Mike Heidenberg had to leave his job at a New York college after he was diagnosed with Covid-19 symptoms in spring 2020. He is still too sick to return work nearly two years later.
Heidenberg (48) is one of many Americans who are struggling with the effects of long Covid, also known as Covid. Heidenberg's concerns go far beyond his physical health.
Heidenberg, who was working as a student advisor at Berkeley College in Westchester County, stated that "we can't sustain living here we have called home for 13 and half years."
He has been relying on donations from his synagogue and GoFundMe to make up the difference. In August 2020, his employer cut him off from disability insurance. This caused his blood pressure to rise into the 180s.
He said, "It literally sent my to the emergency room."
Heidenberg's troubles are not unusual.
An investigation by NBC News into the response of the social safety net to "long Covid highlighted critical gaps in existing assistance programs.
The government funds two programs to help workers protect against income loss -- long-term disability insurance and unemployment insurance. But neither of these options is available to most Americans with long Covid who are too sick to work, but not ready to leave the workforce.
Kathleen Romig, Director of Social Security Policy at the Center for Budget and Policy Priorities, stated that Long Covid cases fall in the middle ground between "I have a cold" and "I have stage 4 pancreatic cancer." "That's the area where we have a significant gap in this country.
Interviews with over three dozen people from government agencies, medical fields, and disability law firms revealed that many Americans fail to receive financial assistance for their lingering Covid symptoms.
Medical experts and patients have tried to raise the alarm over recent months that more must be done to assist people living with long Covid who are struggling with rising medical costs and losing income. Many are hopeful that President Joe Biden will bring up the topic in Tuesday's State of the Union address.
However, so far efforts to get government action have been mostly in vain.
"The system is gearing themselves against individuals with long Covid," Dr. David Putrino, the director of rehabilitation innovation at Mount Sinai Health System in New York said. "And that makes them more sick over time... causing them to exert so much effort as they try to get care that it actually makes their condition worse."
The uphill struggle for benefits
According to estimates, between seven and 23 million Americans have suffered from "long Covid," which encompasses roughly 200 symptoms that range from memory problems to chest pain to dizziness when standing.
Scientists are still unsure why some people can get rid of their Covid symptoms in just a few days, while others take weeks, months or years to recover. Experts believe that the large range of estimates for people suffering from long Covid is due in part to the absence of extensive testing in the pandemic earlier and the shifting medical definitions.
It is not clear how many American workers have been affected by Covid-19 and what populations.
A survey by NBC News was conducted via social media and received more than 1,700 responses from adults who had long Covid symptoms. Nearly 1,000 respondents said that they lack the resources to manage their condition.
Latesha Holloman (38), a mother of five daughters aged 19, 16, 15, 13, and 12 said, "We are a large family, but that was because we lived on the stimulus check." "We don’t have any savings."
Holloman has been out of work for more than a year since contracting Covid-19 at the front desk in a Virginia health care company. Holloman stated that she has applied for workers' comp, private short-term disability insurance, and unemployment insurance, but was denied each time.
Holloman said, "It really shattered my heart and I fell into depression over it." "But I am still hurt and angry. "I don't get why I can't be compensated for the loss of income due to getting Covid.
Despite her testimony that she had difficulty talking, walking for more than five minutes, and weighing more than five lbs, her disability insurance policy denied her claim. Her unemployment claim was denied by the Virginia Employment Commission because she "was unable to work due to health reasons".
"Unemployment says I can't work. Holloman stated that disability says I can. Holloman said, "Who is right?"
The NBC News survey surveyed more than 1,000 people. They reported that long Covid had adversely affected their ability or rendered them unable work. Nearly 600 of the nearly 600 respondents to the survey who applied for disability benefits said that they had encountered difficulties.
Many patients have symptoms that doctors are unable to diagnose, such as fatigue or nervous system dysfunction. Over 850 respondents to the NBC News survey reported that a doctor had questioned their authenticity.
Putrino, who is a physician at Mount Sinai's Center for Post-Covid Care New York City, said that it was "luck of the draw", whether insurance companies would accept his team's opinion that a patient requires time off work.
