Advocacy Achievements!

Together we can affect public policy and make an impact on CF

• The CF Foundation succeeded in its campaign to have laws enacted in all 50 states and the District of Columbia to require that all newborns be automatically screened for cystic fibrosis.  Learn more.
  
  
• 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. Learn more.
  
  
• In New York, the CF Foundation and CF Advocates restored funding to the state’s CF Adult care program after it had been targeted for elimination.
  
  
• In Idaho, the CF Foundation and CF Advocates persuaded the Legislature to protect the Adult CF program from a bill that would have removed funding for the program.

Foundation Asks Washington to Consider CF Patients During Health Care Reform Discussions

• On April 6th, 2009, the CF Foundation sent a letter to President Obama, the Administration’s health officials, congressional committees with jurisdiction over health care, and congressional leadership, urging them to recognize the unique health care needs of people with CF as health care reform becomes a priority in Washington. The letter articulates the need for CF patients to have access to high quality, comprehensive and coordinated health care and to benefit from advancements in CF therapies.

Our 2008 successes

Newborn Screening Saves Lives Act Passes

• The Act provides help to the states to expand or establish newborn screening programs.
  
  
• The CF Foundation actively supported this bill and continues to work with the federal and state governments as the new law is implemented.
  
  
• Learn more about newborn screening and to see if your state is doing its part.

U.S. House Passes Bill That Could Help Fuel CF Research

• The U.S. House of Representatives passed legislation to reauthorize the Small Business Innovation Research (SBIR) program, which provides grants to small biotechnology and pharmaceutical companies.
  
  
• The legislation includes a provision requiring that special attention be given to research for rare diseases, like CF, when SBIR grants are awarded.
  
  
• Robert J. Beall, Ph.D., president and CEO of the CF Foundation testified before Congress to ensure passage.

CF Awareness Resolution Passes in Both Chambers of Congress

• The U.S. Senate and the U.S. House passed the Resolution, which officially recognizes May as National CF Awareness Month.
  
  
• By passing the Resolution, Congress signaled its commitment to finding a cure or control for CF.

CF Advocates Participate in First Ever Summer Advocacy Campaign

• This past summer, nearly 50 CF Advocates across the country met with their members of Congress to tell them, face-to-face, what it’s like to have CF.
  
  
• Advocates asked their Members of Congress to support the CF Foundation’s public policy agenda.

Number of States Screening Newborns for CF Increases to 45

• At the close of 2008, 45 states, plus the District of Columbia, were screening for CF – up from 36 in 2007.
  
  
• Additionally, Utah and North Carolina will begin screening in January 2009.

Membership in CF Caucus Increases Dramatically in 2008

• At the end of 2008, 138 Representatives had become members of the House Congressional Cystic Fibrosis Caucus.