistent symptoms that are a continuation of those they experienced when they were acutely ill, Putrino said. The other 70% tend to have novel symptoms that are specific to long covid.

Mount Sinai’s clinic, which manages the care of about 900 long covid patients, is one of several dozen across the country devoted to covid recovery, though the parameters for which patients they treat vary. Many involve multiple medical specialties, while others are dedicated to neurological or pulmonary symptoms or the aftereffects of ICU stays. Some require the patient to have a positive diagnostic or antibody test.

Putrino noted that some symptoms that covid long haulers complain of are similar to those that affect people with “post-viral syndrome” who are recovering from serious infections like Ebola and Zika.

Such viral infections can cause severe inflammation and residual symptoms that last for months or years, said Dr. Steven Deeks, a professor of medicine at the University of California-San Francisco who is tracking people with long-covid symptoms.

Other researchers have suggested that long covid may actually encompass a number of separate syndromes, including post-intensive care syndrome, post-traumatic stress disorder or myalgic encephalomyelitis, sometimes called chronic fatigue syndrome. Still others note that some long covid symptoms look like dysautonomia, a term for disorders of the autonomous nervous system, which regulates breathing and heart rate, among other things.

Whatever “long covid” ultimately comes to mean, it continues to surprise medical experts. If someone has a serious bout of pneumonia, an infection that inflames the air sacs in the lungs, it’s not surprising if they have a bad cough for a few months as their body slowly heals, said Brooks, of the CDC.

But with a covid infection, sometimes that cough doesn’t go away for many months, and along with it someone might have brain fog. Another might develop encephalitis, a swelling of the brain.

“This is not a cluster [of symptoms] that we see after a typical viral respiratory infection,” Brooks said.

A Push by Patients

There are several working theories about what causes long covid.

Some studies suggest that the virus or remnants of it may lurk in the body and continue to stimulate the immune system. Or the virus may have been cleared, but “the immune system keeps fighting against a perceived enemy, because it hasn’t gotten the word that the war is over,” said Dr. Michael Saag, a professor of medicine and infectious diseases at the University of Alabama-Birmingham who participated in a two-day workshop sponsored by NIH in December. Or tissues may have been damaged during the initial immune response, causing long-term symptoms.

Despite the imprimatur of respected researchers and public health experts, skeptics remain. Some doctors complain that the diagnosis is being propelled by interest groups rather than science. Others compare it to other chronic conditions, like fibromyalgia, for which there are no definitive diagnostic tests. Some suggest it is a psychosomatic illness.

Patients and their advocates played a crucial role in drawing attention to and gaining acceptance of long covid.

After contracting covid in March 2020, Diana Berrent started Survivor Corps as a Facebook support group; it has grown into a broader advocacy organization for covid patients, with more than 150,000 members.

“Most of the people who we see suffering from long-term covid were not the ones who were in the hospital and on ventilators,” Berrent said. “These are people who mostly had what I had — what I call the ‘Tylenol and Gatorade’ variety of covid,” which they coped with at home.

Much like patients with myalgic encephalomyelitis/chronic fatigue syndrome, people with long covid say finding supportive medical providers is a problem, said Emily Taylor, director of advocacy and community relations at the group Solve M.E. It recently co-founded the Long Covid Alliance with 21 other organizations to draw attention to post-viral illnesses.

Long covid presents an opportunity to find answers not only for long covid but also for a range of conditions that have struggled for research dollars and support.

“The post-viral research community is all coming together now to address covid,” Taylor said. “Frankly, there’s no other option.”

This story was produced by KHN, 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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This story can be republished for free (details).

Long after their initial coronavirus infections, patients with a malady known as “long covid” continue to struggle with varied symptoms such as fatigue, shortness of breath, gastrointestinal problems, muscle and joint pain, and neurological issues. Novotny has been contending with these and more, despite testing negative for covid-19 seven months ago.

Experts don’t yet know what causes long covid or why some people have persistent symptoms while others recover in weeks or even days. They also don’t know just how long the condition — referred to formally by scientists as Post-Acute Sequelae of SARS-CoV-2 infection, or PASC — lasts.

But the people who didn’t test positive for covid — due either to a lack of access to testing or a false-negative result — face difficulty getting treatment and disability benefits. Their cases are not always included in studies of long covid despite their lingering symptoms. And, sometimes as aggravating, many find that family, friends or even doctors have doubts they contracted covid at all.

Novotny, who first became ill in August, initially returned to work at the beginning of the school year, but her symptoms snowballed and, one day months later, she couldn’t catch her breath at work. She went home and hasn’t been well enough to return.

