Rare Disease and Patient Advocacy Groups Oppose the “Graham-Cassidy” ACA Replacement Plan

The latest attempt to repeal the Affordable Care Act is a proposal authored by Senators Graham, Cassidy, Heller & Johnson. This proposal, if passed, would jeopardize access to care for millions of Americans, and especially the rare disease community. Here is a brief breakdown of the most problematic components of the proposal as it is currently understood (note that the sponsors have not released the actual proposal making it difficult to fully understand its implications):

  • Allows states to opt out of key insurance market protections for individuals with pre-existing conditions
  • Brings back annual and lifetime limits, limitless out-of-pocket costs, and wholly inadequate coverage.
  • Cuts hundreds of billions of dollars of Federal funding to the Medicaid program by instituting per capita caps.

Plan and simple, the ‘Graham-Cassidy’ proposal offers many of the same problematic proposals from previous repeal and replace attempts but includes new provisions which would jeopardize access to care for rare disease patients across the country. Passage of the bill in its current form would very likely result in millions of individuals with rare diseases losing health care coverage, access to orphan therapies and specialists, and protections against discriminatory insurance practices whereby insurers are allowed to charge premiums based on the health status of the individual. As a result, those with MSUD and other rare diseases may find themselves priced out of the private insurance market.

Instead of pursuing this legislation, we urge Senators to support the bipartisan efforts ongoing within the Senate Health, Education, Labor, and Pensions (HELP) Committee. This effort holds the promise of stabilizing the private insurance market and expanding insurance options for individuals with rare diseases. The National Organization for Rare Diseases (NORD) has provided recommendations to the HELP committee in August. We applaud the committee for considering the needs of rare disease patients.

In addition, we agree with Sen. McCain (R Arizona) and others who implore Congress to get back to the “regular order” of doing things. This means holding hearings, collecting data, and performing analysis to identify potential problems before any legislation gets drafted.

The MSUD Family Support Group urges our membership to call their senators - 1-844-872-0234 - and them to OPPOSE the ‘Graham-Cassidy’ Proposal. Ask your senators to support the “regular order” of enacting legislation and the bipartisan efforts of the HELP committee.


The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and were often denied coverage altogether. Even when they could find coverage, insurers often put annual or lifetime benefit caps on their coverage, essentially removing all coverage once they hit a particular cost ceiling. The Affordable Care Act banned these practices by forbidding insurers from discriminating against individuals with pre-existing conditions, outlawing annual and lifetime caps, and putting in place many other patient protections. NORD is coordinating with rare disease patient organization partners on strategy, and conducting meetings on the Hill to ensure coverage protections for rare disease patients remain. Thank you for sharing your experience with us so that we can be best suited to advocate on your behalf.

Visit for the full run down.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
Donate Today Learn More

Subscribe to our mailing list

Signup To Our E-Blast Signup with your email address to receive our e-blast newsletter.