Last week over 80 RARE Disease advocates lobbied on Capitol Hill to enable better access to Accelerated Approval of therapies.  We discussed H.R. 3737 “Unlocking Lifesaving Treatments for Rare-Diseases Act (ULTRA)” during our day on the hill.

Today, an additional piece of bipartisan legislation, the FAST Act  (HR 4132), was introduced in the House.  Incorporating the features of ULTRA, the FAST Act brings ULTRA closer to parity with the Senate’s TREAT Act.

The EveryLife Foundation reports this …

The EveryLife Foundation for Rare Diseases applauds the introduction today of HR 4132 the “Faster Access to Specialized Treatments Act (FAST)” by Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY). This bipartisan legislation will enhance the FDA’s Accelerated Approval process enabling more development of lifesaving treatments for those suffering from rare diseases. The provisions of FAST incorporate the goals of H.R. 3737 the “Unlocking Lifesaving Treatments for Rare-Diseases Act (ULTRA)”, and moves us closer to agreement with the Senate’s Accelerated Approval language in the TREAT Act that is supported by BIO, PhRMA and NORD.  ULTRA was introduced by Representatives Stearns and Towns in December and is supported by more than 140 rare disease patient organizations. The EveryLife Foundation enthusiastically supports FAST, as it promises to benefit all patients with rare diseases, and looks forward to working with Congressmen Stearns and Towns to bring about needed relief for these patients and their families.

You may see a copy of the FAST Act here. More details about ULTRA, including a list of the over 140 organizations support it can be found here.

Stearns’ Statement on FAST can be seen here.

 

1 thought on “FAST Act – Speeding Rare Disease Therapies, Educating Capitol Hill”

  1. Alisha says:

    Bring more awareness!

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