CF Advocates Convene on Capitol Hill for Teen Advocacy Day to Fight for Adequate, Affordable Care

As part of the Cystic Fibrosis Foundation's ninth annual Teen Advocacy Day, 162 advocates from 38 states met with elected officials in Washington, D.C., to tell their stories and make sure the cystic fibrosis community is heard in ongoing health care reform discussions.

| 3 min read

The teens met with senators, representatives, and congressional staffers to advocate for the needs of people with cystic fibrosis and to ensure that people living with chronic diseases are able to access adequate, affordable care. This year's Teen Advocacy Day came at a critical time for the CF community because, as the teens were meeting with their members of Congress, the Senate released the Better Care Reconciliation Act (BCRA), a bill that would directly impact many people with CF's ability to get the specialized care they need to live full, happy lives.

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82 teens from 38 states came to Washington, D.C., for the Cystic Fibrosis Foundation’s ninth annual Teen Advocacy Day, where they met with members of Congress to advocate for the health care needs of the CF community.

“While every Teen Advocacy Day is inspiring, this year's event really shows the strength of the CF community and the amazing individuals who are here to fight for their loved ones,” said Mary Dwight, senior vice president for Public Policy and Patient Assistance Programs at the Cystic Fibrosis Foundation. “We've made so much progress in our effort to find a cure for CF, but the BCRA fails to protect people living with CF. By sharing their stories, these 162 advocates are making sure members of Congress recognize the devastating impact it would have on the people who rely most on getting access to adequate, affordable care.”

After the text of the BCRA was made public, the Foundation reviewed the bill and announced its opposition to the legislation because of the harm it would have on the CF community's ability to access high-quality, specialized CF care.

Protections in current health care law that Teen Advocacy Day participants asked members of Congress to preserve included:

  • Coverage for people with pre-existing conditions, including guarantees that people with CF will be able to purchase health insurance, their health insurance will include services related to CF, and they will not be charged higher premiums because of their disease
  • Prohibitions on lifetime or annual coverage caps, which can cause individuals and families to go into crippling medical debt in order to access vital care
  • Supporting Medicaid by retaining expanded eligibility and ensuring adequate funding, as Medicaid provides a critical source of coverage for 50 percent of children and one-third of adults with CF
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Teens Natalie Castonguay (front left) and Tyler Gaccione (center) of Connecticut share photos of their loved ones who have cystic fibrosis with a congressional staffer. Also pictured (left to right): Dr. Dan Gaccione, Susan Castonguay, and Charles Castonguay.

This year's Teen Advocacy Day was led by the teens themselves, with CF Foundation interns Michaela Myerson, Kevin Cance, and Patrick Magner leading trainings and helping participants learn how to most effectively advocate on behalf of their loved ones.

“Seeing my two brothers battle CF every day, I know firsthand how important access to care is for people living with the disease,” said Patrick Magner, one of the Foundation interns who led the Teen Advocacy Day trainings. “It's so exciting to see young people from across the country come together to fight for the people they love to make sure they can get the care they need.”

For more information on how you can get involved in CF Foundation advocacy initiatives, contact us at publicpolicy@cff.org.

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Topics
Health Care Reform | Advocacy
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