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We are here to help people with CF get the insurance coverage they need. Hear how the Foundation helped the Cox family.

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Foundation Supporters Ask Congress to Ensure Health Coverage for CF Kids

August 2, 2007

Sydney Lee
Sydney Lee (above), age 9, "loves to sing and dance," wrote her mother Sandi DeBord to Sen. Patty Murray (D-WA). DeBord's letter made an impact as it was read during the senator's speech about the importance of SCHIP.

This week, more than 2,500 Cystic Fibrosis Foundation supporters asked Congress to expand health coverage for children with cystic fibrosis.

CF volunteers wrote their elected officials to convey the importance of the State Children’s Health Insurance Program (SCHIP), which ensures that many children with cystic fibrosis have access to the health care and treatments that they need. Congress is considering reauthorization of the program.

During the Senate debate, the impact of these letters was illustrated when Senator Patty Murray (D-WA) spoke of the importance of SCHIP by sharing the story of a 9-year-old child with CF, Sydney Lee. 

Standing beside a photograph of Sydney, and reading aloud from a letter written by Sydney’s mother, Senator Murray spoke about the importance of health coverage for children with chronic diseases. The Senate is expected to vote on this legislation by the end of the week.

Cystic fibrosis was also a part of the discussion in the U.S. House of Representatives. On Wednesday, the House passed its bill to reauthorize SCHIP with language to include cystic fibrosis as part of a new Pediatric Health Quality Measurement Program. The program will develop and evaluate quality measures and best practices for the treatment of diseases like CF.

SCHIP is only one of many important legislative issues that have tremendous significance for people with cystic fibrosis. By becoming an advocate with the Cystic Fibrosis Foundation, volunteers and supporters can directly influence the policies that help in the fight against cystic fibrosis. Learn more about becoming an advocate.


The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.