New National Investigation Efforts Focus on Mysteries of Long-Term COVID

Facing the enduring shadow of the pandemic, President Joe Biden has ordered a new national investigation into long-term COVID, while also directing federal agencies to support patients dealing with the mysterious and debilitating condition.

Biden on Tuesday assigned the Department of Health and Human Services to coordinate an urgent new initiative by federal agencies, build 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 practices for treating long-term COVID, maintaining access to insurance coverage, and protecting the rights of workers coping with the uncertainties of the malaise. Of particular concern are its effects on mental health.

Long COVID is the collective term for a fluid-headed condition whose symptoms can include brain fog, recurrent shortness of breath, pain, and fatigue. Rough estimates are that it affects as many as 1 in 3 people recovering from COVID-19, although the severity and duration of symptoms vary. Despite intensive research, the causes of long-term COVID are not well understood.

Long-term COVID can develop even after an infection that initially seemed mild, and the symptoms often interfere with activities of daily living.

“They avoid taking care of their families and not even going to work. Some patients can’t even get out of bed,” said Dr. Rachel Welbel, a physical medicine and rehabilitation specialist at Advocate Christ Medical Center, told CBS Chicago

Until now, treatment has largely focused on helping patients cope with their symptoms while trying to rebalance daily routines.

“Because every patient is very, very complicated and everyone has had a very different course, we use specific therapies, such as speech therapy, physical therapy, occupational therapy. We focus on different drugs and supplements and a lot of education,” Welbel said.

The White House also acknowledged that long-term COVID appears to be a disability, meaning patients could be entitled to the protection of federal laws that prohibit discrimination based on health conditions and require adjustments to allow people to lead productive lives. .

Long COVID patient Kathy Spencer
At her kitchen table on January 14, 2022 in Kensington, Connecticut, Kathy Spencer sorts through the dozens of pills she has had to take since she contracted COVID in November 2020. Spencer was a teacher who loved swimming, sports and long distance motorcycling. Since she became ill in November 2020, she has had serious lung problems and has needed oxygen 24 hours a day.

Mark Mirko/Hartford Courant/Tribune News Service via Getty Images

“The administration recognizes that the COVID-19 pandemic has resulted in new members of the disability community and has had a huge impact on people with disabilities,” said a White House statement.

Some independent experts praised the administration for its comprehensive plan, but noted that there was no timetable for the results.

“This is a very important step by the Biden administration to recognize that COVID has long been real, that it is a significant threat and that much more needs to be done,” said Dr. Leana Wen, a former Baltimore health commissioner. and commentator on the pandemic. “The emphasis on treating long-term COVID and the recognition that it could be a source of ongoing disability is long overdue.”

A prominent advocate for COVID patients felt a breakthrough.

“This is the first effort that truly addresses the needs of those who are suffering,” said Diana Berrent, founder of Survivor Corps, a support group that connects patients with government and private researchers.

Proponents have urged “the government to create a command center for long-term COVID,” she added. “Until now, that didn’t exist.”

“I see this as a global, comprehensive approach to an extremely thorny issue that has previously been given a scattered approach,” Berrent said.

Medical research so far has led to theories about the causes of long-term COVID, but not a single root. One theory revolves around persistent infection or virus residues that can cause inflammation in the body. Another possibility involves reactions of the autoimmune system that accidentally attack normal cells. Researchers are also investigating the role of small clots.

The White House said Biden’s order will expand and build on a $1 billion investigation already underway at NIH called the RECOVER initiative† One goal is to accelerate the enrollment of 40,000 people with and without long-term COVID to the study. Around this effort, Health and Human Services is coordinating a government-wide research plan into long-term COVID.

HHS will also provide a long-term COVID report to the nation later this year. “Millions of Americans may be struggling with lingering health effects,” said HHS Secretary Xavier Becerra. “COVID has effects long after the actual virus has escaped us.”

Biden’s order puts a lot of emphasis on treatment. An HHS unit called the Agency for Healthcare Research and Quality will examine best practices and provide helpful guidance to physicians, hospitals and patients. The Department of Veterans Affairs, which already operates 18 facilities long COVID programs, will serve as a breeding ground for ideas and strategies. The government is demanding $20 million from Congress for “centers of excellence” to develop templates for healthcare.

dr. Fernando Carnavali of Mount Sinai’s Center for Post-COVID Care in New York, said he understands complaints that the government has not made enough progress with prolonged COVID.

“For our culture today, which needs answers yesterday, it’s just hard,” Carnavali said. “It’s generally not how it works in chronic diseases. We have other examples, from HIV the answers didn’t come right away.”

Finally, the government said its plan will provide direct support to patients by ensuring access to insurance coverage and extending the umbrella of civil rights protection to those with long-term COVID. Consistent with Biden’s focus on reducing racial and ethnic inequalities in health care, some of the focus will be on minority communities that have taken a heavy toll on COVID-19.

Federal health programs, which can serve as a model for private insurance, will seek ways to ensure treatments for long-term COVID are covered and paid for. “The administration is working to make long-term COVID care as accessible as possible,” said a White House summary of Biden’s plan.

Editor’s Note: This story features coverage from The Associated Press and has been updated to include the AP credits.

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