PROGRESS & AWARENESS

CF Foundation Develops Congressional Cystic Fibrosis Caucus in the USA
By Kathryn White

In March 2006, Congressmen Edward Markey (D-MA) and Cliff Stearns (R-FL) partnered to be co-chairs of the newly created Congressional Cystic Fibrosis Caucus. The mission of this bipartisan caucus is to educate members of Congress and the public and raise the overall profile of the effects of cystic fibrosis. It also aims to work to improve the well-being of individuals stricken with the disease; to support scientific research through increased governmental funding; to foster cooperation between the public realm and private industry (i.e., pharmaceutical companies); to achieve early detection of the disease through the increased testing of infants; and to promote government policies that focus on medical research and the specific health care needs of patients with cystic fibrosis.

A congressional caucus typically operates outside of the official congressional committee structure and such is the case here. Following the creation of the caucus, Reps. Markey and Stearns put forth a call for citizens to encourage their Representatives to sign up as members. In just a few short months, thirty-six members of Congress, from both sides of the aisle, had signed up to join the caucus. In addition, the House of Representatives approved Rep. Stearns’ resolution (H.Con.Res. 357) designating May 2006 as Cystic Fibrosis Awareness Month. Seventeen new members have joined the caucus, bringing the total up to fifty-eight members of Congress, including the two co-chairs.

Signing of Congressional CF Caucus Mission, from L to R: Rep. Edward Markey; CFF President & CEO Robert J. Beall; and Vice President of Public Policy and Patient Affairs Suzanne Pattee; and Rep. Cliff Stearns.

At the 2nd Annual Cystic Fibrosis Awareness Day at the Massachusetts State House, Rep. Markey gave an inspiring speech on the importance of funding scientific research for cystic fibrosis. “You know, they say that the most powerful four-letter word in the English language is HOPE. Hope… that we can raise awareness of the families struggling with CF. Hope… that we will find better treatments and ultimately a cure. Hope… that our children will have to turn to the history books to learn what Cystic Fibrosis was.”

US citizens can help the mission of the CF caucus by contacting their Representatives in Washington, D.C. and urging them to join Reps. Markey and Stearns. While the caucus is still in the early stages of operation, those involved plan to organize speakers for caucus functions as well as review legislative proposals of interest to both the CF Foundation and the Congressional caucus. Currently, according to Alexandra Bennewith, Public Policy Manager for the Cystic Fibrosis Foundation national office, the CF caucus is in the early stages of planning a Congressional Cystic Fibrosis kick-off for this coming fall season.

In addition to these types of events, the CF caucus will organize functions for the group as well as research and submit public comments on legislative proposals that arise in Congress and are related to cystic fibrosis. For more information, please visit:

Cystic Fibrosis Foundation: http://www.cff.org/legislative_action/cf_caucus
Rep. Ed Markey’s website: http://markey.house.gov

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