Advocacy & Public Policy

First Annual New York State Advocacy Day

On Monday, February 2nd, despite 17 inches of snow in Albany, intrepid volunteers from the Greater New York Chapter, staff from the Founda- tion and our pro-bono lobbyists braved the elements to help pull off our first Annual Cystic Fibrosis Ad- vocacy Day in New York State. Re- duced from a total of 15 volunteers, six people held a total of 26 meet- ings with staff/members of both the Assembly and Senate, which in- cluded both Majority Leaders and the co-chairs of the Health and In- surance Committees.

The group asked these elected officials to oppose reducing the ap- propriation and consolidation of funding for the Cystic Fibrosis Health Care Program as part of a pooled chronic disease appropriation. This program helps enrolled adults with CF pay for health insurance premiums and also reimburses their health care providers for ser- vices rendered.

The objective was achieved as the final budget negotiated by the Assembly and Senate that was submitted to Governor Cuomo in late March rejected the consolidation and restored full funding for the program.

March on the Hill
Advocating on behalf of friends and family members with cystic fibrosis, on March 19th more than 120 CF Foundation volunteers repre- senting 38 states held more than 270 meetings with members of Congress. Representing the Greater New York Chapter were Marc and Margarete Cassalina, Melissa Shiffman, Martine Denis and Trina Fontaine.

In addition to sharing their personal CF stories and highlighting the needs of people with CF, volunteers asked their congressional repre- sentatives to co-sponsor the Ensuring Access to Clinical Trials Act. If passed, the act will make permanent a law that allows individuals with rare diseases to receive compensation for participating in clini- cal trials without fear of losing vital health benefits through Social Security and Medicaid.

Volunteers also pushed for greater funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), which are crucial to the development of new, specialized treatments and therapies for people with cystic fibrosis.