Biden's reforms don't address residents' rights to have contact with informal caregivers — family members and friends who provide emotional support and practical assistance.

This article was published on Tuesday, March 22, 2022 in Kaiser Health News.

By Judith Graham

When the Biden administration announced a set of proposed nursing home reforms last month, consumer advocates were both pleased and puzzled.

The reforms call for minimum staffing requirements, stronger regulatory oversight, and better public information about nursing home quality — measures advocates have promoted for years. Yet they don't address residents' rights to have contact with informal caregivers — family members and friends who provide both emotional support and practical assistance.

That's been a painful concern during the pandemic as nursing homes have locked down, caregivers have been unable to visit loved ones, and a significant number of residents have become isolated, discouraged, or depressed.

Thousands of residents died alone, leaving a trail of grief for those who couldn't be by their side. Altogether, more than 200,000 residents and staffers in long-term care facilities perished of COVID-19 in the first two years of the pandemic, according to an analysis by KFF.

"What we learned is that family members' support is absolutely essential to the well-being of residents," said Mairead Painter, Connecticut's long-term care ombudsman. (Ombudsmen are official advocates for nursing home residents.) "We need to make sure that the far-reaching restrictions put in place never happen again."

Although nursing home residents have a right to have visitors under federal law, this protection was "degraded" during the pandemic, said Tony Chicotel, a staff attorney for California Advocates for Nursing Home Reform. "I worry that facilities and public health departments will feel emboldened to cut visitation off at their discretion, whenever there's an infectious disease outbreak," he explained.

What's needed now, Chicotel suggested, is legislation stating that "even in a public health emergency, residents have a core right to support from [informal] caregivers that cannot be waived."

A new "essential caregivers" bill in California (AB-2546) would allow residents to designate two such informal caregivers, one of which would have access to a facility around-the-clock without advance scheduling. Caregivers would need to comply with the same safety and infection control protocols that apply to staffers. Laws with a similar intent have passed in 11 states, according to the Essential Caregivers Coalition, an advocacy group formed during the pandemic.

Nationally, the Essential Caregivers Act of 2021, another measure along these lines, is languishing in the House Ways and Means health subcommittee. Competing priorities, pandemic-related fatigue, and a sense that the COVID emergency "is behind us" are contributing to inaction, said Maitely Weismann, a co-founder of the Essential Caregivers Coalition.

If sweeping nursing home changes don't address the harm to residents when they are cut off from families, "we're only halfway where we need to be," she cautioned. The White House did not respond to requests for comment about whether it planned to address the issue.

Elizabeth O. Stern, 69, of Stonington, Connecticut, was unable to see her 91-year-old mother for eight months after her mother's nursing home shut its doors on March 10, 2020. Before the pandemic, Stern visited nearly every day with her mother, who had a stroke in 2016 and developed dementia.

"I did her laundry and cleaned and washed the windows in her room," Stern told me. "I took care of her fingernails and much of her personal care. I'd sing her to sleep at night."

Unable to see her family during the long pandemic-inspired lockdown, Stern's mother became anguished, and her health deteriorated. Two and a half days before she died in November 2020, Stern was finally able to get inside the nursing home to say her final goodbyes.

"So many family caregivers like me are scratching their heads and wondering why, after all the devastation we've suffered, are we again being overlooked in the [Biden administration's] proposed reforms," she said.

New research confirms the extent of assistance that family caregivers like Stern provide. Using national survey data from 2016, researchers from the University of Pennsylvania reported in a recent Health Affairs study that informal caregivers helped 91% of nursing home residents who needed aid with medications; 76% of residents who required assistance with self-care tasks such as bathing or dressing; 75% of residents who had problems such as getting in and out of bed or moving across a room; and 71% who required aid with household tasks, such as managing money. On average, this care from informal caregivers amounted to 37 hours a month.

In addition to the harmful effect on residents, the loss of this assistance during the pandemic placed extra burdens on already-stressed nursing home workers, contributing to the staffing crisis that afflicts long-term care, said Dr. Rachel Werner, co-author of the study.

