#MEAction Sends Letter to 42 States Urging Recognition of ME/CFS and Long COVID as Serious Medical Conditions

#MEAction’s Campaigns Director, Ben HusBorger, has sent a letter to State Medicaid Directors in 42 states and the District of Columbia explaining why ME/CFS and Long COVID are serious, complex medical conditions, and thus people with these conditions should be exempt from the 80 hour work requirement. 

“People with ME/CFS, Long COVID, and related conditions risk losing essential healthcare and worsening health if their conditions aren’t properly recognized as serious or complex medical conditions.” 

New Medicaid rules will require recipients to work 80 hours per month or lose their health insurance – unless they can prove they have a "serious or complex medical condition” in order to get a "medically frail" exemption.  We know that both are true for the majority of our community but, once again, we are having to fight to prove this to our health leaders. 

In the letter to the state Medicaid directors, we are also advocating for people with chronic illness to be able to self-report being “medically frail” without complicated paperwork verification since we know how difficult accurate diagnosis can be.  

At the end of the day, this is also a fight for our State governments to finally begin to recognize the severe nature of ME/CFS and Long COVID - and to take these diseases seriously. We are fighting both to protect the most vulnerable in our community, and to educate our state leaders about these diseases at the same time! 

Our State Chapters will Drive this Campaign 

#MEAction's state advocacy teams will be at the heart of the fight to protect Medicaid this year since states are responsible for carrying out Medicaid work requirements. 

To drive this work, we are excited to welcome Therese Russo as our new Advocacy Manager. Therese will work directly with our state teams and chapters to plan, organize, and take action. Together, they will educate communities and push state Medicaid directors and lawmakers to protect Medicaid for people with ME, Long Covid, and other chronic illnesses. 

Therese is a disability and chronic illness rights advocate, public health analyst, and community organizer with over a decade of experience in nonprofit and government administration. She has researched Medicaid policy and managed health equity programs across New York City's 22 public hospitals. As a longtime #MEAction volunteer, she has represented us in advisory and advocacy roles with the NYC Department of Health, the CDC, and the NIH. Therese lives with ME/CFS, POTS, MCAS, and EDS+, and she is committed to building campaigns that work for people with fluctuating, energy-limiting illnesses. 

Fighting at the Federal Level

We are also fighting for “medically frail” recognition at the federal level. The HHS Secretary will issue guidance by June that will shape how states decide who counts as "medically frail." We are sending a letter to Robert F. Kennedy, Jr to urge him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected.

Sign the Letter!