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Medill on the Hill: Memories of Pandemic Wane but Long COVID-19 Continues for Many
“I look at some of the paperwork that you have to go through and all the medical documentation that you have to provide, and I think that can be challenging for someone with average cognitive capacity,” Wylam said. “When you add on the cognitive disability to a person’s symptoms, the process of going through the application and appeals is just overwhelming.” Wylam said that he’s worked with patients who have applied for Social Security disability insurance and had to wait more than two years for a response. During this time, they are without a steady flow of income, he said.
Bridge Michigan: Michigan Mom Sues for Disability in Latest U.S. Legal Battle Over Long COVID
The federal government recognizes the condition as a disability under the Americans with Disabilities Act, with about 56,000 disability claims linked to COVID-19 by U.S. Social Security. And the U.S. Department of Labor requires employers to reasonably accommodate employees with long COVID, such as providing flexible scheduling or remote working. Even so, proving long-term disability through Social Security or an insurance contract can be tricky, said Andrew Wylam, president and co-founder of South Carolina-based Pandemic Patients, a nonprofit that advocates for people with long COVID. “This isn't a broken bone,” he added. “This is maybe a broken immune system.”
Podcast: Advocating for Long Haulers
Andrew Wylam, President of Pandemic Patients, discusses the evolution of his COVID-19 advocacy organization. He points out the challenges facing individuals with Long COVID and describes a subset of his organization, the Pandemic Legal Assistance Network, which provides pro-bono legal assistance to those impacted by COVID-19.
Medium: Heroes Of The COVID Crisis: How Andrew Wylam of Pandemic Patients Stepped Up To Make A Difference During The COVID-19 Pandemic
The coronavirus pandemic is a global tragedy of unfathomable proportions. COVID-19 has touched everyone, and people continue to grapple with the consequences of this event. My friends and family have been affected, so I take this issue very personally. When I first learned that people were experiencing long-term symptoms after their COVID-19 infection, I knew I needed to do something. I recognized that long COVID patients would be a vulnerable population with significant long-term needs, and I wanted to build an organization that could be a voice for them.
There are so many lessons to take away from the coronavirus pandemic. I hope we can incorporate those lessons into our lives in a meaningful way, not only to grow as individuals, but to better prepare ourselves collectively for the next crisis. One specific change I would like to see is for people to slow down and reconnect with their humanity.
Medscape: Long COVID Disability Court Battles Just 'Tip of Iceberg'
Documentation was also crucial in another early federal long COVID disability lawsuit that was filed last year on behalf of Wendy Haut, an educational software sales representative in California who turned to the courts seeking disability income through her company's employee benefits plan. Several of Haut's doctors documented a detailed list of long COVID symptoms, including "profound fatigue and extreme cognitive difficulties" that they said prevented her from working as a sales representative or doing any other type of job. A settlement agreement in June 2022 required Reliance Standard Life Insurance to pay Haut long-term disability benefits, including previously unpaid benefits, according to a report by the advocacy group Pandemic Patients. Representatives of Reliance Standard didn't respond to a request for comment.
SALON: Disability Rates Rose Sharply During the Pandemic. Long COVID is Largely to Blame
"The coronavirus pandemic has certainly caused new long-term disabilities among millions of people," Andrew Wylam, president of Pandemic Patients, a non-profit that works to help people harmed by COVID-19 and post-COVID conditions, told Salon by email. "The outcomes of long COVID are still unclear, but we're seeing that some people do show some recovery while others' symptoms decline or stay the same. The nature of these impairments is blended, with some being primarily cognitive and others being physical or associated with organ damage."
"COVID-19 is still spreading and still causing disability," Wylam wrote to Salon. "We need to keep working to educate people about the risks of long COVID and how to recognize it. I think a lot of people recover from their acute COVID-19 infection and when they develop long COVID symptoms a few months later they don't attribute it to the prior infection. That makes it difficult for people to make the association between the onset of new symptoms and COVID-19, which can make it hard to persuade people this is an important issue."
Long COVID Patients Face Challenges Accessing Government Support
“People are waiting somewhere between six or 12 months, if not longer, to get their eligibility for SSDI,” said Andrew Wylam, president of Pandemic Patients, a long COVID advocacy group. “The Social Security Administration just isn’t quite staffed or funded enough to adjudicate those claims quickly.”
Delaware Public Media: Understanding the Signs and Symptoms of Long COVID
“If someone says, ‘Oh I have long COVID and I’m tired,’ or ‘I have some brain fog,’ it’s like, that’s on the spectrum of maybe not disabling under the law,” Wylam says. “But when you get to the point where someone has difficulty breathing or difficulty walking or difficulty driving because they have severe nausea and vertigo, that is what can push them over the line towards being a disability under federal law.”
