By Christopher Cheney
More than 50 organizations have formed the Long COVID Alliance to use their collective knowledge and resources to educate policymakers, accelerate research, and empower patients.
There are coronavirus “long haulers” among COVID-19 patients who have experience mild, moderate, and severe infections. In a recent study of COVID-19 patients hospitalized with severe acute respiratory infection, functional impairment was found in 53.8% of patients four months after hospital discharge. Long COVID symptoms include cough, shortness of breath, anxiety and depression, cardiac issues, fatigue, deconditioning, and hair loss.
The formation of the Long COVID Alliance was announced on Feb. 25. “At this point, we are more of a coalition than an organization. We are composed of both organizations and individuals. We see the need for the Long COVID Alliance as being three-fold: education, research, and advocacy,” says Emily Taylor, MA, director of advocacy and community relations at The Solve ME/CFS Initiative in Glendale, California.
The Solve ME/CFS Initiative is one of the founders of the Long COVID Alliance. The organization is dedicated to research, advocacy, and patient support for myalgic encephalomyelitis, which was previously called chronic fatigue syndrome.
In addition to The Solve ME/CFS Initiative, several complex chronic illness organizations are participating in the Long COVID Alliance.
“Many patients who have complex chronic illnesses such as ME/CFS have not been taken seriously by the health system. All of a sudden, the long COVID patients have validity. COVID is real and the medical community is treating it like it is real. There are many COVID patients getting the same long-haul symptoms at the same time, and long COVID is legitimizing illnesses like ME/CFS that have fought for legitimacy for years,” Taylor says.
Long COVID Alliance goals
The Long COVID Alliance wants to promote public-private partnerships, Taylor says.
“For complex chronic diseases, the most successful initiatives are public-private partnerships. For example, the National Institutes of Health has established partnerships with nonprofits and for-profit entities such as collaborative research centers. There are three collaborative research centers that the NIH has funded for ME/CFS in the past couple of years. This was a perfect example of academia, private partners such as Solve ME, other advocacy organizations, and public research centers with public dollars coming together to identify the primary research barriers and design studies that can address those barriers.”
The Long COVID Alliance wants to confront systemic bias and racism in the response to long COVID, she says.
“The Long COVID Alliance can help drive health equity by being a bridge between healthcare providers, federal policy makers and funders, insurers, and the patient community. Long COVID patients mirror the disparities and systemic inadequacies that already existed before the pandemic. People of color are getting COVID and long COVID at a higher rate than other Americans. We are hoping that the Long COVID Alliance can bring issues of health equity to the forefront by being a conduit for patient voices and being a source of good peer-reviewed science.”
Time is of the essence in finding effective treatments for long COVID, Taylor says.
“There is a sense of urgency to get this work started. Public-private partnerships in cancer, Alzheimer’s, and autism took years to generate results. We do not have that kind of time with the long COVID patients. What we have learned from ME/CFS and other post-viral illnesses is that you have a treatment window at early onset that is usually two to three years. If patients do not receive treatment in that time, their illness can last the rest of their lives,” she says.
The endgame is getting bench-to-bedside science fast enough so that coronavirus long haulers do not stay disabled for years, Taylor says. “We do not want the long haulers to become part of the permanent chronic illness community. That is why we are pushing this initiative so soon.”
Hopeful for the future
The Long COVID Alliance is off to a good start, Taylor says.
“It is a lot of work to build an effective coalition or alliance. In my 15 years of working in this field, I have never seen a coalition come together so quickly and so organically. That reflects the urgency of treating long haulers and the decades of experience that our coalition partners have with similar post-viral chronic illnesses. We see the writing on the wall, and everyone is on the same page—we need to get these patients well as soon as possible. We all have this single-minded goal, and we are all working as hard as we can to get there.”
Christopher Cheney is the senior clinical care editor at HealthLeaders.