We’re furious: Last-minute changes to defining medical frailty

We have an important update on #MEAction’s Frail and Furious campaign to protect access to Medicaid coverage for people with ME/CFS and Long COVID. 

Last-minute policy shifts by the Trump Administration propose to make the definition of medical frailty more restrictive, and make it more difficult for people to get exemptions from Medicaid work requirements. 

#MEAction is responding by pursuing parallel advocacy actions at both the state and the federal level. We will urge states to take all available steps to protect our community’s access to care under the new federal guidelines, while also pushing back that these federal guidelines need to be revised.

The Centers for Medicare & Medicaid Services (CMS), under guidance from HHS, just released an interim final rule to states on how to implement Medicaid work requirements and exemption rules, which take effect January 1, 2027. These CMS guidelines are open for public comment through Jul 31, 2026.

We are reviewing the CMS rule in detail, working with partners, and preparing a strong public response.

Medicaid work requirements will put many in our community at risk of losing their health coverage. Under the rule, individuals 19-64 who are enrolled in their state Medicaid expansion program will lose their health care unless they either work 80 hours per month, or prove they are “medically frail” to receive exemption.

The “medically frail” exemption included in the “Big Beautiful Bill” Congress passed last summer was problematic, but the federal guidance CMS has just issued is even more restrictive. 

This new guidance does not reflect the realities of living with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs), and many in our community may struggle to qualify or navigate the process, even though they are seriously ill. Under this rule, once again, sick and disabled people are asked to prove how sick we really are.

The CMS guidelines are hundreds of pages long and we don’t have space to cover all the problems with them here. The Center on Budget Policy Priorities and KFF have both published helpful summaries. We’ve also been informed that the Autistic Self Advocacy Network is currently preparing a plain language tool to assist in making public comments.

We will share more updates and calls to action in the near future. These are definitely not the guidelines we wanted CMS to issue, but know that we are prepared to keep fighting for our community using a multi-pronged state and federal strategy that escalates and adapts.  

We will continue to work for a future where our medical conditions are truly recognized and our significant support needs are actually met. 

Technical pieces to note: 

CMS did not issue a list of medical conditions that qualify as medically frail. Instead it instructed states to develop their own lists of serious or complex medical conditions. CMS also stated that having one of these conditions by itself is not sufficient to verify medical frailty. This is an evolving policy issue we are monitoring closely and evaluating ways to best protect our community’s access to care.

The vague definition CMS has offered for a “serious or complex medical condition” (which is one subcategory of medical frailty we have primarily focused our advocacy on) is defined as “a medical condition that is life threatening, seriously disabling without necessarily being life threatening, causing significant pain or discomfort that can cause serious interruptions to life activities, requiring a major time or effort commitment from caregivers for a substantial period of time, requiring frequent monitoring, associated with severe consequences or negative consequences for someone else, affecting multiple organ systems, requiring management to tight physiological parameters, requiring coordination of multiple specialties, requiring treatment that carries a risk of serious complications, or requiring adjustment in non-medical environments.”