COVID-19 Long haul carriers struggling to get a condition recognized as an obstacle: Shot

Jodee Pineau-Chaisson sits in her office in Springfield, Massachusetts on January 12, 2021. Social worker Pineau-Chaisson was infected with the coronavirus last May and has been symptomatic for several months after a negative virus test.

Meredith Neilman / GBH News

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Meredith Neilman / GBH News

Jodee Pineau-Chaisson sits in her office in Springfield, Massachusetts on January 12, 2021. Social worker Pineau-Chaisson was infected with the coronavirus last May and has been symptomatic for several months after a negative virus test.

Meredith Neilman / GBH News

When COVID-19 first arrived in the United States, Jodee Pineau-Chaisson worked as director of social welfare at a nursing home called the Center for Extended Care in Amherst, western Massachusetts. By mid-April, the inhabitants were ill.

In early May, Pino Chaison took on a specific mission. “I was asked to go to the COVID-19 unit to make a FaceTime call, so I was able to say goodbye to my family,” she recalls. “I was very scared.”

She was worried about getting the virus, but she also felt that she owed it to the inhabitants. So, at the age of 55, without any existing conditions, Pinault Chaison wore an N95 mask, a white jumpsuit, and she entered the unit to help. Three days later she became infected with COVID-19.

She says she is confident that she was exposed in a nursing home because no one was looking outside at work or shopping at the store at the time. She even moved from home to the apartment to prevent the virus from being brought in. Her wife’s house. In retrospect, Pino Chison suspects that he sweated too much and the mask didn’t work. Or perhaps she got too close while trying to facilitate FaceTime calls.

It’s been almost 10 months since Pino Chaison got sick, but she’s still working on a series of catastrophic illnesses. She says she has memory problems, body aches, palpitations, depression, and chronic fatigue.

“Sometimes it’s even difficult to climb the stairs to my bedroom,” she says.

Pino Chaison’s wife became her primary caregiver. She said her wife was always supportive and encouraging, even when she needed help getting in and out of the shower.

“I was lucky because she was a nurse,” says Pinault Chaison.

Pino Chaison is a so-called long-distance carrier. These are people who have survived COVID-19 but have symptoms (sometimes debilitating) months later. Disability advocates are also scrambling because scientists are scrambling to explain what’s happening and how to help. They are trying to understand if long-haul carriers are eligible for disability allowances.

Disability advocates and lawmakers are asking the Social Security Administration or SSA to investigate the issue, update their policies and provide guidance to applicants.

“If we had a million people with persistent debilitating symptoms, it would be a huge burden for each of those individuals, and for our health care system and our society,” said the doctor and family. Says Dr. Stephen Martin, a professor of. Medicine and community medicine at the UMass Medical School.

“We know what’s coming, so we need to make sure we’re on top of this,” he says. US Congressman John Larson, Connecticut Democrat, wrote with another member letter Ask SSA to work with scientists to understand the support that long-haul carriers may need.

Benefits application

After being infected with COVID-19, Pino Chison was hospitalized twice and was closed for 12 weeks under the Family and Medical Leave Act (FMLA). After that, she says she was still working on “total fatigue” and “extreme amnesia.” She says she wasn’t enough to get back to work and the nursing home fired her.

David Ianacone, Healthcare Administrator at the Center for Extended Care in Amherst, has confirmed the termination. “She couldn’t do the job,” he told NPR. “Her health did not allow her to return.”

Therefore, Pino Chison decided to send an application for social security disability insurance after receiving a neurological evaluation. SSDI is a federal disability fund that most workers contribute through payroll tax. If a worker is unable to continue working, he / she can apply for SSDI for a monthly check. But, program Strict and most applicants was denied..

“They said it could take two weeks to ten months-and in many cases they would deny you for the first time,” says Pino Chaison.

COVID-19 survivors are the latest group to approach the federal government for disability compensation and it is unclear if they are considered eligible.

“I think it’s still an open question. I’m a little worried if it’s still. [long-haulers] You will be able to qualify, “says lawyer Linda Laundry. Disability Law Center In Massachusetts.

She states that it is clear that long-haul carriers are eligible for protection under Americans with Disabilities Act. This provides accommodation, including access to housing and government services. However, the question of whether long-haul carriers are eligible for federal disability allowances is still under debate.

Laundry generally says that there are three things you need to qualify for benefits: first, a medical diagnosis. Second, evidence that the condition affects your ability to work. And third, the disability needs to last for some time.

The requirement is that “it is or is likely to affect your ability to work for 12 consecutive months.”

It can be difficult to prove this, says Laundry, as COVID-19 has rarely existed as a recognized disease for so long. She hopes that SSA will publish professional guidance on COVID-19, as well as previously published guidance for applicants suffering from debilitating headache and fibromyalgia.

“It’s really important that the Social Security Administration start studying it now, ahead of this,” said Kathleen Romig, senior policy analyst at the Center for Budget and Policy Priorities, who previously worked at SSA. I will.

In a statement, SSA told NPR that current disability policy rules should be sufficient to evaluate COVID-related applicants, but authorities did not rule out additional actions in the future. It was. “Researchers are still learning about the disease, and as research progresses, we will continue to consider our policies,” the statement said.

Lots of unknowns

Congressman Larson is a member of the House of Representatives Subcommittee Handles social security issues. He says it is difficult for SSA to prepare for the situation, as many important facts about long-haul carriers are still unknown.

For example, scientists are still researching ways to treat the debilitating symptoms of long-haul carriers, and it is unclear whether treatment will eventually allow some individuals to return to work.

Researchers are also trying to define the most common symptoms, roughly establish how many long-haul carriers are, and identify the number of people who have truly debilitating symptoms.

Some estimate that 10% of COVID-19 survivors have persistent symptoms, while others consider it to be lower. Dr. Zeina ChemaliOperating a long-distance clinic at Massachusetts General Hospital, says early studies from Europe suggest that it may be between 3 and 5 percent.

Given that more than 25 million people in the United States are infected with the coronavirus, Larson said there could be many, if only a small percentage of COVID-19 patients become long-haul carriers. It points out that there is.

“Not all 25 million people will be long-haul carriers, but what percentage will they be? And who in the group need to be targeted, seen and focused?” Larson Says.

Chemali says the problem reminds us of the long-term consequences that can result from Lyme disease and encephalitis. Chemali’s clinic is investigating whether COVID can endanger the brain over the long term, such as stroke and neurodegenerative diseases. She says they don’t know the answer yet.

“These neuropsychiatric and neurocognitive complications are not the first in history,” she says. “So we put it under this larger rubric of post-virus syndrome.”

Kemari The staff at her clinic says she spends a lot of time helping long-haul carriers get back to work. In particular, she advised the hospital to accept medical personnel who were infected with COVID-19 at work and had difficulty returning to their previous jobs and responsibilities.

“We really [medical] A system that helps us by arranging accommodation, “says Kemari.[Long-haulers] You may need less time, better shifts, and more help. “

When a patient is unable to resume work, Chemali’s clinic will help prepare the paperwork for the disability application. However, Chemali says it’s up to the SSA to decide whether someone qualifies after the application has been sent.

That’s why it’s important for SSAs to pay attention to long-haul carriers, Congressman Larson said. In his view, SSA faces a basic question: “What do we have to do to make sure we are there for these individuals?”