NORD Releases Statement on Orphan Drug Assessment & Pricing Summit

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Washington, D.C., May 31, 2017—NORD released the following statement in advance of today’s “Orphan Drug Assessment and Pricing Summit” held by the Institute for Clinical and Economic Review (ICER):

“We are pleased to participate in ICER’s ‘Orphan Drug Assessment and Pricing Summit’, and look forward to providing the rare disease patient’s viewpoint on the importance of orphan drugs. Most of all, we are eager to provide our perspective on the importance of the Orphan Drug Act, and the incentives within, in bringing life-improving, often life-saving, treatments to individuals with rare diseases.

We view value assessments, and other health economic tools for measuring the value of therapies, as potentially valuable ways to inform patients and physicians on the best therapy for their unique circumstances. However, we are concerned that when used inappropriately, or even recklessly, value assessments of orphan drugs could result in a harmful withdrawal of access to these critically important therapies.

Individuals with rare diseases deserve the same access to life saving therapies as everyone else. We will continue to fight for this basic right, and engage with ICER and all those in the value assessment community, to ensure individuals with rare diseases are not punished by these endeavors.”

Please stay tuned for NORD’s comments on ICER’s “Assessing the Effectiveness and Value of Drugs for Rare Conditions”. In addition, read our comments on ICER’s proposed updated of their value assessment as well as our comments on ICER’s “Patient Participating Guide”.