Judith Shea and Judy Jones were in Washington in April representing the Mycosis Fungoides Foundation. They joined members of the Society of Investigative Dermatology, American Academy of Dermatology and the Coalition of Patient Advocates for Skin Disease Research (CPA-SDR) to talk to legislators regarding the need for research funds for the National Institutes of Health and especially for NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases).
Upon their arrival, they met with members of the CPA-SDR, Stephen Katz (Director, NIAMS), Alan Moshell (Director, Skin Disease Branch, NIAMS and Peter Lipsky (Scientific Director, NIAMS). Some of the topics discussed were the need for patient registries, the economic burden of skin diseases and funding for research.
The second day included meetings with members of Congress. This process is described in detail by Claudia Day when, in June, she participated as a representative of the Leukemia and Lymphoma Society at the Lobby Day with One Voice Against Cancer (OVAC). Her report follows:
More than 200 participants from OVAC partner groups met with U.S. Senators and Representatives to urge them to fulfill their commitment to double the National Institutes of Health (NIH) budget by 2003, fully fund the National Cancer Institute (NCI), and fund vital programs at the Centers for Disease Control and Prevention (CDC).
OVAC is a collaboration of more than 40 national non-profit organizations representing more than 20 million Americans formed to deliver a unified message to Congress and the White House on the need for increased cancer-related research and research application funding as well as for screening and prevention initiatives.
On June 3, participants attended workshops to learn the process of an effective lobby visit, as well as getting briefed on background information about the appropriation process for NIH, NCI, CDC, and other organizations.
June 4 began with a 9:30 a.m. hearing of the Labor-HHS subcommittee of the Senate Appropriations committee, chaired by Senator Harkin of Iowa. Attendants heard testimony, including personal stories, from several speakers about the urgent need to continue funding for cancer research.
Most of the participants had to leave the hearing before it ended, heading off to appointments with members of Congress. As a resident of Virginia, I met with staffers in the offices of my two Senators (Allen and Warner), as well as my Representative in the House (Davis). I was accompanied by as few as two others and as many as a dozen. Many of the participants had previous experience lobbying Congress, but a significant number were new to the process, as I was. Among us were volunteers and paid staffers of the partner groups (for example, the American Cancer Society).
During the actual meetings with members or staffers, each participant had a brief (one to two minute) opportunity to talk. Although our ultimate message was the same (to request support for funding), our personal stories supporting our plea were quite different. Many told heart-wrenching stories of personal anguish, families torn apart, and oftentimes inspiration. I decided to tell a different story, emphasizing the economics of a cancer such as mycosis fungoides. I told them that a typical MF patient could look forward to decades of sometimes expensive therapy, and pointed out that research dollars spent seeking prevention, cure, or even just effective but inexpensive treatments could produce long-term cost savings.