State of Reform
Emily Boerger | Feb 25, 2021
On Thursday, leaders from 50 organizations and patient groups announced the establishment of the Long COVID Alliance – a group of scientists, patient-advocates, public health experts, and drug developers who have come together to address challenges faced by “COVID long haulers.”
COVID long haulers are individuals who experience COVID symptoms, such as a fatigue, brain fog, body aches, and coughing, for weeks or months following the onset of illness. A recent University of Washington study found that up to 30% of individuals diagnosed with COVID-19 still reported symptoms months after being diagnosed. Other studies estimate that about 10% of people experience prolonged illness.
The Long COVID Alliance is looking to use its multi-disciplinary expertise to make policy recommendations and secure research funding. Oved Amitay, President and CEO of Solve M.E. and one of the alliance’s co-founders, says the new alliance will leverage these organizations’ past experiences to shed light on long haulers.
“The Long COVID Alliance is a critical collaboration based on the current reality that doctors and researchers are reporting that millions of COVID-19 patients continue to experience chronic and often debilitating post-viral symptoms…Even though tests might reveal that no virus remains in the body, COVID-19 ‘long haulers’ continue to struggle, often alone. Our community brings past experiences that are relevant to the current crisis.”
In December, Congress approved over $1.15 billion for the National Institutes of Health (NIH) to study long-term COVID-19. Through this funding, the NIH announced on Tuesday two Research Opportunity Announcements for its newly formed NIH PASC [Post-Acute Sequelae of SARS-CoV-2 infection] Initiative.
NIH Director Francis S. Collins, MD, PhD, says,
“We believe that the insight we gain from this research will also enhance our knowledge of the basic biology of how humans recover from infection, and improve our understanding of other chronic post-viral syndromes and autoimmune diseases, as well as other diseases with similar symptoms.”
The initiative hopes to answer the following initial questions:
“What does the spectrum of recovery from SARS-CoV-2 infection look like across the population?
How many people continue to have symptoms of COVID-19, or even develop new symptoms, after acute SARS-CoV-2 infection?
What is the underlying biological cause of these prolonged symptoms?
What makes some people vulnerable to this but not others?
Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such as chronic heart or brain disorders?”
In a letter on Thursday, members of the Long COVID Alliance urged the NIH to prioritize patient engagement, invest in data harmonization and data infrastructure, and incentivize public/private partnerships in its work on the PASC Initiative.
Hunter Howard, chairman of the Global Pandemic Coalition and a founder of the alliance, says researching the long-term symptoms of long haulers is critical.
“So many patients have bonded together as the healthcare community has not understood why some patients are asymptomatic and others are suffering moderate to debilitating issues a year later… If the vaccines continue to drive down mortalities, nothing may be more important now than coming together to drive understanding and fund research for the COVID survivors.”