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Wednesday, March 8, 2017

NORD Issues Statement ACA, AHCA, Medicaid

A EURORDIS and NORD Member Organization
It is precisely for the fine work NORD and EURORDIS performs representing its members with our lawmakers that MEBO is proud and grateful to be an Organization Member. With all the upheaval about healthcare in the United States, NORD is in the forefront representing the needs of Rare Disease sufferers.


NORD Issues Statement as House Committees Review the American Health Care Act
, , 

Posted by Jennifer Huron

Washington, D.C., March 8, 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 in advance of today’s hearings on the American Health Care Act:

Monday evening, House Republicans released their long-awaited Affordable Care Act (ACA) replacement package called the American Health Care Act (AHCA). This bill aims to repeal many ACA provisions through budgetary reconciliation, and replace them with alternative provisions.

On behalf of our over 260 member patient organizations, NORD put forward a set of ‘Principles for Health Coverage Reform‘ to which Congress and the Administration should adhere in order to avoid harming rare disease patients in their repeal and replace efforts.

After comparing the AHCA to our principles, we find that several key patient protections are maintained, but changes to the private insurance market and Medicaid program may jeopardize access to affordable, quality health care for rare disease patients. We look forward to working together with Congress to resolve these potential patient access issues...

While the AHCA adheres to several of our principles, additional changes to Medicaid may jeopardize the health and wellbeing of Medicaid beneficiaries with rare diseases. We are concerned about the effect instituting per capita cap allotments may have on medically necessary care for individuals with rare diseases. Individuals with rare diseases are already facing Medicaid access challenges in many states, and we believe cutting Federal contributions may worsen the situation...

Read about NORD’s ongoing policy work to address the coverage protections of all 30 million rare disease patients. 
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María

María de la Torre
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