Coronavirus (Covid-19) and the long haul: Long Covid advocates and the financial fallout

Filed Under: Costs, Patients

Two widely known long Covid patient advocates have recently begun to publicize the financial fallout from their illness, starting fund-raising campaigns to support themselves.

Both advocates, Amanda Finley and Karyn Bishof, have been ill since spring of 2020. Both have long-term consequences, and both are well-known founders of patient advocacy groups on Facebook — Finley at the Covid-19 Long-haulers Discussion Group, with 13,800 members as of Oct. 9, and Bishof of the Covid-19 Longhauler Advocacy Project, with 6,700 members as of Oct. 9.

Job loss, homelessness

Finley, from Kansas City, Mo., has been an opera singer, archaeologist and contact tracer. Bishof, from Boca Raton, Fla., is a firefighter. Both are mothers of young children.

The two women are examples of what has befallen many long Covid patients: Losing health, a job, income, housing and so on.

Bishof tweeted on Oct. 1 that she had been denied Social Security Disability Income, as have many long-haulers. She wrote about her plight in this Twitter thread, ending by writing, “So on that note, with 0 options, $0 income, 0 ability to work- please continue to help advocate for longhaulers and assist where and when you can. If anyone can help me, please check out my GFM here launched last night.” Her GoFundMe is here.

In the same thread, she tweeted: “If I can’t get approved, how do we expect any other longhaulers to? So many are about to lose EVERYTHING bc assistance simply doesn’t exist.

“LH’s NEED FINANCIAL ASSISTANCE & DEMAND MORE BE DONE W/ SSDI ENSURING COMPLIANCE W/ THE NEW GUIDANCE & EDUCATION 4 DECISION MAKERS! 6/7”

Finley told ClearHealthCosts that she lost her apartment in 2020 when her lease was not renewed near the beginning of the pandemic. She moved into an acquaintance’s basement. But that apartment was found to have a mold problem, and she moved out — camping over the summer in a tent in a nearby park. With the weather turning colder, and with her tent damaged in storms, she has posted an increasingly dark series of updates on Twitter. She counts herself as homeless, though recently a small group of supporters have grouped together to address housing for her, she said by phone.

A GoFundMe for her was started by another member of the Facebook group. Her GoFundme is here. It follows a GoFundMe that preceded it last summer.

(Disclosure: Both women have helped ClearHealthCosts with coverage of long Covid, helping with introductions and providing background for our reporting. Although journalists generally do not give money to sources, I contributed $200 to Finley’s first GoFundMe and $100 to the second one; I contributed $200 to Bishof’s GoFundMe.)

Not alone

The two are not alone. Many long Covid patients are suffering enormous financial complications from the illness: They may not have worked since they first got ill in March 2020, for example. They may not have been tested positive for Covid, because of the “black hole” in testing. They may have lost medical coverage, homes, jobs.

President Biden said in late July that some Americans with long Covid might qualify for disability and other protections. But nothing yet has changed materially.

Social Security disability payments are designed to help people who haven’t been able to work for 12 months or more, and for many long Covid patients that was fairly recent. Disability from a private employer-based policy has been hard for many to get — and some who had disability have lost jobs. We wrote about this here and here and here.

Long Covid patients’ difficulties with the system stem from many causes.

The symptoms of long Covid are varied and often-changing. There is not a standard clinical definition of long Covid, though experts agree that between 10 and 30 percent of those who get Covid will experience some form of long-term symptoms.

Both women have tested positive for Covid, though many patients in their situation never did get a positive test because of the testing black hole. Beyond that, if you could get a test, the test might not be reliable.

Both of these women — and many others — have struggled to find medical care. The U.S. healthcare system is in crisis and not set up to grapple with uncertainty.

For many people the financial challenges that go along with covid are severe: Lack of insurance, job loss, loss of homes among them. Yet many have been able to survive or eke out a solution with the help of friends, relatives and social services. These solutions go only so far, however.

What’s new is that these two well-known patient advocates, who have spent a great deal of time and energy on advocacy, are now turning to crowdfunding.

How many patients?

Estimates of how many long Covid patients are in the United States vary widely. Most medical studies indicate that anywhere from 10 to 30 percent of people who contract Covid will have long-lasting symptoms — though there is not a firm definition of what long Covid means, further complicating efforts to quantify the issue and therefore set policy.

One estimate this summer said that as many as 11 million people had long Covid — but of course the definition is squishy — and people are contracting the illness every day, and of those new patients, 10 to 30 percent will develop long Covid.

Our partner at CBS News did a report on the financial and legal repercussions of Covid that ran in June. Find it here.

How many crowdfunding campaigns?

A s the U.S. health care system has thrown more and more medical costs onto the shoulders of patients, the practice of crowdfunding to solve problems has grown. In the era of Covid, it’s not just medical bills — it’s also for related things like housing, utilities and so on.

A recent study published June 15 in Social Science & Medicine, found more than 175,000 COVID-19-related GoFundMe campaigns in the United States — though it seems clear that many of them were not just for personal medical and other funds, but also for Covid awareness, people whose lives had been disrupted by Covid, public health and so on. The study, “Crowdfunding as a response to COVID-19: Increasing inequities at a time of crisis,” by Mark Igra, Nora Kenworthy, Cadence Luchsinger and Jin-Kyu Jungd, found that the campaigns had raised more than $416 million, from January through July 2020.