CF Teen Advocates Visit Capitol Hill for 10th Annual Teen Advocacy Day

More than 200 advocates from 32 states traveled to Washington, D.C., on June 28 for the Cystic Fibrosis Foundation's 10th annual Teen Advocacy Day, which enabled teens to meet with their elected officials on Capitol Hill to fight for access to high-quality, specialized care for their friends and loved ones living with CF.

| 3 min read

What began as a small event has grown into an annual tradition. In addition to sharing how cystic fibrosis impacts their lives, the teens who attend Teen Advocacy Day discuss serious issues that impact the CF community with their members of Congress, and this year was no exception. In small group meetings, teen advocates spoke about the needs of people with cystic fibrosis and encouraged lawmakers to support adequate, affordable, and accessible health care for the CF community, and to provide funding to enable further CF-related research and drug development.

“It is wonderful to see how much Teen Advocacy Day has grown,” said Mary Dwight, senior vice president for policy and advocacy at the Cystic Fibrosis Foundation. “This year, more than 200 advocates met with their elected officials to connect their experience with cystic fibrosis with the policies we support. These individual stories clearly illustrate why ensuring access to adequate, affordable, specialized CF care is so important, and why we must continue to pursue new therapies for CF.”

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Kaylee Vanderpool (left) met with Rep. Greg Walden (R-Ore.) to advocate on behalf of people with cystic fibrosis.

In their meetings, participants told members of Congress about the unique needs of people living with CF, and asked them to:

  • Protect Medicaid funding and oppose any barriers that might prevent people with CF from accessing the specialized, high-quality care they need. Medicaid is a vital source of coverage for half of children and one-third of adults with CF.
  • Avoid changes to the health insurance system that would split the market into plans for people who are healthy and those who are sick and raise costs for people who need more comprehensive insurance. Such proposals do not protect people with pre-existing conditions, like those diagnosed with CF.
  • Support robust, reliable funding for the Food and Drug Administration and the National Institutes of Health in fiscal year 2019. These agencies are critical to ensuring the continued advancement of CF research and drug development.
TAD-2018-Group-Photo-Rectangle-Caption
Abigail Leo and her mother, Jenica, posed for a photo with Rep. Joseph Kennedy III (D-Mass.) after discussing the unique needs of people with CF. (From left to right, Abigail Leo, Rep. Kennedy, Jenica Leo, Teen Advocacy Day intern Michaela Myerson, and the Cystic Fibrosis Foundation’s director of policy and advocacy, David Elin.)

To stay informed about the Foundation's advocacy work and get involved, text “FIGHTCF” to 52886 or sign up for the Foundation's Advocacy Alerts through our website.

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