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.
The federal government plays a vital role in the discovery and development of new cystic fibrosis treatments. The Cystic Fibrosis Foundation urges Congress to join us in our efforts to add tomorrows to the lives of those with CF.
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. Real progress is being made, with a robust pipeline of potential therapies, in various stages of development and testing, aimed at targeting the disease from every angle.
Although great strides have been made 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 Food and Drug Administration (FDA) plays an essential role in CF drug development, evaluating potential treatments and ensuring that they are safe and effective.
- Ensure that Congress gives the U.S. 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.
Support the National Institutes of Health (NIH)
The National Institutes of Health (NIH), the nation’s medical research agency, performs and promotes the innovative research that helps translate basic scientific discoveries into the cures of tomorrow.
- Promote and protect programs that help researchers translate exciting scientific discoveries into potential treatments, an expensive and complex process.
- Ensure that elected officials provide the NIH with the funding needed to support essential research.
Promote Access to Care
Cystic fibrosis is an expensive disease. People with cystic fibrosis have medical costs approximately 15 times greater than the average commercially-insured person, requiring longer and more frequent hospital stays and paying more for prescription drugs. Over half of all children and more than one in three adults with CF rely on public assistance programs for their care. It is essential that these vital care programs remain well supported.
Preserve Federal Health Care Provisions
Enable people with cystic fibrosis to access the care and treatment they need to live longer and healthier lives.
- Support access to quality health care that adheres to the current standards recommended by CF medical experts.
- Help cystic fibrosis patients get the medical care they need by reducing the unmanageable cost-share burden of this disease.
Protect Medicaid and Medicare
Medicaid and Medicare need protection in order to ensure that people with cystic fibrosis who rely on these programs have access to the specialized, quality care and treatments they need to stay healthy.
- 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.
- While states should have latitude to craft policies that best serve their populations, the federal government should continue to provide guidance and benchmarks to assist states in effectively managing the health needs of people with rare, chronic diseases.
Raise CF Awareness
Real progress toward a cure for cystic fibrosis has been made, but the lives of young people with CF are still cut far too short. We urgently need the public’s continued support to fulfill our mission and help extend the lives of those with the disease.
Elected Officials Can Help
Our representatives have a key role to play to help build support for the CF community.
- Members of Congress can raise awareness by joining the Congressional Cystic Fibrosis Caucus. The Caucus serves as a voice for the cystic fibrosis community in the U.S. House of Representatives.
- Other elected officials can support the efforts of the Congressional CF Caucus to increase awareness of cystic fibrosis among the public and find ways to improve the quality and length of life for those with CF.
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:
- 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.
- 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, DC and state capitals. Learn more.
- 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 members of Congress in order to increase support for the Foundation’s policy agenda. Send an email to publicpolicy@cff.org to get started.
Public Policy Updates
View the Cystic Fibrosis Foundation’s Cystic Fibrosis Policy Bulletin for quarterly updates on how Medicare, Medicaid, Health Reform and budget measures impact CF care and coverage.
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Updated 1/14/2013
