Last year, the OPEN ACT, legislation that could double the number of treatments for rare disease, was left out of the draft of the House Cures bill. But policy makers had a change of heart after hundreds of patient advocates flooded the phone lines and asked Congress to put OPEN back in. Now, the OPEN ACT has again been left out again by the Senate, despite the support of over 160 national patient organizations! We need your help once again to get the OPEN ACT back in action. Please take a few moments to call Senators Alexander (R-TN) and Murray (D-WA) TODAY to ensure they help rare disease patients! Your call will make the difference.
To contact Sen. Lamar Alexander, dial: (202) 224-4944
To contact Sen. Patty Murray, dial: (202) 224-2621
Script for Senators Alexander & Murray:
- My name is [NAME]. I’m calling today as a rare disease patient advocate
- [Briefly explain your disease, 2-3 sentences]
- We urge you to support the OPEN ACT, S. 1421, and ensure that this life-saving legislation is included in the Senate Medical Innovations bill
- This provision is essential to bring lifesaving therapies to millions of rare disease patients. Please don’t let our loved ones die without treatment. Thank you for your time and consideration.
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