A special briefing organized by lawmakers in Massachusetts featured experts weighing in on “Long COVID” – a condition medical professionals continue to try and define as it affects an unknown number of patients well-after an initial infection.
As researchers monitor and study the aftermath of the COVID-19 pandemic, one aspect continues to capture the attention of health professionals as advocates say millions are dealing with it.
The term “Long COVID” appeared soon after the initial outbreak in 2020, with reports of patients continuing to feel COVID symptoms or develop new ones months after initially being infected.
That is part of the definition offered by the World Health Organization, which also says symptoms of Long COVID range from fatigue to cognitive dysfunction. It adds “over 200 different symptoms have been reported that can have an impact on everyday functioning.”
It is also not the only definition offered by an organization.
“The National Academy proposed - that the Long COVID definition should be: it is an infection-related, chronic condition that occurs after COVID-19 and remains present for at least three months as a continuing, relapsing and remitting or progressive disease state that affects one or more organ systems,” said Massachusetts State Representative Mindy Domb of Amherst.
Domb referenced the National Academies of Sciences, Engineering, and Medicine’s definition while hosting an event on Long COVID last month.
It was part two in a series of “legislative briefings” covering the condition – providing a forum for researchers and advocates to discuss its affects on the state and workforce.
Neita McCray is founder and executive director of a Boston non-profit, “Mbadika,” and says she has lived the Long COVID experience, at one point being unable to work for some two years.
Describing how she went from a bed-bound Long COVID patient to a Long COVID patient advocating for others, she shared statistics from a Brookings Metro report published in August 2022 that makes use of survey data.
Part of the figures involve 12.2 million working age Americans believed to be affected.
“Brookings Metro is still standing by this number of 12.2 [million] working age Americans with Long COVID - who were in the labor force pre-COVID - are no longer in the labor force, and at least a million are estimated to be in the Commonwealth of Massachusetts at this time,” McCray said during the briefing.
Describing how medical debts mount, households strain to care for sufferers and other aspects of the condition, McCray says more needs to be done to at least create stability.
Also presenting was Dr. Cheryl Clark, a clinician and researcher as well as instructor at Harvard Medical School. Clark is also executive director and senior vice president of the Institute of Health Equity Research, Evaluation and Policy.
She, like McCray and other speakers, pointed to health equity and primary care access in Massachusetts as being major components when it comes to addressing Long COVID.
Given the need for coordinated care to treat the chronic condition, Clark says investing in primary care access in Massachusetts in particular is critical. Making matters difficult – various areas in the state that have apparent health professional shortages.
“If you look at a map of Massachusetts, you'll see that majority of the state actually, in many ways, has Health Professional shortage areas in primary care - that's particularly important in Western Massachusetts,” Clark said, referencing a map that, using Health Resources and Services Administration data, suggested most counties west of Norfolk County, including all of western Massachusetts, had some degree of shortages.
Ensuring a diverse healthcare workforce was also considered a priority by Clark.
“In addition to increasing and improving access to primary care, we also need to make sure that that primary care workforce is diverse in a couple of ways - both by roles, in terms of community health workers … in terms of the kind of primary care that can be provided, for example, the mental health workforce, as well as making sure that – we make sure that all people who have experiences from all walks of life are able to provide care, so that we all have a chance to meet people who we can relate to and who can relate to us,” Clark added
As research on Long COVID continues, though – just having a definition in hand is one of the more critical steps toward crafting policy, according to another speaker, Dr. Linda Sprague Martinez – a professor at the University of Connecticut’s School of Medicine and Director of the Health Disparities Institute at UConn Health.
As mentioned by Domb, the NASEM definition that was released in mid-June is a step toward solving one of the larger barriers of getting information out to the public – not having a shared definition.
“The one thing in the NASEM report that is very important, in addition to the points that Dr. Clark just brought us through, is the idea that that we need to be thinking about equity in the case of Long COVID, and in Massachusetts, that’s real - when we think about who was disproportionately impacted by COVID-19, there’s no reason for us not to assume that those same populations could be disproportionately impacted by Long COVID,” Martinez said. “And so, we want to adopt a definition and we want to do that in the context of equity framing. And then we need to develop and distribute that definition, as well as the guidelines for ensuring Long COVID equity - to professional organizations, healthcare delivery organizations across our state, and so that means in doing so, we need to establish clear definitions for achieving equity."
