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.
Schedule an In-District Meeting With Your Federal Lawmaker
While traveling to Washington, D.C., and telling your CF story on Capitol Hill is exciting and impactful, scheduling in-district meetings with federal lawmakers is a great way for advocates to build relationships and cultivate a continuous drumbeat of advocacy. According to the Congressional Management Foundation, the average member of Congress is home 40 weekends a year, and, while at home, lawmakers tend to have more time to spend with advocates and are less distracted by their obligations in D.C.
Congressional Recesses
Congressional recesses are ideal times to schedule meetings with members of Congress. In-district meetings help foster positive and productive relationships with members of Congress and help ensure that they better understand the need for adequate, affordable, and accessible health care coverage for people with cystic fibrosis.
The 2019 Congressional Recess calendar is as follows*:
- U.S. House of Representatives
- April 15-26
- May 27-31
- July 1-5
- July 29-Sept. 6
- Sept. 30-Oct. 11
- Nov. 4-8
- Nov. 25-29
- Dec. 16-31
- U.S. Senate
- April 15-26
- May 27-31
- July 1-5
- Aug. 5-Sept. 6
- Sept. 30-Oct. 14
- Nov. 25-29
- Dec. 16-31
*Note: Recesses are subject to change. Please visit senate.gov or house.gov for a full calendar.
Preparing for an In-District Meeting
After you have scheduled the meeting, contact your local chapter and the Cystic Fibrosis Foundation and ask for talking points and materials. Additionally, visit the lawmaker's website, Facebook page, or Twitter feed to see the member's most recent statements and positions on health care. Make sure to prepare and practice your personal story and think about any visual aids that may appropriately depict your story in a way that's impactful.
After Your Meeting
After your meeting, it is important to follow up with the office as well as the Foundation. If you get a question that you were unable to answer, tell the lawmaker that you will follow up. The Foundation is always available to help with the response.
The Foundation also encourages you to talk about your time meeting with your federal lawmaker on social media. Use the hashtag #CFadvocacy and tag the Foundation, as well as your lawmaker's official account, before and after your meetings. You can also use social media to say “thank you” and share any photos you took during the meeting.
Participate in a Legislative Campaign or 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.
You can also work with the CF Foundation to set up a care center tour for your policymakers. This is a wonderful opportunity for policymakers to not only learn about the intricate and complex care center model, but also connect with their community and see the realities of CF.
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 52886 to begin receiving advocacy alerts and information on how they can make a positive change for the CF community.