If You Speak, They Will Listen: Advocating on the Hill

March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.

Feb. 18, 2016 | 4 min read
Mary B. Dwight

On Feb. 25, we will celebrate our tenth annual March on the Hill. March on the Hill is a chance for cystic fibrosis advocates to share their personal stories with their Congressional representatives while advocating for the Cystic Fibrosis Foundation's policy agenda and reminding them of the important role they play as we continue to work toward finding a cure for CF.

When we launched our first March on the Hill in 2007 the CF drug development pipeline looked very different than it does today. Many of the drugs that are now considered part of the standard of care for people with cystic fibrosis were still in the early stages of development. Starting in 2010, the Foundation spearheaded the passage of three key pieces of legislation focused on improving access to clinical trials and streamlining review at the Food and Drug Administration. This is an amazing accomplishment and one that would not have been possible without the hard work and dedication of our volunteer advocates. 

During this time, many of our advocates formed strong relationships with their elected officials through this event and are welcomed back to their offices year after year to give updates on their loved ones with CF. 

Some members and staffers even know our advocates by name and recall their story every time we visit. This is the power of advocacy and the CF story. 

The approval of Kalydeco, just before the 2012 March on the Hill, proved to be particularly exciting for the community as they could share this milestone with their members of Congress. One such story was told so many times to various congressional members and their staff throughout the years that it made its way to the oval office! The story of Bill Elder Jr. waking up in the middle of the night and breathing through his nose for the first time in his life because of Kalydeco was so transformative and powerful that Bill was not only invited to attend the 2015 State of the Union address as a guest of first lady Michelle Obama, but was later celebrated by President Obama during the launch of the Precision Medicine Initiative, who shared his story with the entire nation.

These stories about people benefiting from taking Kalydeco helped paint a clear, tangible picture of how the right players with the right resources can create something groundbreaking and life-changing. Breakthrough science at the National Institutes of Health, along with an expedited and efficient review process at the FDA, helped bring Kalydeco to the CF community while spreading hope and optimism to people with CF and their families.


But none of this would be possible without the support of our elected officials, as Congress provides critical funding to scientists and researchers and ensures that the FDA has robust resources to make sure that new therapies are safe and effective. By sharing their stories, our advocates are making connections on the Hill that can have lasting impact on policies that affect the CF community.

It has been a humbling experience to see this event grow from a small, dedicated group of volunteers to more than 70 volunteers from across the country holding meetings with hundreds of members of Congress. Today, we are continuously writing the CF story, and every actor plays a critical, long-term role. And as this event grows, so does the cystic fibrosis story.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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As senior vice president of policy and advocacy, Mary directs the Foundation's public policy agenda and efforts to support people living with CF. She is a catalyst for accelerating efforts to remove barriers to clinical drug development and also leads the strategic development of the Foundation's efforts to enable and expand access to CF care.

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