Experts declare Long COVID a public health crisis rife with equity issues in dire need of support, attention
Public health experts in Massachusetts say Long COVID represents a crisis on top of a crisis.
A webinar held by the Public Health Institute of Western Mass in January gathered both medical and sociological experts to explore how Long COVID is affecting commonwealth residents. They say support and resources for those impacted by the incapacitating and wide-ranging affliction are not equitably accessible.
“Long COVID can be thought of as the post-pandemic pandemic," said Dr. Bruce Levy. "I'm not sure we're really post-pandemic, but it is now front and center. And of course, we really need a similar public health approach to really fully understand and address Long COVID.”
Levy is the Interim Chair of Medicine at Brigham and Women's Hospital and the chief of pulmonary critical care medicine, as well as a co-founder of the COVID Recovery Center at Brigham.
“The symptoms predominantly are represented here- Fatigue being a major one, and post exertional malaise, muscle weakness, joint pain," said Levy. "There's a lot of neurocognitive symptoms, often termed brain fog, trouble remembering things, stringing thoughts together, logic streams, and some frequent headaches, significant mental health challenges with increased anxiety and depression. And some people have had some pretty substantial impact in terms of smell and taste with long term loss of those senses, which can be, of course, very disruptive. This is the most prominent symptoms, but this is just an example of how broad the symptom complex can be in this condition, everything from dysautonomia to hair loss to cardiac and GI symptoms and respiratory symptoms and sleep disturbances. So, this is a new illness with new constellation of symptoms, that all seem to be attributable to that initial infection with COVID that are durable beyond at least 30 days after infection.”
He says Long COVID is more common in women than men by at least a two to one ratio.
“This has been a challenging entity clinically to address because a lot of the proposed care that's been raised for a people with symptoms of Long COVID is to exclude other medical conditions, and the proposed care is quite costly and not easily accessible in many parts of the commonwealth,” Levy said.
So far, there is no evidence that any medicinal therapy is effective in treating Long COVID.
“This is really a public health crisis," said Levy. "A million people, maybe more, forced out of the labor force due to Long COVID. They're often young. People working in service industries very frequently are affected. Lots of economic vulnerability, as you might imagine. And health care costs are of course impacted because of all of the care that these patients require.”
The presentation also including findings from a study on equity issues inherent to Long COVID’s impact on Massachusetts.
“Some participants named racism is playing a role in the lack of available support," said Dr. Linda Sprague Martinez. "So, one example here is, yes, I feel it's because I was Haitian, when I walked into hospitals, they automatically thought I had COVID. If it was someone from another race they would be treated better. That steers me away from wanting to go back.”
Martinez is an associate professor and former chair of the macro department at the Boston University School of Social Work and the co-director of the BU clinical translation Science Institute Community Engagement Program.
“Some of our findings were related to language barriers preventing the utilization of COVID resources," said Martinez. "And so, across all nine groups we conducted on non-English languages, language was cited as a major barrier. Folks didn't talk as much about immigration status. They talked about language and not having resources in their language. And so, this lack of accessible information online, in the news, there was poor translator services at healthcare facilities people talked about, and even if there were translators present or information was available in their language, it wasn't necessarily accessible and understandable.”
Martinez said the study’s findings also underscore the disproportionate impact of Long COVID and the pandemic at large on the economically vulnerable.
“One was the lack of affordable care for folks in terms of copays that they were accumulating," she said. "People talked about medical debt, they talked about not having sick days. And they said that this was important, not even for Long COVID, but also for acute COVID. Because it used to be that there was a guaranteed sick day when you had COVID, but now that doesn't exist. And so, they're going to work, and so they're going to work with acute COVID and with Long COVID pain, and not feeling well.”
The study included some recommendations drawn from its results, including state-led incentives to encourage healthcare institutions to share resources and data.
“Better guidance for employers and workplaces. Reinstating paid time off for COVID, including the impacts of Long COVID, not just for acute COVID," said Martinez. "Faster processing of long-term disability requests. Revisiting requirements to prove disability as there is no straightforward diagnostic test for many Long COVID symptoms. Economic supports for housing payments, utilities, food. Policies related to inclusive health insurance coverage to span a range of wellness options, including physical therapy, acupuncture, Eastern traditional medical services.”
You can watch the full webinar here.