Long Covid Archives - ��ýҕ�l Health News

Long-Covid Patients Are Frustrated That Federal Research Hasn’t Found New Treatments

Sarah Boden — Wed, 22 Jan 2025 10:00:00 +0000

Erica Hayes, 40, has not felt healthy since November 2020 when she first fell ill with covid.

Hayes is too sick to work, so she has spent much of the last four years sitting on her beige couch, often curled up under an electric blanket.

“My blood flow now sucks, so my hands and my feet are freezing. Even if I’m sweating, my toes are cold,” , who lives in Western Pennsylvania. She misses feeling well enough to play with her 9-year-old son or attend her 17-year-old son’s baseball games.

Along with claiming the lives of 1.2 million Americans, the covid-19 pandemic has been described as a . Hayes is one of millions of Americans who suffer from long covid. Depending on the patient, the condition can rob someone of energy, scramble the autonomic nervous system, or fog their memory, among many other symptoms.In addition to the brain fog and chronic fatigue, Hayes’ constellation of symptoms includes frequent hives and migraines. Also, her tongue is constantly swollen and dry.

“I’ve had multiple doctors look at it and tell me they don’t know what’s going on,” Hayes said about her tongue.��

Estimates of prevalence range considerably, depending on how researchers define long covid in a given study, but the Centers for Disease Control and Prevention puts it at 17 million adults.

Despite long covid’s vast reach, the federal government’s investment in researching the disease — to the tune of $1.15 billion as of December — has so far failed to bring any new treatments to market.��

This disappoints and angers the patient community, who say the National Institutes of Health should focus on ways to stop their suffering instead of simply trying to understand why they’re suffering.

“It’s unconscionable that more than four years since this began, we still don’t have one FDA-approved drug,” said , executive director of the , a patient-led advocacy organization. Stone was among several people with long covid who spoke at a workshop hosted by the NIH in September where patients, clinicians, and researchers discussed their priorities and frustrations around the agency’s approach to long-covid research.

Some doctors and researchers are also critical of the agency’s research initiative, called RECOVER, or Researching COVID to Enhance Recovery. Without clinical trials, physicians specializing in treating long covid must rely on hunches to guide their clinical decisions, said , chief of research and development with the .

“What [RECOVER] lacks, really, is clarity of vision and clarity of purpose,” said Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.

Now the NIH is starting to determine how to allocate an additional of funding for long-covid research, of which is earmarked for clinical trials. These funds will be allocated over the next four years.At the end of October, RECOVER for clinical trial ideas that look at potential therapies, including medications, saying its goal is “to work rapidly, collaboratively, and transparently to advance treatments for Long COVID.”

This turn suggests the NIH has begun to respond to patients. This has stirred cautious optimism among those who say that the agency’s approach to long covid has lacked urgency in the search for effective treatments.Stone calls this $300 million a down payment. She warns it’s going to take a lot more money to help people like Hayes regain some degree of health.“There really is a burden to make up this lost time now,” Stone said.

The NIH told ��ýҕ�l Health News and NPR via email that it recognizes the urgency in finding treatments. But to do that, there needs to be an understanding of the biological mechanisms that are making people sick, which is difficult to do with post-infectious conditions.

That’s why it has funded research into how long covid affects , or trying to understand why people are afflicted with the condition.

Good Science Takes Time

In December 2020, for the NIH to launch RECOVER, raising hopes in the long-covid patient community.

Then-NIH Director explained that was to better understand long covid as a disease and that clinical trials of potential treatments would come later.

According to RECOVER’s website, it has funded to test the safety and effectiveness of an experimental treatment or intervention. Just one of those trials has .

On the other hand, RECOVER has supported more than 200 observational studies, such as research on how long covid and on which symptoms are . And the initiative has funded more than 40 pathobiology studies, which focus on the basic cellular and molecular mechanisms of long covid.

RECOVER’s this research has led to crucial insights on the risk factors for developing long covid and on understanding how the disease interacts with preexisting conditions.

It notes that observational studies are important in helping scientists to design and launch evidence-based clinical trials.

Good science takes time, said , the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University. And long covid is an “exceedingly complicated” illness that appears to affect nearly every organ system, she said.��

This makes it more difficult to study than many other diseases. Because long covid harms the body in so many ways, with widely variable symptoms, it’s harder to identify precise targets for treatment.

“I also will remind you that we’re only three, four years into this pandemic for most people,” Horwitz said. “We’ve been spending much more money than this, yearly, for 30, 40 years on other conditions.”

NYU received of RECOVER funds in 2021, which the institution is using to spearhead the collection of data and biospecimens from up to 40,000 patients. Horwitz said nearly 30,000 are enrolled so far.

This , Horwitz said, supports ongoing observational research, allowing scientists to understand what is happening biologically to people who don’t recover after an initial infection — and that will help determine which clinical trials for treatments are worth undertaking.

“Simply trying treatments because they are available without any evidence about whether or why they may be effective reduces the likelihood of successful trials and may put patients at risk of harm,” she said.

Delayed Hopes or Incremental Progress?

The NIH told ��ýҕ�l Health News and NPR that patients and caregivers have been central to RECOVER from the beginning, “playing critical roles in designing studies and clinical trials, responding to surveys, serving on governance and publication groups, and guiding the initiative.”But the consensus from patient advocacy groups is that RECOVER should have done more to prioritize clinical trials from the outset. Patients also say RECOVER leadership ignored their priorities and experiences when determining which studies to fund.

RECOVER has scored some gains, said , co-director of . This includes findings on differences in long covid between adults and kids.But Davids said the NIH shouldn’t have named the initiative “RECOVER,” since it wasn’t designed as a streamlined effort to develop treatments.

“The name’s a little cruel and misleading,” he said.

RECOVER’s initial allocation of $1.15 billion probably wasn’t enough to develop a new medication to treat long covid, said co-director of the University of Pennsylvania’s .

But, he said,�� the results of preliminary clinical trials could have spurred pharmaceutical companies to fund more studies on drug development and test how existing drugs influence a patient’s immune response.

Emanuel is one of the authors of a March 2022 covid . He notes that RECOVER’s lack of focus on new treatments was a problem. “Only 15% of the budget is for clinical studies. That is a failure in itself — a failure of having the right priorities,” he told ��ýҕ�l Health News and NPR via email.

And though the NYU biobank has been impactful, Emanuel said there needs to be more focus on how existing drugs influence immune response.

He said some clinical trials that RECOVER has funded are “ridiculous,” because they’ve focused on symptom amelioration, for example to of over-the-counter medication to improve sleep. Other studies looked at non-pharmacological interventions, such as exercise and “” to help with cognitive fog.

People with long covid say this type of clinical research contributes to what many describe as the “gaslighting” they experience from doctors, who sometimes blame a patient’s symptoms on anxiety or depression, rather than acknowledging long covid as a real illness with a physiological basis.

“I’m just disgusted,” said long-covid patient Hayes. “You wouldn’t tell somebody with diabetes to breathe through it.”

, director and founder of the , said she’s even taken breaks from seeking treatment after getting fed up with being told that her symptoms were due to her diet or mental health.

“You’re at the whim of somebody who may not even understand the spectrum of long covid,” Sweeney said.

Insurance Battles Over Experimental Treatments

Since there are still no long-covid treatments approved by the Food and Drug Administration, anything a physician prescribes is classified as either experimental — for unproven treatments — or an off-label use of a drug approved for other conditions. This means patients can struggle to get insurance to cover prescriptions.

, medical director for — said he writes many appeal letters. And some people pay for their own treatment.

For example, intravenous immunoglobulin therapy, low-dose naltrexone, and hyperbaric oxygen therapy are all promising treatments, he said.

For hyperbaric oxygen, , randomized show improvements for the chronic fatigue and brain fog that often plague long-covid patients. The theory is that higher oxygen concentration and increased air pressure can help heal tissues that were damaged during a covid infection.

However, the out-of-pocket cost for a series of sessions in a hyperbaric chamber can run as much as $8,000, Brode said.

“Am I going to look a patient in the eye and say, ‘You need to spend that money for an unproven treatment’?” he said. “I don’t want to hype up a treatment that is still experimental. But I also don’t want to hide it.”

There’s a host of pharmaceuticals that have promising off-label uses for long covid, said microbiologist , president and chief scientific officer at the Massachusetts-based . For instance, she’s collaborating on a clinical study that repurposes two HIV drugs to treat long covid.

Proal said research on treatments can move forward based on what’s already understood about the disease. For instance, she said that scientists — partly due to — that some patients small amounts of viral material after a covid infection. She has not received RECOVER funds but is researching antivirals.

But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long covid — clinical trials are needed. And that requires money.

Hayes said she would definitely volunteer for an experimental drug trial. For now, though, “in order to not be absolutely miserable,” she said she focuses on what she can do, like having dinner with her family.At the same time, Hayes doesn’t want to spend the rest of her life on a beige couch.��

RECOVER’s deadline to submit research proposals for potential long-covid treatments is Feb. 1.

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What the Health? From ��ýҕ�l Health News: Congress Is Out. The Presidential Campaign Is In.

Thu, 03 Aug 2023 19:00:00 +0000

The Host

Julie Rovner ��ýҕ�l Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of ��ýҕ�l Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

Congress has left for its annual August recess, but lawmakers have a long to-do list waiting when they return — and only a handful of legislative days to fund the government before the Oct. 1 start of the new fiscal year.

Meanwhile, Republican presidential candidates who are not named Donald J. Trump are preparing for their first televised debate and making interesting promises about health care.

This week’s panelists are Julie Rovner of ��ýҕ�l Health News, Alice Miranda Ollstein of Politico, Sandhya Raman of CQ Roll Call, and Lauren Weber of The Washington Post.

Panelists

Alice Miranda Ollstein Politico Sandhya Raman CQ Roll Call Lauren Weber The Washington Post

Among the takeaways from this week’s episode:

Work has paused on Capitol Hill. Among other items of unfinished business, lawmakers returning next month will have to pass at least a short-term spending bill — or soon face a government shutdown with implications for health programs and much, much more. Authorizations are also on the agenda, with programs like community health centers on the line. But the path to passage winds through a social issues minefield, owing to conservative House Republicans who have inserted measures targeting abortion access and gender-affirming care for transgender people.
Access to women’s health care in the United States is worsening, with maternal health deserts popping up around the nation even in the years before the overturn of Roe v. Wade. Some states in particular have seen a huge decline in the number of maternal health providers, including the closures of obstetric wards. The fact that more people are living in counties with no maternal health providers is troubling news for a nation experiencing a maternal mortality crisis.
State medical boards across the country have disciplined fewer than two dozen providers reported for spreading covid-19 misinformation, according to a new investigation by The Washington Post. The paucity of punishments demonstrates how ill-equipped such boards are to address the serious problem of health misinformation.
On the 2024 presidential campaign trail, Republican candidates like Gov. Ron DeSantis of Florida are signaling that re-litigating the covid pandemic is part of their playbook — but do voters still care that strongly about vaccine mandates and business shutdowns?
And the National Institutes of Health has moved to officially study long covid, a little-understood condition that impacts the lives of many Americans.

Also this week, Rovner interviews ��ýҕ�l Health News senior correspondent Phil Galewitz, who reported the latest ��ýҕ�l Health News-NPR “Bill of the Month” installment, about how a bill that should never have been sent created headaches for one patient. If you have an outrageous medical bill you’d like to share with us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: Stat’s “,” by Annalisa Merelli.

Alice Miranda Ollstein: The Tampa Bay Times’ “,” by Emily L. Mahoney and Romy Ellenbogen.

Sandhya Raman: ��ýҕ�l Health News’ “Black Women Weigh Emerging Risks of ‘Creamy Crack’ Hair Straighteners,” by Ronnie Cohen.

Lauren Weber: Politico’s “,” by Alice Miranda Ollstein and Lauren Gardner.

