NPR:
'Scientists are making progress in better understanding Long COVID'
'Scientists have made progress in understanding Long COVID over the last five years. Patient advocates hope that research will continue under the Trump administration'
Scott: "Long COVID can be debilitating for many people. Are scientists any closer to understanding?"
Will Stone: "They are. Researchers have coalesced around a handful of explanations. There seem to be multiple underlying drivers of illness depending on the patient. One big focus has been the idea of viral persistence, that people never fully clear the infection. But there are others related to immune dysfunction, blood clots, the reactivation of other viruses. These could ultimately trigger symptoms like brain fog, like fatigue, shortness of breath, something called post-exertional malaise.
The challenge here remains translating some of these insights into treatment. There are still no approved drugs for Long COVID. The approach is often to manage symptoms and try to improve quality of life. And what are the challenges in coming up with treatment? It comes down to clinical trials. There just aren't enough of them. A few years ago, there were a handful looking at, drugs, Dr. Michael Peluso told me by his count there are now about 50, including some that Peluso is involved in at the UCSF, but he says the reality is we just need a lot more for."
Peluso: "There are dozens of existing drugs that should be tested. We have drugs that can target almost every single one of the different mechanisms we think might be contributing to Long COVID. But so far, we've launched way too few trials to actually do that with intense effort. And Scott, one of the major barriers here is that drug makers are still on the sidelines, to some extent, over and over again. The reason is, there's not a reliable biological measurement of the condition, a biomarker that can be tracked across multiple trials...We know how many people are infected. That's hard to pin down. Research, including CDC data, has found about 18 million adults in the US have long COVID....
Here's what Hannah Davis told me, she has Long COVID herself, and co founded an advocacy group called the Patient-Led Research Collaborative.
Hannah: "It has been downplayed. We have seen so much Long COVID In the last year...What are you hearing from patients? More resources, more funding. The federal government has funded Long COVID research through its RECOVER Initiative. Last year, an additional $660 million was appropriated that's to be spent over the next four years, including on clinical trials. Now, obviously, there's huge uncertainty about federal funding for scientific research in general under the Trump administration. I spoke to Megan Stone about this. She's a patient and directs the Long COVID Campaign. Stone has been in DC, lobbying Senators and the administration to, among other things, to protect those funds from any cuts. Actually, this past week, she was at the confirmation hearing for Trump's pick to lead the National Institutes of Health, and she managed to get a moment with him afterwards.
Meighan: "Afterwards, he said to me, we're going do the research to find a solution to this. I hope so. If the administration doesn't meet the patient community, then we will keep calling for action the same way that we did under President Biden. Regardless of party or political position, Long COVID patients have been failed by our leaders."
Will: "...Stone says, Long COVID patients just don't have the luxury to sit this out over the next four years..."