The Biden administration on Tuesday announced a new plan for HHS to coordinate studying long Covid and support the millions of Americans suffering from the condition.
Case study: Recovery clinics for Covid-19 long-haulers
As part of the plan, HHS will expand upon a $1 billion research study of long Covid underway at NIH, called the RECOVER Initiative, to better understand long Covid, with the goal of adding an additional 40,000 volunteers to the study. The administration also plans to ask Congress for $25 million in research funding to understanding the condition, and HHS will deliver a report on long Covid later this year.
The administration also noted that long Covid appears to qualify as a disability, meaning patients affected by the disease could be protected by various federal laws applying to those with disabilities.
"The administration recognizes that the Covid-19 pandemic has resulted in new members of the disability community and has had a tremendous impact on people with disabilities," the White House said in a statement.
As part of the plan, the Department of Labor will expand a pilot program helping workers experiencing injuries or illnesses including long Covid.
The plan also calls on the Agency for Healthcare Research and Quality to investigate best practices for treating long Covid and provide guidance to health care providers and patients. According to the plan, the Department of Veterans Affairs, which currently has 18 facilities with long Covid programs, will serve as an incubator for new ideas.
The administration will also request $20 million from Congress for "centers of excellence" to develop templates for caring for long Covid patients and will require federal insurance programs to cover care related to long Covid.
The initiative will also focus on mental health. The plan calls on the Substance Abuse and Mental Health Services Administration to study the mental health effects of long Covid, and provide mental health resources for patients.
"We see you, we are focused on you, and we're committed to advancing our nation's capacity to understand and treat your conditions," said HHS Secretary Xavier Becerra.
Experts praised the administration's initiative, with Diana Berrent, founder of Survivor Corps, a support group connecting long Covid patients with researchers, saying the initiative is "the first effort that truly comports with the needs of people who are suffering."
Advocates have been asking "the government to create a command center for long Covid," Berrent said. "Up until now, that hasn't existed."
Berrent added she believes the initiative is "a global, comprehensive approach to an extremely thorny issue that has previously received a scattershot approach."
Kristin Englund, an infectious disease physician who leads a long Covid center at the Cleveland Clinic, said she believes the initiative could make a significant difference for her patients.
Recovering from long Covid can take a long time, and can require physical therapy, pulmonary rehabilitation, cognitive retraining, and mental health support, Englund said. The fact the Biden administration is acknowledging the condition and the challenges associated with it is validating for patients, she added.
"This recognition by the federal government also gives me the ability to go to the powers that be at my own institution and say 'I need help and we need to be able to reach more people,'" Englund said.
Leana Wen, former Baltimore health commissioner, praised the initiative and said it's been needed for a long time.
"This is a very important move on the part of the Biden administration to acknowledge that long Covid is real, that it is a significant threat, and that much more needs to be done," she said. "The emphasis on treatment for long Covid, and recognizing that this could be a source of ongoing disability, are long overdue."
However, some say more needs to be done. Ezekiel Emanuel from the University of Pennsylvania said the initiative is a "good step in the right direction … but it needs to be bigger and faster."
"We are talking about $20 million to cover building out care coordination strategies for a mass disabling event that is affecting an estimated at least 2 percent of all Americans with a multisystem, multi-organ condition," said David Putrino, director of rehabilitation innovation for Mount Sinai Health System.
"This is complex care — $20 million doesn’t get you very far." (Alonso-Zaldivar/Miller, Associated Press, 4/6; Clason, Roll Call, 4/5; Weintraub, USA Today, 4/5; Cohrs, STAT News, 4/5; Diamond/Sellers, Washington Post, 4/5)
Several health systems have set up dedicated recovery clinics to help treat and coordinate care for long-haulers. This resource provides an overview of Covid-19 recovery clinic models pioneered by two early adopters—The University of Iowa Hospitals and Clinics and the University of Pennsylvania Medicine—and considerations for assessing whether it is a model you should pursue.
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