Also mentioned in this week’s episode:

The Washington Post’s “,” by Lena H. Sun, Lauren Weber, and Hayden Godfrey.
Roll Call’s “,” by Lauren Clason, Ariel Cohen, Jessie Hellmann, and Sandhya Raman.
Slate’s “,” by Jennifer Neda John.
Politico’s “,” by Alice Miranda Ollstein and Megan Messerly.

click to open the transcript Transcript: Congress Is Out. The Presidential Campaign Is In.

��ýҕ�l Health News’ ‘What the Health?’Episode Title: Congress Is Out. The Presidential Campaign Is In.Episode Number: 308Published: Aug. 3, 2023

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for ��ýҕ�l Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Aug. 3, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Alice Ollstein, of Politico.

Ollstein: Good morning.

Rovner: Lauren Weber, The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Sandhya Raman, of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: Later in this episode we’ll have my interview with my ��ýҕ�l Health News colleague Phil Galewitz, who wrote the latest “Bill of the Month” for ��ýҕ�l Health News and NPR. This month’s patient never should have gotten a bill for his care, but he and his family ended up with a giant mess nonetheless. But first, this week’s news. It is officially August. Congress is gone until September, which makes it a good time to take stock of what has and hasn’t been accomplished on the health agenda and what might feasibly get done this fall, which is always shorter than you think. The biggest outstanding issue, literally and figuratively, is the spending bill for the Department of Health and Human Services. , members theoretically only have 11 legislative days before Oct. 1, when the new fiscal year begins. And if Congress doesn’t complete work on the spending bill, which has yet to come to the House or Senate floor or even get out of the House Appropriations Committee, a lot of Health and Human Services programs could shut down unless Congress passes a temporary bill to keep them open. Sandhya, right now everything kind of points to an Oct. 1 shutdown, or am I missing something?

Raman: Yeah, I think at this point we’re looking at either a shutdown or just, like, a continuing resolution, just kicking the can a little bit down the road and giving them some more time. So right before Congress left, the Senate did advance, in the Appropriations Committee, their spending bill for [the departments of] Labor, HHS, and Education. And that means that all 12 of theirs have gotten at least that far, through the Senate Appropriations Committee, but they would still need to come to the floor, and it doesn’t mean that the House is going to agree to any of that. And the House is a lot further behind in that the only markup they’ve had on the HHS bill is on the subcommittee level. It’s not even at the House Appropriations level. And you can kind of see the tea leaves in that they were trying to get the agriculture bill done before they left, which has all the FDA money in it, and they didn’t end up bringing it to the floor because they didn’t think they would have the votes to pass it. So I think that we’re going to need some time, given that I don’t think that, even though the Senate bills have been bipartisan so far, that they’re going to be eager to jump on those.

Rovner: Every year when there’s a change in leadership in either the House or the Senate, they vow, “This is the year we’re not going to do a big omnibus spending bill. We’re going to do all 12 appropriations separately, and we’re going to run them through the House and the Senate floors, and we’re going to have a conference.” And it hasn’t happened in more than 20 years now. And there’s clearly no reason to think it’s going to happen this year, right?

Ollstein: And one of the biggest sticking points: There are the fights that happen every single year over things like the Hyde Amendment, which prevents federal spending on abortion, but that has spread to almost every single appropriations bill. There are anti-abortion budget riders. There are anti-trans health care budget riders. There are all kinds of things tucked in there that Democrats say they will oppose and that the Senate bills don’t have. But, you know, you have this disconnect where there are plenty of House members who would be completely fine with a shutdown; they’ve said publicly that they think that would not be so bad.

Rovner: You have to say it wouldn’t be as bad as letting the debt ceiling get breached.

Ollstein: Right, right, right, right. Whereas Democrats are very much saying it would be horrible to have a shutdown. And so I was talking to some Democratic House members who say that people are really torn between the pressure to make a deal to keep the government open and the pressure to oppose all of these conservative budget riders. And that tension is going to really come into play in the fall.

Rovner: Yeah. Alice, you wrote a wonderful story on all the abortion fights in all these different bills, and I just had sort of deja vu to the ’90s. If you were following abortion, you had to keep track of obviously the ag bill with FDA in it, HHS bill, and the Department of Justice bill because of abortion in prisons, and the defense bill because of, you know, abortions for servicewomen. I mean, we basically had some kind of abortion fight in more than half of the appropriations bills. So we’re coming back to that right now. Well, there are also lots of programs whose authorizations expire Oct. 1. That’s not the same as the appropriations bills that we’ve just been talking about. Without appropriations, programs have to shut down, at least temporarily. Authorizations, though, can lapse as long as the programs are funded through the appropriations. But it’s still nice to, you know, get your work done on time. Some of the big programs Congress is working on include renewing authority for community health centers, for pandemic preparedness programs, for a big group of graduate medical education programs. What’s the fall outlook for those authorizations?

Raman: So I think part of it is tied into what we see with appropriations, because a lot of these programs — even if they come to an agreement, it’s likely to ride on whatever big spending bill we have next, whether that’s a continuing resolution, whether that’s an omnibus or anything like that. So if we end up seeing some sort of continuing resolution, which is looking likely, a lot of these are going to be short-term, maybe extended if they have an agreement there, which is what they traditionally do, and then something longer — the next vehicle that pops up, the next one, or sometimes they even get a one-year, even if there is agreement, just because this is what Congress does. So some of them, I think, are looking more promising than others. We’ve seen things kind of happen with some of the graduate medical education, the [National] Health Service Corps, like those have kind of come to some sort of agreement, but —

Rovner: And those are typically bipartisan programs.

Raman: Yeah, but then others are not as far along and will take time. I mean, the process to even do like the SUPPORT [for Patients and Communities] Act, which was a 2018 law that had a bunch of different opioid provisions in it, that was bipartisan, got through: I mean, we’ve been marked up in [the] Energy and Commerce [Committee] in the House, and the Senate has not done a markup; they just have a bill that has come out so far. And so getting that done before the Sept. 30 deadline is tricky. There are some that are a little bit more partisan that I think would be more difficult to get done. I mean, the has been a little bit derailed over, like, political back-and-forth over policies for transgender children. And so I think even some things that have been more easy to get across the finish line in the past are having factors that are weighing them down. So a lot of these are a question mark. Yeah.

Rovner: So that was originally a Republican program. I remember when it was created because Medicare funds most of the graduate medical education, but obviously there’s not a lot of Medicare beneficiaries who are children, so they had been left out and this is their own program. But I always get at this point to share my favorite piece of trivia about authorizations versus appropriations, which is that the federal family planning program, Title X [“ten”], has not been reauthorized since 1984. Congress has tried any number of times and has failed. It continues to get funded, but it has literally been operating without authorization for all of those years. Well, one more important authorization that’s not part of the Department of Health and Human Services but is part of health care is PEPFAR [the United States President’s Emergency Plan for AIDS Relief], the very successful international AIDS and HIV program begun under President George W. Bush 20 years ago this year. But this time around, the bipartisanly popular program is hung up over — what else? — abortion. Alice, you wrote about this. I mean, PEPFAR, this is really a Republican-backed program.

Ollstein: Yes. It was created by George W. Bush and has had bipartisan support for most of its life. It’s credited with saving the lives of tens of millions of people. Few programs can say that, of any kind. And millions of people are depending on it right now for access to medications around the world. So Republicans are saying that they won’t support reauthorizing it but they will keep it funded through appropriations, just like you were talking about, keep it sort of limping along on a one-year budget, with language restoring the Trump-era restrictions on the program. So, of course, for the entirety of the program, money has not gone to providing abortions, but this expands that and says money can’t go to any organization that, you know, uses other money to provide abortions or even an organization that gives money to another organization and that subsequent organization does abortions. And so this really has been tough for the program in the last few years. And independent experts are telling me that not reauthorizing it, yes, it wouldn’t shut down the program, but they worry it would send a signal to other countries that this is not something the U.S. is really invested in going forward and it would lead other people to cutting their contributions.

Rovner: Yeah, I mean, in addition to saving millions of lives or tens of millions of lives, this has been an important piece of international diplomacy, particularly in Africa, right?

Ollstein: Right. And that was the point Sen. [Bob] Menendez [(D-N.J.)], who had wanted a full five-year reauthorization attached to the NDAA [National Defense Authorization Act], which he said his Republican colleagues killed — he made that exact point.

Rovner: The defense authorization bill.

Ollstein: Exactly, yes. They were trying that as a workaround to get it reauthorized. And it didn’t work because of GOP opposition. But Menendez was saying, you know, this will only empower countries like China that have been trying to make inroads in Africa with philanthropic work and reduce the influence of the U.S. The geopolitics are definitely on people’s mind as well as the basic humanitarian value.

Rovner: So it’s going to be a busy fall. Well, while we are on the subject of reproductive health, the problem of getting maternal health care here in the U.S. is growing, according to a new study from the March of Dimes. We are the country that already has the worst record for maternal mortality in the developed world. Yay, us. How much worse has it gotten?

Ollstein: It’s . So in just one year, between 2019 and 2020, there was a 4% decline in the number of hospitals that have birthing services, OB [obstetrics] wards. And 4% may not sound like a lot, but it’s not evenly distributed; that’s just the national average. Some states had a nearly 25% decline. And like you said, you know, we’re already doing so much worse than other countries with maternal mortality. And this just means millions of more people than before are living in a county that has zero hospitals, zero OB-GYNs, zero maternal health care providers — and then a lot of those same places, these same states and counties, also have really high rates of chronic health conditions that are contributors to maternal mortality. And so all of this is coming as births are expected to go up because of abortion bans. This data was from before Dobbs [v. Jackson Women’s Health Organization, the 2022 Supreme Court ruling overturning the nationwide right to abortion], so we don’t know yet what’s going to happen, but the expectation is that births will go up. And at the same time, there’s just fewer care providers to meet that need.

Rovner: And we also know that in the states with bans, we’re starting to see providers either leave or not go there to train in the first place, which is just going to make the whole thing worse. This week the action is going on in a couple of Midwestern states, Indiana and Ohio, I guess both of which have bans, and one of which is in force and one of which isn’t. Where are we with Indiana and Ohio? I know it changes from hour to hour.

Ollstein: So Ohio’s ban is still enjoined, so that means abortion is still legal in Ohio. The development was about this upcoming vote, and there are two upcoming votes. This is kind of wonky, but the upcoming vote that’s happening in less than a week is whether to make ballot initiatives in general harder to pass, to raise the threshold from 50 to 60%. And that’s explicitly intended to thwart the fall vote on legalizing abortion in the state and putting something in the state constitution that supports it.

Rovner: Which, coincidentally, polls show has about like 56, 57% support, right? So 60% would make it more likely to fail.

Ollstein: Right. Right. That’s coming up. But for now, because of a court injunction, abortion remains legal and the ban is not enforced.

Rovner: And Indiana, which had a very stringent ban that was about to go into effect?

Ollstein: Sandhya, do you want to?

Raman: Oh, yeah. I was just going to add to Ohio first that, as of this morning, the voter turnout for the Ohio election next week is super high. It was, like, over 380,000 people have already cast their ballot, and that was higher than, I guess, you know, when they had, like, [a] competitive Senate primary before. And so it will definitely be something to watch. I mean, we don’t know if the voter turnout is high one way or the other, but I just thought that was really interesting. But with Indiana, their abortion ban was supposed to take effect on Tuesday and then it was halted by another lawsuit, and they were the state that was the first one to pass a post-Dobbs, new abortion ban last year. So it’s, like, another sticking point in that a lot of the bans that have gone into effect are older laws or things that have been unblocked in court.

Rovner: So, yes, it really does depend on the day. I guess I read that a bunch of clinics that had been providing abortion have stopped, even though the ban is, at least for the moment, on hold. So rather typically around the country, you literally have to go day by day to figure out what is allowed and what is not. All right. Well, let us turn now to a segment I’m calling “Myths and Disinformation” this week. Lauren, I was so glad you could join us this week because you and a couple of your colleagues at the Post have a into how doctors who were peddling bad and often dangerous information during the pandemic were called to account. Spoiler: Not a lot of them were, right?

