COVID long-haulers turn to unproven treatments
But patients’ health could be harmed, and choices can be pricey
For the burgeoning population of COVID long-haulers, there is an abundance of new treatment options: Specially formulated nutraceuticals imported from India that promise to “get you life back from COVID.” Pure oxygen delivered in a pressurized chamber. And, if time and money are no obstacle, a process known as “blood washing” that’s available in Cyprus, or $25,000 stem cell treatments in the Cayman Islands.
Months-long waits at longCOVID clinics combined with the sluggish pace of research have left vulnerable patients clamoring for immediate care as manufacturers bring novel remedies to market, often with little data behind them.
“I have tried, I would say, as many different things as anyone could do in my situation,” said Donna Davis-Doneghy, a 62-year-old accountant with Hearthside Food Solutions in London, Ky., who has been tormented by headaches since coming down with COVID in November 2020.
“People will say to me, ‘Here’s a phone number,’ and off I go chasing something different,” said Davis-Doneghy, whose treatment regimen has ranged from acupuncture and Botox to nerve-block injections and vitamin infusions.
Long COVID has taken to new heights a medical conflict that shows up with cancer and other dire diagnoses: the tension between the desire for evidence and the pressing needs of patients who are suffering. In their rush for relief, patients are turning to unproven treatments, putting them at risk of potentially harmful health effects as well as having their hopes dashed and their wallets emptied. Doctors often follow the practice of prescribing drugs off-label, not for the purpose the Food and Drug Administration originally approved them for.
“You want to protect people from charlatans,” said Harlan Krumholz, a professor of medicine at the Yale School of Medicine. “We need to resist the temptation to adopt tests and treatments without sufficient evidence to justify their use.”
But until researchers discover the mechanism — or, more likely, mechanisms — that cause long COVID, clinicians are having to rely on their experience treating other illnesses.
“We’re kind of stuck,” said Michelle Haddad, a neuropsychologist who runs a long-COVID clinic at Emory Rehabilitation Hospital in Atlanta. “I can define areas where you have impairments and how impaired you are. I can tell you what works in other, similar conditions. But I don’t have a magic pill.”
The scale of the problem — and opportunities for profiteering — are increasing as the number of Americans reporting long-lasting symptoms ramps up to as many as 15 million adults. Data released this summer by the Centers for Disease Control and Prevention suggests that almost 15 percent of the population has had long COVID, or symptoms that lasted three months or longer after the acute infection.
Many long-haulers describe being devastated by disabilities that range from fatigue to brain fog to body-wracking tremors. Facing disbelief from their families and physicians, and frustrated by the slow pace of science, they are turning to social media to share ideas for relief.
While some patients report getting insurance coverage for the treatment of some symp
toms, such as migraines, many end up spending thousands of dollars, out of pocket. Robert Harris, a 48-year-old veteran in Texas, estimates he has paid $25,000 for treatments, from over-the-counter supplements to the horse dewormer ivermectin and hyperbaric oxygen. “I can’t figure out what research is being done, what treatments have been approved,” he said.
The $1.15 billion Recover program, awarded nearly two years ago to the National Institutes of Health, is aimed at understanding the biological basis of long COVID. Establishing the safety and efficacy of potential treatments involves a further step — setting up randomized controlled trials. Although NIH recently announced its intent to investigate the potential impact of the antiviral Paxlovid, results are not expected until 2024, reinforcing some scientists’ argument for a more agile research model to match the urgency of the moment.
“Government-sponsored and government-funded mechanisms are designed for incremental innovation — for steady and safe discoveries,” said David Putrino, director of rehabilitation innovation for Mount Sinai Health System in New York.
Under the swiftly changing circumstances of the pandemic, smaller research teams, advocacy groups and private companies with a variety of standards have stepped in — often without robust scientific evidence that the products actually work.
“We are the ETSY of long COVID — DIY but giving you something the establishment can’t,” tweeted Ram Yogendra, an anesthesiologist with the California company IncellDx, referring to the company’s do-ityourself approach, modeled on the online craftsmanship marketplace. IncellDx purports to have developed a diagnostic blood test for long COVID.
Using machine learning to identify what is unusual in longhaulers’ blood, IncellDx claims to have found an immune signature or “cytokine profile” for the condition. The company, which has received a patent for using the HIV drug maraviroc to treat coronaviruses, has published three studies, enrolling more than 700 patients.
Krumholz, the Yale professor, said immune signatures are likely to become important for diagnosis and treatment. But after reviewing the data on the IncellDx website, he warned about the dangers of researchers rushing to adopt tests before the evidence is sufficient. “The evidentiary standards need to be much higher and the transparency about the science much greater than we have today to justify widespread use,” he said.
The $415 diagnostic test has been used by about 10,000 people, creating a “tremendous database,” according to Bruce Patterson, the former Stanford virologist who leads the company. The results, Patterson said, can be used to inform personalized treatment protocols typically administered by the patients’ primary care providers. A company spokeswoman said many long-haulers pay an additional $250 for a follow-up consultation and buy additional tests to check how the therapy is working. She said the company recognizes that the data need to “evolve” and that IncellDX is helping people in the meantime.
Patterson, who said he is working on contracts for clinical trials of a “drug combination that we think works,” said it is up to patients and their doctors to decide how to proceed with treatment. “We do what clinical pathologists should do: ‘Here is a test report, you treat accordingly,’ ” he said. Company doctors are available to offer guidance, Patterson said.
But Alba Azola, a physical medicine and rehabilitation specialist at Johns Hopkins Medicine, said she has treated patients who report having spent hundreds of dollars for the tests and then don’t know what to make of the results.
“They bring it to me, like, ‘Look at this,’ ” Azola said. “And I’m, ‘I don’t know what to do with that.’ ”
In the meantime, patients continue their own research, through online resources such as Twitter.
“It’s my social life, my family, my research library,” said Molly Gordon, a 69-year-old executive coach in Washington state who gradually pieced together a selfdiagnosis of mast cell activation syndrome — a condition akin to allergic reactions — that she believes came from long COVID. Gordon said she is putting about $500 a month of her retirement savings toward supplements and cannabis.
Those networks have turned long-COVID care into an international free-for-all, as patients search for therapies overseas, often with little idea of the regulatory oversight — or lack thereof.
Laura Wright, 45, a reflexologist in England, joined Twitter to glean information from fellow sufferers around the world about how to combat the fatigue that has plagued her since she came down with COVID a year ago. Wright said she tried hyperbaric oxygen and began taking “every supplement under the sun and adding new ones every month,” including garlic, hawthorn, B-12 and magnesium, until she began wondering whether they were doing her more harm than good.
She went cold turkey. With one exception: Boluoke.
Wright has pinned her hopes on the earthworm extract that is thought to promote circulatory health. A bottle of 30 capsules, which she imports from Canada, costs about $55.
“If I can get back to working again, then it will be worth it,” Wright said.