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.

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

Read More

NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

Read More

Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

Read More

Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

Read More

MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

Read More

The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

Read More

19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

Read More

Change the lives

of MSUD adults and children

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates