Sick and Disabled People Protest Medicaid Bill at Capitol

Protest Contact: 

press@meaction.net 

Sick and Disabled People Protest Medicaid Bill at Capitol TODAY

Sick and disabled people are protesting today, Monday, May 12th at the Capitol to tell Congress that forcing chronically ill people to work in order to keep their Medicaid healthcare will only make our country sicker and more reliant on government services. 

#MEAction and our communities of people sick and disabled with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), Long COVID and other disabling conditions are organizing the protest to call on Congress to save the services that support disabled communities, and make our country stronger: Medicaid, home care support and research funding. We are sending out an SOS to Congress: Save our Social Supports. Save our Science. Save our Society:

"When people get sick and are unable to work, they need access to health care right away, not years in the future when they have their disability paperwork approved,” said #MEAction U.S. Advocacy Director, Ben HsuBorger. “In the early years of getting sick I did long-term damage to my health by pushing to keep my job when I needed to be focusing on stabilizing my health. Politicians are lying when they say that cuts to Medicaid won’t harm people with disabilities,"

Protest Details: We are protesting at Upper Senate Park next to the Capitol building in Washington, DC on May 12th, 12 - 2 p.m ET.  

#MEAction is a nonprofit organization advocating for people with ME/CFS and Long COVID. 

Why We are Sending out an SOS: 

Threats to Our Life Supports: Republicans plan to include work requirements in their Medicaid bill text released Sunday night, ahead of a Energy & Commerce committee hearing on Tuesday. For people who become suddenly ill with a chronic disease, like ME/CFS or Long COVID, and are forced to work to keep their health insurance, this will only make them sicker. 

“There are millions of working people on Medicaid who don’t deserve to be penalized by having their health care taken away just because they suddenly get sick with a debilitating disease and need to quit their jobs to focus on their health. We should not be forcing Americans to choose between making their health worse or losing access to healthcare,” said Ben HsuBorger, #MEAction U.S. Advocacy Director.

Dismantling of ME/CFS & Long COVID Research: In the past few months, the ME/CFS and Long COVID communities have witnessed the Trump administration take away research funding for ME/CFS, including halting funding for the ME/CFS research center at Columbia University and slashing Congressionally Directed Medical Research Programs, which has funded ME/CFS research in the past. Meanwhile, HHS has shut down the Long COVID Advisory Committee and the HHS Office of Long COVID Research and Practice - stripping patients of their opportunity to provide input into the research process, and dismantling attempts at organizing Long COVID research across scientific institutions.  "For a long time, research into infection-associated chronic illnesses like ME/CFS was underfunded. ME/CFS is still the lowest-funded illness compared to its disease burden in the NIH portfolio. When COVID became a national concern, that began to change. Now, we're facing a reversion to low funding leading to little to no research.  Patients have given their literal blood for the ME/CFS research centers, only to see their funding revoked and answers pulled just out of their reach.” – Jaime Seltzer, #MEAction’s Scientific Director 

Quotes from Protesters: 

"We've lost Medicaid and now we have to pay a large monthly premium on coverage that we can't afford without help from family and friends. Cutting Medicaid is antithetical to this administration's stated goals. They should be investing in people like [my wife] Shaina. The ROI would be tremendous!"  –  David A. Burks 

“I was a nurse, who worked out almost every day. I never thought that something like this could happen to me, but the truth is, becoming disabled could happen to anyone at any time. Will you want resources available to you if that happens? You are not as invincible as you think.” Ashanti Daniel, Disabled Nurse

“I offer free services to chronically ill people across multiple states. I am trying to become irrelevant, and if our society really were functioning as it should be… I would be. It is an emergency to care for chronically ill and disabled people. We cannot go backwards when forwards is the only direction that will save lives.” 

Dr. Ruby Tam

“I've been involved in science for my entire professional career, and I see science as hope and progress. I've had Long COVID for over five years at this point, and it's turned my life upside down. I think research on Long COVID and related illnesses like ME/CFS is at a crucial point. But, that will take stable and reliable funding from the federal government, and this administration is the exact opposite of stable and reliable when it comes to science. That's why I'm sending a science SOS  -- Save Our Science!”  –  Michael Sieverts

I am a person with severe ME since 1991. My group, MEAction GA, had been in discussion with CDC officials about the importance of stakeholder engagement. When the new administration came to power our previously scheduled meetings were cancelled. No event is planned this year.  It is unclear how many of our friends have been fired. – Liz Burlingame

“When former President Trump contracted COVID-19, he received the most advanced, unauthorized experimental treatment — care that preserved his quality of life and future.  I deserve the same opportunity. Now, Trump is dismantling the very systems meant to protect millions of Americans with Long COVID. 

As an oncology nurse, wife, and mother, I am fighting for the same chance at recovery that he was given. Access to life-saving treatment should not depend on wealth or power. Every American deserves the right to heal.” – Danielle Gillan