Episode 18: 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. He says that the majority of cases handled by the organization involve people with Long COVID who have questions related to disability and employment. The program recruits attorneys who can provide individuals with assistance with a variety of challenges, including appeals for private insurance or Social Security, disability discrimination in the workplace, reasonable accommodations, workers compensation, and unemployment benefits. Through the organization, he seeks to provide a team of dedicated advocates to alleviate the stress of protecting one’s rights in the workplace, especially for those experiencing brain fog or other effects of Long COVID.

He discusses why it is so important to help people get involved in the policymaking process, which is the primary goal of the organization’s COVID-19 Advocacy Center. The Center makes it easier for people to connect with elected representatives to discuss issues related to Long COVID and policies that would be effective in addressing some of those challenges. One of the most important issues to the organization is advocating for a national policy requiring improved paid sick leave and more standards related to ventilation systems and other safety measures.

He also highlights some challenges with advocating for policy change around Long COVID. It’s challenging to achieve the organization’s goals because of the turmoil that has existed since the beginning of the pandemic. Much of that turmoil is working around misinformation and disinformation including conspiracy theories that Long COVID is caused by the vaccine. He also says that there needs to be better support for people who cannot work because of Long COVID. However, many people with long COVID want to continue to work but need assistance to better understand the concept of reasonable accommodation that is a part of the protections offered to individuals with disabilities under the Americans with Disabilities Act (ADA).  Mr. Wylam explains that for some individuals with Long COVID, their disabilities are new, and people are struggling to prove that they have a qualifying disability.

Wylam talks about the impact of COVID-19 no longer being a public health emergency. Not only does it send the message to Americans that the pandemic is over and precautions are no longer necessary, but it also removes government funding from some COVID-related prevention materials, such as test kits. The organization is urging Congress to further invest in suicide prevention and mental health counseling. He explains that the organization is focused on helping people cope with their new realities, which can be temporary for some but permanent for others. It’s about supporting people on an individual basis, whether their symptoms are temporary, or if they are permanent and lead them to a newfound identity of disability.


Andrew Wylam
Andrew Wylam
President, Pandemic Patients
Michael Morris
Michael Morris
Podcast Moderator, Burton Blatt Institute, Syracuse University

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