Hundreds of millions of dollars would go toward efforts to diagnose and treat people suffering long-term Covid symptoms under funding plans put forth by the Biden administration and lawmakers.
The proposals would aid Americans still struggling with fatigue, brain fog, and other ailments of long Covid, and come as the health system prepares to exit the pandemic state.
Health and policy experts say long Covid is still a daily burden for an estimated 10 million to 35 million working-age adults, and that the medical professionals treating them are often lacking in education on the condition as well as resources to treat it.
“As the public starts to live a normal life and, in essence, forget about Covid, we shouldn’t forget that there are millions of people suffering,” Linda Geng, co-director of Stanford University’s Post-Acute COVID-19 Syndrome Clinic, said.
Geng said there’s no established care or therapy for the condition—a “huge issue” given its toll on work and quality of life
The Biden administration is taking a stab at filling the void. In his fiscal 2024 budget request, President Joe Biden pitched Congress on $130 million for the Health and Human Services Department for long Covid programs that would help rural communities, low-income Americans with HIV, and others. The funds would filter through the HHS’ Health Resources and Services Administration, which serves hundreds of millions of low-income people.
The administration has requested another $130 million for the HHS’ Indian Health Service to treat and diagnose long Covid in 2025.
Meanwhile, several bills have been introduced in Congress that would fund long Covid research and treatment education.
However, lawmakers and others warn that concerns over spending could complicate getting those efforts off the ground.
Rep. Don Beyer (D-Va.), who is among a bipartisan group of House lawmakers behind one of those bills, said there’s “a yin and a yang” with support for long Covid legislation.
“The appetite on the positive side is this affects constituents in every one of our districts,” Beyer said. “On the yang side, we’re looking at this debt ceiling.”
Democrats and Republicans have yet to agree on whether to increase the US debt limit or limit federal spending.
Funding Research, Specialty Care
Congress in late 2020 approved over $1 billion for the HHS’ National Institutes of Health to study Covid’s long-term effects. In his budget request, Biden is pushing for $19 million for the Agency for Healthcare Research and Quality to keep researching long Covid care delivery. That’s $9 million over last year’s FY 2023 enacted budget amount.
Meanwhile, the HHS said this month that it would issue a funding opportunity to broaden access to long Covid care, with a special emphasis on serving minority, rural, and other underserved communities.
The HHS has also funded a distance learning platform through the Centers for Disease Control and Prevention; begun examining a long Covid federal interim working definition alongside the National Academies of Science, Engineering and Medicine; and undertaken other efforts.
The HRSA funding would be the agency’s first to specifically address long Covid. Those dollars “would support integrated specialty care for patients with Long COVID who have complex needs,” including the uninsured and underinsured, a HRSA spokesperson said.
Funding also would go toward primary care provider training—an area policy experts find lacking when it comes to long Covid treatment.
“A lot of people with long Covid don’t know they have long Covid and are going to see providers that don’t know about long Covid,” said Michael Sieverts, a patient advocate and member of the Long-COVID Alliance.
According to a 2022 NIH publication, many individuals with long Covid found their health-care professionals unable to diagnose or treat them. They were also frustrated with health-care professionals’ struggle to answer questions about their illness.
When seeing doctors for long Covid, Sieverts said he was the one bringing them information on the condition, including printed out studies conducted by the NIH.
“I knew more than they did,” Sieverts said. “I was a resource to them.”
Individuals with fewer resources may struggle to access the information needed to talk doctors through the symptoms that may prove to be long Covid. The doctors that serve them may likewise be strapped for the resources needed for a proper diagnosis.
Under HRSA funding, there’s “a pretty diverse group of people that would be served,” said Alice Burns, associate director of the Kaiser Family Foundation’s Program on Medicaid and the Uninsured.
Rural communities, low-income Americans, and other vulnerable populations are among those served by the agency. The agency supports 30 million people in underserved communities, along with 58 million children, infants, and pregnant people.
HRSA funding would include new educational materials that would be useful for providers— a “big void right now,” Sieverts said.
This, along with the funding sought for the Indian Health Service, suggests the administration is trying to help providers serving “populations that are not getting access” to academic research institutions, private clinics, and larger organizations that may be more familiar with treating long Covid, Burns said.
Beyond at-need communities, there’s “a demand versus capacity issue across the board” for long Covid care, Geng said. She noted her clinic, for example, has “wait lists for a year out.”
Lawmakers are pushing for more resources. In March, a trio of Democratic senators reintroduced the Comprehensive Access to Resources and Education (CARE) for Long COVID Act (S. 801).
The bill directs the HHS secretary to create and regularly put out long Covid information to the public using plain language. That would include information on long Covid’s long- and short-term health effects, available treatment options, and ways to limit the likelihood of developing long Covid.
The legislation would also direct the HHS to award grants to help low-income individuals and those in need with long Covid. “So often the communities of color are overlooked,” Duckworth said. “Women are overlooked.”
As to why the bill didn’t move forth in the previous Congress, Sen. Tammy Duckworth (D-Ill.), who co-introduced it, said “there’s a lot of people who don’t want to deal with the cost of it.”
In its current form, the bill would authorize the spending of over $150 million.
But she warned that not passing such legislation would result in severe economic costs down the road.
Of the millions of working-age adults with long Covid, fewer than half who were working pre-infection returned to work full time after, according to the Kaiser Family Foundation.
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