"The discussion we should be having is how to support [informal] caregivers in long-term care facilities, whether we're in a pandemic or not, by acknowledging what they do, giving them more training, and making them part of care teams and the care planning process," Werner said.

Robyn Grant, director of public policy and advocacy at the National Consumer Voice for Quality Long-Term Care, an advocacy organization, added a note of caution. "One of the things we're concerned about is that family members and the assistance they provide might be looked at, in some cases, as part of a solution to short-staffing in nursing homes," she told me.

"Yes, family members can help, and we want to make sure that their access to long-term care facilities is ensured. But they can't be seen as a substitute for staff."

In San Francisco, that line blurred for Dr. Teresa Palmer, a geriatrician, whose 103-year-old mother took to bed in her nursing home in March 2021 and wouldn't get up. Concerned, Palmer insisted on a "compassionate care" exception to the nursing home's lockdown rules and was able to see her mother inside the facility for the first time in a year.

"To the staff, my mother was just an old person who was acting old. But she was down to 90 pounds from a baseline weight of 105 and her bowel functions had changed," said Palmer, who took her mother to the hospital, where she was diagnosed with malnourishment, dehydration, and pancreatic cancer.

Palmer brought her mother home from the hospital, with hospice care, where she died 10 weeks later.

"Even in a very good nursing home such as my mother's, they really don't have time to make sure residents are eating enough or drinking enough or give the hands-on loving care that family members provide," Palmer said.

As for the nursing home industry, there are signs this lesson has hit home. In a statement about the national Essential Caregivers Act, the American Healthcare Association said, "We applaud this bill and welcome family members and friends taking an active role in the care of their loved ones." The statement was forwarded by Cristina Crawford, senior manager of public affairs.

Ruth Katz, senior vice president of public policy at Leading Age, another long-term care association, wrote in a statement that her group believes quality care "includes residents' ability to maintain regular connections to and contact with family and friends" and expects new federal rules to reinforce caregivers' efforts to support nursing home residents in emergencies in the future.

We're eager to hear from readers about questions you'd like answered, problems you've been having with your care and advice you need in dealing with the healthcare system. Visit khn.org/columnists to submit your requests or tips.

Judith Graham: khn.navigatingaging@gmail.com, @judith_graham

RaDonda Vaught's prosecution is a rare example of a healthcare worker facing years in prison for a medical error.

This article was published on Tuesday, March 22, 2022 in Kaiser Health News.

By Brett Kelman

NASHVILLE, Tenn. — Four years ago, inside the most prestigious hospital in Tennessee, nurse RaDonda Vaught withdrew a vial from an electronic medication cabinet, administered the drug to a patient, and somehow overlooked signs of a terrible and deadly mistake.

The patient was supposed to get Versed, a sedative intended to calm her before being scanned in a large, MRI-like machine. But Vaught accidentally grabbed vecuronium, a powerful paralyzer, which stopped the patient's breathing and left her brain-dead before the error was discovered.

Vaught, 38, admitted her mistake at a Tennessee Board of Nursing hearing last year, saying she became "complacent" in her job and "distracted" by a trainee while operating the computerized medication cabinet. She did not shirk responsibility for the error, but she said the blame was not hers alone.

"I know the reason this patient is no longer here is because of me," Vaught said, starting to cry. "There won't ever be a day that goes by that I don't think about what I did."

If Vaught's story followed the path of most medical errors, it would have been over hours later, when the Board of Nursing revoked her RN license and almost certainly ended her nursing career. But Vaught's case is different: This week she goes on trial in Nashville on criminal charges of reckless homicide and felony abuse of an impaired adult for the killing of Charlene Murphey, a 75-year-old patient who died at Vanderbilt University Medical Center on Dec. 27, 2017.

Prosecutors do not allege in their court filings that Vaught intended to hurt Murphey or was impaired by any substance when she made the mistake, so her prosecution is a rare example of a healthcare worker facing years in prison for a medical error. Fatal errors are generally handled by licensing boards and civil courts. And experts say prosecutions like Vaught's loom large for a profession terrified of the criminalization of such mistakes — especially because her case hinges on an automated system for dispensing drugs that many nurses use every day.

