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Jul. 28, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement on the Latest ACA Repeal and Replace Developments

Posted by Lisa Phelps

Washington, D.C., July 28, 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 efforts to repeal and replace the Affordable Care Act:

“In the early hours of the morning, the Senate voted down a plan to repeal key parts of the Affordable Care Act (ACA). The latest proposal, called the Healthcare Freedom Act, but better known as the “skinny repeal,” would have repealed the individual and employer mandates, among a handful of additional provisions. The Senate failed to move forward with this plan by a 49 to 51 vote.

We were very concerned with the approach taken by the Senate, and are grateful to the 51 Senators who joined us in our concerns. The “skinny repeal,” if enacted, would cripple private health insurance markets by repealing, but not replacing, the incentive for healthy individuals to sign up for health insurance. We opposed this measure, and we joined hundreds of our advocates in urging Senators to vote no.

While we do not believe a skinny repeal is the answer, something must be done to repair the ACA and stabilize the private health insurance market. With our Principles for Health Coverage Reform in hand, we are eager to work with both parties and both houses in crafting solutions to the ACA’s problems. Premiums and deductibles are too high, networks are too narrow, and there are far too few insurers to compete in the marketplaces.

Most of all, we want to thank the thousands of rare disease patients, family members, caregivers, and engaged members of the community who made their voices heard loud and clear as the debate continued. There is still much work to be done, and we hope our advocates join us as we continue the conversation on how to fix the Affordable Care Act and improve our nation’s insurance coverage for the 30 million Americans with rare diseases.


NORD has been advocating for rare diseases during healthcare reform debate over the past several months. Learn More.

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