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Cystic Fibrosis Foundation 2009 Successes: Advocating For and With Patients on Many Fronts

December 29, 2009

As the year closes, the Foundation and its advocates nationwide can point to many successes on critical CF-related issues. Here is a list of significant 2009 milestones that will help improve the lives of people with CF:

  • 102 Members of the U.S. House of Representatives co-sponsored the Improving Access to Clinical Trials Act of 2009 (H.R. 2866), which will remove financial barriers that discourage participation in clinical research. The Foundation continues to work with the House and the Senate to pass the bill.

  • 20 new Representatives became members of the House Congressional Cystic Fibrosis Caucus – bringing the total to 147 and making the CF Caucus one of the largest in Congress.

  • In September, funding was restored to New York’s CF Adult care program after it had been targeted for elimination. 

  • In October, New York CF patients’ ability to use the Cystic Fibrosis Services Pharmacy was protected. New York Governor Paterson signed legislation to allow people with CF in that state to continue getting their medications through the pharmacy

  • In June, all 50 states, along with Washington, D.C., began requiring that all newborns be automatically screened for cystic fibrosis – a big win for CF advocates. 

  • In May, in a Senate Appropriations Committee hearing on biomedical research, Senator Richard Shelby (R-AL) and Acting NIH Director Raynard Kington, M.D., Ph.D., acknowledged the CF Foundation as a leader in rare disease research

  • In April, the Idaho Adult CF program was protected from funding cuts that would have reduced healthcare services for people with CF in the state. 

  • In January, Senator Patty Murray (D-WA) spoke of the importance of the Children’s Health Insurance Program to Brenna Krug, a 6-year-old child with CF from Marysville, Wash., during a Senate debate. In February, President Obama signed the bill into law, expanding the healthcare program to an additional 4 million children, including many with CF.

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