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Advocates push for greater investment in long COVID research at Senate hearing


On this day four years ago, scientists at the CDC discovered the first case of COVID-19 in the United States.


NOEL KING: A resident of Washington state in the Seattle area is infected.

DETROW: At that point, the new virus and the illness that caused were a mystery, and as the years have gone on, we have learned more and more. But one of the biggest remaining unknowns is long COVID, that constellation of symptoms that plagues some people but not others long after an infection. So where do things stand with long COVID now? That was the topic of a Senate hearing held on Thursday. NPR health reporter Will Stone covers long COVID and joins us now. Hey, Will.


DETROW: And before we get into that hearing, you're based in Seattle, and you were on the ground covering those very early first known cases of COVID, right?

STONE: I was. You know, many of us have our first COVID memories, that moment when it suddenly became very real. For me, it was rushing to the Washington Public Health Laboratory and sitting there. No one was wearing masks yet, and the governor and health officials talked about this first case. And if you recall, it wouldn't be until later in February that we actually realized there were more cases in Washington and elsewhere in the country that had no connection to overseas travel.

DETROW: Yeah. Yeah. And since then, you've been covering long COVID for years now. You were watching this recent Senate hearing. What stood out to you?

STONE: More than anything, I would say the very fact that this took place, that it was well attended, senators were engaged - that visibility was a big deal. Many of those who have long COVID, they've been ill for months, even years. Their lives have been upended, and they feel forgotten. I'm thinking about people like Rachel Beale, who's had long COVID for almost three years. She lives in Virginia and spoke at the hearing.


RACHEL BEALE: I had a very full life before I got sick. Long COVID has affected every part of my life. Now I wake up every day feeling tired, nauseous and dizzy. I immediately start planning when I can lay down again.

STONE: And frankly, Scott, this kind of story is pretty common in the world of long Covid, so it was significant that Senator Bernie Sanders kicked off this hearing by calling long COVID a crisis.

DETROW: How far along are scientists in understanding this illness at this point?

STONE: Well, to put it simply, they still don't know the underlying cause of this illness, and to be fair, this is complex, painstaking work. Lots of scientists are working on it, and in fact, no one really thinks this is just one illness. There are very likely different causes in different people, and in the past year, there have been some meaningful advances in the science of findings related to changes in hormones, evidence of a chronic viral infection, immune dysregulation, a buildup of tiny blood clots. There are lots of different fronts here. That said, there are still no validated treatments for the condition, and this is a point Dr. Ziyad Al-Aly made at the hearing. He's at Washington University in Saint Louis.


ZIYAD AL-ALY: This must change. We really need to change this. It's not beyond the might and the prowess of American medicine to solve this problem.

STONE: He wants to see the might and prowess of American medicine, which, you know, after all, got us those vaccines very quickly, go toward long COVID. And basically, the message from scientists is that there need to be more rigorous clinical trials testing different treatments.

DETROW: Again, we're talking about a Senate hearing here. So remind us what the role of the federal government is in all of this.

STONE: Yeah. I'd say, number one, it's resources. The patient advocates and researchers want to see more money and coordination coming from the government. Take a listen to this exchange between Senator Bernie Sanders and the panel of doctors and scientists.


BERNIE SANDERS: I'm assuming that all of you believe that the federal government has got to play a much more active role with substantial sums of money for research, development, clinical trials, etc. Is that...

UNIDENTIFIED PERSON #1: Absolutely, yes.


SANDERS: All right.

STONE: Now, I will say Congress did allocate more than a billion dollars for long COVID research. That supported a huge initiative called RECOVER, but there has been growing criticism about how that money was spent, that it hasn't led to meaningful breakthroughs. Earlier this month, before the hearing, I spoke to Dr. Admiral Rachel Levine about these concerns. Levine is assistant secretary for health at the Department of Health and Human Services.

RACHEL LEVINE: I want to emphasize that there is a lot of money going for research. As the NIH has pointed out, that money has been allocated, but the research continues.

STONE: There was some new funding announced by the National Institutes of Health, the NIH, recently. But, you know, patient advocates say a problem of this magnitude doesn't get solved without billions of dollars more in funding.

DETROW: Is there a big-picture way to frame how patients are doing, this many years in?

STONE: Scott, I'll say the testimony really underscored just how hard it is to navigate the health care system with this illness. Many doctors aren't familiar with it. Some patients still aren't believed. Long COVID clinics can be hard to get into. And doctors, they can treat symptoms, but as we said earlier, there are no approved treatments. So overall, there's a sense that if things don't change, it could take a long time for scientists to get to the bottom of this and for patients to get the care they need.

DETROW: That's NPR's Will Stone. Thanks so much.

STONE: Thank you. 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.

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