For several weeks I have been working on an investigative series on long COVID, a debilitating and often disabling syndrome affecting millions of people — mostly young to middle-aged — who have contracted COVID.
Like my last series on LBT women in prison, reporting this story has been by turns angering and heartbreaking. I’ve been reporting on COVID for PGN and other mainstream publications since March 2020. Last May I won the 2020 Society of Professional Journalists Award: Newspaper Feature Reporting for a series of five stories I reported for PGN, from early cases of COVID to mental health crises to pandemic-related hunger in Philadelphia’s LGBTQ community. I’ve talked to scores of people about their illness and/or about how the pandemic has affected them.
I got COVID myself early in the pandemic, exactly two years ago, right before Easter. A few months later, I developed congestive heart failure. I discovered from researching my experience that between 5 and 10 percent of women who get the coronavirus get CHF. CHF is incurable, debilitating and common among all adult age groups, but can be managed. Long COVID is still largely a mystery with no clear prognosis for those who have it, and the people I interviewed expressed varying degrees of hopelessness and fear about their illness.
Pre-pandemic, healthcare was predominant in politics — a major focus of both the 2016 and 2020 elections. The progressive wing of the Democratic party, among them Sens. Bernie Sanders (I-VT) and Elizabeth Warren (D-MA) and Rep. Alexandria Ocasio-Cortez (D-NY), has touted Medicare for All as a necessity to be fought for, while even centrists like Sen. Amy Klobuchar (D-MN), a 2020 presidential candidate, have argued for lowering the age for Medicare.
In April 2021, Sens. Tammy Baldwin (D-WI), Sherrod Brown (D-OH) and Debbie Stabenow (D-MI) introduced the Medicare at 50 Act, which would give people 50 to 64 the option of buying into Medicare.
One of the most disturbing aspects of this long COVID investigation has been talking to people with the syndrome who don’t have healthcare. On April 5, there was a reunion in the East Room of the White House between President Biden and former President Obama, moderated by Vice President Harris, to commemorate the signing of the Affordable Care Act on March 23, 2010.
Harris said, “The ACA is the most consequential healthcare legislation passed in generations in our country… The ACA has delivered high-quality, affordable healthcare to more than 30 million Americans” over that 12 year period.
Not mentioned is that according to the Congressional Budget Office, “health insurance is not owned by around 44 million adults in the U.S., while 38 million do not have adequate health coverage.”
KFF (Kaiser Family Foundation) is a non-profit, non-partisan organization headquartered in San Francisco that focuses on major health care issues facing the nation as well as the U.S. role in global health policy. According to a December 2021 KFF study, the costs of healthcare impact a majority of Americans and disproportionately impact Black and Latinx people. While LGBTQ people are not noted specifically in the study, LGBTQ people have been disproportionately impacted by the pandemic, and have less access to affordable healthcare, or any at all.
According to data from the Movement Advancement Project (MAP), LGBTQ households, especially those headed by Black and Latinx people, were twice as likely to be unable to get necessary medical care or mental health care since the pandemic.
“It’s clear that the COVID-19 has amplified and exacerbated disparities that existed before the pandemic. LGBTQ people were more likely to struggle with economic stability and have challenges with access to health care prior to COVID, and that’s even more true now,” said Logan Casey, Policy Researcher at MAP at the time.
Add to that this data released April 12 about long COVID: “Among almost 250,000 patients with COVID, 33.6% were diagnosed with neurologic and psychiatric conditions in the following six months, with 12.8% being new-onset conditions.”
Among those I interviewed for this series were a lesbian design engineer, a gay male author of more than 50 books, a queer mother of three, a gay waiter, as well as others. All have been devastated by long COVID and the resultant debilitating effects — which have included losing their health insurance, either because they couldn’t afford it or because their health insurance was, as is true for 49 percent of Americans, through their employment.
KFF reports: “Half of U.S. adults say they put off or skipped some sort of health care or dental care in the past year because of the cost. Three in ten (29%) also report not taking their medicines as prescribed at some point in the past year because of the cost.”
KFF data shows that exorbitant health care costs disproportionately affect uninsured adults, Black and Latinx adults, and those with lower incomes. LGBTQ people fall into all those categories. On the day I interviewed one lesbian with long COVID for my series, she had just been forced to sell her car, due to the financial impact of her disease.
But even with health insurance, KFF found that “nearly half (46%) of insured adults report difficulty affording their out-of-pocket costs, and one in four (27%) report difficulty affording their deductible.”
At the White House event, Harris announced that 14.5 million more people had signed up for insurance plans since Biden took office. Biden announced further tweaks to the system to insure yet more people. Unmentioned was how many millions of Americans lost their health insurance during the pandemic.
And the KFF data remains. Just a week ago 193 House Republicans voted against lowering the price of insulin from $400 to $30, when 1 in 9 Americans has diabetes.
We are at yet another healthcare crossroads in America with a shadow pandemic of long COVID affecting between 15 and 30 percent of those who have gotten the disease. That’s a looming crisis for our community, and for the country. Who is going to take it on?