Putrino said that they try to be objective in all aspects of evaluation. His team has been responsible for the care of more than 1,500 patients with Covid. "But sometimes, even the most compelling evidence can be dismissed with one email that says, "This isn’t enough."
Many people who were denied benefits felt they couldn't work because of rising medical costs.
"If my employer knew what shape I was in, I wouldn’t have a job," stated a Pennsylvania home health worker who said she has more than $10,000 in medical debt. She is trying to hide her neurological issues from her employer as she cares for severe disabled patients.
She added, "I would have messed their meds up a billion times by now" if she didn't have enough backup checks.
A challenging system
Americans with long-term disabilities have another option: Social Security. This pays $13,360 per month to disabled workers.
It is not the best fit for people suffering from post-Covid symptoms. Two-thirds are denied. The process can take years and benefits are only available to those who have been disabled for at most 12 months.
Jason Turkish, the president and managing partner of Nyman Turkish, a prominent disability law firm, said that it was a difficult system. They are trying to navigate a process that was not intended to work in this setting.
After spending 57 days in hospital with Covid and having a tracheotomy performed, Corey Sexton applied for his first claim in June 2020. The federal administrative judge who denied his claim the most recent time has also denied it.
Sexton's doctors did not convince the judge that Sexton was incapable of working. The judge ruled that Sexton was capable of performing sedentary unskilled jobs without having to be fast-paced.
Sexton was hit hard by the "punch in the gut", as he used to test guns for Glock and now says he can't drive without assistance. Sexton has another chance at federal appeals -- but even if the claim succeeds, his family will have to wait at least one year before receiving payments.
Sexton, a Georgian resident, stated that "we had to take out credit card to stay afloat. Now they're maxed too." "We think that something needs to be done from the government to allow us to just live," Sexton said.
Plea for lawmakers
The Covid-19 Longhauler Advocacy Project, a patient-led group, sent an Open Letter to more than 3,000 officials in January. This included the White House and all members of Congress as well as the governors from all 50 States.
Only three replies were received by the group -- one from Rep. AyannaPressley, D.Mass. ; Rep. Cori Bush, D-Mo. ; and Sen. Tim Kaine (D-Va.) -- Karyn Bishof, a former EMS worker from Florida, who founded the group.
Bishof, 32, said that all these people are out of resources and have no programs in place. "What are they supposed do?" "Until we get our legislators to take action on our behalf, there's no place for them to turn to and nowhere to go.
Bishof's group sent a letter suggesting dozens of policies, from a 9/11-style compens fund to an additional question about the Bureau of Labor Statistics survey.
Bishof stated that their first goal is for Biden, to address Covid long in his State of the Union speech.
Bishof stated that it was likely the first time half the people who are watching the event will hear the term "long Covid".
The Biden administration released guidance last summer that suggested long Covid could be considered a disability under the Americans with Disabilities Act. This gives employees the legal basis to negotiate workplace accommodations. The White House and Congress have not proposed any new policies regarding long Covid.
Experts and officials are still trying to figure out how to create policy for long Covid. Scientists believe that long Covid, a term created by patients, will eventually be used to describe a range of post-viral diseases that have existed for a long time in society without proper documentation.
"It might require a Herculean Investment to really assess this disability here," Dr. Anthony Komaroff, a Harvard Medical School clinical investigator, said.
"The United States disability assessment system is so small in relation to the potential burden of long Covid, that it won't work effectively unless someone does something very unique."
People like April Partridge from Florida, who is one of the 50 million Americans without disability insurance , are particularly affected by this situation.
Partridge, 41 years old, is a specialist in historic restorations, sculptures, and mosaics. For the past two years she has been trapped in a long Covid cycle in which even painting can cause a wave of inflammation that causes her to be unable to move for days.
She has been to the emergency room three times due to symptom flare-ups. Coral, her 5-year-old daughter now lives in a rented camper in woods with her husband. She must sell enough art each month to provide a roof over their heads.
Partridge stated, "I set myself back every time, but because I have a child to care for, I don't have any choice." Partridge said, "It's like what else can you do?"