A lot of the NIH-funded analysis on lengthy COVID has targeted 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 direction of learning the illness. Many sufferers say all that cash and analysis nonetheless has not turned up any new therapies. Sarah Boden studies.
SARAH BODEN, BYLINE: Erica Hayes lives north of Pittsburgh, and he or she’s one in every of an estimated 17 million American adults with lengthy COVID. Earlier than she acquired sick, Hayes created apps and web sites. However the previous few 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 soak up the morning, some at dinner and a few at evening.
BODEN: And it is not simply the fatigue. It is the hives and the mind fog. Her heartbeat is erratic, however her blood strain is just too low. After which there are the migraines.
HAYES: I is likely to be out. Oh, thank God. I’ve another migraine medication (laughter). I simply pulled out, like, 5 empty ones and was like, oh, my God, no (laughter).
BODEN: Hayes has a lot 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 in an effort to convey new medication to market, medication 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 direction of what it will take to really 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 lately, the NIH hasn’t been funding the precise research. As a substitute, 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 fascinated by how individuals are struggling and never to find methods to cease the struggling.
STONE: Sufferers have misplaced over 4 years already, you realize, ready for any kind of therapy, any kind of customary of care, any kind of FDA-approved medication for lengthy COVID. So there actually is a burden to make up this misplaced time now.
BODEN: The NIH informed NPR that it acknowledges the urgency to find therapies. However to do this, there must be an understanding of the organic mechanisms which are making folks sick, and that is actually arduous to do with postinfectious situations. Or as New York College’s Dr. Leora Horwitz places it, good science takes time.
LEORA HORWITZ: We’d like the symptom and lived expertise information from our sufferers so we all know what the outcomes are. What are we attempting to deal with?
BODEN: Horwitz acquired analysis cash from the NIH to review how lengthy COVID impacts folks of various ages and ethnicities. She stated, with out that information, medical trials for brand new medication may not 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 far more cash than this yearly for 30, 40, you realize, years on different situations.
BODEN: Docs say they’re additionally anticipating 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 medication have been authorised 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 wish to, you realize, hype up a therapy that’s nonetheless experimental, however I additionally do not wish to disguise it.
BODEN: Which means his sufferers should resolve whether or not to lay our a fortune on one thing which may not work.
BRODE: Sufferers who are available are simply elevating their hand and saying, I wish to take part in science. We’ve got 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 together with her household.
HAYES: So as to not be completely depressing, you must have a look at that stuff.
BODEN: On the similar time, she does not wish to spend the remainder of her life on a sofa.
For NPR Information, I am Sarah Boden.
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