A lot of the NIH-funded analysis on lengthy COVID has centered on observing and understanding the illness. Some sufferers and docs say the analysis ought to pivot towards discovering new therapies and medicines.
ASMA KHALID, HOST:
This month, the Nationwide Institutes of Well being introduced it is investing $300 million in analysis therapies for lengthy COVID. In complete, the company has directed $1.8 billion in the direction of finding out the illness. Many sufferers say all that cash and analysis nonetheless has not turned up any new therapies. Sarah Boden reviews.
SARAH BODEN, BYLINE: Erica Hayes lives north of Pittsburgh, and she or he’s considered one of an estimated 17 million American adults with lengthy COVID. Earlier than she obtained sick, Hayes created apps and web sites. However the previous couple of years, she’s totally on the sofa with an enormous field of meds close by.
ERICA HAYES: So I simply have a handful that I want to absorb the morning, some at dinner and a few at evening.
BODEN: And it isn’t simply the fatigue. It is the hives and the mind fog. Her heartbeat is erratic, however her blood stress is simply too low. After which there are the migraines.
HAYES: I is perhaps out. Oh, thank God. I’ve yet another migraine medication (laughter). I simply pulled out, like, 5 empty ones and was like, oh, my God, no (laughter).
BODEN: Hayes has plenty of drugs for her signs however nothing for the general illness. And that is why some sufferers argue that the NIH must fund extra medical trials with a purpose to carry new medicine to market, medicine that particularly assist with lengthy COVID. So it is excellent news concerning the 300 million. However…
MEIGHAN STONE: It is nonetheless solely a down fee in the direction of what it should take to actually remedy lengthy COVID for hundreds of thousands of Individuals.
BODEN: Meighan Stone is the chief director of the Lengthy COVID Marketing campaign. And she or he says till not too long ago, the NIH hasn’t been funding the fitting research. As an alternative, the cash has principally gone to analysis issues like how lengthy COVID impacts lung perform or who will get sick and with what signs. In different phrases, she says, the NIH has been extra concerned with how persons are struggling and never find methods to cease the struggling.
STONE: Sufferers have misplaced over 4 years already, you already know, ready for any kind of remedy, any kind of customary of care, any kind of FDA-approved medicine for lengthy COVID. So there actually is a burden to make up this misplaced time now.
BODEN: The NIH advised NPR that it acknowledges the urgency find therapies. However to try this, there must be an understanding of the organic mechanisms which might be making individuals sick, and that is actually arduous to do with postinfectious circumstances. Or as New York College’s Dr. Leora Horwitz places it, good science takes time.
LEORA HORWITZ: We want the symptom and lived expertise knowledge from our sufferers so we all know what the outcomes are. What are we attempting to deal with?
BODEN: Horwitz obtained analysis cash from the NIH to check how lengthy COVID impacts individuals of various ages and ethnicities. She mentioned, with out that data, medical trials for brand new medicine won’t be protected and will waste time.
HORWITZ: I additionally will remind you that we’re solely three, 4 years into this pandemic for most individuals. We have been spending way more cash than this yearly for 30, 40, you already know, years on different circumstances.
BODEN: Docs say they’re additionally looking forward to the NIH to fund extra medical trials. Dr. Michael Brode treats lengthy COVID at UT Well being Austin, and he prescribes sufferers off-label drugs that typically assist. Off label means these medicine have been authorized by the FDA for different sicknesses, however not lengthy COVID. So usually, insurance coverage will not cowl it.
MICHAEL BRODE: I am on this horrible place of I do not need to, you already know, hype up a remedy that’s nonetheless experimental, however I additionally do not need to cover it.
BODEN: Which means his sufferers should determine whether or not to lay our a fortune on one thing that may not work.
BRODE: Sufferers who are available are simply elevating their hand and saying, I need to take part in science. We now have no lack of volunteers. We simply have a scarcity of alternatives.
BODEN: Erica Hayes says she’d undoubtedly volunteer for an experimental drug trial. For now, although, she focuses on what she will do, like having dinner along with her household.
HAYES: So as to not be completely depressing, you must take a look at that stuff.
BODEN: On the similar time, she does not need to spend the remainder of her life on a sofa.
For NPR Information, I am Sarah Boden.
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