"But you don't look sick." New Medicaid rules deepen stigma against people with ME and Long COVID. We're fighting back.

#MEAction has submitted its official public comment to the Centers for Medicare and Medicaid Services (CMS) about their new Medicaid work requirements regulations. There are just a few more days for you to submit your own public comment before the deadline at 11:59pm EST on Friday, July 31st. You don’t need to be a policy expert to make your voice heard. Use our easy template to share your story. 

Please support our work to help us continue the fight to recognize ME and Long COVID as serious and complex medical conditions

Donate to #MEAction

#MEAction has closely analyzed the CMS rules and found that they do not reflect the realities of living with an infection-associated chronic condition or illness (IACCIs) like ME and Long COVID—implementing these rules as currently written will be very harmful for our communities.

While the agency was mandated by Congress to create rules for how states will implement work requirements that were passed in OBBBA, the last-minute changes from the administration has made these rules even more harmful to chronic illness communities like ours. CMS’s overly narrow interpretation of medical frailty was so significant that 24 states are now suing the agency.

Our public comment doesn’t pull any punches either. We made clear that the agency’s "Failure to take into consideration the specific medical needs and challenges to accessing care of over 20 million Americans affected by IACCIs... will result in worsening health outcomes for patients, increased downstream Medicaid costs to tax payers, and it will inhibit the stated policy goal of furthering community engagement."

In a public comment document that spans over 13 pages we lay out a detailed case showing what those with IACCI expertise across government agencies have said about these conditions that CMS has completely ignored when defining medical frailty and serious and complex medical conditions.

In our comment we write, “‘But you don’t look sick’ are the words every patient with an IACCI dreads hearing from a healthcare provider uninformed about the proper clinical management of IACCI symptoms. This [CMS rule] could result in IACCI stigma being weaponized against patients, except instead of this stigma resulting in a delay or denial of IACCI-informed care, the individual will risk having their entire healthcare coverage terminated.”

Simply put, if doctors repeatedly struggle to effectively diagnose and treat conditions like ME and Long COVID how are States going to reliably verify people with these conditions are too sick to work? 

In our public comment we go into detail about the diagnostic criteria and required symptoms of ME/CFS as outlined in the 2015 Institute of Medicine report and adopted by the Centers for Disease Control and Prevention. The only accurate way to understand a diagnosis of ME/CFS is to accept it as a clinical judgement that an individual is medically frail and should not be required to comply with work requirements that may make their serious or complex medical condition worse. 

CMS’ new Medicaid work rules are an attack on our right to practice pacing and avoid PEM: 

“There is no medically safe way to withhold from an individual with ME/CFS the ability to limit their activity for symptom management purposes".

We insist that the starting point for any CMS rule needs to be listening to people with IACCIs themselves who are the ones who best know the extent of their medical frailty. Before CMS drowns people with ME and Long COVID in bureaucratic red tape it needs to acknowledge that improving the process for verifying exemptions from work requirements will only be possible by making real improvements to care for these medically frail individuals. 

We are working to ensure our community is protected through medical frailty exemptions, and keeps their health access. 

We continue to fight for our community and their right to healthcare access. 

Take action with us! Here are 3 things you can do today:

• Do you want your voice to be heard in #MEAction’s talks with Medicaid decision makers in the coming months? Share why Medicaid matters to you on our community story bank.

• Do you think you might be affected by the coming Medicaid work requirements? Share your story with NBC News by submitting their form.

• Do you want to learn other ways to help organize and take action to protect Medicaid access for people with ME and Long COVID in your state? Join a state or regional chapter meeting or reach out to advocacy@meaction.net.  

No one should have to sacrifice their health just to keep their healthcare. Keep up to date on our Frail and Furious USA campaign page.