MB Caschetta ’88
We are nowhere near finding a treatment for long COVID. It’s a fact that worries Vassar’s president, Elizabeth H. Bradley, who recently received the highly prestigious Wilbur Lucius Cross Medal for scholarship in public health, presented by the Yale Graduate School Alumni Association. Along with Howard P. Forman, director of the Yale School of Medicine’s MD-MBA program, she published an op-ed last year on the political website The Hill titled, “Two years later, why don’t we know more about long COVID?”
“What is shocking—and unacceptable—is how little systematic data we have from which to make good decisions as we move into the endemic phase of COVID-19,” they wrote. “How prevalent is long COVID? How long is long COVID? Who is most likely to contract long COVID? Reliable research on long COVID is woefully inadequate.”
“We know so little about how to deal with immunologic conditions,” Bradley tells me, “which is what long COVID likely is.” Useful data, she believes, is a good five to six years away. Without such information to spur advocacy, public policy, medical knowledge—and, ultimately, drug development—not much can be done.
My heart sinks for a number of reasons.
First, fighting to change the slow progress of medicine is difficult. I know this from my years after Vassar: working as a medical journalist for GMHC (Gay Men’s Health Crisis, the first-ever AIDS organization), and as a member of ACT UP, Queer Nation, and the Lesbian Avengers. While researchers tried to figure out how the human immunodeficiency virus (HIV) destroyed the immune system and what could be done to combat it, we battled to stave off the onslaught of our friends dying. We organized “die-ins” in the street to stop traffic, badgered health officials and politicians to fund AIDS research, dumped the ashes of our dead on the White House lawn, and carried dead bodies through the street in coffins to keep the dire cost of the disease at the forefront.
Second, it took more than a decade of collaboration among activists, advocates, and researchers before protease inhibitors became available as a treatment that lowered the viral load of HIV, curbed immune damage, and began to prolong life. Those drugs are far from a cure, but they did change the landscape of one immunologic disease.
Third, I also have long COVID.
Nearly one in five (19 percent) of American adults who have had COVID report having lingering symptoms. Covid.gov describes long COVID as “signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection … [and] are present four weeks or more after the initial phase of infection; may be multisystemic; and may present with a relapsing or remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection.”
People call us “long-haulers.”
As it turns out, I have several characteristics that are now considered risk factors for long COVID. I’m female. I’m in my 50s—women ages 50 to 59 are more likely to get long COVID than those over 85. I was also very fit at the time of my initial infection in May 2020, running 15 or so miles a week; ironically, long COVID seems to target certain individuals who are in peak health, athletic even.
Long-haulers are said to disproportionately exist in medically underserved populations, such as communities of color or of lower socio-economic status. According to some research, long-haulers are also more likely to be transgender or bisexual adults than cisgender or gay and lesbian. No one knows why.
The disease is costly. About 2 to 4 million long-haulers have symptoms severe enough to not have returned to work, contributing about 15 percent to the current labor shortage, according to new data compiled from the 2022 U.S. Census. COVID has led to $170 to $230 billion in total lost wages annually and $3.7 trillion in total current economic cost in the United States alone, including increased medical spending.
People often tell me I’m the first long-hauler they’ve ever met. Personally, I’ve “met” hundreds of long-haulers online. It’s possible that only people with severe ongoing symptoms identify as long-haulers these days; I’ve noticed that a lot of people don’t talk about how their taste or smell never came back, or how they still need afternoon naps. We all do what we can to support ourselves and get through the day. Case in point: I’m writing this article from bed.
Though Congress passed legislation in 2020 to provide the National Institutes of Health with $1.15 billion for long-COVID research, only nine of 240 studies are currently active. Still, interesting independent studies are cropping up everywhere.
At Vassar, David Esteban, Associate Professor of Biology, received one of only nine new grants from the Patient-Led Research Collaborative, a project of PLRC and Balvi. He plans to use the money to add a long-COVID arm to his work in a relatively understudied post-infectious immunologic condition called myalgic encephalomyelitis (ME). Esteban’s goal is to discover the basis of neuroinflammation, immune dysfunction, and gastrointestinal homeostasis in post-infectious chronic disease.
Investigators of a new study reviewing death certificates dating back to 2020 claim to have found that some people have actually died from long-COVID. Bloomberg News recently ran a headline that long COVID shrinks the brain and ages it prematurely. The American Academy of Physical Medicine and Rehabilitation released a statement warning that cardiovascular disease stemming from long COVID will very likely create a future health crisis. Countless articles predict a grim future for long-haulers.
Still, as Bradley noted, we won’t know for some time what impact long COVID will have on affected individuals, the healthcare system, and global economies.
Most long-COVID clinical trials require proof of initial infection with a positive PCR test, which wasn’t as available or as reliable at the beginning of the pandemic, and that makes me worry. Once there are experimental treatment trials, I probably won’t meet the enrollment criteria.
“That’s going to leave out the longest long-haulers, isn’t it?” says Bradley.
She tells me about a study called “Yale Listens,” an observational, qualitative trial that may enroll participants who have no proof of initial infection. Bradley knows the lead investigator, she says. Before we even end the call, I’m on my laptop registering for a community called Kindred that feeds the Yale study and filling in the blanks about the past 31 months of my long-COVID haul.
I tick off symptoms that still plague me: numbness, tingling, burning and pain in my hands, feet, arms, legs—and sometimes face; sore throats; eye pain and damage; brain fog; muscle weakness (also a misnomer—it feels like waves of nausea coursing through one’s musculature); flu-like symptoms after exertion; exhaustion; a sick vibrating sensation in the back of my lungs; and heart palpitations (I read about a long-hauler who died by suicide because she had an unrelenting case of so-called “COVID buzz” in her heart).
I hope to hear back from the Yale researchers soon. Either way, I’m grateful for the suggestion.
I like thinking that someone out there is listening.
MB Caschetta ’88 is a medical writer and health content strategist. You can read about her personal experiences as a COVID long-hauler, AIDS activist, and Vassar student and alum in her latest book, A Cheerleader’s Guide to Spiritual Enlightenment: A Memoir in Essays (Engine Books, 2022).