Given the incredible advances in drug development and the state-of-the-art care center model, it is more important than ever that all people with cystic fibrosis have access to adequate, affordable health care coverage. By advocating for access to high-quality, specialized care such as care centers and the innovative drugs coming out of the pipeline, we can make an incredible difference in the day-to-day lives of people living with this disease. CF advocates achieve success by continuously cultivating relationships with their federal and state representatives.
Building a Grassroots Advocacy Network of CF Advocates
There is strength in numbers. We always welcome more people who are interested in advocating for the needs of the community. As you continue to advocate, make sure that you empower others to advocate as well. A few ways to do this are:
- Continue showcasing the power of advocacy by first telling your story and weaving that into the greater CF story.
- Use local events to engage, educate, and empower others to join the strong network of CF advocates across the country.
- Emphasize that serving as an advocate is not difficult or time-consuming and can have a positive impact on our fight against the disease.
Extend the invitation to community members who are interested. Have them text “FIGHTCF” to 96387* to begin receiving advocacy alerts and information on how they can make a positive change for the CF community.
*Message and data rates may apply. Reply STOP to optout, HELP for help.
Participate in a Local Town Hall
Periodically, the Foundation will notify advocates about opportunities to participate in certain legislative campaigns, or to share their stories during a town hall or local forum. While you will be acting in your capacity as an individual, the Foundation can provide you with materials and guidance on current bills or discussions and how they would impact the CF community.
If it is an election year, you can also use this time to ask questions of the candidate or elected official. Knowing where candidates stand on health care issues can result in a more informed CF community during elections.
Participate in a Local Town Hall
Periodically, the Foundation will notify advocates about opportunities to participate in certain legislative campaigns, or to share their stories during a town hall or local forum. While you will be acting in your capacity as an individual, the Foundation can provide you with materials and guidance on current bills or discussions and how they would impact the CF community.
If it is an election year, you can also use this time to ask questions of the candidate or elected official. Knowing where candidates stand on health care issues can result in a more informed CF community during elections.
Write a Letter to Your Editor
Letters to the editor (LTEs) are one of the most effective ways to advocate at a local level. The LTE/opinion section is consistently one of the most read sections of a community newspaper. Many members of your community, including members of Congress, read this section to stay up-to-date on conversations happening in the community.
Each publication has different rules for submitting LTEs. However, some general rules apply:
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Keep it short: Publications usually ask that LTEs be between 150 and 200 words.
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Keep it on topic: Many times, LTEs are in response to a previously published article in that same outlet. When drafting an LTE, tie it to a recent article that relates to one issue.
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Keep your options open: If your area has multiple newspapers, or even more hyper-local community newspapers, it is good to respond to their articles. However, do not use the same LTE for multiple newspapers, as outlets want to run unique content.
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Know the rules: Each publication will have different requirements for submitting, such as providing your email, phone number, or occupation, and will have a different process for submitting an LTE. Familiarize yourself with these guidelines, as they will help increase the chances of your LTE being published.
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Keep the angle local: Make your points relevant to your community. If available, provide examples or data related to your community that highlight the community perspective. Most importantly, tell your story.
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Don't get discouraged: Outlets receive dozens of LTEs per day. Even if your LTE isn't ultimately published, it can influence other columns written in the paper, or even what editorial the board decides to write. Don't give up after a rejection. LTEs are powerful ways to keep a conversation going that is important to the community.
If you have questions on getting started, contact the Foundation by emailing publicpolicy@cff.org.
Work With Your Chapter to Advocate at Local Events
Your local Foundation chapter is a great resource for local events that can serve as advocacy opportunities.
Throughout the year, evaluate chapter events that may serve as an opportunity to discuss the importance of advocacy and how others in your community can be involved. Fundraising events like Great Strides provide opportunities to connect with other members of your community to share how you're advocating and ask them to join you in doing so.