The Nashville district attorney's office declined to discuss Vaught's trial. Vaught's lawyer, Peter Strianse, did not respond to requests for comment. Vanderbilt University Medical Center has repeatedly declined to comment on Vaught's trial or its procedures.

Vaught's trial will be followed by nurses nationwide, many of whom worry a conviction may set a precedent even as the coronavirus pandemic leaves countless nurses exhausted, demoralized, and likely more prone to error.

Janie Harvey Garner, a St. Louis registered nurse and founder of Show Me Your Stethoscope, a nursing group with more than 600,000 members on Facebook, said the group has closely watched Vaught's case for years out of concern for her fate — and their own.

Garner said most nurses know all too well the pressures that contribute to such an error: long hours, crowded hospitals, imperfect protocols, and the inevitable creep of complacency in a job with daily life-or-death stakes.

Garner said she once switched powerful medications just as Vaught did and caught her mistake only in a last-minute triple-check.

"In response to a story like this one, there are two kinds of nurses," Garner said. "You have the nurses who assume they would never make a mistake like that, and usually it's because they don't realize they could. And the second kind are the ones who know this could happen, any day, no matter how careful they are. This could be me. I could be RaDonda."

As the trial begins, the Nashville DA's prosecutors will argue that Vaught's error was anything but a common mistake any nurse could make. Prosecutors will say she ignored a cascade of warnings that led to the deadly error.

The case hinges on the nurse's use of an electronic medication cabinet, a computerized device that dispenses a range of drugs. According to documents filed in the case, Vaught initially tried to withdraw Versed from a cabinet by typing "VE" into its search function without realizing she should have been looking for its generic name, midazolam. When the cabinet did not produce Versed, Vaught triggered an "override" that unlocked a much larger swath of medications, then searched for "VE" again. This time, the cabinet offered vecuronium.

Vaught then overlooked or bypassed at least five warnings or pop-ups saying she was withdrawing a paralyzing medication, documents state. She also did not recognize that Versed is a liquid but vecuronium is a powder that must be mixed into liquid, documents state.

Finally, just before injecting the vecuronium, Vaught stuck a syringe into the vial, which would have required her to "look directly" at a bottle cap that read "Warning: Paralyzing Agent," the DA's documents state.

The DA's office points to this override as central to Vaught's reckless homicide charge. Vaught acknowledges she performed an override on the cabinet. But she and others say overrides are a normal operating procedure used daily at hospitals.

While testifying before the nursing board last year, foreshadowing her defense in the upcoming trial, Vaught said at the time of Murphey's death that Vanderbilt was instructing nurses to use overrides to overcome cabinet delays and constant technical problems caused by an ongoing overhaul of the hospital's electronic health records system.

Murphey's care alone required at least 20 cabinet overrides in just three days, Vaught said.

"Overriding was something we did as part of our practice every day," Vaught said. "You couldn't get a bag of fluids for a patient without using an override function."

Overrides are common outside of Vanderbilt too, according to experts following Vaught's case.

Michael Cohen, president emeritus of the Institute for Safe Medication Practices, and Lorie Brown, past president of the American Association of Nurse Attorneys, each said it is common for nurses to use an override to obtain medication in a hospital.

Cohen and Brown stressed that even with an override it should not have been so easy to access vecuronium.

"This is a medication that you should never, ever, be able to override to," Brown said. "It's probably the most dangerous medication out there."

Cohen said that in response to Vaught's case, manufacturers of medication cabinets modified the devices' software to require up to five letters to be typed when searching for drugs during an override, but not all hospitals have implemented this safeguard. Two years after Vaught's error, Cohen's organization documented a "strikingly similar" incident in which another nurse swapped Versed with another drug, verapamil, while using an override and searching with just the first few letters. That incident did not result in a patient's death or criminal prosecution, Cohen said.

