At every level of government, cystic fibrosis advocates work with policymakers to ensure that the needs of the CF community are understood, and that any law put into place takes the complex, intricate health care needs of people living with CF into account. The Cystic Fibrosis Foundation and volunteer advocates from the CF community work together to educate federal and state lawmakers about the needs of people with CF, so that lawmakers can maintain policies that:
- Promote access to highly specialized, quality CF care and treatments
- Protect Medicaid, Medicare, and other state and federal programs that people with CF rely on to access the care and treatments they need
- Ensure CF drugs are safe and effective
- Support innovative research that helps our progress in finding a cure
For Volunteers
There are many ways our volunteers advocate across the country. Members of the community can act on issues that matter to them by:
-
Signing up for advocacy alerts: By texting “FIGHTCF” to 52886, advocates stay in the loop with the CF Foundation and how we're fighting for people living with CF. Once advocates join our advocacy list, they will receive periodic communication about upcoming legislation, how to contact congressional members, when to tune in to important informational webinars the Foundation hosts about relevant policy work and opportunities to take action, and how to get further involved with the CF Foundation's advocacy community.
-
Signing up to share your story with the CF Foundation: The Foundation keeps a collection of stories from our advocates to use in different communications tactics around legislative campaigns. Some of these tactics may include letters to the editor, submitting legislative comments, or drafting blog posts.
-
Scheduling an in-district meeting with your federal lawmaker: In-district meetings are a great way for advocates to introduce themselves to federal or state lawmakers and begin building a relationship with them. While at home, lawmakers will typically have more time to spend with members of their community and be less distracted by their obligations on Capitol Hill.
-
Leveraging social media: By using the hashtag #CFadvocacy, advocates show their advocacy efforts on social media.
-
Participating in legislative campaigns: Periodically, the CF Foundation will alert our advocates of opportunities to lend their voice to certain legislative and regulatory campaigns. The CF Foundation may ask advocates to submit comments on proposed rules. Other times, we may ask advocates to call their legislator about a particular piece of legislation. Whatever the action, the CF Foundation will provide guidance and suggestions for that engagement.
-
Attending a CF Foundation advocacy event: Every year, the CF Foundation holds national advocacy events, like March on the Hill and Teen Advocacy Day in Washington, D.C., and State Advocacy Days at state capitols, that help advocates from across the country meet face-to-face with their representatives and talk about the needs of the CF community. If you are interested in participating in March on the Hill or Teen Advocacy Day, or learning if there is a State Advocacy Day happening in your state this year, contact your local CF Foundation chapter.
For CF Care Providers and Researchers
CF care providers and researchers are also excellent CF advocates. There are many opportunities, including the ones above, to fight for people with CF and ensure they receive the highly specialized care they need to stay healthy and lead fulfilling lives. In addition to the activities above, CF care providers and researchers can join the fight by:
-
Hosting a CF care center tour: Inviting policymakers and decision-makers to tour a CF care center is a great way to educate them about CF and the complex care and treatments people with CF need to stay healthy. The CF Foundation can help plan and execute these tours.
-
Informing coverage decision-makers: The CF Foundation engages with Medicaid officials, Drug Utilization Review Boards, Pharmacy and Therapeutics Committees, legislators, regulators, and public and private payers on the complexities of living with CF, coverage challenges, and the innovative CF care model. Clinical experience is a powerful tool in educating these decision-makers on how to best design programs and policies to help people with CF.
However you decide to lend your voice, the CF Foundation will aid you in your advocacy journey. To learn more about these or other advocacy opportunities, email publicpolicy@cff.org.