Weber: Yeah, I was going to say spoiler alert that not a lot of them were called to account. So essentially my colleagues Lena Sun, Hayden Godfrey, and I reviewed the records from all 50 states’ various medical boards, both MD boards and osteopathic boards, to see who actually had been punished for spreading covid misinformation or for practicing in a way that is misinformation-related. And despite discovering from our various records requests over hundreds of complaints for doctors that asked patients to remove masks or told them the vaccines were full of metal or told them not to get a vaccine or a various number of the —or prescribed ivermectin or hydroxychloroquine — only 20 doctors have been disciplined, and we are three and a half years into covid. And you know, what our investigation found is something that everyone on this panel has known for quite some time. But state medical boards are historically weak, underfunded, and are very ill-equipped in the social media age, where misinformation is a deluge, to really step into that breach. And what our investigation essentially found is that they’ve really failed to stop doctors that are spreading misinformation or, you know, prescribing drugs that are not deemed the consensus around the standard of care.

Rovner: So everybody says, oh, well, this is up to medical boards in every state, and they keep doctors honest and keep them on the straight and narrow and sanction them when they do wrong things. That’s not been true for a long time. And I guess now it’s still not true, right?

Weber: Yeah, exactly. And it’s really interesting. And this came up, too, in the case in Idaho for abortion, you see a lot of misinformation folks cite free speech in their ability to practice medicine. It’s actually — you know, it makes it difficult to discipline people because it is being able to prescribe things off-label, or your medical judgment is not something people — medical boards are loath to discipline over, and for good reason. You understand why that may be, but in the case of covid, where this has continued and, you know, treatments like hydroxychloroquine or ivermectin have been deemed outside of the standard of care, it is very surprising that we’ve seen such a low number of disciplinary actions taken. It really goes to show that the boards are not equipped to kind of step into this breach as misinformation has flooded the zone.

Rovner: Well, meanwhile, abortion rights groups are , Facebook’s parent company, over its inconsistent moderation of information about abortion and reproductive health. It reminds me of some years ago when public libraries would try to limit internet search terms to keep people away from online porn but ended up barring people from searching about breast cancer because it had the word “breast” in it. So this isn’t something that’s new. In fact, going back decades, anti-abortion groups used to advertise their crisis pregnancy centers, which don’t offer abortion but sound like they do, in the yellow pages of the phone book. And kids, ask your parents what a Yellow Pages was. But social media algorithms have the ability to determine what information a lot more people see or don’t see. This one looks pretty hard to resolve. I know that, unlike Twitter, Facebook is trying here, but this is going to be difficult, yes?

Weber: Yeah, I would say it’s a really hard — you know, it’s interesting that the article in particular that you’re talking about, there were two different camps opposed that were saying abortion is killing the unborn child versus you’re killing people if they have an abortion. And both of those got sanctioned by Facebook because it had the word kill in it. And so what we’re going to see is how they come down on this information. But in a world where you see misinformation — in [Judge Matthew] Kacsmaryk’s circuit [district] court ruling, you know, it’s kind of hard to see how this is going to be resolved by Facebook. I do not envy them in this task. I don’t really know how you would come down on this and how you would comprehensively evaluate all of these posts in a fair manner that is respective of free speech. And like you said, Julie, you know, a lot of times it leads to unintended consequences when you try and restrict posts like this on all sides. And there are some smart people that are trying to advise in the correct way, but we’ll see what happens.

Rovner: Yeah, it is not easy. Speaking of mis- and disinformation and real information, we’re going to move to the campaign trail, because it’s only August of an odd-numbered year but the 2024 presidential campaign is in full swing, with the first Republican candidate debate later this month. And while health care, specifically the desire to repeal the Affordable Care Act, is far from the rallying cry for Republicans that it has been in the last couple of presidential campaigns, we are seeing some interesting stances and comments from candidates who are not named Donald Trump. We will start with the candidate who’s running second in the Republican primary polls. That would be Florida Gov. Ron DeSantis, whose campaign launch has been anything but smooth. DeSantis, perhaps looking for some publicity, raised some eyebrows last week when he suggested on a conservative podcast that, if elected, he might install Democratic presidential candidate and known anti-vaxxer Robert F. Kennedy Jr. at the CDC [Centers for Disease Control and Prevention] or the FDA. DeSantis has been trying to stake out kind of a middle ground on his vaccine position. He’s not outright anti-vax, but he doesn’t support mandates and he’s kind of hot and cold on supporting vaccines in general. I don’t see how this would actually win him love on either side. I mean, he actually said that they would sic RFK Jr. on the CDC or the FDA.

Weber: I got to say, I find it fascinating. I mean, look, RFK Jr. has a cult following. And I think if anything, it speaks to the fact that Republicans are very much anti-vaccine mandate, anti-government shutdown, all things that RFK says all the time. And DeSantis did walk it back and said he would put him on a committee because, you know, we wouldn’t want a Democrat actually running these things. But I think really what this episode shows is the salience that words like the CDC, and we’ll talk later about the FDA — you know, the American voting public cares about these things now. They know what these agencies are, and they have strong feelings. They blame them for pandemic policies. And I think it just goes to show that relitigating the pandemic and different people’s versions of how they believe the pandemic went is really going to be a constant in this political run-up to 2024.

Ollstein: While I agree with that, I also think it is maybe not as salient as DeSantis was hoping it would be. I mean, he really has formed his candidacy on his governorship during the pandemic, and it doesn’t seem to be breaking through. He’s still just miles and miles and miles behind Trump. And depending on the polls, some of these people with way less of a platform than the governor of Florida are doing quite well. And so I think that people do have strong feelings about vaccine mandates and mask mandates and school closures and all of that, but not nearly as strong as a year ago. So I think that he maybe isn’t getting the juice from saying a lot of these things that he was hoping he would.

Rovner: Well, speaking of candidates who have less of a platform and yet seem to be making inroads — long shot but picking-up-momentum candidate Vivek Ramaswamy, who actually does know something about health policy, as the founder of a biotech firm, has vowed to, quote, “expose and [to] ultimately gut” the FDA. Now, he is a former libertarian rapper, so it is not a shock that he opposes most federal regulatory entities. But I wonder how even Republican voters would feel about actually gutting the FDA. It’s one thing — Alice, you were talking about feelings about the pandemic, but the FDA obviously does a lot more things than just deal with masks and covid vaccines. I mean, is there really a Republican constituency for wiping out the federal regulatory mechanism?

Ollstein: I mean, there at least seems to be at the state level in some states. We’ve talked so much about how GOP lawmakers have voted to roll back public health powers in a bunch of states because of covid. But it’s set to have implications way beyond covid and limit public health workers’ ability to respond to foodborne outbreaks and other things — things in the water, things in the air. So you could see that skepticism and desire to strip the government of its public health powers at the federal level as well.

Rovner: And, Lauren, you’ve been looking at this at the state level, too, right, sort of the slow decline of trust in public health, or maybe not-so-slow decline of trust in public health.

Weber: Yeah. I mean, you know, I found this February, 30 states have passed laws that have rolled back public health powers. There’s litigation at the federal level that has really stripped a lot of executive power for the public health system. As we know, public health leaders on the ground have resigned, quit, or been fired in droves due to political pushback. There’s a lot of concern among the public health community and the folks that I talk to constantly that we have seen just a massive hollowing-out of the workforce that will be impossible to replace. And so I think you’re seeing, you know, kind of as we’ve talked about, how I think this is a talking point among Republican candidates, to kind of bash these government agencies because it’s something that is appealing to people that are irritated over these deals.

Raman: Like, if you look at his comments about this, does this really hold up to the scrutiny? I mean, FDA is not the one that would mandate vaccines, mandate mask-wearing. They don’t set prices. None of that is under their jurisdiction. And, you know, you can assume that he knows this given his background, but I think it just kind of goes with some of his other comments about, you know, defunding a lot of the other agencies that he’s made. So I think some of this also just banks on people maybe not knowing, you know, what falls under what bucket. And it just might be an easy punching bag to lump it in together if the people aren’t aware of what falls under CDC versus FDA or any other agency or state-level.

Rovner: And he’s one of those people that just seems very sure of himself, even when what he’s saying isn’t necessarily true. And the very-sure-of-himself part seems to appeal to voters. But I want to go back to DeSantis just one more time. But before we’re done, speaking of trying to have it both ways, DeSantis stepped into a bees’ nest on abortion, of all things. This is the governor who signed a six-week abortion ban bill in Florida, but he kind of hemmed and hawed about saying whether he would support a national abortion ban. So that won him a firm rebuke from the Susan B Anthony List, which is a pretty powerful political arm of conservative Republicans. Does DeSantis really think he can sustain a position like this, where you can really say, “We only want states to deal with this and we don’t really want it to be at the federal government”? I mean, that was sort of the Supreme Court’s argument. But I think that there’s a lot of grassroots Republicans who would like to not have to fight this state by state and would like to see a national ban.

Ollstein: Yes, the major anti-abortion groups have said that that, you know, “leave it to the states” is not an answer they will accept and they will continue to put the pressure on candidates. Their argument is that, you know, because of things like the appropriations process and because of things like access via Medicaid — [that] is a fight and access in prisons is a fight and access for — you know, their argument is the federal government is already involved in abortion, so you should support the federal government getting involved in banning abortion.

Rovner: Which is kind of true. I mean, the part about the federal government already being heavily involved in abortion.

Ollstein: Sure. Do with that what you will. But candidates keep falling into this same trap. I mean, you had Nikki Haley, who is not polling very well at the moment — she held a whole event with Susan B. Anthony List that they hyped, and she said she would lay out her plan for abortion and there were, like, no specifics whatsoever. And then the group said, “Oh, she assured us she supports a national ban,” but then she said she didn’t. And this is going to continue to be a fight. I think really Mike Pence is the one who is most firm in saying, “Yeah, I support a national ban.”

Rovner: Yeah, and he’s been consistent his entire career, when he was in the House and when he was governor.

Ollstein: He is also not polling very well, I will note.

Rovner: Yes, that’s true. Fair point. We will obviously continue to talk about things on the campaign trail as we move along the campaign trail. Well, finally this week, I want to talk about covid, which we haven’t done for a while. It is still around, and cases, while still low, are on the upswing at the moment. But the news this week is that after almost three years, the National Institutes of Health is finally acting on directions from Congress to get moving on efforts to study and treat so-called long covid, which as many as 10% of patients end up with after having the virus. The long covid community, which could be several million people, have been agitating for scientists to take their symptoms more seriously and do more work in the research realm. Now, NIH has finally created an Office of Long COVID [Research and Practice], albeit with only two full-time staffers to start with. It’s also started enrolling an estimated 24,000 people in several clinical trials to test things like a longer course of the drug Paxlovid. But patient groups say it’s still way too little for what’s a serious and growing more widespread ailment. Why is this all taking so long? I mean, we have a Democratic administration. One would think that they would be anxious to do this.

Weber: I mean, I think if you look at it, there was over a billion dollars allocated to this. I mean, I don’t know why it’s taking so long, Julie. I think a lot of advocates are asking the same question and really beating the drum around that — and especially if you look at things that are named Operation Warp Speed or, you know, other covid treatments, vaccine, other things that were able to move at a much quicker pace and get done in a much quicker time frame — I think there’s a lot of agitation among what could be a very large group of people that their concerns and quality of life and some of these horrible symptoms are not being addressed. And as you noted, I think it’s very fascinating there are only two full-time staffers. I’ll be curious to see if this continues to change, but historically, it hasn’t been very promising.

Rovner: This is not new that Congress will direct, particularly the NIH, to study something that NIH just doesn’t seem prepared to study. Of course, as we know, there’s no NIH director at the moment. We’ve talked about the fact that nominee is being blocked by Democrat Bernie Sanders. But still, I mean, this is something — and I think Congress wants NIH to do because so many of their constituents are coming to them and saying, “We have this problem; please go out and study it.” And yet the federal scientists don’t seem to know really what to do.