Maureen Shawn Kennedy, the editor-in-chief emerita of the American Journal of Nursing, wrote in 2019 that Vaught's case was "every nurse's nightmare."

In the pandemic, she said, this is truer than ever.

"We know that the more patients a nurse has, the more room there is for errors," Kennedy said. "We know that when nurses work longer shifts, there is more room for errors. So I think nurses get very concerned because they know this could be them."

Addiction tech entrepreneurs see a $42 billion U.S. market for their products and an addiction treatment field that is ripe for disruption.

This article was published on Monday, March 21, 2022 in Kaiser Health News.

By Brian Rinker

David Sarabia had already sold two startups by age 26 and was sitting on enough money to never have to work another day in his life. He moved from Southern California to New York City and began to indulge in all the luxuries his newly minted millionaire status conveyed. Then it all went sideways, and his life quickly unraveled.

"I became a massive cocaine addict," Sarabia said. "It started off just casual partying, but that escalated to pretty much anything I could get my hands on."

At one particularly low point, Sarabia was homeless for three months, sleeping on public transportation to stay warm. Even with plenty of money in the bank, Sarabia said, he'd lost the will to live. "I'd given up," he said.

He got back on his feet, sort of, and for the next three years lived as a "functional cocaine addict" until his best friend, Jay Greenwald, died after a night of partying. Finally, Sarabia checked himself into a rehab in Southern California — ostensibly a luxurious one, although Sarabia didn't find it to be so.

Still, the place saved his life. The clinicians really cared, he recalled, although their efforts were hampered by clunky technology and poor management. He had the feeling that the owners were more interested in profits than in helping people recover.

Just days off cocaine, the tech entrepreneur was scribbling designs for his next startup idea: a digital platform that would make clinician paperwork easier, combined with a mobile app to guide patients through recovery. After he left treatment in 2017, Sarabia tapped his remaining wealth — about $400,000 — to fund an addiction tech company he named inRecovery.

With the nation's opioid overdose epidemic hitting a record high of more than 100,000 deaths in 2021, effective ways to fight addiction and expand treatment access are desperately needed. Sarabia and other entrepreneurs in the realm they call addiction tech see a $42 billion U.S. market for their products and an addiction treatment field that is, in techspeak, ripe for disruption.

It has long been torn by opposing ideologies and approaches: medication-assisted treatment versus cold-turkey detox; residential treatment versus outpatient; abstinence versus harm reduction; peer support versus professional help. And most people who report struggling with substance use never manage to access treatment at all.

Tech is already offering help to some. Those who can pay out-of-pocket, or have treatment covered by an employer or insurer, can access one of a dozen addiction telemedicine startups that allow them to consult with a physician and have a medication like buprenorphine mailed directly to their home. Some of the virtual rehabs provide digital cognitive behavior treatment, with connected devices and even mail-in urine tests to monitor compliance with sobriety.

Plentiful apps offer peer support and coaching, and entrepreneurs are developing software for treatment centers that handle patient records, personalize the client's time in rehab, and connect them to a network of peers.

But while the founders of for-profit companies may want to end suffering, said Fred Muench, clinical psychologist and president of the nonprofit Partnership to End Addiction, it all comes down to revenue.

Startup experts and clinicians working on the front lines of the drug and overdose epidemic doubt the flashy Silicon Valley technology will ever reach people in the throes of addiction who are unstably housed, financially challenged, and on the wrong side of the digital divide.

"The people who are really struggling, who really need access to substance use treatment, don't have 5G and a smartphone," said Dr. Aimee Moulin, a professor and behavioral health director for the Emergency Medicine Department at UC Davis Health. "I just worry that as we start to rely on these tech-heavy therapy options, we're just creating a structure where we really leave behind the people who actually need the most help."

The investors willing to feed millions of dollars on startups generally aren't investing in efforts to expand treatment to the less privileged, Moulin said.

Besides, making money in the addiction tech business is tough, because addiction is a stubborn beast.

