Former health officials focusing on long-haul COVID-19 in new alliance

Former U.S. health officials launched an alliance on Wednesday that plans to advocate for research into and care for those suffering the long-term side effects of a COVID-19 infection, commonly known as “long COVID-19.” 

Former Utah Gov. Mike Leavitt (R) and Nancy-Ann DeParle, the former deputy chief of staff for policy under former President Obama, unveiled their COVID Patient Recovery Alliance, which they plan to use to help health care professionals and policymakers address long-haul COVID-19.

DeParle and Leavitt, who also served as the HHS secretary under former President George W. Bush, began formulating the group of health care providers, researchers, patient advocates, data scientists, service providers and other experts in the fall of 2020.

Little is known so far about long COVID-19, which is when symptoms like fatigue, brain fog, disturbed sleep, shortness of breath, palpitations, depression, loss of taste and smell and muscle and joint pain persist four weeks or more after diagnosis and might impede one’s ability to work.

Preliminary research has estimated that between 10 percent and 30 percent of people who had COVID-19 may endure long-haul COVID-19. With more than 32 million confirmed cases in the U.S. in the past year, that could amount to millions dealing with long-term effects of the viral infection.

“As a nation and as a healthcare sector, we need near- and mid-term strategies to better identify care gaps, ensure care delivery, and ensure coverage for patients so that they can fully recover and reengage fully with their families, workplaces, and communities,” Leavitt said. “We have a particular duty to try to meet the needs of Americans who are underserved, or who have already faced disparities and inequities due to COVID-19.”

Before the launch, the alliance has privately worked on finding ways to help long haulers, particularly those “who may be most in need,” such as veterans, those who consider COVID-19-related costs “extraordinary and burdensome,” and those who are underserved, such as people in rural and minority communities. 

The alliance aims to support collecting coordinated data and research on long COVID-19, developing models of care for health care workers to help long-hauler patients and creating private sector and federal payment models for long haulers. 

A subcommittee of the House Energy and Commerce Committee held a hearing on long COVID-19 on Wednesday, during which National Institutes of Health Director Francis Collins said the agency is preparing to offer more than $1 billion in grants within three weeks for more research into long-haul COVID-19.

The alliance submitted a letter to the committee leaders saying its members “applaud” the committee for holding the hearing. The group also issued a call to action for research and collaboration on helping those suffering from long COVID-19 in the short term. 

“We believe America needs leaders across the health sector to work together to learn how best to support the recovery of patients experiencing long-COVID,” the call said. “Until science shows us how to shorten long-COVID, there is a need to ensure adequate support for three groups of patients with long-COVID.”