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The Cystic Fibrosis Foundation’s Public Policy Agenda 2013

Advocates speak out in Washington, D.C. for people with CF.

The Cystic Fibrosis Foundation’s mission is to find a cure for cystic fibrosis and to improve the quality of life for people with the disease. We accomplish this by funding lifesaving research and working to improve access to quality care and effective therapies for people with CF.

Through the Cystic Fibrosis Foundation’s efforts, people with CF are living longer than ever before, yet more needs to be done to help extend the lives of those with the disease.

Federal and state governments play a vital role in CF research, drug development and the ability of people with CF to access care centers and therapies. The Cystic Fibrosis Foundation urges federal and state elected officials to join us in our efforts to add tomorrows to the lives of people with cystic fibrosis.

Advance CF Research & Development

The Cystic Fibrosis Foundation is the world’s leader in the search for new treatments and a cure for cystic fibrosis. Extraordinary progress has been made, with a robust pipeline of potential therapies aimed at targeting the disease from every angle.

Although we’ve made great strides in the search for new treatments and a cure, the lives of young people with cystic fibrosis are still cut far too short. Support for federally funded research and drug review programs can help extend the lives of those with the disease.

Strengthen the Food and Drug Administration (FDA)

The U.S. Food and Drug Administration (FDA) plays an essential role in CF drug development, evaluating potential treatments and ensuring that they are safe and effective. The CF Foundation’s priorities are to:

• Ensure that Congress gives the Food and Drug Administration the resources to swiftly review and approve vital new CF drugs.
  
  
• Make certain that the FDA receives appropriate and adequate guidance from patients, providers and researchers when reviewing applications for new rare disease treatments so they can evaluate them effectively and efficiently.

Support the National Institutes of Health (NIH)

The National Institutes of Health (NIH), the nation’s medical research agency, supports innovative cystic fibrosis research that gets us closer to new therapies and the cures of tomorrow. The CF Foundation works to:

• Promote and protect programs that help researchers translate exciting scientific discoveries into potential treatments.
  
  
• Ensure that elected officials provide the NIH with the funding needed to support essential research.

Promote Access to Specialized CF Care

At the core of the Cystic Fibrosis Foundation’s mission is to help ensure that all people with CF have access to high quality, specialized CF care and treatments to live longer, healthier lives. As breakthrough new treatments emerge from the CF drug development pipeline, coverage for these essential treatments and access to accredited care centers is vital.

Preserve Federal Health Care Provisions

As health reform takes full effect next year, the CF Foundation will continue to urge state and federal decision-makers to provide access to specialized CF treatments and care centers by:

• Ensuring Essential Health Benefits include access to accredited CF care centers and the medications that form the core of cystic fibrosis treatment; and prevent overly burdensome barriers to drugs that help people with CF stay healthy.
  
  
• Developing Health Insurance Marketplaces that will ensure adequate and affordable coverage for high quality, specialized CF care.
  
  
• Expanding state Medicaid programs to provide coverage for specialized CF treatments and care for people with the disease without sacrificing the quality or scope of services.

Protect Medicaid, Medicare and State Health Programs

The CF Foundation encourages elected officials to make certain that Medicaid, Medicare and state health programs  provide comprehensive coverage for  the specialized, quality care and treatments people with CF need to stay healthy. The Foundation works to:

• Ensure that Early Periodic Screening, Diagnosis and Treatment (EPSDT) programs continue to provide the strongest services for the most needy and vulnerable children and families.
  
  
• Maintain funding for state health programs that provide vital support to people with cystic fibrosis and their families.
  
  
• Protect access to quality, specialized health care services.

Raise CF Awareness

Real progress toward a cure for cystic fibrosis has been made, but there is still more to be done. We need the support of elected officials in Washington and in state capitols throughout the nation to fulfill our mission and help extend the lives of those with the disease.

Educate Elected Officials About CF and How They Can Help

Our elected officials play a key role in supporting the CF community. The CF Foundation:

• Encourages U.S. Representatives to join the Congressional CF Caucus which serves as a voice for those with CF in the House and raises awareness about the disease. 
  
  
• Provides expertise to the CF Caucus on initiatives that improve the quality and length of life for people with cystic fibrosis.
  
  
• Urges other elected officials to collaborate with the CF Caucus on issues that benefit the CF community.

How do I become a CF Advocate?

Advocating for CF is easy — from sending a quick message to your elected officials to attending a meeting with your member of Congress, there are many ways to get involved. Here’s how to get started:

1. Send a message to your elected officials today: Send a pre-written letter on an urgent issue now. It only takes a minute and in the process you can register to receive important advocacy updates.
   
   
2. Meet with your representatives: It’s easy to meet with your elected officials, and each meeting can have a huge impact on the way CF issues are treated in Washington, D.C. and state capitals. Learn more about how to schedule a meeting.
   
   
3. Volunteer to become a District Advocate: Want to do more? Sign up to be a District Advocate. District Advocates build a lasting relationship with their local member of Congress in order to increase support for the Foundation’s policy agenda. Send an email to publicpolicy@cff.org or contact your State Advocacy Chair to get started.

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Updated 4/10/2013