Conducting clinical trials to validate digital treatments is challenging because of users' frequent lapses in medication adherence and follow-up, said Richard Hanbury, founder and CEO of Sana Health, a startup that uses audiovisual stimulation to relax the mind as an alternative to opioids.

There are thousands of private, nonprofit, and government-run programs and drug rehabilitation centers across the country. With so many bit players and disparate programs, startups face an uphill battle to land enough customers to generate significant revenue, he added.

After conducting a small study to ease anxiety for people detoxing off opioids, Hanbury postponed the next step, a larger study. To sell his product to the country's sprawling array of addiction treatment providers, Hanbury decided, he would need to hire a much larger sales team than his budding company could afford.

Still, the immense need is feeding enthusiasm for addiction tech.

In San Francisco alone, more than twice as many people died from drug overdoses as from covid over the past two years. Employers, insurers, providers, families, and those suffering addiction themselves are all demanding better and affordable access to treatment, said Unity Stoakes, president and managing partner of StartUp Health.

The investment firm has launched a portfolio of seed-stage startups that aim to use technology to end addiction and the opioid epidemic. Stoakes hopes the wave of new treatment options will reduce the stigma of addiction and increase awareness and education. The emerging tools aren't trying to remove human care for addiction, but rather "supercharge the doctor or the clinician," he said.

While acknowledging that underserved populations are hard to reach, Stoakes said tech can expand access and enhance targeted efforts to help them. With enough startups experimenting with different types of treatment and delivery methods, hopefully one or more will succeed, he said.

Addiction telehealth startups have gained the most traction. Quit Genius, a virtual addiction treatment provider for alcohol, opioid, and nicotine dependence, raised $64 million from investors last summer, and in October, $118 million went to Workit Health, a virtual prescriber of medication-assisted treatment. Several other startups — Boulder Care, Groups Recover Together, Ophelia, Bicycle Health, and Wayspring, most of which have nearly identical telehealth and prescribing models — have landed sizable funding since the pandemic started.

Some of the startups already sell to self-insured employers, providers, and payers. Some market directly to consumers, while others are conducting clinical trials to get FDA approval they hope to parlay into steadier reimbursement. But that route involves a lot of competition, regulatory hurdles, and the need to convince payers that adding another treatment will drive down costs.

Sarabia's inRecovery plans to use its software to help treatment centers run more efficiently and improve their patient outcomes. The startup is piloting an aftercare program, aimed at keeping patients connected to prevent relapse after treatment, with Caron Treatment Centers, a high-end nonprofit treatment provider based in Pennsylvania.

His long-term goal is to drive down costs enough to offer his service to county-run treatment centers in hopes of expanding care to the neediest. But for now, implementing the tech doesn't come cheap, with treatment providers paying anywhere from $50,000 to $100,000 a year to license the software.

"Bottom line, for the treatment centers that don't have consistent revenue, those on the lower end, they will probably not be able to afford something like this," he said.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Brian Rinker: @_TheBrink

Ambitious scientific endeavors have provided technological windfalls for consumers.

This article was published on Thursday, March 17, 2022 in Kaiser Health News.

By Liz Szabo

The billions of dollars invested in COVID vaccines and COVID-19 research so far are expected to yield medical and scientific dividends for decades, helping doctors battle influenza, cancer, cystic fibrosis, and far more diseases.

"This is just the start," said Dr. Judith James, vice president of clinical affairs for the Oklahoma Medical Research Foundation. "We won't see these dividends in their full glory for years."

Building on the success of mRNA vaccines for COVID, scientists hope to create mRNA-based vaccines against a host of pathogens, including influenza, Zika, rabies, HIV, and respiratory syncytial virus, or RSV, which hospitalizes 3 million children under age 5 each year worldwide.

Researchers see promise in mRNA to treat cancer, cystic fibrosis, and rare, inherited metabolic disorders, although potential therapies are still many years away.

Pfizer and Moderna worked on mRNA vaccines for cancer long before they developed COVID shots. Researchers are now running dozens of clinical trials of therapeutic mRNA vaccines for pancreatic cancer, colorectal cancer, and melanoma, which frequently responds well to immunotherapy.