Weber: Well, and there was a congressman, I don’t remember his name, but someone on this panel probably does, who said he was retiring because he has long covid, and I think he has colleagues that also have long covid. So, I mean, I think that probably helped get them a fair amount of cash. But as you said, the delivery mechanism on getting clinical trials rolling has really not been there.

Rovner: Well, we will keep an eye on this, too. That is this week’s news. Now we will play my interview with ��ýҕ�l Health News’ Phil Galewitz, and then we will come back with our extra credits. We are pleased to welcome back to the podcast my colleague Phil Galewitz, who reported and wrote the latest ��ýҕ�l Health News-NPR “Bill of the Month” story. Phil, thanks for being here.

Phil Galewitz: Nice to be back.

Rovner: So, this month’s patient was well covered by insurance and, to cut to the chase, shouldn’t have paid anything for a surgery he had in 2021. Tell us who he is and what kind of care he got.

Galewitz: Thomas Greene had complications from diabetes, and he had to get some clogged arteries cleared out in his leg to treat something called peripheral artery disease. So he went to the hospital in 2021 for the procedure. He recovered pretty well. He had some other health issues, but he recovered fine from the procedure. The issue then came when the bills started coming in.

Rovner: And Mr. Greene has both Medicare and a supplemental Medigap policy, which should have brought his out-of-pocket cost to zero. But that’s not what happened. What did happen?

Galewitz: Yes, the Greenes, because of their good insurance, were used to whenever they got health care, that they did not have any out-of-pocket expenses. But this time, about a year later, or over a year, after the procedure, they suddenly started getting some letters from collection agencies who were looking to collect bills for about $3,000 for anesthesia.

Rovner: So, just the anesthesia part.

Galewitz: It was just the anesthesia. The hospital was fine. The surgeon who did the procedure was fine, but the anesthesiologist, who they were not even familiar with, started sending them bills through a collection agency, and they were perplexed about what was going on. And they tried to reach out and call and find out what was happening, why they were getting bills. And they said they were getting a runaround and couldn’t really get a clear answer.

Rovner: They went for help, too, and the people who were helping them had trouble getting answers.

Galewitz: Yes. They went to some organizations within Pennsylvania that specialize in helping seniors with their medical bills, and even them couldn’t get any clear answers. And then thankfully, they kept pushing and kept pushing, and they were able to get another advocacy group to work on their behalf, who talked to this organization called the North American Partners in Anesthesia, which is a large anesthesia group, to stop sending them bills, and thankfully, the bills have stopped coming. They did not pay anything, but they were worried about that this was going to affect your credit.

Rovner: So what did happen? How did they end up with these bills that they shouldn’t have had?

Galewitz: It’s still a mystery. North American would not talk to us, ��ýҕ�l Health News, to give us answers, and they don’t really have a clear answer. By law, providers are supposed to bill Medicare within one year to have their claims paid. In this case, the records that the Greenes have show that the bills to the claims to Medicare were sent in after a year, and that because of that, Medicare clearly marked down and said these bills are after a year, we’re not paying anything, and the patient owes zero. And when a patient gets a notice from Medicare saying, “You owe zero,” that’s supposed to be it. You don’t owe anything. No matter what letters you get from the provider, you’re not supposed to pay anything. But in this case the provider continued to bill and continued to send collection agencies after the patient. And they were perplexed.

Rovner: And just to be clear, when they billed this supplemental policy, the supplemental policy has to deny it if Medicare denied it, right?

Galewitz: Right. Humana was their supplemental provider, and that was actually the answer from Humana. If Medicare is not covering it, then we’re not going to cover it.

Rovner: So, in the meantime, even if you get one of these bills and you know that you don’t owe anything but there are collection letters coming, you do need to do something, right?

Galewitz: Yes. You should open your mail. The Greenes did say at one point they think they may have gotten some letters earlier from the anesthesia group and they may not have opened them. Because they didn’t expect any bills, they didn’t open them. The lesson is open your mail. Even if you think you shouldn’t get any bill, you should at least know ahead of time that you may be able to stave off problems down the road. So always open your mail, and then you may be able to handle the problem earlier on. So they may have stopped some of the collections. But again, they were covered. They reached out. They tried to do everything that they can within their realm, and they struggled. They’re feeling OK now. They never got a letter from North American saying, “Hey, we apologize,” or, “You’re in the clear.” They’ve just stopped getting bills. And it’s been since last year that they’ve gotten a bill, so they feel like they should be OK.

Rovner: And just the one little quirk also of this story is that it looked like the anesthesia group overbilled, right?

Galewitz: There was a question on the bills, on the claims, that it appeared that an anesthesiologist and a nurse anesthetist both billed Medicare for the exact same time, though it could be that maybe there was both, that one assisted the other. This was not a complex procedure. So there were questions about that. But it would be unusual that they would both bill for the exact same time period. And so there’s a question if they were double billing; it could not have been. North American would not answer our question.

Rovner: Well, so we have discovered another thing that, even if you don’t necessarily get answers, it appears that they got their problem solved, right?

Galewitz: Yes.

Rovner: OK. Phil, Galewitz, thank you very much.

Galewitz: Thank you.

Rovner: OK. We are back and it’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We’ll post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: Sure. Staying on the DeSantis train, I have a piece from the Tampa Bay Times called “.” And this came out of a lawsuit that was challenging the state’s decision to strip Medicaid coverage of gender-affirming care, not just for children, but for adults as well. So what came out in discovery in the lawsuit was that the state did just all of these really unusual things. And the judge thought it showed a political motivation rather than, you know, a serious health care motivation for doing this. They paid all of these outside contractors with dubious backgrounds to be part of this effort. They came up with a slogan for the report, which is completely unusual. And the reporters found that staffers who supported defunding gender-affirming care got huge raises, and people who were not supportive of it did not. So, really good accountability reporting, and it seems to have played out in court as well.

Rovner: Yeah, quite a story. Sandhya.

Raman: My extra credit this week is called “Black Women Weigh Emerging Risks of ‘Creamy Crack’ Hair Straighteners.” And it’s from Ronnie Cohen for ��ýҕ�l Health News and on BET. The story takes a look at the messaging and awareness related to increasing health risks that people are worried about related to relaxers or, you know, chemically straightened hair. And it’s something that is especially popular among Black women. I think it was really interesting that only about half of states have anti-hair-discrimination laws, and so a lot of women might be more eager to get their hair chemically straightened for various reasons, workplace or things like that. And there’s not a ton of research.

Rovner: Right. It’s not just that they think it looks better.

Raman: No, no. And there’s not a ton of research on the cancer risk, but personal care products like hair relaxers don’t have the same kind of approval process through the FDA as food and drugs. So, it just takes a look at some of the different things there and what different providers are kind of considering and watching out for.

Rovner: Yeah, it’s really kind of scary. Lauren.

Weber: I actually flagged one of Alice’s stories, which is, “,” and it details how a bunch of patients have tested positive for tuberculosis after receiving bone grafts. And one of them has died. And there’s 36 more that are being treated for tuberculosis. And I find this fascinating because I find the coverage of tuberculosis in this country totally not where it should be. I mean, TB is — there are a lot of cases in the U.S. It’s a highly infectious — I mean, not a lot; there’s like 10,000 — but there’s a lot more than people realize. And it can be latent and lie in wait and, you know, to have some sort of medical procedure and then find out that whatever was implanted in you has given you a very dangerous, highly infectious disease that could result in you having to quarantine for months, depending on what it is, is really alarming. And there’s a lot of accountability follow-up questions on this for the FDA, these bone graft companies. And it gets at, do we want to gut the FDA, that is hopefully trying to stop things like this, even if it’s not preventing it here? It just leads to a lot of accountability questions that I think are quite fascinating.

Rovner: Yeah, a lot a lot of things that people have not thought about. Well, my story this week is , but it’s not so much a story as it is an event. Aug. 1 would have been the 103rd birthday of Henrietta Lacks, who longtime listeners to the podcast will remember we talked about a few years back when the book about her life, “The Immortal Life of Henrietta Lacks,” was made into a movie. For those of you without such long memories, Henrietta Lacks was an African American woman from Baltimore who was admitted to Johns Hopkins Hospital for cervical cancer in 1951. She died later that year at age 31. But the doctors who treated her also harvested cells without her knowledge or permission that turned out to be the first-ever self-perpetuating cell line. So HeLa cells, as they are called, for Henrietta Lacks, have been used in more than 75,000 different studies since then and have led to the development of such breakthroughs as the polio vaccine, treatments for cancer, and even the mapping of the human genome. While Hopkins has given the cells away for free to researchers, many of the companies that have used them have developed products that have made them, the companies, very rich. But until this week, no one in Henrietta Lacks’ family ever profited from the enormous contribution that she made to medical science. This week, the family’s lawyers reached a confidential but presumably significant settlement with one of those companies, Thermo Fisher, which makes a wide range of scientific supplies. But this is not just about justice for the family of Henrietta Lacks; it’s about starting to recognize and atone for unethical medical research over many, many years, particularly on African Americans. A good birthday present indeed. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks, as always, to our producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still tweet me. I’m . Sandhya.

Raman: I’m .

Rovner: Lauren.

Weber: .

Rovner: Alice.

Ollstein: .

Rovner: We will be back in your feed next week. Until then, be healthy.

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Con el fin de la emergencia sanitaria, personas con covid de largo plazo se sienten abandonadas

Jackie Fortiér, LAist — Tue, 18 Apr 2023 12:04:00 +0000

Carreras abandonadas. Matrimonios rotos. Falta de comprensión por parte de familiares y amigos.

Estas son algunas de las luchas emocionales y económicas que enfrentan las personas con síndrome de covid-19 de largo plazo, años después de la infección.

Físicamente, se sienten debilitadas y doloridas: no pueden subir las escaleras, concentrarse en un proyecto o mantener un trabajo.

A un paso del fin de la emergencia nacional de salud pública en mayo, muchas personas con síntomas prolongados de covid se sienten abandonadas por legisladores que están ansiosos por dar vuelta la página.

“Los pacientes están perdiendo la esperanza”, dijo Shelby Hedgecock de Knoxville, Tennessee, quien se identifica como sobreviviente de covid-19 de largo plazo y ahora aboga por pacientes como ella. “Nos sentimos olvidados”.

En marzo, los Centros para el Control y la Prevención de Enfermedades (CDC) estimaron que el , unas 16 millones de personas, sufren de lo que se llama síndrome de covid de largo plazo o covid prolongado: problemas de salud persistentes que continúan o emergen después de la infección.

Investigadores estiman que el 1.6% de los adultos estadounidenses, alrededor de 4 millones de personas, tienen síntomas que afectan su capacidad para realizar actividades diarias.

Si bien estos pacientes ya no son contagiosos, sus problemas de salud pueden prolongarse y extenderse a casi todos los sistemas del cuerpo. Más de 200 síntomas y afecciones, incluyendo fatiga y depresión, están relacionados con este síndrome, dijo la doctora Linda Geng, que trata a pacientes en la clínica de del centro médico de la Universidad de Stanford.��

Su gravedad y duración puede variar. Algunas personas se recuperan en unas pocas semanas, mientras que un número menor tiene problemas de salud persistentes y debilitantes. Actualmente no existe ninguna prueba, tratamiento o cura. Ni siquiera hay una definición médica aceptada.

“Cuando no existen pruebas para comprobar que hay algo anormal, puede causar ansiedad y las personas pueden sentir que no las toman en serio”, dijo Geng.

El costo físico y emocional ha dejado a muchos sin esperanzas. Un estudio de 2022 de adultos en Japón y Suecia encontró que las personas con síntomas prolongados de covid tienen de desarrollar problemas de salud mental, como depresión, ansiedad y estrés postraumático, que aquellas que se recuperan totalmente de la enfermedad.

“Una de mis amigas se suicidó en mayo de 2021”, dijo Hedgecock. “Tuvo una infección de covid leve y empezó a tener complicaciones médicas recurrentes, y se puso tan mal que decidió terminar con su vida”.

