The City Council convened a hearing on Thursday to recognize Long COVID’s disproportionate impact on women and gender minorities. Health experts testified that women are more likely than men to face debilitating long-term symptoms that push them out of the workforce, while patients and patient-advocates shared stories of dismissals from doctors and challenges with accessing financial support.
The Committee on Women and Gender Equity, chaired by Councilmember Tiffany Cabán, led the hearing in collaboration with the Subcommittee on COVID Recovery and Resiliency. Cabán introduced Long COVID as a women’s health issue in her opening remarks, referencing a study that found women are twice as likely as men to experience the condition.
Women are often “dismissed by doctors, told their symptoms are all in their head,” Cabán said. “If women suffer more, it’s easier to ignore.”
Locally, about 28% of New York City women with a “likely past COVID-19 infection” reported at least one long-term symptom related to the virus, compared to 21% of men, testified Dr. Celia Quinn, deputy commissioner for disease control at the city’s health department. She said that’s according to the department’s 2021 Community Health Survey, though the data is yet to be published.
Overall, “up to 30%” of New York City adults with a prior COVID-19 case “may experience some form of Long COVID,” Quinn said.
The city’s gender disparity is in line with national surveys conducted by the U.S. Census Bureau and the Centers for Disease Control and Prevention. They found about 39% of female U.S. adults with prior COVID-19 infections have ever experienced Long COVID compared to 27% of male adults, as of early August. The survey also found 47% of transgender adults with prior infections have experienced Long COVID.
Clinicians have yet to identify why women and gender minorities are more at risk for Long COVID. Some research has pointed to differences in male and female immune systems, such as higher levels of autoantibodies — proteins made by the body that inadvertently target a person’s own organs.
Women may also have fewer opportunities to rest soon after their infections begin, especially if they are caring for children or taking on other household duties. More rest is known to boost a patient’s chances of a full recovery. Some patient testimonies at the City Council hearing discussed a desire to “push through” symptoms, leading to crashes later.
“Despite being sick with debilitating headaches, chills, nausea, dizziness, fever, blurry vision, brain fog, and extreme body aches, I had to take care of my children and continue to try and work from home,” said one patient, a New Yorker who works in city government, in an anonymous written testimony.
Long COVID follows similar trends to other post-viral illnesses that disproportionately impact women and gender minorities, including HIV/AIDS, dysautonomia, and myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS. Patients with ME/CFS and dysautonomia are particularly likely to have their symptoms dismissed by doctors unfamiliar with the conditions, an experience they call “medical gaslighting.”
“These illnesses travel in packs, they overlap significantly in their symptoms,” said Ed Yong, a science writer at The Atlantic who has extensively covered Long COVID. Yong’s testimony quoted from "The Lady’s Handbook for Her Mysterious Illness," a memoir by ME/CFS advocate Sarah Ramey: being told your illness is “made up” may feel worse than its actual symptoms, he said.
Patients who testified echoed this sentiment. Patient-advocate Myra Batchelder recalled that, despite “debilitating chest pain” and an elevated heart rate, one cardiologist dismissed her symptoms and suggested she “go for a hike.” The conversation “felt like blatant sexism and dismissal,” she said. Batchelder later found other doctors who correctly diagnosed her with pericarditis, POTS, dysautonomia, and other serious health issues common among Long COVID patients.
Advocates and experts recommended that city agencies provide more education to doctors throughout the medical system about Long COVID, to push back against such dismissals.
Transgender and gender-nonconforming patients can also face stigma and barriers to care, said JD Davids and Gabriel San Emeterio, patient-advocates with HIV and ME/CFS who testified. “Long COVID is a trans issue,” Davids said, pointing to the CDC’s data as well as research from the University of California San Francisco finding that HIV-positive people are at higher risk for Long COVID.
We've completed more than 20,000 visits across the three Centers of Excellence.
These advocates would like to see more connections between existing HIV-focused social support systems and Long COVID. City officials “don’t have to reinvent the wheel, there are blueprints for these programs,” San Emeterio told Gothamist. As an example, they pointed to the HIV/AIDS Services Administration, which serves as a “one-stop-shop” for assistance with housing, healthcare, food, and more.
NYC Health + Hospitals currently offers a program called AfterCare: New Yorkers who think they may be experiencing Long COVID can call 212-COVID19 to learn about the condition and get connected to city services, Dr. Ted Long, executive director of the city’s Test & Treat Corps, said at the hearing. Those services include the city’s three public Long COVID clinics, called COVID-19 Centers of Excellence.
“We've completed more than 20,000 visits across the three Centers of Excellence,” Long said. However, beyond the clinics and AfterCare program, the city does not have social support programs specifically geared toward Long COVID patients — many of whom have lost their jobs and face severe financial struggles.
The city does not have “existing services that fit what people need for a complex, invisible disability,” Davids told Gothamist after the hearing. Long COVID deserves substantial new funding and resources on par with past HIV/AIDS efforts, he said.
The City Council hearing started almost an hour late and ran for about two-and-a-half hours, conflicting with other commitments for representatives from city agencies and the City Council. Many officials departed well before the event’s end, causing them to miss patient testimonies.
“This is the central health issue of our age,” Davids said. “The agencies should be receiving testimony just as much as they’re giving it.”
New Yorkers who would like to submit additional written testimony to the City Council can email it to firstname.lastname@example.org within 72 hours of the hearing, which started at about 2 p.m. on Thursday.
Editor's note: Details on patient-advocate Myra Batchelder's testimony to the City Council have been updated to add more context.