Companies looking to use mRNA to treat cystic fibrosis include ReCode Therapeutics, Arcturus Therapeutics, and Moderna and Vertex Pharmaceuticals, which are collaborating. The companies' goal is to correct a fundamental defect in cystic fibrosis, a mutated protein.

Rather than replace the protein itself, scientists plan to deliver mRNA that would instruct the body to make the normal, healthy version of the protein, said David Lockhart, ReCode's president and chief science officer.

None of these drugs is in clinical trials yet.

That leaves patients such as Nicholas Kelly waiting for better treatment options.

Kelly, 35, was diagnosed with cystic fibrosis as an infant and has never been healthy enough to work full time. He was recently hospitalized for 2½ months due to a lung infection, a common complication for the 30,000 Americans with the disease. Although novel medications have transformed the lives of most people with CF, they don't work in 10% of patients. About one-third of patients who don't benefit from the new medications are Black and/or Hispanic, said JP Clancy, vice president of clinical research for the Cystic Fibrosis Foundation.

"Nobody wants to be hospitalized," said Kelly, who lives in Cleveland. "If something could decrease my symptoms even 10%, I would try it."

Predicting Which COVID Patients Are Most Likely to Die

Ambitious scientific endeavors have provided technological windfalls for consumers in the past; the race to land on the moon in the 1960s led to the development of CT scanners and MRI machines, freeze-dried food, wireless headphones, water purification systems, and the computer mouse.

Likewise, funding for AIDS research has benefited patients with a variety of diseases, said Dr. Carlos del Rio, a professor of infectious diseases at Emory University School of Medicine. Studies of HIV led to the development of better drugs for hepatitis C and cytomegalovirus, or CMV; paved the way for successful immunotherapies in cancer; and speeded the development of COVID vaccines.

Over the past two years, medical researchers have generated more than 230,000 medical journal articles, documenting studies of vaccines, antivirals, and other drugs, as well as basic research into the structure of the virus and how it evades the immune system.

Dr. Michelle Monje, a professor of neurology at Stanford University, has found similarities in the cognitive side effects caused by COVID and a side effect of cancer therapy often called "chemo brain." Learning more about the root causes of these memory problems, Monje said, could help scientists eventually find ways to prevent or treat them.

James hopes that computer technology used to detect COVID will improve the treatment of other diseases. For example, researchers have shown that cellphone apps can help detect potential COVID cases by monitoring patients' self-reported symptoms. James said she wonders if the same technology could predict flare-ups of autoimmune diseases.

"We never dreamed we could have a PCR test that could be done anywhere but a lab," James said. "Now we can do them at a patient's bedside in rural Oklahoma. That could help us with rapid testing for other diseases."

One of the most important pandemic breakthroughs was the discovery that 15% to 20% of patients over 70 who die of COVID have rogue antibodies that disable a key part of the immune system. Although antibodies normally protect us from infection, these "autoantibodies" attack a protein called interferon that acts as a first line of defense against viruses.

By disabling key immune fighters, autoantibodies against interferon allow the coronavirus to multiply wildly. The massive infection that results can lead the rest of the immune system to go into hyperdrive, causing a life-threatening "cytokine storm," said Dr. Paul Bastard, a researcher at Rockefeller University.

The discovery of interferon-targeting antibodies "certainly changed my way of thinking at a broad level," said E. John Wherry, director of the University of Pennsylvania's Institute for Immunology, who was not involved in the studies. "This is a paradigm shift in immunology and in COVID."

Antibodies that disable interferon may explain why a fraction of patients succumb to viral diseases, such as influenza, while most recover, said Dr. Gary Michelson, founder and co-chair of Michelson Philanthropies, a nonprofit that funds medical research and recently gave Bastard its inaugural award in immunology.

The discovery "goes far beyond the impact of COVID-19," Michelson said. "These findings may have implications in treating patients with other infectious diseases" such as the flu.

Bastard and colleagues have also found that one-third of patients with dangerous reactions to yellow fever have autoantibodies against interferon.

