A lot of the NIH-funded analysis on lengthy COVID has centered on observing and understanding the illness. Some sufferers and medical doctors say the analysis ought to pivot towards discovering new remedies and medicines.
ASMA KHALID, HOST:
This month, the Nationwide Institutes of Well being introduced it is investing $300 million in analysis remedies for lengthy COVID. In whole, the company has directed $1.8 billion in the direction of learning the illness. Many sufferers say all that cash and analysis nonetheless has not turned up any new therapies. Sarah Boden experiences.
SARAH BODEN, BYLINE: Erica Hayes lives north of Pittsburgh, and he or she’s one in all an estimated 17 million American adults with lengthy COVID. Earlier than she bought sick, Hayes created apps and web sites. However the previous few years, she’s totally on the sofa with a giant field of meds close by.
ERICA HAYES: So I simply have a handful that I would like to absorb the morning, some at dinner and a few at night time.
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 simply too low. After which there are the migraines.
HAYES: I could be 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 a number of medicines for her signs however nothing for the general illness. And that is why some sufferers argue that the NIH must fund extra medical trials to be able to convey 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’ll take to actually clear up lengthy COVID for thousands and 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 appropriate research. As an alternative, the cash has largely 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 focused on how individuals are struggling and never find methods to cease the struggling.
STONE: Sufferers have misplaced over 4 years already, you recognize, ready for any type of remedy, any type of customary of care, any type 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 remedies. However to do this, there must be an understanding of the organic mechanisms which are 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 bought analysis cash from the NIH to review how lengthy COVID impacts individuals of various ages and ethnicities. She stated, with out that information, medical trials for brand new medicine 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 recognize, years on different circumstances.
BODEN: Medical doctors say they’re additionally longing for the NIH to fund extra medical trials. Dr. Michael Brode treats lengthy COVID at UT Well being Austin, and he prescribes sufferers off-label medicines that typically assist. Off label means these medicine have been accredited by the FDA for different diseases, however not lengthy COVID. So typically, insurance coverage will not cowl it.
MICHAEL BRODE: I am on this horrible place of I do not need to, you recognize, hype up a remedy that’s nonetheless experimental, however I additionally do not need to conceal it.
BODEN: Meaning his sufferers should determine 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 need to take part in science. We’ve no lack of volunteers. We simply have an absence 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 would not need to spend the remainder of her life on a sofa.
For NPR Information, I am Sarah Boden.
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