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Facing the lingering shadow of the pandemic, President Joe Biden on Tuesday ordered a new national study of the long-term COVID-19 disease, while also directing federal agencies to support patients dealing with the mysterious and debilitating disease.
Biden assigned the Department of Health and Human Services to coordinate an urgent new initiative among federal agencies, building on research already underway at the National Institutes of Health.
He also directed federal agencies to support patients and physicians by providing science-based best treatment practices. Corona Virus, maintain access to insurance, and protect the rights of workers dealing with the uncertainty of discomfort. Of particular concern is the impact on mental health.
COVID-19 is an umbrella term for a multi-headed disease that symptom May include brain fog, recurring shortness of breath, pain, and fatigue. Roughly estimated, it affects up to one-third of people who recover from COVID-19, although the severity and duration of symptoms vary. Despite intensive investigation, the cause of long-term COVID is unknown, and treatment has largely focused on helping patients cope with symptoms as they try to rebalance their daily lives.
The White House also acknowledged that chronic exposure to the coronavirus appears to be a disability, meaning patients may be entitled to protections under federal law that prohibits discrimination based on health status and called for accommodations that allow people to lead productive lives.
“The Administration recognizes that the COVID-19 pandemic has led to new members of the disability community and has had a disproportionate impact on people with disabilities,” the White House outlined.
Some independent experts praised the government’s comprehensive plan, but pointed to the lack of a timetable for results.
“This is a very important move by the Biden administration, acknowledging that long-term COVID is real, it’s a significant threat, and more needs to be done,” said Dr. Leana Wen, a former Baltimore health commissioner and commentator on the pandemic. “The emphasis on long-term COVID treatment and the recognition that this may be a source of persistent disability is long overdue.”
A prominent COVID patient advocate felt a breakthrough.
“This is the first real effort to address the needs of the suffering population,” said Diana Berrent, founder of Survivor Corps, a support group that connects patients with government and private researchers.
She added that advocates have been calling for “the government to create a command center for long-term COVID.” “So far, that doesn’t exist.”
“I see this as a global, comprehensive approach to an extremely difficult problem that was previously addressed by a rambling approach,” Berrent said.
Medical research to date has led to theories about what causes long-term COVID, but there is no single root cause. One theory revolves around lingering infections or viral remnants that could trigger inflammation in the body. Another possibility involves an autoimmune system response that mistakenly attacks normal cells. The researchers are also studying the role of the tiny clots.
The White House said Biden’s order would expand and build on a $1 billion research study already underway at the NIH called the Recovery Plan. One goal is to expedite the study of 40,000 people with and without long-term COVID. Around this work, HHS will coordinate a government-wide research program on long-term COVID.
HHS will also submit a national report on chronic COVID later this year. “Millions of Americans may be battling lingering health effects,” said HHS Secretary Xavier Becerra. “COVID had its impact long after the real virus had left us.”
Biden’s order focuses on treatment. An HHS division called the Agency for Healthcare Research and Quality will investigate best practices and provide helpful guidance to physicians, hospitals, and patients. The Department of Veterans Affairs already has 18 facilities running long-term COVID programs that will serve as incubators for ideas and strategies. The administration is seeking $20 million from Congress for a “center of excellence” to develop a nursing template.
Dr. Fernando Canavali, of the Mount Sinai Post-COVID Care Center in New York, said he understands complaints that the government isn’t making enough progress on long-term COVID.
“For our culture today, it’s hard to have answers yesterday,” Carnavali said. “In chronic diseases in general it doesn’t work that way. We have other examples, like HIV, where the answer doesn’t come right away.”
Finally, the administration said its plan would provide direct support to patients by guaranteeing access to insurance and extending civil rights protections to those with chronic COVID-19 infections. Consistent with Biden’s focus on reducing racial and ethnic disparities in health care, part of the focus will be on minority communities disproportionately affected by COVID-19.
Federal health plans that can serve as models for private insurance will look for ways to ensure coverage and pay for long-term COVID treatment. “The administration is working to make long-term COVID care as accessible as possible,” the White House said of an overview of Biden’s plan.
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