International research teams are now looking for such autoantibodies in patients hospitalized by other viral infections, including chickenpox, influenza, measles, respiratory syncytial virus, and others.

Overturning Dogma

For decades, public health officials created policies based on the assumption that viruses spread in one of two ways: either through the air, like measles and tuberculosis, or through heavy, wet droplets that spray from our mouths and noses, then quickly fall to the ground, like influenza.

For the first 17 months of the COVID pandemic, the World Health Organization and the Centers for Disease Control and Prevention said the coronavirus spread through droplets and advised people to wash their hands, stand 6 feet apart, and wear face coverings. As the crisis wore on and evidence accumulated, researchers began to debate whether the coronavirus might also be airborne.

Today it's clear that the coronavirus — and all respiratory viruses — spread through a combination of droplets and aerosols, said Dr. Michael Klompas, a professor at Harvard Medical School and infectious disease doctor.

"It's not either/or," Klompas said. "We've created this artificial dichotomy about how we think about these viruses. But we always put out a mixture of both" when we breathe, cough, and sneeze.

Knowing that respiratory viruses commonly spread through the air is important because it can help health agencies protect the public. For example, high-quality masks, such as N95 respirators, offer much better protection against airborne viruses than cloth masks or surgical masks. Improving ventilation, so that the air in a room is completely replaced at least four to six times an hour, is another important way to control airborne viruses.

Still, Klompas said, there's no guarantee that the country will handle the next outbreak any better than this one. "Will we do a better job fighting influenza because of what we've learned?" Klompas said. "I hope so, but I'm not holding my breath."

Fighting Chronic Disease

Lauren Nichols, 32, remembers exactly when she developed her first COVID symptoms: March 10, 2020.

It was the beginning of an illness that has plagued her for nearly two years, with no end in sight. Although Nichols was healthy before developing what has become known as "long COVID," she deals with dizziness, headaches, and debilitating fatigue, which gets markedly worse after exercise. She has had shingles — a painful rash caused by the reactivation of the chickenpox virus — four times since her COVID infection.

Six months after testing positive for COVID, Nichols was diagnosed with chronic fatigue syndrome, also known as myalgic encephalomyelitis, or ME/CFS, which affects more than 1 million Americans and causes many of the same symptoms as COVID. There are few effective treatments for either condition.

In fact, research suggests that "the two conditions are one and the same," said Dr. Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health. The main difference is that people with long COVID know which virus caused their illness, while the precise virus behind most cases of chronic fatigue is unknown, Nath said.

Advocates of patients with long COVID want to ensure that future research — including $1.15 billion in targeted funding from the NIH — benefits all patients with chronic, post-viral diseases.

"Anything that shows promise in long COVID will be immediately trialed in ME/CFS," said Jarred Younger, director of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama-Birmingham.

Patients with chronic fatigue syndrome have felt a kinship with long COVID patients, and vice versa, not just because they experience the same baffling symptoms, but also because both have struggled to obtain compassionate, appropriate care, said Nichols, vice president of Body Politic, an advocacy group for people with long COVID and other chronic or disabling conditions.

"There is a lot of frustration about being written off by the medical community, being told that it's all in one's head, that they just need to see a psychiatrist or go to the gym," said Dr. David Systrom, a pulmonary and critical care physician at Brigham and Women's Hospital in Boston.

That sort of ignorance seems to be declining, largely because of increasing awareness about long COVID, said Emily Taylor, vice president of advocacy and engagement at Solve M.E., an advocacy group for people with post-infectious chronic illnesses. Although some doctors still refuse to believe long COVID is a real disease, "they're being drowned out by the patient voices," Taylor said.

A new study from the National Institutes of Health, called RECOVER (Researching COVID to Enhance Recovery), is enrolling 15,000 people with long COVID and a comparison group of nearly 3,000 others who haven't had COVID.

"In a very dark cloud," Nichols said, "a silver lining coming out of long COVID is that we've been forced to acknowledge how real and serious these conditions are."

Liz Szabo: lszabo@kff.org, @LizSzabo