Raise your voice now to support access to potential new therapies, appropriate drug review and health status privacy rights!
Please raise your voice regarding the following items. It takes almost no time, but has a tremendous impact! Please urge your elected officials to:
Thank you for writing today, urging your elected officials to take action on the above legislation and issues, all of which impact access to therapies and care for our CF community.
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Protect those with cystic fibrosis by ensuring privacy rights, and improving access to new life-saving therapies.
Dear [Decision Maker],
I strongly encourage you to take action on the following issues, all of which would have a direct impact upon the cystic fibrosis and rare disease communities. I urge you to:- Support the re-introduced OPEN ACT (HR 1223) legislation. OPEN ACT legislation would dramatically increase the number of rare disease treatments available. The OPEN ACT builds on the success of the Orphan Drug Act and provides incentives to increase market potential for companies that "repurpose" previously approved drugs for the treatment of rare diseases such as CF. Many patients are using therapies "off label," which has inherent risks. Repurposing drugs is faster, less expensive and presents fewer risks than traditional drug development. - Protect funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA). Funding will be slashed under the Administration's proposed budget, with the NIH projected to lose $5.8 billion in funding (nearly 20% of its budget authority) and the FDA projected to lose hundreds of millions in funding. We need additional funding for the NIH and FDA -- not less! Without additional resources, the research to discover new therapies will be impossible, and the suffering our cystic fibrosis and rare disease communities endure will continue.- Reauthorize the Prescription Drug User Fee Act (PDUFA.) The PDUFA must be reauthorized to prevent the disruption of drug reviews by the FDA, which would delay the potential for new therapies to reach patients.- Prevent passage of the Preserving Employee Wellness Programs Act (H.R. 1313). This legislation would exempt employee wellness programs from patient protections that are included in the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA), thereby removing critical patient privacy protections related to genetic makeup and medical history. We cannot backtrack on the privacy principles and protections contained within the ADA and GINA. Please reject H.R. 1313!
Sincerely,[Your Name] [Your Address] [City, State ZIP]
Cystic Fibrosis Research, Inc. (CFRI) 1731 Embarcadero Road Suite 210, Palo Alto, CA 94303
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