COVID Patient Recovery Alliance
“I bring to your attention the fact that a number of individuals who virologically have recovered from [their COVID-19] infection, in fact have persistence measured in weeks to months of symptomatology that does not appear to be due to persistence of the virus. They’re referred to as long haulers. They have fatigue, myalgia, fever, and involvement of the neurological system, as well as cognitive abnormalities, such as the inability to concentrate.”
Dr. Anthony “Tony” Fauci
Testimony to the Senate HELP Committee, September 23, 2020
The COVID-19 Patient Recovery Alliance is a multi-sector collaboration with the mission to support the energy and innovation of government and private-sector leaders as they care for individuals with long-COVID-19 – those patients with long-term health consequences from COVID-19 infection.
As our nation continues to combat the spread of COVID-19, more and more patients have been helped, but find they have not fully healed. These patients have “recovered” but have not been restored to full health. For them, being at home is just the start of a new and protracted period of uncertainty as they wrestle with ongoing symptoms and clinical needs that seem to be chronic. This is informally known as “long-COVID.”
Our Alliance is a multi-sector group of leaders across the health care sector marshaling our resources in a coordinated effort to collect evidence, analyze data, and consider an array of resources and support services targeted at patients experiencing long-COVID. We are developing national solutions that link diverse data sources, inform the development of models of care, and help ensure adequate payment for the care of key patient cohorts.
We are focused on the following overlapping populations of people with long-COVID:
- Essential workers who served their communities and nation. These individuals have sacrificed to care for the sick, combat the virus, and keep the economy and national infrastructure afloat through critical industries and professions, such as health care, education, retail, agriculture, and transportation.
- High-cost clinical and support needs. These individuals require intensive medical care and non-medical supports and services that could significantly strain existing payment systems.
- Underserved communities. The pandemic is disproportionately affecting racial and ethnic minorities and other underserved communities, many of whom overlap with the other two population categories.
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Individuals with long-COVID, sometimes known as “long-haulers,” experience COVID-19 symptoms long after the initial infection. Data suggests that 1 in 10 people may have symptoms of COVID-19 for months after their initial acute infection. The list of chronic needs for these patients is long and varied: Fatigue. Muscle weakness. Strokes. Nerve damage. Kidney problems. Depression. Even a reduction in the effectiveness of cancer treatments. More than a quarter of survivors in one study reported ongoing physical pain.