Frail and Furious: 10 Things You Need to Know About New Changes to the Medicaid Program
- #MEAction
- Jun 18
- 3 min read
Last Sunday, we had a full and inspiring community meeting, which you can watch in full here. We reflected on the deep impact of storytelling at this year's MillionsMissing, shared advocacy wins, and discussed our ongoing work to secure funding for the NIH ME/CFS Research Roadmap and ensure that ME and Long COVID are recognized — by governments across the world — as serious, complex medical conditions.
We also discussed an important new development from the Centers for Medicare & Medicaid Services (CMS). Earlier this month, CMS released 400 pages of guidance explaining how states should implement new Medicaid work requirements and exemptions.
The Frail and Furious campaign was launched to protect Medicaid access for people with ME and Long COVID. These new guidelines will shape our advocacy in the months ahead. Below, we've outlined the key facts you need to know, the actions we're taking, and ways you can help protect healthcare access for our community.
1. Medicaid is a big deal.
Medicaid is the nation's largest health insurance and long-term care program. About 1 in 5 Americans rely on it for healthcare. The program goes by a different name in every state. Changes to Medicaid affect the entire healthcare system. Therefore, they affect all of us.
2. New Medicaid work requirements are coming.
The One Big Beautiful Bill Act requires many states to implement Medicaid work requirements.
3. Some people could lose healthcare coverage.
Under these new requirements, certain adults on Medicaid will need to document 80 hours per month of work or other qualifying activities. Those who do not meet the requirements or qualify for an exemption could lose their coverage.
4. This is why we launched Frail and Furious.
We know — most people ME and Long COVID are too sick to meet work requirements. Our campaign was created to ensure our community can access the medical frailty exemption and keep the healthcare they need to survive.
5. CMS just released 400 pages of guidance to states.
Earlier this month, CMS released an Interim Final Rule (IFR) explaining how states should implement work requirements and exemptions. These guidelines will shape what happens next.
6. The medically frail definition became more restrictive.
The new guidance says it is not enough to have a serious or complex medical condition. People will also need to prove that their condition significantly impairs their ability to meet work requirements.
7. We are very concerned. This means disabled people have even more barriers and paperwork, just to keep their healthcare.
The guidance could lead to more documentation requirements and administrative hurdles. This creates additional burdens for state agencies, healthcare providers, and — worst of all — for chronically ill and disabled people who do not already have a disability designation.
8. There is still hope—and the fight is far from over.
This is devastating news, but resistance is strong, and there is still a lot we don’t know about how this will be implemented and what exactly will be required of those affected.
Many disability and healthcare advocates have raised concerns, and we expect continued advocacy, public pressure, and possible legal challenges. We will continue pushing for policies that reflect the realities of people living with ME and Long COVID.
9. There is one encouraging development.
For the first year of the program, the IFR says states should allow people to self-declare that they are medically frail, at least in limited circumstances.
This matters because many people with ME and Long COVID face significant barriers to diagnosis and treatment. Self-declaration may make it easier for some to access exemptions if they don’t have extensive medical documentation.
We will continue advocating for self-declaration to remain available as a permanent part of the program, and be incorporated into exemption processes whenever possible.
10. Here's how you can join us in Frail and Furious advocacy, right now.
National actions
Share your story about why Medicaid matters to you, at our online community story bank.
Submit a public comment to CMS by July 31 using our template.
Level 1 Battery: Share #MEAction's Medicaid campaign post and upcoming Medicaid Monday videos on social.
State actions
Attend your state chapter meetings.
Watch for our upcoming state advocacy toolkit.
If you do not have a state chapter but want to get involved, contact advocacy@meaction.net.
The months ahead will be critical. We will continue advocating at both the federal and state levels to protect healthcare access for people with ME, Long COVID, and other Infection-Associated Chronic Conditions (IACCs). We would love for you to join us. Visit our Frail and Furious website to learn more about the campaign.
There’s also still time to donate and help power this work.
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