En el condado de Los Ángeles, el 46% de los adultos que contrajeron covid se recuperaron por completo en un mes, pero el resto —la mayoría— tuvo uno o más síntomas persistentes, según un realizado por el COVID-19 Pandemic Research Center de la Universidad del Sur de California.

De acuerdo con los investigadores, la fatiga crónica es el problema más común, seguido por la niebla cerebral y la tos persistente, síntomas que afectan la vida diaria de las personas.

Entre los encuestados que informaron sufrir de covid prolongado, el 77% dijo que su condición limitaba las actividades diarias como ir a la escuela o al trabajo, o socializar. Una cuarta parte dijo que experimentaba limitaciones severas.

Los antivirales reducen el riesgo de desarrollar covid de largo plazo en personas recién infectadas. Pero para aquellas que ya sufren de la enfermedad, la ciencia médica todavía se está poniendo al día.

A continuación, los casos de Hedgecock y otros dos pacientes.

Una lesión cerebral debilitante

Antes de contraer covid durante la primavera de 2020, la vida de Hedgecock giraba en torno al ejercicio. Trabajaba como entrenadora personal en Los Ángeles y participaba en competencias de resistencia los fines de semana.

A los 29 años, estaba a punto de lanzar su propio negocio��de salud y bienestar, pero empezó a tener problemas para respirar.

“Una de las cosas más aterradoras que me pasó fue que no podía respirar por la noche”, dijo Hedgecock. “Fui a la sala de emergencias en tres ocasiones, y cada vez me dijeron: ‘Estás aquí, te puedes mover, eres joven, estás sana. Vas a estar bien’”.

En ese momento, su médico de cabecera le dijo que no necesitaba oxígeno suplementario, a pesar de que sus niveles de oxígeno descendían por debajo de lo normal en la noche, dejándola sin aliento y llorando de frustración.

Por un año y medio, su afección le impidió disfrutar de uno de sus pasatiempos favoritos, la lectura.

“No podía mirar una página y decirte lo que decía. Era como si hubiera una desconexión entre las palabras y mi cerebro”, dijo. “Era una sensación tan extraña y desalentadora”.

Meses después, bajo la dirección de un especialista, Hedgecock se sometió a una prueba que mide la actividad eléctrica en el cerebro. La prueba reveló que su cerebro había estado privado de oxígeno durante meses, dañando la zona que controla la memoria y el lenguaje.

Desde entonces, Hedgecock se mudó de vuelta a Tennessee para estar cerca de su familia. No sale de su departamento sin un dispositivo de alerta médica que puede usar para llamar a una ambulancia.

Está bajo el cuidado de un equipo de especialistas y se siente afortunada, ya que conoce a personas con covid prolongado en grupos de ayuda en línea que van a perder su seguro de salud a medida que . Otras personas siguen sin poder trabajar.

“Muchos de ellos han perdido todos sus ahorros. Algunos no tienen donde vivir”, dijo.

En cama por un año

Julia Landis llevaba una vida plena como terapeuta antes de contraer covid en la primavera de 2020.

“Estaba ayudando a la gente, me encantaba mi trabajo y amaba mi vida, y he perdido todo eso”, dijo la mujer de 56 años, que vive con su esposo y su perro en Ukiah, en el condado de Mendocino.

En 2020, Landis vivía en un departamento en Phoenix y hacía un tratamiento por telemedicina para su bronquitis, que fue provocada por covid. Lo que había comenzado como un caso leve se convirtió en una depresión severa.

“Estuve en cama durante un año”, dijo.

Todavía está deprimida, y tiene dolores debilitantes y ansiedad. Para compensar la pérdida de ingresos, el esposo de Landis trabaja más horas, lo que profundiza su soledad.

“Me gustaría vivir en un lugar donde hubiera gente los siete días de la semana para no sentirme tan aterrada de estar sola todo el día”, dijo Landis. “Si esto fuera cáncer, estaría viviendo con mi familia, de eso estoy segura”.

Landis se refiere a sí misma como una paciente profesional, llenando sus días con fisioterapia y citas médicas. Está mejorando gradualmente, y puede socializar con otros de vez en cuando, aunque esto la deja exhausta y puede tardar días en recuperarse.

“Es aterrador porque no hay forma de saber si será así por el resto de mi vida”, dijo.

“Me sentí traicionada”

Linda Rosenthal, una asistente de escuela secundaria jubilada de 65 años, tiene síntomas prolongados de covid, incluyendo una inflamación en el pecho que hace que le cueste respirar. Le ha resultado difícil obtener atención médica.

Llamó a un cardiólogo en Laguna Woods, en el condado de Orange, quien le dio un tratamiento. Pero cinco días después recibió por correo una carta del doctor en la que le decía que ya no podría brindarle servicios médicos. La carta no explicaba por qué.

“Estaba tan sorprendida”, dijo. “Y entonces me sentí traicionada, porque es terrible recibir una carta de un médico diciendo que ya no te quiere como paciente, aunque esté en su derecho rechazarte, porque te hace dudar de ti misma”.

Rosenthal encontró a otro cardiólogo dispuesto a hacer visitas de telemedicina. En su consultorio, los asistentes usan máscaras aunque la regla estatal ha expirado. Sin embargo, el consultorio está a más de una hora en auto de donde ella vive.

Si te encuentras en una crisis, comunícate con la llamando al 988 o con la palabra “HOME” al 741741.

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As Pandemic Emergencies End, People Battling Long Covid Feel ‘Swept Under the Rug’

Jackie Fortiér, LAist — Tue, 18 Apr 2023 09:00:00 +0000

Lost careers. Broken marriages. Dismissed and disbelieved by family and friends.

These are some of the emotional and financial struggles long covid patients face years after their infection. Physically, they are debilitated and in pain: unable to walk up the stairs, focus on a project, or hold down a job. Facing the end of the federal public health emergency in May, many people experiencing lingering effects of the virus say they feel angry and abandoned by policymakers eager to move on.

“Patients are losing hope,” said Shelby Hedgecock, a self-described long covid survivor from Knoxville, Tennessee, who now advocates for patients like herself. “We feel swept under the rug.”

The Centers for Disease Control and Prevention estimated in March that , or about 16 million, were experiencing long covid, or ongoing health problems that continue or emerge after a bout of covid-19. Researchers estimate that 1.6% of U.S. adults, or about 4 million, have symptoms that have significantly reduced their ability to carry out day-to-day activities.

While patients are no longer contagious, their health issues can stretch on and affect almost every system in the body. More than 200 symptoms and conditions, including fatigue and depression, are linked to long covid, said Linda Geng, a physician who treats patients at Stanford Medicine’s .

The severity and duration of long covid vary. Some people recover in a few weeks, while a smaller number have debilitating and lingering health issues. There is currently no test, treatment, or cure. There’s not even an accepted medical definition.

“When you don’t have any tests that show that anything’s abnormal, it can be quite invalidating and anxiety-provoking,” Geng said.

The physical and emotional toll has left some feeling hopeless. A 2022 study of adults in Japan and Sweden found that those with post-covid conditions were to develop mental health issues, including depression, anxiety, and post-traumatic stress, as people without them.

“One of my friends committed suicide in May of 2021,” Hedgecock said. “She had a mild covid infection, and she progressively had medical complications continuously pop up, and it just got so bad that she decided to end her life.”

In Los Angeles County, 46% of adults who contracted covid were fully recovered a month later, but the rest — a majority — reported one or more continuing symptoms, according to a by the University of Southern California’s COVID-19 Pandemic Research Center. The researchers found chronic fatigue topped the list of health issues, followed by brain fog and persistent cough, all of which affect people’s daily lives.

Among the respondents who identified as living with long covid, 77% said their condition limited daily activities such as going to school or work or socializing. One-quarter reported experiencing severe limitations.

Taking antivirals cuts the risk of developing long covid in people who are newly infected. But for people already suffering, medical science is trying to catch up.

Here’s a look at Hedgecock and two other patients who have had long covid for years.

A Debilitating Brain Injury

Before contracting covid during spring 2020, Hedgecock’s life revolved around fitness. She worked as a personal trainer in Los Angeles and competed in endurance competitions on the weekends. At 29, she was about to launch an online wellness business, then she started having trouble breathing.

“One of the scariest things that happened to me was I couldn’t breathe at night,” Hedgecock said. “I did go to the emergency room on three different occasions, and each time I was told, ‘You’re up and you’re moving. You’re young; you’re healthy. It’s going to be fine.’”

Her primary care physician at the time told her she didn’t need supplemental oxygen even though her oxygen saturation dipped below normal at night, leaving her gasping for breath and crying in frustration.

Her condition kept her from one of her favorite hobbies, reading, for 19 months.

“I couldn’t look at a page and tell you what it said. It was like there was a disconnect between the words and my brain,” she said. “It was the strangest, most discouraging thing ever.”

Months later, under the direction of a specialist, Hedgecock underwent a test measuring electrical activity in the brain. It revealed her brain had been starved of oxygen for months, damaging the section controlling memory and language.

Since then, she has moved back to Tennessee to be close to family. She doesn’t leave her apartment without a medical alert button that can instantly call an ambulance. She works with a team of specialists, and she feels lucky; she knows people in online long covid groups who are losing health coverage as , while others remain unable to work.

“A lot of them have lost their life savings. Some are experiencing homelessness,” she said.

In Bed for a Year

Julia Landis led a fulfilling life as a therapist before she contracted covid in spring 2020.

“I was really able to help people and it was great work and I loved my life, and I’ve lost it,” said the 56-year-old, who lives with her husband and dog in Ukiah, California.

In 2020, Landis was living in an apartment in Phoenix and received treatment via telehealth for her covid-related bronchitis. What started out as a mild case of covid spiraled into severe depression.

“I just stayed in bed for about a year,” she said.

Her depression has continued, along with debilitating pain and anxiety. To make up for her lost income, Landis’ husband works longer hours, which in turn exacerbates her loneliness.

“It would be nice to be living somewhere where there were people around seven days a week so I wouldn’t have to go through days of being just terrified to be alone all day,” Landis said. “If this were cancer, I’d be living with family. I’m sure of it.”

Landis refers to herself as a professional patient, filling her days with physical therapy and medical appointments. She’s gradually improving and can socialize on occasion, though it leaves her exhausted and can take days to recover.

“It’s terrifying because there’s just no way of knowing if this is going to be for the rest of my existence,” she said.

‘I Felt Betrayed’

Linda Rosenthal, a 65-year-old retired high school paraprofessional, has long covid symptoms, including inflammation in her chest that makes breathing difficult. She has found it hard to get medical care.

She called and set up a treatment plan with a local cardiologist near her home in Orange County, California, but received a letter five days later telling her he would no longer be able to provide her medical services. The letter gave no reason for the cancellation.

“I was so surprised,” she said. “And then I felt betrayed because it is terrible to get a letter where a doctor, although within their rights, says that they don’t want you for a patient anymore, because it causes self-doubt.”

Rosenthal found another cardiologist willing to do telehealth visits and who has staff wear masks in the office even though the state rule has expired. The practice, however, is more than an hour’s drive from where she lives.

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

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KHN’s ‘What the Health?’: The Covid Response Coordinator Speaks

Thu, 22 Dec 2022 16:00:00 +0000

Can’t see the audio player? You can also listen on , , , , or wherever you listen to podcasts.

Click here for a transcript of the episode.

Dr. Ashish Jha, the White House covid-19 response coordinator, is the guest for a wide-ranging interview on this week’s “What the Health?” podcast.

Jha, who is on leave from his “day job” as dean of the Brown University School of Public Health, said he’s particularly worried about the nation making the transition from public health emergency status back to a more normal footing and routine — particularly for low-income and uninsured people who may not be able to get the kind of covid tests, treatments, and vaccines that have so far been free through federal subsidies.

Jha said the Biden administration is doing more than the public realizes to study “long covid,” a set of conditions among a subset of patients who continue to suffer from an infection or its aftereffects, and to improve the quality of indoor air, which can help stem the spread of not only the coronavirus but other communicable respiratory diseases as well.

