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Federal reports on long Covid fall short of offering solid plans to help patients

The Biden administration pledged to set up an office dedicated to long Covid, but offered no details on how to pay for it.
Eve Efron, who has been struggling with long Covid, frequently has to rest on the couch in her home in Fairfax, Va., on Feb. 3, 2022. Her symptoms include significant fatigue, brain fog, anxiety and depression.
Eve Efron, who has long Covid and has to rest frequently, is seen on the couch in her home in Fairfax, Va., on Feb. 3, 2022. Her symptoms include significant fatigue, brain fog, anxiety and depression.Carolyn Van Houten/The Washington Post / via Getty Images file

Two highly anticipated federal reports on long Covid released Wednesday fail to address the immediate needs of patients, according to doctors and advocacy groups. They also say the reports neglected to include many of their recommendations for how to address the long Covid crisis.

The reports, produced in response to an executive order from President Joe Biden, go into great detail about all that remains unknown about long Covid that affects up to 23 million Americans, including the cause, effective treatments or even a specific definition of the illness. 

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And while the reports do commit to establishing a long Covid office within the Department of Health and Human Services to answer those questions, the reports offer no details on how such an office would be funded and staffed, nor do they offer any timeline for such a setup.

Advocacy groups say that while the reports are a good start, they are woefully inadequate in addressing the very questions patients and their physicians have had for more than two years, when long Covid was first identified.

"This is catching up to where we needed to be a long time ago," said Kristin Urquiza, a co-founder of the group Marked by Covid. "We don't have time to continue to wait."

According to the U.S. Government Accountability Office, anywhere from 7.7 million to 23 million people in the country have some form of long Covid. Up to a million of those people are estimated to be out of work because of their ongoing illness.

Urquiza and other members of Marked by Covid had been included on multiple calls between the administration and grassroots Covid advocacy groups ahead of Wednesday's release. Recommendations from such groups, such as the establishment of a formal patient advocacy committee to guide the government's response, were not included in the new reports.

"I think that there's an intent to be heard," she said of the reports, "but I don't think we're actually being heard." 

One of the HHS reports details the various ongoing federal research projects on long Covid, and the other is meant to provide an outline of what is needed to help support long Covid patients moving forward.

In that second report, HHS calls for an office of long Covid research and practice to be established within the agency to coordinate efforts among the government, physicians and long Covid patient advocacy groups.

Angela Meriquez Vazquez, president of the long Covid advocacy group Body Politic, called the announcement of such an office "unexpected and quite historic."

"This feels like a long-term commitment from the administration," she said.

But it remained unclear whether money and resources are available to accomplish this, and an HHS spokesperson told NBC News that the agency had no further details to add.

"It is high time for the government to wrap its collective head around the immensity of the problem at hand," Diana Berrent, founder of the advocacy group Survivor Corps, said in an email. "A call to action without funding is a cry into the dark. Long Covid patients are suffering and need immediate relief; this announcement is a placeholder not an answer."

What's more, the government's flagship, billion-dollar long Covid research project, led by the National Institutes of Health, has received criticism for its slow uptick in getting patients to sign up.

The Recover project started recruiting participants in October, with the goal of including 20,000 adults with long Covid.

As of Wednesday, just 5,904 adults with prior Covid had signed up, as well as 755 others never diagnosed with the illness to serve as a control group.

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"We've had a billion dollars allocated to this for a couple of years now. We should have much more rapid progress," said Dr. Ezekiel Emanuel, vice provost for global initiatives at the University of Pennsylvania. "The sense of urgency isn't there."

He is one of the outside experts who's been tapped to offer guidance to HHS on its long Covid response over the past eight months.

Emanuel said he and his colleagues recommended the agency move toward more innovative approaches to finding answers to long Covid, particularly projects that aim to treat the illness.

While the goal of Recover is to understand the underlying biology of long Covid, he said he called for clinical trials far more expansive, including at least 400,000 people. "There are millions of people out there who are suffering from this illness and are very desperate and would be willing to try things, especially established therapies."

Those ideas were rejected by the HHS team ultimately in charge of writing the new reports.

In a press release, HHS Assistant Secretary for Health Dr. Rachel Levine said that "the Biden-Harris Administration is committed to combating and responding to the Covid-19 pandemic with the full capacity of the federal government."

"These initial reports are an important step as HHS continues to accelerate research and programmatic support to address the consequences of the pandemic and work across sectors to ensure no one is left behind as we continue to build a healthier future," said Levine, who is an admiral in the U.S. Public Health Service Commissioned Corps.

The administration also committed to continuing communications with physicians and advocacy groups.

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