Mashable: Long COVID and Suicide: How Patients are Helping Each Other in their Darkest Hour
But months later, following worsened neurological symptoms that preceded a diagnosis of mild cognitive impairment, she experienced specific suicidal thoughts that felt far more insidious. "It was that my whole identity was fractured," says Norpel. Though she experiences speech issues, migraines, chronic fatigue and pain, and dysautonomia, a term used to describe problems with the body's autonomic nervous system, Norpel has joined the board of the nonprofit organization Pandemic Patients, in a limited capacity. She says this work, along with continuing to communicate online with other survivors, gives her a long-missing sense of purpose.
SELF: Long COVID is Keeping So Many Young People Out of Work
People with long COVID have typically found that “working collaboratively with their employer to structure their return to work in a way that is manageable for them” is one of the best accommodations they can ask for, Andrew Wylam, a lawyer and the cofounder and president of Pandemic Patients, a nonprofit organization that supports people who have been impacted by COVID-19, tells SELF. “Gradual return to work is helpful, along with flexible hours and remote options,” he says. “People may want to return to work but they don’t want it to trigger their symptoms.”
Wylam says that it’s crucial for people with long COVID to “maintain open, constant communication with” their employer and supervisor about their symptoms and limitations. Of course, not every employer is flexible or even willing to make accommodations for people with long COVID. If you think you qualify for disability financial assistance and you’re struggling to figure out the system, Wylam suggests consulting a lawyer, if you can. They can help you understand what reasonable work accommodations look like, navigate workers’ compensation, and identify disability discrimination.
CNBC: Successfully Applying for Social Security Disability is Difficult. Applying as a Long COVID Patient is Even Trickier
The process for applying for federal disability benefits is lengthy. That has put some patients with no other available source of income in a desperate financial situation, according to Andrew Wylam, a lawyer and president of Pandemic Patients, a nonprofit patient-advocacy organization dedicated to helping Covid patients get the services they need. “Some people are holding on with their only hope of getting SSDI benefits, and that’s a six-, eight- or 12-month process,” Wylam said. In the interim, Wylam has seen those patients exhaust their life savings, cash out their investments and liquidate their property as they hold on to hope Social Security disability benefits will eventually be available to help them stay afloat. “It’s very demoralizing and it’s really heart breaking to see people go through that situation,” Wylam said.
“I wish that Congress were taking this a little more seriously,” said Andrew Wylam, president and cofounder of the advocacy group Pandemic Patients. Wylam said lawmakers have not provided the same level of a response to long COVID as they did for acute infections early in the pandemic. “It’s hard seeing the administration say, ‘We need a whole-of-government approach, we need a coordinated approach to long COVID, and we are going to do all these great things,’ but then when it comes time for Congress to actually participate in that—as the holders of the purse strings, they have to follow through for the administration to really make some progress here in a lot of ways,” Wylam said.
CNBC: Long COVID Patients Can Face a Battle Trying to Claim Benefits Through their Workplace Disability Insurance
“What I’m seeing broadly are cognitive impairment and chronic fatigue,” said Andrew Wylam, an attorney and president of Pandemic Patients, a nonprofit advocacy group that helps long Covid patients get the support and services they need, which can include legal advice. “Those are symptoms that are not just disabling but make it difficult to apply for benefits and navigate a stressful situation,” Wylam said.
Long-term disability insurance is subject to a federal law known as ERISA (Employee Retirement Income Security Act). This means that when a claim is denied, the only immediate recourse is to appeal the decision to see if that results in a reversal. “If they don’t completely exhaust the administrative appeals with the insurance plan, they cannot file a lawsuit,” Wylam said.
The Nation's Health: Long COVID Creating New Challenges for Public Health: Problems Linger After Infection Fades
“This is a really, really big problem that’s just going to grow and grow as time goes on,” said disability attorney Andrew Wylam, president and founder of Pandemic Patients, a nonprofit that provides free assistance to people suffering from COVID-19-related illness. “The support these people are going to need is going to be enormous, and our disability system in this country is just not prepared for the influx of people who are going to be relying on those services,” Wylam told The Nation’s Health. “Many people aren’t sure how to go through the appeals process. Or they are out of work and are trying to apply for Social Security disability insurance and aren’t able to get it. Or it takes such an enormous length of time to get it that they either give up halfway through the process or they just have to find other ways to make ends meet.”
Policygenius: 44% of Americans Aren't Financially Prepared for Long COVID
“The safety net in this country is lacking,” says Andrew Wylam, co-founder of Pandemic Patients, a resource and advocacy organization for people with COVID and long haul COVID. “After becoming newly disabled, people's lives can quickly get turned upside down as they struggle to make ends meet.”
“With symptoms like brain fog, difficulty concentrating, and fatigue, people may be having a hard time satisfying their policy's definition of disability,” says Wylam. “It's hard to quantify these symptoms and their impact on a person's ability to work.”
Of course, not everyone will end up with coverage. “People with a workplace disability policy [or private disability policy] are probably in the best position [if they get long COVID], as long as they can become eligible for benefits,” says Wylam. Otherwise, “it’s a person's own savings and ability to financially plan for situations like this.”
