Making Progress for ME/CFS and Long COVID
State Medicaid leaders are listening. Here’s what we’ve won so far, and what comes next.
What happens to Medicaid affects people across the country. When people lose Medicaid, they may delay or go without needed care and rely more on emergency care. This puts more pressure on the health care system, decreasing care access and increasing costs for everyone.
HR1’s new Medicaid work requirements will create new barriers to getting and keeping coverage, and people with disabilities and people of color are likely to be most affected. People with disabling chronic illnesses like ME and Long COVID should be exempt, but the red tape involved in getting an exemption creates confusion, extra effort, and additional “sick work” for our community.
That’s why MEAction is leading the Frail & Furious campaign to protect Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs).
Over the past month, we’ve been meeting with state Medicaid leaders across the country. We’re working to make sure that people with ME/CFS and Long COVID are recognized under the medical frailty exemption and can keep access to the health care they rely on.
Our advocacy is also opening new doors to advance recognition of ME/CFS, Long COVID, and other IACCs within state public health leadership.
Some of our recent wins
Pennsylvania and North Carolina: Medicaid agency leaders have verbally confirmed that ME/CFS, Long COVID, MCAS, POTS, and hEDS diagnostic codes are on their lists of serious or complex medical conditions that may qualify for the medical frailty exemption.
Pennsylvania: ME/CFS is included as a Tier 1 condition, meaning an ME/CFS diagnosis alone can establish eligibility for the medical frailty exemption.
California, Wisconsin, and Colorado: We have made connections and met with state Department of Health contacts, and we are pursuing connections with health departments in Alaska and Nevada.
Bringing our lived experiences directly to decision makers: Four MEAction advocates have shared their personal experiences with Medicaid leaders in meetings.
Showing up at state meetings: MEAction advocates have participated in Medicaid stakeholder meetings and webinars in Maryland, Pennsylvania, Colorado, North Carolina, Oregon, and Arizona. They are asking questions and making recommendations that center people with ME/CFS and Long COVID.
There is much more work to do. The new requirements are scheduled to roll out by January 1, 2027, and states are scrambling to build the systems needed to implement them.
Through the Frail & Furious campaign, we’re seeing opportunities to improve how public health leaders recognize and respond to people with ME/CFS, Long COVID, and other conditions that are often missing from administrative data. The barriers our community faces—such as underdiagnosis, limited access to knowledgeable providers, and difficulty navigating health care—are shared by many people who rely on Medicaid. We are advocating that if state decision makers can build systems that work for our community, it will have built a system capable of protecting many other vulnerable people who rely on the safety net. Stay tuned.
Want to get involved?
Do you have contacts at your state’s Department of Health? We are looking for warm contacts in many states so we can reach the right decision makers. Send tips to advocacy@meaction.net.
Want to advocate for Medicaid access at your state’s stakeholder meetings? States are holding meetings and webinars about work requirement implementation this fall. Visit this page, and click the link for your state to find out more. If you plan to attend a meeting, email advocacy@meaction.net for talking points. Then, let us know how the meeting went so we can track advocacy happening across the country.
Come to your state chapter’s meeting! Find your state’s chapter meeting on this event page. Are you in a state without a chapter but want to get involved? Email advocacy@meaction.net.
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