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Empresas de capital riesgo invierten en el negocio de los ensayos clínicos de medicamentos. ¿Cuál es el riesgo para los pacientes?

Rachana Pradhan — Fri, 02 Dec 2022 15:07:00 +0000

Tras haber tenido éxito invirtiendo en las áreas más lucrativas de la medicina, como los centros quirúrgicos y las consultas de dermatología, las empresas de capital riesgo/inversión se han adentrado agresivamente en los nichos más ocultos del sector. Están invirtiendo miles de millones en el negocio de los ensayos clínicos de medicamentos.

Para lanzar un nuevo fármaco al mercado, la Administración de Alimentos y Medicamentos (FDA) exige a las farmacéuticas estudios exhaustivos para demostrar su seguridad y eficacia. Conseguir que un medicamento salga al mercado unos meses antes, y con menos gastos de lo habitual, puede traducirse en beneficios millonarios para el fabricante.

Por eso, una startup respaldada por capital privado como Headlands Research vio la oportunidad de crear una red de centros clínicos eficientes, para realizar con mayor rapidez este crucial trabajo científico. Y por eso, Moderna, Pfizer, Biogen y otros peces gordos de la industria farmacéutica la han contratado, a pesar de que es un jugador relativamente nuevo en el campo, formado en 2018 por el gigante de la inversión KKR.

En julio de 2020, Headlands que había obtenido codiciados contratos para realizar ensayos clínicos de vacunas contra covid-19, que incluirían a AstraZeneca, Johnson & Johnson, Moderna y Pfizer.

Al comercializar sus servicios, Headlands describió su misión como un “profundo impacto” en los ensayos clínicos, que incluiría el aumento de la participación de las minorías raciales y étnicas que durante mucho tiempo han estado poco representadas en este tipo de investigación.

“Estamos entusiasmados”, afirmó en un comunicado Mark Blumling, CEO de la empresa, “por llevar los estudios de covid-19 a las poblaciones étnicamente diversas representadas en nuestros centros”. Blumling, un veterano de la industria farmacéutica con experiencia en capital de riesgo y privado, dijo a KHN que KKR lo respaldó para fundar la empresa, que ha crecido mediante la compra de centros de ensayo establecidos y la apertura de otros nuevos.

Encontrar e inscribir pacientes suele ser la parte limitante y más costosa de los ensayos, según la doctora Marcella Alsan, profesora de políticas públicas en la Harvard Kennedy School y experta en la diversidad de los ensayos clínicos, que tienen un costo medio de $19 millones para nuevos fármacos, según .

Antes de la llegada de covid, Headlands adquirió centros en McAllen y Houston, en Texas, en la zona metropolitana de Atlanta y Lake Charles, Louisiana, argumentando que estas ubicaciones le ayudarían a impulsar la captación de pacientes diversos, una prioridad urgente durante la pandemia en el estudio de vacunas para prevenir una enfermedad que ha matado de forma desproporcionada a afroamericanos, hispanos y nativos americanos.

Los centros de Headlands también llevaron a cabo, entre otros, estudios clínicos sobre tratamientos para combatir la diabetes tipo 2, la depresión posparto, el asma, las enfermedades hepáticas, las migrañas y la endometriosis, según una revisión de los archivos del sitio web y del sitio web federal ClinicalTrials.gov. Pero al cabo de dos años, algunas de las seductoras promesas de Headlands se desvanecieron.

En septiembre, Headlands cerró sus sedes de Houston —una de las mayores áreas metropolitanas del país y sede de importantes centros médicos y universidades de investigación— y Lake Charles, una medida que Blumling atribuyó a problemas para encontrar “personal experimentado y altamente calificado” para llevar a cabo el complejo y especializado trabajo de la investigación clínica. El centro de McAllen no acepta nuevas investigaciones, ya que Headlands ha trasladado sus operaciones a otro centro del sur de Texas que puso en marcha con Pfizer.

¿Qué repercusiones han tenido estos centros? Blumling no quiso dar detalles sobre si se cumplieron los objetivos de inscripción en los ensayos de la vacuna contra covid, ni siquiera por raza y etnia, citando la confidencialidad. Señaló que, para cualquier ensayo, los datos se agregan en todos los centros y la empresa farmacéutica que lo patrocina es la única entidad que ha visto los datos de cada centro una vez finalizado el ensayo.

La fragmentación del sector de los ensayos clínicos lo ha convertido en uno de los principales objetivos del capital riesgo, que suele consolidar los mercados mediante la fusión de empresas. Pero la trayectoria de Headlands muestra los riesgos potenciales de intentar combinar centros independientes y exprimir la eficiencia de estudios que afectarán la salud de millones de personas.

, economista de salud en Johns Hopkins que ha estudiado las adquisiciones de consultas médicas por parte de este tipo de empresas, afirmó que la consolidación puede tener inconvenientes. Singh y sus colegas publicaron en septiembre un estudio en el que se analizaban las adquisiciones en dermatología, gastroenterología y oftalmología, y en el que se constataba que los consultorios médicos —un negocio parecido al de las empresas de ensayos clínicos— cobraban precios más altos tras la adquisición.

“Hemos observado que la reducción de la competencia en el mercado se asocia con un aumento de los precios, una reducción del acceso y de las opciones para los pacientes, etc.”, señaló Singh. “Así que es un equilibrio delicado”.

El doctor , profesor en la Facultad de Medicina de Harvard, calificó de “preocupante” la participación de capital de riesgo en los ensayos clínicos.

“Tenemos que asegurarnos de que los pacientes” saben lo suficiente como para dar “un consentimiento adecuado e informado”, dijo, y garantizar “protecciones sobre la privacidad de los datos”.

“No queremos que ese tipo de cosas se pierdan porque el objetivo es ganar dinero”, añadió.

Blumling aseguró que los centros de los ensayos adquiridos por Headlands no están cobrando precios más altos que antes, y afirmó que la privacidad “es una de nuestras mayores preocupaciones. Headlands mantiene normas muy estrictas”.

Buenos o malos, los ensayos clínicos se han convertido en un negocio enorme y rentable en la esfera del capital de riesgo, según muestran los datos.

Once de las 25 empresas de capital de riesgo identificadas por PitchBook, un rastreador del sector, como los principales inversores en atención sanitaria, han adquirido participaciones en empresas de investigación clínica, según un análisis de KHN. Estas empresas han participado en estudios que van desde hasta tratamientos contra el cáncer de ovario, la enfermedad de Parkinson y el Alzheimer.

Las empresas contratadas también analizan los datos de los pacientes y preparan materiales para obtener la aprobación de las agencias reguladoras, con la esperanza de conseguir que más fármacos lleguen al mercado con mayor rapidez. Y un gran atractivo para los inversores: las empresas de investigación clínica ganan dinero tanto si un fármaco tiene éxito como si no, lo que resulta menos arriesgado que invertir en una empresa farmacéutica.

El número de ensayos clínicos se ha disparado hasta superar los 434,000 este año a finales de noviembre, más del triple que hace una década.

Aun así, la mayoría de los centros de ensayo son consultorios médicos que no realizan estudios de forma sistemática, de la empresa de inversión Provident Healthcare Partners, con sede en Boston.

“Los centros independientes son adquiridos por fondos de capital de riesgo, que los incluyen en grupos más grandes de 30 ó 40 centros, y su plan es convertirlos en un negocio y volver a venderlos”, afirmó Linda Moore Schipani, CEO de Clinical Research Associates, una empresa con sede en Nashville que trabajó en ensayos de vacunas contra covid para AstraZeneca, Novavax y Pfizer. “Ese es un poco el fin del juego”.

Headlands es un buen ejemplo. en noviembre de 2019 que adquiriría seis centros en Estados Unidos y Canadá, incluidos tres en Texas y Louisiana propiedad de Centex Studies que ayudarían a mejorar la participación entre hispanos y afroamericanos.

Ha realizado otras adquisiciones desde entonces y ha abierto nuevos centros en áreas con “opciones de ensayo extremadamente limitadas”, algo que, según Blumling, distingue a su empresa.

“No soy un predicador del capital de riesgo”, dijo Blumling. “La capacidad de KKR de estar dispuesta a invertir en algo que supone una rentabilidad de tres a cinco años frente a una rentabilidad de uno a dos años es algo que no se ve con frecuencia”.

Un centro de investigación en Brownsville, Texas —muy cerca de la frontera entre Estados Unidos y México, y donde el 95% de la población es hispana— es uno de los que forman parte de su asociación con Pfizer para impulsar la diversidad de pacientes.

Para captar pacientes, Headlands “va más allá de lo que hacen muchos centros, que se limitan a redes sociales”, explicó Blumling en una entrevista. “Va a las iglesias, ferias de la comunidad, realmente llegando a la comunidad en sentido amplio, en la medida de lo posible”.

Headlands cerró los centros de Houston y Lake Charles debido a problemas de personal, explicó Blumling, y terminó o trasladó sus estudios a otros lugares. Blumling indicó que la decisión de cerrar esas sedes “no tenía nada que ver con la rapidez de los ensayos”.

Del mismo modo, dijo, Headlands ha movido las operaciones de McAllen a Brownsville “porque contaba con una mayor población de personal capacitado”.

“Queremos seguir ampliando los centros y hacer un gran trabajo”, señaló Blumling. “Si no podemos encontrar el personal para hacerlo con la calidad que exigimos, que es al más alto nivel, entonces no tiene sentido mantener esos centros”.

Una empresa familiar

En 2006, Devora Torrence cofundó Centex Studies, que describió como “mi pequeña empresa familiar” en un sobre mujeres empresarias en el mundo de la ciencia. A finales de 2018, recibió una oleada de interés por parte de fondos de capital de riesgo. El atractivo era evidente: las farmacéuticas necesitaban redes de ensayos clínicos más grandes.

“La cuestión es la rapidez para llegar al mercado. Con una red más grande, obtienes esa rapidez”, observó Torrence en el podcast. “Para mí estaba claro que o conseguía alguna inversión externa y crecía yo misma, o respondía a estas llamadas y veía si tal vez era el momento adecuado para dejarlo”.

Unirse a Headlands tuvo sus ventajas durante la pandemia porque pudo “apoyarse” en otros centros con experiencia en ensayos de vacunas. “Si no hubiéramos contado con ellos… quizá no seguiríamos aquí”, afirmó Torrence.

Torrence, cuyo perfil de LinkedIn dice que dejó la empresa en 2021, no respondió a los mensajes de KHN.

Lyndon Fullen, un consultor de atención médica y ex empleado de Centex, dijo que el capital privado proporciona financiación que permite a las empresas agregar centros de estudio.

“Lo apoyo completamente”, dijo. “Si se trata de llegar a esa gran población de pacientes, por supuesto que es mejor tener grupos más grandes con esa financiación”.

La oportunidad de covid persistente

El grupo de inestigación Parexel vio una oportunidad durante la pandemia: millones de personas desarrollaban covid persistente tras la infección y había pocas opciones de tratamiento, si es que había alguna.

La empresa, que emplea a más de 19,000 personas, fue adquirida en 2021 por EQT Private Equity y el brazo de capital de riesgo de Goldman Sachs por , miles de millones más que los $4,500 millones que pagó la empresa de capital riesgo cuando adquirió Parexel en 2017.

Las investigaciones muestran los efectos debilitantes de covid persistente, incluido un de decenas de miles de pacientes en Escocia donde casi la mitad no se había recuperado por completo meses después. Pero los tratamientos que abordan sus causas profundas podrían tardar años en llegar. “Es un número enorme de personas”, afirmó la doctora Nathalie Sohier, que dirige el área de enfermedades infecciosas y vacunas de Parexel. “Hay mucha necesidad”.

Covid persistente representa la promesa y el riesgo del trabajo para desarrollar nuevos fármacos: millones de pacientes crean un mercado potencialmente lucrativo para las farmacéuticas y, sin embargo, los investigadores y expertos de la industria dicen que son reacios a lanzarse. En parte, esto se debe a que “no es una enfermedad bien definida, y eso hace que sea muy arriesgado para las empresas invertir en investigación”, afirmó Cecil Nick, vicepresidente de Parexel.

