By Lydia Wheeler
Millions of people suffering from long Covid got a big win this week with news that the government is launching specialized treatment clinics, but the funding budgeted likely isn’t enough.
Though there are over 200 post-Covid clinics across the country to care for people with the constellations of conditions known as long Covid, there’s no standard for the treatment they provide, and some aren’t actually helping patients. The memorandum President
“Centers of Excellence in general is the best practices model for misunderstood diseases,” 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 one condition many people with long Covid have.
Biden specifically called for interim clinical guidance, so not only will these Centers of Excellence provide top-tier care, they’ll then share that standard, educate others, “and start to dismantle this Wild West we have of post-Covid care clinics,” she said.
The memo also calls for more education, research, and support services. While patient advocates were happy to see the White House take action to help people suffering from long Covid, they say the plan is missing a key component of federal legislative proposals: money.
For the Centers of Excellence, “$20 million is really a drop in the bucket for what’s needed,” said Lisa Simpson, president and CEO of AcademyHealth, who served as deputy director of the Agency for Healthcare Research and Quality from 1996 to 2002.
“It’s kind of a bare minimum, but it is a down payment, I think, for the type of work that is needed.”
The White House tapped the AHRQ to set up these specialty clinics across the country, which will be created by partnering with private-sector providers that have already established multidisciplinary long Covid clinics, Simpson said. How many centers the initial investment will provide depends on how they’re designed.
“Not enough for starters,” she said, which is why she thinks it’s important to make sure they’re reaching patients in rural areas, who don’t have access to major health-care systems.
The AHRQ didn’t answer questions about how many centers it will be able to create with the initial investment or how soon they will open. In an email, the agency said it’s in the early planning phase of implementing this project and will have more details to provide in the near future.
Debilitating fatigue, difficulty breathing, and cognitive issues that last long after an initial Covid-19 infection are just a sprinkling of the issues that fall under the umbrella of long Covid. The government is still trying to figure how many people have long Covid and could get it despite vaccines. A Government Accountability Office report last month said there could be anywhere from 7.7 million to 23 million people with it now.
Cynthia Adinig, a long Covid patient turned advocate, is annoyed it took the White House this long to release a plan since it’s been over a year since the administration formed the COVID-19 Health Equity Task Force.
“We could be one year into all the things that they proposed,” she said, adding that more patient advocates should have been included in the task force, which recommended the actions Biden took in Tuesday’s memo.
“I love the proposals. They’re great. They’re way too late,” she said.
While it’s a good start, patient advocates say Biden’s memo doesn’t provide enough support for clinical trials on treatments.
“I briefed the White House 10 days ago in advance of this and I said ‘If the Covid fairies granted me one wish it would be for immediate increased funding for clinical trials,’” said Diana Berrent, founder for Survivor Corps, a patient advocacy group which helped the Biden administration draft this memo. “That is where you are going to find answers, treatments, and therapeutics.”
In December 2020, Congress allocated $1.15 billion over four years for the National Institutes of Health to study the long-term consequences of Covid-19, but Berrent said treatments are not what the NIH study is focused on.
Berrent, however, fully supports the administration’s memo, specifically its efforts on mental health. Biden called on the Substance Abuse and Mental Health Services Administration to collaborate with long Covid experts and policy advocates to advance the understanding of the mental health effects of Covid-19 and promote high-quality mental and behavioral health-care services.
Though more funding is needed, Berrent said the White House can’t just magically produce more money. That’s why she’s pushing Congress to include funding for clinical trials in appropriations requests and allocate more money to support people with long Covid.
“It’s all about the Benjamins,” she said. “We need Congress to do their job and fund this.”
—With assistance from Jeannie Baumann
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By Lydia Wheeler