There are many ways that a person can effect change. Cystic fibrosis advocates have transformed what was once a complicated and insurmountable disease into one of the best stories in medicine.
A Culture of Advocacy
In 1955, a group of concerned parents faced with the unimaginable — losing a child to a little-known illness — joined together to form the Cystic Fibrosis Foundation. Born out of the need to raise awareness of the disease, the CF Foundation was established as an advocacy organization. Today, the CF Foundation continues that culture of advocacy by working with the CF community to advance policies that support access to high-quality, specialized care.
The Importance of Telling Your Story
Just one person’s voice can have tremendous impact. In 2017, Congress was considering several health care proposals to remove some of the important health care protections included in the Affordable Care Act. Prior to a pivotal vote on one of the proposals, a woman approached U.S. Senator Susan Collins at a Fourth of July parade in Maine and told her, “The bill is terrible, and my grandson has cystic fibrosis — he is going to have it his entire life. It’s a pre-existing condition.”
Senator Collins cast one of the deciding votes against the bill — a victory for people with pre-existing conditions. When asked about the vote, Senator Collins has cited that conversation as a driving force in her decision.
Anyone Can Be an Advocate
The CF Foundation actively engages with volunteer advocates of all ages and connections to the disease — CF advocates include people living with CF, family members, caretakers, friends, romantic partners, and clinicians. Whoever the advocate is, they have a story to share that can spark emotion, ignite conversation, and effect change.