ASMA KHALID, HOST:
This month, the National Institutes of Health announced it's investing $300 million in research treatments for long COVID. In total, the agency has directed $1.8 billion towards studying the disease. Many patients say all that money and research still has not turned up any new therapies. Sarah Boden reports.
SARAH BODEN, BYLINE: Erica Hayes lives north of Pittsburgh, and she's one of an estimated 17 million American adults with long COVID. Before she got sick, Hayes created apps and websites. But the last few years, she's mostly on the couch with a big box of meds nearby.
ERICA HAYES: So I just have a handful that I need to take in the morning, some at dinner and some at night.
BODEN: And it's not just the fatigue. It's the hives and the brain fog. Her heartbeat is erratic, but her blood pressure is too low. And then there are the migraines.
HAYES: I might be out. Oh, thank God. I have one more migraine medicine (laughter). I just pulled out, like, five empty ones and was like, oh, my God, no (laughter).
BODEN: Hayes has lots of medications for her symptoms but nothing for the overall disease. And that's why some patients argue that the NIH needs to fund more clinical trials in order to bring new drugs to market, drugs that specifically help with long COVID. So it's good news about the 300 million. But...
MEIGHAN STONE: It's still only a down payment towards what it's going to take to truly solve long COVID for millions of Americans.
BODEN: Meighan Stone is the executive director of the Long COVID Campaign. And she says until recently, the NIH hasn't been funding the right studies. Instead, the money has mostly gone to research things like how long COVID affects lung function or who gets sick and with what symptoms. In other words, she says, the NIH has been more interested in how people are suffering and not in finding ways to stop the suffering.
STONE: Patients have lost over four years already, you know, waiting for any sort of treatment, any sort of standard of care, any sort of FDA-approved drugs for long COVID. So there really is a burden to make up this lost time now.
BODEN: The NIH told NPR 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, and that's really hard to do with postinfectious conditions. Or as New York University's Dr. Leora Horwitz puts it, good science takes time.
LEORA HORWITZ: We need the symptom and lived experience data from our patients so we know what the outcomes are. What are we trying to treat?
BODEN: Horwitz got research money from the NIH to study how long COVID affects people of different ages and ethnicities. She said, without that knowledge, clinical trials for new drugs might not be safe and could waste time.
HORWITZ: I also will remind you that we're only three, four years into this pandemic for most people. We've been spending much more money than this yearly for 30, 40, you know, years on other conditions.
BODEN: Doctors say they're also eager for the NIH to fund more clinical trials. Dr. Michael Brode treats long COVID at UT Health Austin, and he prescribes patients off-label medications that sometimes help. Off label means those drugs have been approved by the FDA for other illnesses, but not long COVID. So often, insurance won't cover it.
MICHAEL BRODE: I'm in this terrible position of I don't want to, you know, hype up a treatment that is still experimental, but I also don't want to hide it.
BODEN: That means his patients must decide whether to spend a fortune on something that might not work.
BRODE: Patients who come in are just raising their hand and saying, I want to participate in science. We have no lack of volunteers. We just have a lack of opportunities.
BODEN: Erica Hayes says she'd definitely volunteer for an experimental drug trial. For now, though, she focuses on what she can do, like having dinner with her family.
HAYES: In order not to be absolutely miserable, you have to look at that stuff.
BODEN: At the same time, she doesn't want to spend the rest of her life on a couch.
For NPR News, I'm Sarah Boden. Transcript provided by NPR, Copyright NPR.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.
