This past week, the federal reconciliation package officially passed. The legislation covers a broad range of priorities, but for the Duchenne and Becker community, one area stands out: Medicaid.
Medicaid remains one of the most important support programs for individuals living with Duchenne. From access to specialists and therapies to in-home care and vital medical equipment, it’s not just a safety net. It’s a lifeline. With this, any change to Medicaid may understandably raise questions and concerns.
What’s Changing and What It Could Mean
The bill gives states greater control over their Medicaid programs, allowing them to tighten eligibility rules and change how funding is allocated. It also includes a $1 trillion reduction in federal Medicaid funding over the next decade, cuts that could significantly strain state budgets and limit resources for beneficiaries. While the full impact will unfold in the months ahead, the potential risks are clear: reduced access, increased complexity for families navigating coverage, and new barriers to care.
Where We Go From Here
What hasn’t changed is this community’s proven ability to advocate effectively and drive meaningful progress.
Since the MD CARE Act passed in 2001, families, researchers, and advocates have worked together to secure federal funding for research, expand newborn screening, and accelerate drug development. None of these advances happened on their own—they were the result of sustained effort and collaboration.
That experience matters now. As states begin to decide how to implement Medicaid changes, the same focused advocacy will be critical. We’ve navigated complex policy shifts before, and we’re prepared to do it again.
In the weeks and months ahead, PPMD will:
- Monitor how each state responds to the new Medicaid flexibility, and provide timely updates on what it means for your coverage.
- Support families and individuals with advocacy tools, educational resources, and opportunities to make your voices heard at the state level.
- Collaborate with other rare disease, disability, and healthcare organizations to ensure best possible outcomes.
We believe every person living with Duchenne and Becker deserves access to high-quality, affordable care, no matter their ZIP code.
This moment is a reminder of how critical it is to stay engaged, not just in Washington, but in your home state. Decisions made locally in the coming months will shape the day-to-day reality for thousands of families like yours.
The challenges are real. But so is our ability to meet them: with persistence, partnership, and the power of community.
Stay tuned for updates and ways to get involved. And if you have questions, PPMD is here to help. Contact PPMD’s Senior Director of Advocacy, Lauren Stanford: lauren@parentprojectmd.org.
We’ll face this moment like we always do: together.
The post Medicaid, Reconciliation Passage, and What Comes Next for Our Community appeared first on Parent Project Muscular Dystrophy.