Washington, D.C., September 26, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the latest effort to repeal and replace the Affordable Care Act:
“Senate Leadership announced today that they will not proceed with a vote on the most recent attempt to repeal and replace the Affordable Care Act (ACA), known as the ‘Graham-Cassidy’ proposal. This proposal would have reduced Federal funding to the Medicaid program by hundreds of billions of dollars, in addition to undermining key protections for those with pre-existing conditions.
However, thanks yet again to the collective action of thousands of dedicated rare disease patients, family members, caregivers, and engaged members of the community, access to health insurance through Medicaid and private insurance markets has been spared.
Not only did the introduction of the ‘Graham-Cassidy’ proposal create great concern among patients and advocates alike, it also undermined crucial bi-partisan processes undertaken by Sens. Alexander and Murray of the Senate Health, Education, Labor, and Pensions (HELP) Committee.
While we opposed ‘Graham-Cassidy’, we also recognize that the ACA must be improved. Individuals with rare diseases still face premiums and deductibles that are too high, provider networks that are too narrow, and cost-sharing that is too onerous. It is our sincere hope that the Senate can return to the important work of stabilizing and reforming the private health insurance market. Earlier in the summer, we offered short- and long-term recommendations to the HELP Committee for stabilizing the private health insurance market and expanding insurance options for individuals with rare diseases; recommendations which we genuinely wish to return to. It is our belief that with patient input, and a commitment to bi-partisanship, the ACA can be improved for the betterment of the entire nation.
As the voice of the 30 million Americans with rare diseases, we are committed to remaining engaged in the process of securing lasting quality and affordable healthcare coverage for individuals with rare diseases. We truly hope our advocates and members of Congress will join us in making this a reality.”