As we continue to learn to live with and survive COVID-19, patients, policymakers, and doctors are still asking key questions. How should we as a society be serving people as the COVID-19 pandemic continues? How should individuals affected by COVID-19 be protected after the end of the public health emergency on May 11?
Dr. Andrew Pekosz, a virologist at the Johns Hopkins University Bloomberg School of Public Health, spoke with the AmNews about one group in particular that needs to be protected: those with Long COVID.
“I think Long COVID is a spectrum of a couple of different kinds of diseases,” he says. “We’re starting to really pay attention to [the fact] that some people have maybe more respiratory long-term side effects, some people have some neurological side effects, others have this general malaise feeling across their entire body.” Pekosz says that most people control infections and their bodies come back to a level that was exactly the same as it was before the infection. “But under certain conditions, and with certain viruses, there’s a larger portion of people that never make it back to that starting point,” he says. “And that’s where you can have some of these long-term effects.”
Pekosz says that one of the challenges with studying and treating these long-term effects is the conflation of Long COVID into one disease when he believes that it is really various diseases. “I think it’s important to note that there’s probably a lot of different kinds of Long COVID that we’re now lumping together that I think we as scientists have to really separate out and study individually,” he says.
Lisa McCorkell, a co-founder of the Patient-Led Research Collaborative, an organization made up of Long COVID patients who are also researchers in fields such as biomedical research, public policy, and health activism, spoke with the AmNews about individuals that are chronically ill and suffering with Long COVID.
“I tell everyone, all patients, that they know their body best, so if a provider tells you something that doesn’t align with what you’re experiencing, you’re not in the wrong,” she said. “There is a large community online that are experiencing exactly what Long COVID patients are going through, so trying to find that support can be really helpful.”
McCorkell says that many of the conditions that patients were getting diagnosed with like myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS) and Postural Orthostatic Tachycardia Syndrome (POTS), a blood circulation disorder, are generally lifelong conditions.
“I would say we are seeing people recover from Long COVID within a year but many of us have not. It’s a pretty significantly high number of us that are not,” she said.
“We’re all hitting our three-year anniversary and I don’t anticipate recovery,” she added. “It’s whether I get a treatment or not that helps me manage my symptoms so that’s definitely a myth that you recover from Long COVID [after] a few months because it’s possible people do but, [some] of us are not recovering within a year and if you don’t recover within a year, especially in things like ME/CFS and POTS, you’re more likely for it to be a lifelong illness.”
The continued struggle for many is not lost on experts like Dr. Kelly Gebo, Professor of Medicine and Epidemiology at the Johns Hopkins University School of Medicine. “There are pockets of our population with people who have chronic diseases or who are caring for people with chronic diseases that are trying to continue to self-protect and there’s a real stigma associated with that,” Gebo said.
People with Long COVID are not the only ones facing pandemic-related challenges such as fighting for benefits, managing other chronic diseases, and dealing with food insecurity.
According to Gebo, there is a particularly vulnerable population in the aftermath of COVID-19: those who have been orphaned during the pandemic. Gebo highlights the significant needs of this group, emphasizing that losing a caregiver can have a profound impact on a child’s life.
People with disabilities are another impacted population. According to a report by the Center for Law and Social Policy, the backlog of applications at the Social Security Administration is “a hindrance for long COVID applicants, and others.” The report recommends that programs like “TANF and SNAP be available to help people with Long COVID and other disabilities avoid hunger and hardship.”
Instead, disabled people face significant challenges in getting access to these essential support systems. The report highlights a concern that the systemic inequities of being denied benefits or losing them disproportionately can harm disabled people of color, individuals with low incomes, and those with marginalized identities.
According to JD Davids, the Co-Director of Strategies for High Impact, we’ve been down this road before with other diseases. “On the one hand we’ve seen what has happened with HIV with strategic investments and pushed by activists,” he says. “Over four decades, we’ve taken an almost universally fatal condition and been able to have it be a mostly manageable chronic condition if people get the treatment and care they need and it’s now even more readily a preventable condition.”
Davids says that we have a lot to learn from past epidemics and the question is whether we will take those lessons and utilize them during the COVID-19 pandemic.
“So we have a choice here: we can go down the road of what we’ve done with HIV, or we could look at what . . .happened with myalgic encephalomyelitis . . .where we have …drastic lack of care and actual disbelief and doubting of those who have it who can be profoundly disabled.”
As for the end of the public health emergency on May 11, according to Davids, this is another place where looking to the past and HIV can be instructive. “It’s hard to call something an emergency for 40 years but when you look at the way that HIV has been and continues to be handled, it’s with specific and dedicated ongoing resources that has allowed us to have this success and that’s what we need for COVID and Long COVID,” he says.
Specific solutions that Davids gives includes creating long term federal funding similar to the Ryan White Care Act, which Davids says helps people get into and stay on the care and treatments that they need with all the support that helps them be able to do that. Training medical providers, funding for research, and national strategies are other solutions from Davids.
“What’s happening is right and left, measures are being dropped and it happened way before May 11th,” he says. “So what we’re going to see is basically at best a return to business as usual.”
Dr. Gebo is also an expert in the HIV arena, and spoke to some of these similarities with the AmNews.
“I think the other thing [COVID-19] exposed was the difficulties and disparities in our Health Care system. There are populations that don’t get the same medical care as others and it’s important to try to engage everyone to make sure that we’re providing . . .the best possible care. Having done HIV medicine for 20 years, it wasn’t a shock to me, but I think having a global pandemic that affected everybody at the same time really exposed some significant flaws in our Healthcare system.”
Ultimately, Dr. Lisa McCorkell emphasizes the importance of taking measures to reduce the risk of experiencing these issues before, during, and after being diagnosed with COVID-19.
“It’s still worth it to try to not get COVID, to then try to not get Long COVID, and then if you are experiencing symptoms after COVID infection, it’s really important, especially if you’re having chest pain or anything that could be indicative of a stroke or a heart attack, to make sure to get that checked out and to not normalize that,” she says.For additional resources about COVID-19, visit www1.nyc.gov/site/coronavirus/index.page or call 212-COVID19. COVID-19 testing, masks, and vaccination resources can also be accessed on the AmNews COVID-19 page: www.amsterdamnews.com/covid/.