“¿Cómo vamos a poder decirle a la FDA que nuestro medicamento funciona? No podemos contar el número de personas que han muerto, ni el número de personas hospitalizadas”, apuntó el , profesor de la Universidad de California-San Francisco que dirige un estudio observacional sobre pacientes con covid persistente.

En agosto, de los más de 4,400 estudios sobre covid, solo 304 se centraban en covid persistente. Un tercio de ellos estaban relacionados con el desarrollo de fármacos, según Sohier.

Sohier afirmó que “hay pocas” empresas en su programa de covid persistente o prolongado. Eso no ha impedido que para guiar nuevos productos, por ejemplo mediante la labor reguladora y el uso de tecnología remota para retener a los pacientes en los ensayos. Parexel ha trabajado en casi 300 estudios relacionados con covid en más de 50 países, según su vocera, Danaka Williams.

Michael Fenne, coordinador de investigación y campañas del Private Equity Stakeholder Project, que estudia las inversiones de capital de riesgo, afirmó que Parexel y otras compañías han fortalecido su capacidad de almacenamiento de datos. El objetivo es disponer de mejor información sobre los pacientes.

“Se trata del acceso y el control de los pacientes”, añadió Fenne. “La tecnología facilita el acceso a los pacientes y vuelve más fácil la obtención de información más fiable sobre ellos”.

Fred Schulte, corresponsal senior de KHN, y Megan Kalata, colaboraron con este informe.

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The Business of Clinical Trials Is Booming. Private Equity Has Taken Notice.

Rachana Pradhan — Fri, 02 Dec 2022 10:00:00 +0000

After finding success investing in the more obviously lucrative corners of American medicine — like surgery centers and dermatology practices — private equity firms have moved aggressively into the industry’s more hidden niches: They are pouring billions into the business of clinical drug trials.

To bring a new drug to market, the FDA requires pharmaceutical firms to perform extensive studies to demonstrate safety and efficacy, which are often expensive and time-consuming to conduct to the agency’s specifications. Getting a drug to market a few months sooner and for less expense than usual can translate into millions in profit for the manufacturer.

That is why a private equity-backed startup like Headlands Research saw an opportunity in creating a network of clinical sites and wringing greater efficiency out of businesses, to perform this critical scientific work faster. And why Moderna, Pfizer, Biogen, and other drug industry bigwigs have been willing to hire it — even though it’s a relatively new player in the field, formed in 2018 by investment giant KKR.

In July 2020, Headlands it won coveted contracts to run clinical trials of covid-19 vaccines, which would include shots for AstraZeneca, Johnson & Johnson, Moderna, and Pfizer.

In marketing its services, Headlands described its mission to “profoundly impact” clinical trials — including boosting participation among racial and ethnic minorities who have long been underrepresented in such research.

“We are excited,” CEO Mark Blumling said in a statement, to bring “COVID-19 studies to the ethnically diverse populations represented at our sites.” Blumling, a drug industry veteran with venture capital and private equity experience, told KHN that KKR backed him to start the company, which has grown by buying established trial sites and opening new ones.

Finding and enrolling patients is often the limiting and most costly part of trials, said Dr. Marcella Alsan, a public policy professor at Harvard Kennedy School and an expert on diverse representation in clinical trials, which have a median cost of $19 million for new drugs, .

Before covid hit, Headlands acquired research centers in McAllen, Texas; Houston; metro Atlanta; and Lake Charles, Louisiana, saying those locations would help it boost recruitment of diverse patients — an urgent priority during the pandemic in studying vaccines to ward off a disease disproportionately killing Black, Hispanic, and Native Americans.

Headlands’ sites also ran, among other things, clinical studies on treatments to combat Type 2 diabetes, postpartum depression, asthma, liver disease, migraines, and endometriosis, according to a review of website archives and the federal website ClinicalTrials.gov. But within two years, some of Headlands’ alluring promises would fall flat.

In September, Headlands shuttered locations in Houston — one of the nation’s largest metro areas and home to major medical centers and research universities — and Lake Charles, a move Blumling attributed to problems finding “experienced, highly qualified staff” to carry out the complex and highly specialized work of clinical research. The McAllen site is not taking on new research as Headlands shifts operations to another South Texas location it launched with Pfizer.

What impact did those sites have? Blumling declined to provide specifics on whether enrollment targets for covid vaccine trials, including by race and ethnicity, were met for those locations, citing confidentiality. He noted that for any given trial, data is aggregated across all sites and the drug company sponsoring it is the only entity that has seen the data for each site once the trial is completed.

A fragmented clinical trials industry has made it a prime target for private equity, which often consolidates markets by merging companies. But Headlands’ trajectory shows the potential risks of trying to combine independent sites and squeeze efficiency out of studies that will affect the health of millions.

, a health economist at Johns Hopkins who has studied private equity acquisitions of physician practices, said consolidation has potential downsides. Singh and her colleagues in September analyzing acquisitions in dermatology, gastroenterology, and ophthalmology that found physician practices — a business with parallels to clinical trial companies — charged higher prices after acquisition.

“We’ve seen reduced market competition in a variety of settings to be associated with increases in prices, reduction in access and choice for patients, and so on,” Singh said. “So it’s a delicate balance.”

, a professor of medicine at Harvard Medical School, called private equity involvement in trials “concerning.”

“We need to make sure that patients” know enough to provide “adequate, informed consent,” he said, and ensure “protections about the privacy of the data.”

“We don’t want those kinds of things to be lost in the shuffle in the goals of making money,” he said.

Blumling said trial sites Headlands acquired are not charging higher prices than before. He said privacy “is one of our highest concerns. Headlands holds itself to the highest standard.”

Good or bad, clinical trials have become a big, profitable business in the private equity sphere, data shows.

Eleven of the 25 private equity firms identified by industry tracker PitchBook as the top investors in health care have bought stakes in clinical research companies, a KHN analysis found. Those companies have been involved in studies ranging from to treatments for ovarian cancer, Parkinson’s disease, and Alzheimer’s.

Contracted firms also analyze patient data and prepare materials to secure approval from regulatory agencies, in hopes of getting more drugs to market faster. And a big draw for investors: Clinical research companies make money whether or not a drug succeeds, making it less risky than investing in a drug company.

The number of clinical trials has exploded to more than 434,000 this year as of late November, more than triple the number a decade ago.

Still, most trial sites are physician practices that don’t consistently perform studies, by Boston-based investment firm Provident Healthcare Partners.

“Independent sites are being purchased by private equity, and they’re moving into larger site groups of 30, 40, and then their game plan is to roll that up into a business and then sell it again,” said Linda Moore Schipani, CEO of Clinical Research Associates, a Nashville-based company that worked on covid vaccine trials for AstraZeneca, Novavax, and Pfizer. “That’s kind of the endgame.”

Headlands is a prime example. in November 2019 that it would acquire six centers in the U.S. and Canada, including three sites in Texas and Louisiana owned by Centex Studies that would help improve participation among Hispanics and African Americans.

It has made other acquisitions since then and opened new sites in areas with “extremely limited trial options,” something Blumling says distinguishes his company.

“I’m not an evangelist for private equity,” Blumling said. “The ability of KKR to be willing to invest in something that is a three- to five-year return versus a one- to two-year return is something that you won’t see out there.”

A research center in Brownsville, Texas — a stone’s throw from the U.S.-Mexico border and where 95% of the population is Hispanic or Latino — is one of several where it is partnering with Pfizer to boost patient diversity.

To recruit patients, Headlands “is really going beyond what a lot of sites do, which is social media,” Blumling said in an interview. “It’s going within churches, community fairs, really getting out into as much as possible the broader community.”

Headlands closed the Houston and Lake Charles sites because of staffing issues, Blumling said, and finished or moved their studies elsewhere. Blumling said the decision to close those locations “did not have anything to do with the speed of trials.”

Similarly, he said, Headlands is moving the McAllen site’s operations to Brownsville “because it had a larger population of trained personnel.”

“We want to continue to grow sites and do great work,” Blumling said. “If we can’t find the people in order to do that at the quality that we demand, which is at the highest level, then it doesn’t make sense to keep those sites.”

‘The Writing to Me Was on the Wall’

In 2006, Devora Torrence co-founded Centex Studies, which she described as “my little mom and pop business” in a about female entrepreneurs in science. She said a flurry of interest from private equity came at the end of 2018. The appeal was evident: Drug companies were relying on bigger clinical trial networks.

“The thing is speed, getting it to market. With a bigger network, you get that speed,” Torrence said on the podcast. “The writing to me was on the wall that either I get some outside investment and scale up myself, or kind of listen to these guys and see if maybe now would be the right time to exit.”

Joining Headlands had its benefits during the pandemic because she could “lean on” its other sites with experience running vaccine trials. “Had we not gotten those … we may not still be here,” Torrence said.

Torrence, whose LinkedIn profile said she left the company in 2021, didn’t respond to messages from KHN.

Lyndon Fullen, a health care consultant and former Centex employee, said private equity provides funding that allows companies to add study sites.

“I completely support it,” he said. “If it’s about reaching that large patient population, it’s of course better to have larger groups with that funding.”

Opportunity in Long Covid

Contract research organization Parexel saw opportunity in the covid pandemic — millions of people were developing long covid after infection and there were few, if any, meaningful treatment options.

The company, which employs more than 19,000 people, was acquired in 2021 by EQT Private Equity and Goldman Sachs’ private equity arm , billions more than the $4.5 billion that private equity firm when it took Parexel private in 2017.

A growing body of research shows the debilitating effects of long covid, including a of tens of thousands of patients in Scotland where nearly half had not fully recovered months later. But treatments addressing its root causes could be years away. “It’s a huge number of people,” said Dr. Nathalie Sohier, who leads Parexel’s infectious diseases and vaccines franchise. “There’s a lot of need.”

Long covid represents the promise and peril of the work to develop new drugs: Millions of patients create a potentially lucrative market for drug companies, and yet researchers and industry experts say they are reluctant to jump in. In part, that’s because “it’s not a well-defined disease, and that really makes it highly risky for companies to invest in research,” said Cecil Nick, a vice president for Parexel.

“How are we going to be able to tell the FDA that our drug works? We can’t count the number of people who died; we can’t count the number of people in the hospital,” said , a University of California-San Francisco professor who is running an observational study on long covid patients.

As of August, among more than 4,400 covid studies, only 304 focused on long covid. A third of those were related to drug development, Sohier said.

Sohier said “there are few” companies in its long covid program. That hasn’t stopped Parexel from as the ideal partner to shepherd new products, including by doing regulatory work and using remote technology to retain patients in trials. Parexel has worked on nearly 300 covid-related studies in more than 50 countries, spokesperson Danaka Williams said.

Michael Fenne, research and campaign coordinator with the Private Equity Stakeholder Project, which studies private equity investments, said Parexel and other contract research organizations are beefing up their data capacity. The aim? To have better information on patients.

“It kind of ties into access and control of patients,” Fenne said. “Technology makes accessing patients, and then also having more reliable information on them, easier.”

KHN senior correspondent Fred Schulte and Megan Kalata contributed to this report.

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Treating Long Covid Is Rife With Guesswork

Blake Farmer, Nashville Public Radio — Tue, 22 Nov 2022 10:00:00 +0000

Medical equipment is still strewn around the house of Rick Lucas, 62, nearly two years after he came home from the hospital. He picks up a spirometer, a device that measures lung capacity, and takes a deep breath — though not as deep as he’d like.

Still, Lucas has come a long way for someone who spent more than three months on a ventilator because of covid-19.

“I’m almost normal now,” he said. “I was thrilled when I could walk to the mailbox. Now we’re walking all over town.”

Dozens of major medical centers have established specialized covid clinics around the country. A crowdsourced project counted . But there’s no standard protocol for treating long covid. And experts are casting a wide net for treatments, with few ready for formal clinical trials.

