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Official U.S. Long Covid-19 Data Two Years Away, Hurts Research

March 21, 2022, 6:29 PM

Lawmakers want data from public health officials on the prevalence of long Covid, but the Centers for Disease Control and Prevention won’t have it for another two years.

Reps. Don Beyer (D-Va.) and Ayanna Pressley (D-Mass.) asked the CDC in a January letter to publicly release their findings on how many people have long Covid and to break that data down by race, ethnicity, age, gender, previous disability, and other demographic characteristics.

Aaron Fritschner, a spokesman for Beyer, said his office got a briefing from the agency in response and were told the CDC “would not internally have a dataset from which they could publicly post disaggregated data for two years.”

The lawmakers’ aides weren’t provided any data at all.

Though private studies have tried to nail down how many people actually have long Covid and how many more could get it in the future, lawmakers say numbers from a trusted source like the CDC could help convince Congress to pass more funding for research and new aid for support services.

Trusted Source

Long Covid is a catch-all term for the constellation of health conditions caused by Covid-19, some of which are so severe they’ve left people unable to work. There’s a real concern the pandemic will leave a whole population of people who can’t work. The Government Accountability Office said in a March 2 report that this could affect the broader U.S. economy through decreased labor participation and an increased need for use of Social Security disability insurance or other publicly subsidized insurance.

By some estimates, there could be anywhere from 7.7 million to 23 million people who have developed these new, recurring, or ongoing health conditions like debilitating fatigue, difficulty breathing, and cognitive issues, since their initial Covid-19 infection, the GAO report said.

One of the most cited studies, by researchers at Oxford University in the U.K., found one-third of people who contracted Covid-19 in 2020 had one or more symptoms three to six months after they first got sick. That finding was based primarily on data from public health records of patients in the U.S. Other studies have shown the Covid-19 vaccines reduced the risk of developing long Covid.

In an interview, Beyer said official statistics are better than private research, even though the existing studies are good and useful.

“Regardless of what CDC does, we will continue to use them to press forward, but CDC always gives it that additional sense of legitimacy,” he said. “One of the fears with a private study is that there may have been an agenda going in. Who was it funded by and why did they fund it?”

Patient advocates say lawmakers listen to data sources with different levels of voracity.

“The government sources that come from internally are generally considered with the highest respect,” said Emily Taylor, vice president of advocacy and engagement at Solve M.E., a group that advocates for patients with post-infection illnesses and myalgic encephalomyelitis, commonly known as chronic fatigue syndrome. It’s a condition that’s reported by many people with long Covid.

Through its Long Covid Initiative, Solve M.E. plans to release a white paper in the coming weeks that estimates 31.9 million adults in the U.S. have long Covid and 9.5 million of them are disabled by it. The group feels its expertise in M.E. is an asset to studying long Covid, but Taylor understands others might feel they’re looking at it from a particular perspective.

While private studies are helpful and validating, she said, it needs to be the government that publishes the definitive work.

Funding Proposed

In December 2020, Congress provided $1.15 billion in funding over four years for the National Institutes of Health to study the long-term consequences of Covid-19. The NIH gave New York University Langone Health $470 million to set up a national network of large-scale studies called the NIH Researching COVID to Enhance Recovery (RECOVER) Initiative.

In an email, an NIH spokesperson said RECOVER is working to understand the pathology of long Covid and directed Bloomberg Law to the CDC for more specific data on its prevalence.

The CDC didn’t respond to a request for comment.

Bills have been introduced in the House and Senate to appropriate more money to research and to educate doctors about long Covid. One proposal would provide grant funding for community-based organizations to help long haulers with legal matters, get public benefits like Social Security disability insurance, or deal with housing issues.

Beyer proposes $93 million in his Covid-19 Long Haulers Act (H.R. 2754). In the Senate, Sen. Tim Kaine (D-Va.), who has mild long Covid symptoms himself, asks for $155 million in the CARE for Long Covid Act (S. 3726) in 2023, another $110 million in both 2024 and 2025, and $50 million in both 2026 and 2027. Two provisions of the bill were included in a legislative package (S. 3799) that advanced out of the Senate Health, Education, Labor, and Pensions Committee last week. One directs the Health and Human Services Department to identify and develop tools and strategies to care for people with long Covid. The other requires annual reports to Congress on research.

“This legislation will help improve our understanding of and response to long COVID by expanding resources for those dealing with the long-term impacts of the virus,” Kaine said in a statement. “I am pushing to better understand the number of people experiencing long COVID to help ensure that our response is robust enough to reach all those in need.”

Congressional Priorities

Even if lawmakers get the data they’re looking for from public health officials, additional funding for long Covid isn’t guaranteed.

The White House asked for $22.5 billion in immediate emergency funding to respond to the pandemic, but Congress failed to include any Covid relief money in the recent omnibus bill. Without that money, the White House said the government can’t afford to buy more monoclonal antibody treatments, purchase enough booster shots for all Americans if additional doses are needed to combat a new variant, or reimburse doctors for vaccinating and treating uninsured patients.

Democrats now say they will seek to pass a separate response bill. It’s unclear if that legislation would include funding to research and support people with long Covid.

Though it takes time for health officials to collect data on an emergent disease, there’s enough evidence now to suggest this is a very serious concern that needs additional study, said Elizabeth Pendo, a health law and ethics professor at the Saint Louis University School of Law.

“I don’t think we have to know everything before we do something,” she said.

To contact the reporter on this story: Lydia Wheeler in Washington at lwheeler@bloomberglaw.com

To contact the editors responsible for this story: Karl Hardy at khardy@bloomberglaw.com; Fawn Johnson at fjohnson@bloombergindustry.com