CF Advocacy Campaign

Urgent Call to Action! Congress is debating several pieces of legislation that impact our CF and rare disease communities!

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:

  • Support the re-introduced OPEN ACT (HR 1223) legislation. OPEN ACT legislation would dramatically increase the number of rare disease treatments available.
  • 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, thereby removing critical patient privacy protections related to genetic makeup and medical history.

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.

Recipients

  • Your Senators
  • Your Representative
  • Targeted recipients based on your address

Contact

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Message

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.

- 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!




The needs of the CF community are often overlooked because this complex disease impacts approximately 30,000 people in the U.S. and is considered a "rare disease" by the Federal government, i.e., one that impacts less than 200,000 people in the nation. Approximately one in 31 Americans is believed to be a silent carrier of the mutated CF gene that leads to a defective exchange of fluids across cells, causing secretions to clog ducts and passageways in the lungs, pancreas, sinuses, and reproductive systems. The primary cause of death is respiratory failure.

The treatment of this devastating disease is both time consuming and expensive; CF has a devastating emotional and financial impact upon American families impacted by the disease. The median age of death for those with cystic fibrosis is only 30 years.

I am proud to be part of Cystic Fibrosis Research, Incorporated's (CFRI) efforts to increase access to new therapies and medications. CFRI was founded in 1975, when children with CF rarely survived childhood. Based in Palo Alto, CA but with a global reach, CFRI provides vital education and support, promotes awareness, and funds CF research. You can make a difference in the lives of 30 million people affected by rare diseases in America, including 30,ooo with cystic fibrosis. Thank you for recognizing the overwhelming challenges of these life-shortening diseases and taking steps to protect our privacy rights, and improve our access to new potentially life-saving therapies.

Sincerely,
[Your Name]
[Your Address]
[City, State ZIP]