NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act

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Washington, D.C., June 27, 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 response to the delay in consideration of the Senate Better Care Reconciliation Act:

“Today, Senate Leadership announced they will not hold a vote this week on the Better Care Reconciliation Act of 2017 (BCRA), an amended version of the American Health Care Act (AHCA) that passed the House of Representatives in May. We are grateful for the hundreds of rare disease patient advocates who have called, emailed, tweeted at, and sent Facebook messages to their Senators. The patient voice was loud and clear, and Senators listened.

We also thank Senate Leadership for postponing a vote on this legislation. We hope this delay will allow us to work with our Republican and Democratic champions in the Senate to address our concerns.

As discussed in a statement following the release of the bill, the BCRA, in its current form, violates several of our Principles for Health Coverage Reform. We are therefore compelled to oppose the legislation.

We will remain vigilant, and will encourage our advocates across the country to do the same. This bill, or a similar version of it, will likely be considered again when the Senate returns from recess on Monday, July 10th. The Senate will hear the voice of the rare disease community as they continue to deliberate on the bill.”

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