Millions of Americans grapple with the debilitating effects of long COVID, while U.S. research efforts, despite significant funding, have yet to deliver effective treatments. Patient advocates criticize the slow pace and lack of focus on patient needs, urging the National Institutes of Health to prioritize solutions for this widespread public health crisis.
Along with claiming the lives of 1.2 million Americans, the COVID-19 pandemic has been described as a mass disabling event. Estimates vary, but the CDC puts it at 17 million adults. Erica Hayes holds a box where she keeps the medical supplies she needs to manage her long-covid symptoms, which include chronic fatigue, an irregular heart rate, low blood pressure, hives, migraines, and internal tremors.
Hayes is too sick to work, so she has spent much of the last four years sitting on her beige couch, often curled up under an electric blanket. 'My blood flow now sucks, so my hands and my feet are freezing. Even if I’m sweating, my toes are cold,' says Hayes, who lives in Western Pennsylvania. She misses feeling well enough to play with her 9-year-old son or attend her 17-year-old son’s baseball games. Hayes is one of millions of Americans who suffer from long COVID. Depending on the patient, the condition can rob someone of energy, scramble the autonomic nervous system, or fog their memory, among many other additions to the brain fog and chronic fatigue, Hayes’ constellation of symptoms includes frequent hives and migraines. Also, her tongue is constantly swollen and dry. 'I’ve had multiple doctors look at it and tell me they don’t know what’s going on,’ Hayes said about her tongue. Estimates of the condition’s prevalence vary considerably, depending on how researchers define long COVID in a given study, but the Centers for Disease Control and Prevention puts it at 17 million adults. Despite long COVID’s vast reach, the federal government’s investment in researching the disease — to the tune of $1.15 billion as of December — has so far failed to bring any new treatments to market. This disappoints and angers the patient community, who say the National Institutes of Health should focus on ways to stop their suffering instead of simply trying to understand why they’re suffering. 'It’s unconscionable that more than four years since this began, we still don’t have one FDA-approved drug,’ said Patient Voices for Long COVID, a patient-led advocacy organization. Stone was among several people with long COVID who spoke at a workshop hosted by the NIH in September where patients, clinicians, and researchers discussed their priorities and frustrations around the agency’s approach to long-COVID research. Some doctors and researchers are also critical of the agency’s research initiative, called RECOVER, or Researching COVID to Enhance Recovery. Without clinical trials, physicians specializing in treating long COVID must rely on hunches to guide their clinical decisions, said 'What lacks, really, is clarity of vision and clarity of purpose,’ said Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress. The NIH has recently announced plans to initiate clinical trials for clinical trial ideas that look at potential therapies, including medications, saying its goal is “to work rapidly, collaboratively, and transparently to advance treatments for Long COVID.” This turn suggests the NIH has begun to respond to patients. This has stirred cautious optimism among those who say that the agency’s approach to long COVID has lacked urgency in the search for effective treatments. Stone calls this $300 million a down payment. She warns it’s going to take a lot more money to help people like Hayes regain some degree of health. 'There really is a burden to make up this lost time now,’ Stone said. The NIH told KFF Health News and NPR via email that it recognizes the urgency in finding treatments. But to do that, there needs to be an understanding of the biological mechanisms that are making people sick, which is difficult to do with post-infectious conditions. And the initiative has funded more than 40 pathobiology studies, which focus on the basic cellular and molecular mechanisms of long COVID. This research has led to crucial insights on the risk factors for developing long COVID and on understanding how the disease interacts with preexisting conditions. 'This is an exceedingly complicated’ illness that appears to affect nearly every organ system, she said. This makes it more difficult to study than many other diseases. Because long COVID harms the body in so many ways, with widely variable symptoms, it’s harder to identify precise targets for treatment. 'I also will remind you that we’re only three, four years into this pandemic for most people,’ Horwitz said. 'We’ve been spending much more money than this, yearly, for 30, 40 years on other conditions.’ RECOVER has received $300 million out of a projected $1 billion allocation. RECOVER awarded nearly $100 million of RECOVER funds in 2021, which the institution is using to spearhead the collection of data and biospecimens from up to 40,000 patients. Horwitz said nearly 30,000 are enrolled so fa
LONG COVID NATIONAL INSTITUTES OF HEALTH RECOVER INITIATIVE PATIENT ADVOCACY TREATMENT RESEARCH PUBLIC HEALTH CRISIS
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