Advocacy Achievements

Together, we can speak out, get involved, and inspire action to affect public policy and make an impact on CF

Sen. Markey and Teen Advocates

Federal Initiatives

The Cystic Fibrosis Foundation had a number of opportunities in 2014 to discuss cystic fibrosis and the needs of people with CF and their families with U.S. Congressional and Senate leaders. In February 2014, the Cystic Fibrosis Foundation hosted a Congressional briefing, entitled “Personalized Medicine and Quality Coordinated Care: The Cystic Fibrosis Model,” to discuss the benefits of the Foundation’s model of specialized, coordinated care and how its innovative strategies for drug development can serve as an example for other rare diseases.

The Foundation was also able to bring the CF perspective to two events hosted by the U.S. House Energy and Commerce Committee through the 21st Century Cures initiative. In July 2014, Dr. Bob Beall, president & CEO of the CF Foundation, testified at a hearing focused on the patient perspective in drug development. Dr. Beall highlighted the Foundation’s success in drug development and emphasized the importance of patient involvement throughout the development of new treatments. Dr. Frank Accurso, Director of Cystic Fibrosis Clinical Research at Children’s Hospital Colorado and University of Colorado Denver, also participated in a congressional roundtable focused on personalized medicine in September 2014 where he advocated for people with cystic fibrosis and suggested ways Congress can support biomedical innovation and drug development.

CF advocates played a role in federal advocacy this year, asking their elected officials to support important legislation such as the Newborn Screening Saves Lives Reauthorization Act, which was finalized in both the House and the Senate in December 2014 and signed into law. The CF community sent more than 6,000 messages to all 100 senators explaining the importance of newborn screening to the CF community and asking them to support this vital law.

For more information on the CF Foundation’s federal policy work, visit our Briefings and Testimonies page.

State Initiatives

Sen. Markey speaks at CF Foundation-hosted Congressional briefing.

Senator Edward Markey (D-Mass.) speaks about the benefits of the CF model at a CF Foundation-hosted Congressional briefing.

In 2014, the CF Foundation spearheaded advocacy efforts in 31 states including educating state decision-makers about the needs of people with CF and collaborating with CF care center providers to help ensure access to quality, specialized treatments for people with CF. 

A highlight of these ongoing efforts includes testimony provided by Michigan care center directors, Dr. John Schuen of the Helen DeVos Women and Children’s Center and Dr. Samya Nasr of the University of Michigan Health System, at a Michigan Medicaid committee meeting, urging the state to protect access to pancreatic enzymes for people with cystic fibrosis. As a result of their efforts and testimony submitted by the Foundation, the committee agreed to provide open access to all FDA-approved non-generic enzymes.

“It was truly an inspirational meeting,” said Dr. John Schuen. “It was one of those moments that reminds you that the CF community can make a difference.”

In addition, Ohio Medicaid leadership invited the CF Foundation, CF advocates and care center providers to discuss the importance of the CF care center model and how it can be helpful for other disease populations. The meeting spurred productive conversation, allowing Medicaid personnel to learn from the experiences of patients and families as well as care center personnel, including doctors, social workers, and care coordinators. Furthermore, the CF Foundation, providers, and state Medicaid leadership are discussing how to define the care center network as a medical home under this program for individuals with CF. Similar efforts will also occur next year in Texas and other states.

Grassroots

With the help of the CF Foundation, advocates across the country connected with their elected officials in 2014 to share what cystic fibrosis means for patients and families. Last year, CF advocates held more than 500 in-person meetings and sent more than 60,000 messages to their legislators, asking them to support initiatives vital for the CF community such as newborn screening, the drug review process at the Food and Drug Administration, basic and translational research at the National Institutes of Health (NIH), and state programs that ensure access to quality, specialized cystic fibrosis care. 

Members of the CF community shared their personal CF stories with legislators on Capitol Hill as part of the Foundation’s two annual lobby days, March on the Hill and Teen Advocacy Day. At these Washington, D.C., events, CF advocates met with their elected officials to talk about their experiences with CF and to ask their legislators to increase funding for the NIH and the FDA in order to further CF research and help streamline the CF drug development pipeline.

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Updated: 12/22/2014