Nov. 14, 2016
Posted by Jennifer Huron
Washington, D.C., November 14, 2016—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the results of the recent U.S. election.
“Many of us were surprised by the outcome of the presidential election last week. The pollsters and the pundits were predicting a different outcome. But the long election season has ended and we have a new President, a new Congress, and a series of new challenges for NORD and the rare disease community.
Healthcare is one of the top priorities of President-elect Trump. At the top of the agenda is his pledge to replace the Affordable Care Act. With both houses of Congress having a Republican majority, the incoming President is likely to have support for his goals. The new President also has made comments about the drug development process and about the drug approval process at FDA and about other issues that may directly affect the rare disease community.
It is well known that NORD was an avid supporter of and advocate for the Affordable Care Act. This law addressed some of the issues that were most challenging for patients with rare diseases, such as the ability of patients with pre-existing conditions to obtain insurance and lifetime caps on coverage. Many of the patients that we represent have benefited from the ACA, though at the same time we know it has not worked for all.
We at NORD are preparing to work with the new Administration and the new Congress. To the extent that changes in the ACA will be either the subject of Presidential executive orders or of legislative action by the Congress, we are preparing to mobilize to protect those provisions in the ACA that benefit the patients that we represent. The advances to coverage reflected in the ACA must not be turned back.
We intend to provide leadership to other like-minded organizations. There is much uncertainty in political circles now, as the incoming President begins to fill positions and flesh out his proposals. We know that we will need to call on the entire patient-advocate community, and on individual patients, caregivers and health care providers, to communicate their views to the newly-appointed officials as well as to their elected representatives.
Any change in leadership in Washington or at the state level brings uncertainty and new challenges. As the leading advocate on behalf of the rare disease community, NORD is prepared to again lead the fight on behalf of patients with rare diseases. We will stay in touch with you to share information and calls-to-action as the new political landscape takes shape. If you have any comments or questions we encourage you to be in touch with us.”
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)