Desperate COVID long-haulers turn to costly, unproven treatments
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.
Monthslong 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 DavisDoneghy, 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 Ms. Davis-Doneghy, whose treatment regimen has ranged fromacupuncture and Botox tonerve-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 ofpotentially 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% 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 and 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 symptoms, 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 overthesupplements 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 atunderstanding 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.