It’s not clear just how many people have suffered from symptoms of long covid. Estimates vary widely from study to study — often because the definition of long covid itself varies. But the more conservative estimates still count millions of people with this condition. For some, the lingering symptoms are worse than the initial bout of covid. Others, like Lucas, were on death’s door and experienced a roller-coaster recovery, much worse than expected, even after a long hospitalization.

Symptoms vary widely. Lucas had brain fog, fatigue, and depression. He’d start getting his energy back, then go try light yardwork and end up in the hospital with pneumonia.

It wasn’t clear which ailments stemmed from being on a ventilator so long and which signaled the mysterious condition called long covid.

“I was wanting to go to work four months after I got home,” Rick said over the laughter of his wife and primary caregiver, Cinde.

“I said, ‘You know what, just get up and go. You can’t drive. You can’t walk. But go in for an interview. Let’s see how that works,’” Cinde recalled.

Rick did start working earlier this year, taking short-term assignments in his old field as a nursing home administrator. But he’s still on partial disability.

Why has Rick mostly recovered while so many haven’t shaken the symptoms, even years later?

“There is absolutely nothing anywhere that’s clear about long covid,” said , an infectious disease specialist at the University of California-San Francisco. “We have a guess at how frequently it happens. But right now, everyone’s in a data-free zone.”

Researchers like Deeks are trying to establish the condition’s underlying causes. Some of the theories include inflammation, autoimmunity, so-called microclots, and bits of the virus left in the body. Deeks said institutions need more money to create regional centers of excellence to bring together physicians from various specialties to treat patients and research therapies.

Patients say they are desperate and willing to try anything to feel normal again. And often they post personal anecdotes online.

“I’m following this stuff on social media, looking for a home run,” Deeks said.

The National Institutes of Health promises big advances soon through the , involving thousands of patients and hundreds of researchers.

“Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment,” , director of the National Heart, Lung, and Blood Institute, told NPR. “It is important that we help find solutions for everyone. This is why there will be multiple clinical trials over the coming months.”

Meanwhile, tension is building in the medical community over what appears to be a grab-bag approach in treating long covid ahead of big clinical trials. Some clinicians hesitate to try therapies before they’re supported by research.

, who oversees more than 2,000 long covid patients at the Cleveland Clinic, said a bunch of one-patient experiments could muddy the waters for research. She said she encouraged her team to stick with “evidence-based medicine.”

“I’d rather not be just kind of one-off trying things with people, because we really do need to get more data and evidence-based data,” she said. “We need to try to put things in some sort of a protocol moving forward.”

It’s not that she lacks urgency. Englund experienced her own long covid symptoms. She felt terrible for months after getting sick in 2020, “literally taking naps on the floor of my office in the afternoon,” she said.

More than anything, she said, these long covid clinics need to validate patients’ experiences with their illness and give them hope. She tries to stick with proven therapies.

For example, some patients with long covid — a syndrome that causes them to get dizzy and their heart to race when they stand up. Englund knows how to treat those symptoms. With other patients, it’s not as straightforward. Her long covid clinic focuses on diet, sleep, meditation, and slowly increasing activity.

But other doctors are willing to throw all sorts of treatments at the wall to see what might stick.

At the Lucas house in Tennessee, the kitchen counter can barely contain the pill bottles of supplements and prescriptions. One is a drug for memory. “We discovered his memory was worse [after taking it],” Cinde said.

Other treatments, however, seemed to have helped. Cinde asked their doctor about her husband possibly taking testosterone to boost his energy, and, after doing research, the doctor agreed to give it a shot.

“People like myself are getting a little bit out over my skis, looking for things that I can try,” said , a pulmonologist who treats Rick Lucas at the long covid clinic at Ascension Saint Thomas in Nashville.

He’s trying medications seen as promising in and combinations of drugs used for . And he has considered becoming a bit of a guinea pig himself.

Heyman has been up and down with his own long covid. At one point, he thought he was past the memory lapses and breathing trouble, then he caught the virus a second time and feels more fatigued than ever.

“I don’t think I can wait for somebody to tell me what I need to do,” he said. “I’m going to have to use my expertise to try and find out why I don’t feel well.”

This story is from a reporting partnership that includes , , and KHN.

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KHN’s ‘What the Health?’: The Midterm Shake-Up

Thu, 10 Nov 2022 19:50:00 +0000

Can’t see the audio player? You can also listen on , , , , or wherever you listen to podcasts.

Click here for a transcript of the episode.

The predicted Republican “red wave” was a no-show in this week’s midterm elections, but the margins in both the U.S. House and Senate are so small that the GOP could still wrest control from the Democrats as the last few “too close to call” races are settled. Whichever party holds the majority starting in 2023 will also influence how much Congress tries to finish during its lame-duck session that starts Nov. 14.

Meanwhile, supporters of abortion rights won big. Voters in three states (Michigan, California, and Vermont) approved ballot measures to make abortion rights part of their state constitutions, while two other states (Montana and Kentucky) defeated efforts to further restrict abortion.

This week’s panelists are Julie Rovner of KHN, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Sarah Karlin-Smith of the Pink Sheet.

Among the takeaways from this week’s episode:

If Republicans take control of the House, expect some tough oversight hearings on the Biden administration’s policies and decisions. Among those who might be called before Republican-controlled committees is Dr. Anthony Fauci, who is expected to be grilled for decisions on handling the pandemic and the shutdown of schools and other key elements of the economy.

The GOP’s focus on legislative matters is murkier. Much of what Republicans can push through Congress will depend on what margin they have in the House and whether they end up taking control of the Senate.

In the meantime, Congress comes back to Washington next week to finish business for this year. Several top-ranking Republican senators are retiring, and they are expected to promote health measures, including more public health initiatives, pandemic preparations, and reforms at the FDA.

That lame-duck congressional session will also consider funding for the government and ways to avoid a scheduled cut in Medicare reimbursements to health care providers.

Voters in South Dakota on Tuesday approved a ballot measure to expand Medicaid under the Affordable Care Act. It is the seventh state where voters overruled conservative Republican leaders who had opposed an expansion.

Officials in several populous states, including Texas, Florida, and Georgia, continue to block an expansion. Some health care advocates in Florida have floated the idea of trying to get a ballot initiative going there too, but it would likely cost millions of dollars to organize.

Doctors and consumers are warning of recent medication shortages, including a common children’s antibiotic. This points to a long-term problem with drug shortages that often goes overlooked.

A recent Wall Street Journal article focused on the damaging impact of covid-19 and long covid on productivity in the country. Although patient advocates and public health officials have long been ringing this alarm, the issue has not gotten much attention from political leaders. With Republicans likely gaining more power in the next Congress — and their opposition to more funding for covid prevention — it does not appear likely that the long-term economic effects will gain much support in the coming year.

Also this week, Rovner interviews Carolee Lee, a former jewelry magnate, about her efforts to boost gender equity in medical research.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read, too:

Julie Rovner: Columbia Journalism Review’s “” by Kyle Pope

Alice Miranda Ollstein: PBS NewsHour’s “,” by John Yang and Dorothy Hastings

Sarah Karlin-Smith: The Washington Post’s “,” by Dan Diamond

Rachel Cohrs: ESPN’s “,” by Mark Fainaru-Wada

Also mentioned in this week’s episode:

The Wall Street Journal’s “” by Gwynn Guilford and Lauren Weber

To hear all our podcasts,��click here.

And subscribe to KHN’s What the Health? on , , , , or wherever you listen to podcasts.

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People With Long Covid Face Barriers to Government Disability Benefits

Betsy Ladyzhets — Wed, 09 Nov 2022 10:00:00 +0000

When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.

Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

“We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.

The Biden administration to people with long covid, but patient advocates say many are struggling to get government help.

The Centers for Disease Control and Prevention , as a “range of ongoing health problems” that can last “weeks, months, or longer.” This description includes people, like Taveras, who cannot work, as well as people with less severe symptoms, such as a long-term loss of smell.

The Social Security Administration has identified about 40,000 disability claims that “include indication of a covid infection at some point,” spokesperson Nicole Tiggemann said. How many people with long covid are among the awaiting processing by Social Security is unknown.

In recent months, about 5% of new disability claims filed by Allsup, an Illinois-based firm that helps people apply for Social Security, involved people dealing with covid, said T.J. Geist, a director at the firm. Other firms report similar figures.

The long waits for disability assistance often end in denial, in part because long covid patients don’t have the substantial medical evidence that federal officials require, Geist said. There is no standard process for diagnosing long covid. Similarly, Social Security “has yet to give specific guidance on how to evaluate covid claims” for the government officials who review applications, he said.

A recent report from the Brookings Institution estimates that because of long covid. A study published in September by the National Bureau of Economic Research at 500,000.

Advocates suggest that many people with long covid have yet to recognize their need for government benefits and could start applying soon.

“I did not understand that I was disabled for four years because my ability would fluctuate so much,” said Alison Sbrana, a patient-advocate with the long covid support group . She has a chronic disease whose symptoms are similar to long covid’s in many cases and has received Social Security disability payments for several years.

“If you apply my timeline to people with long covid, even people who got sick in early 2020, we’re not going to know the full extent of their ability to work or not until 2024,” she said.

In July 2021, the Department of Health and Human Services formally . Expanding on the recognition, the department and the White House in August 2022 that summarizes the “services and supports” available for people with long covid and others who have experienced long-term impacts from the pandemic.

But accessing support is not as simple as White House announcements may suggest. First, the July 2021 guidance recognized long covid under the Americans with Disabilities Act but didn’t extend to the Social Security Administration, which runs benefit programs.

Under the ADA, long covid patients who can still work may ask their employers for accommodations, such as a space to rest or a more flexible schedule, said Juliana Reno, a New York lawyer who specializes in employee benefits. Social Security, however, has more stringent standards: To receive disability insurance, people must prove their long covid symptoms are so debilitating that they cannot work.

“The application process is very demanding, very confusing for patients,” Sbrana said. “It also entirely depends on you having this substantial breadcrumb trail of medical evidence.”

Most applications are denied in the first round, according to Sbrana and other advocates. Patients typically appeal the decision, often leading to a second denial. At that point, they can request a court hearing. The entire process can take a year or more and usually requires legal assistance.

The pandemic extended these wait times, as Social Security offices closed and did not quickly shift to remote operations. Moreover, common symptoms such as can make filling out online applications or spending hours on the phone with officials difficult.

Long covid patients who were hospitalized with severe symptoms can submit paperwork from those hospital stays and are more likely to receive benefits, Geist said. But for the people who had mild cases initially, or who have “invisible-type symptoms” like brain fog and fatigue, Geist said, documentation is more difficult. Finding a doctor who understands the condition and can sign off on symptoms may take months.

Amanda Martin, a long covid patient and advocate, is one of those lost workers. Martin got covid in April 2020 while working as a subcontractor for the U.S. Navy and lost that job when they were unable to recover quickly.

At first, unemployment benefits provided support, but Martin’s symptoms — including intense fatigue and brain fog — continued. More than two years after the initial infection, Martin is still “on bed rest 90% of the time,” they said. Martin receives food stamps and Medicaid but doesn’t have help paying for other essentials, such as gas. Their application for federal disability benefits has been denied twice.

“I am currently a year into the [application] process; I have eight to 11 months remaining,” Martin said. “I have $50 in my savings account.”

Many people with long covid don’t have the financial resources to hire a lawyer — or access to a doctor who can help with their documentation, which makes the situation even tougher.

Patient advocacy organizations are pushing for a more efficient application process, specific guidance for officials who evaluate long covid cases, and faster eligibility for Medicare coverage after a disability application is approved. (The typical wait is two years.)

The organizations also serve as support groups for people with long covid, sharing resources and providing reassurance that they aren’t alone. Some organizations, such as the nonprofit Blooming Magnolia, even . But patients say these efforts don’t come close to the scale of funding needed.

Taveras, the Brooklyn mom, said she knows many other people who are grappling with similar issues. “We’re trying to get support from the government, and we’re not getting it,” she said. page to request support for her family.

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