“It is sad and frustrating being unable to work or play with my kids,” Novotny said via email, adding that it’s devastating to see how worried her family is about her. “My 9-year-old is afraid that if I’m left alone, I will have a medical emergency and no one will be here to help.”

Data about the frequency of false-negative diagnostic covid tests is extremely limited. A study at the Johns Hopkins School of Medicine and Bloomberg School of Public Health, which focused on the time between exposure and testing, found a median false-negative rate of 20% three days after symptoms start. A small study in China conducted early in the pandemic found a high rate of negative tests even among patients sick enough to be hospitalized. And given the dearth of long-hauler research, patients dealing with lingering covid symptoms have organized to study themselves.

The haphazard protocols for testing people in the United States, the delays and difficulties accessing tests and the poor quality of many of the tests left many people without proof they were infected with the virus that causes covid-19.

“It’s great if someone can get a positive test, but many people who have covid simply will never have one, for a variety of different reasons,” said Natalie Lambert, an associate research professor at the Indiana University School of Medicine and director of research for the online covid support group Survivor Corps.

Lambert’s work with computational analytics has found that long haulers face such a wide variety of symptoms that no single symptom is a good screening tool for covid. “If PCR tests are not always accurate or available at the right time and it’s not always easy to diagnose based on someone’s initial symptoms, we really need to have a more flexible, expansive way of diagnosing for covid based on clinical presentations,” she said.

Dr. Bobbi Pritt, chair of the division of clinical microbiology at Mayo Clinic in Minnesota, said four factors affect the accuracy of a diagnostic test: when the patient’s sample is collected, what part of the body it comes from, the technique of the person collecting the sample and the test type.

“But if one of those four things isn’t correct,” said Pritt, “you could still have a false-negative result.”

Timing is one of the most nebulous elements in accurately detecting SARS-CoV-2. The body doesn’t become symptomatic immediately after exposure. It takes time for the virus to multiply and this incubation period tends to last four or five days before symptoms start for most people. “But we’ve known that it can be as many as 14 days,” Pritt said.

Testing during that incubation period — however long it may be — means there may not be enough detectable virus yet.

“Early on after infection, you may not see it because the person doesn’t have enough virus around for you to find,” said Dr. Yuka Manabe, an infectious-disease expert and a professor at the Johns Hopkins University School of Medicine.

Novotny woke up with symptoms on Aug. 14 and got a covid test later that day. Three days later — the same day her test result came back negative — she went to the hospital because of severe shortness of breath and chest pressure.

“The hospital chose not to test me due to test shortages and told me to presume positive,” Novotny wrote, adding that hospital staffers told her she likely tested too early and received a false negative.

As the virus leaves the body, it becomes undetectable, but patients may still have symptoms because their immune responses kicked in. At that point, “you’re seeing more of an inflammatory phase of illness,” Manabe said.

An autoimmune response, in which the body’s defense system attacks its own healthy tissue, may be behind persistent covid symptoms in many patients, though small amounts of virus hiding in organs is another explanation.

Andréa Ceresa is nearing a year of long covid and has an extensive list of symptoms, topped by gastrointestinal and neurological issues. When the 47-year-old from Branchburg, New Jersey, got sick last April, she had trouble getting a covid test. Once she did, her result was negative.

Ceresa has seen so many doctors since then that she can’t keep them straight. She considers herself lucky to have finally found some “fantastic” doctors, but she’s also seen plenty who didn’t believe her or tried to gaslight her — a frequent complaint of long haulers.

A couple of doctors told her they didn’t think her condition had anything to do with covid. One told her it was all in her head. And after a two-month wait to see one neurologist, he didn’t order any tests and simply told her to take vitamin B, leaving her “crying and devastated.”

“I think the negative test absolutely did that,” Ceresa said.

Fortunately, among a growing number of physicians specifically treating patients with long covid, positive test results aren’t vital. In the patient-led research, symptoms patients reported were not significantly different between those who had positive covid tests and those who had negative tests.

Dr. Monica Verduzco-Gutierrez, a rehabilitation and physical medicine doctor who leads University Health’s Post-COVID Recovery program in San Antonio, said about 12% of the patients she’s seen never had a positive covid test.

“The initial test, to me, is not as important as the symptoms,” Gutierrez said. “You have to spend a lot of time with these patients, provide education, provide encouragement and try to work on all the issues that they’re having.”

She said she tells people “what’s done is done” and, regardless of test status, “now we need to treat the outcome.”

This story was produced by KHN, 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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