Physicians from the CGD Center Visit Capitol Hill to Lobby for Research Funding; Patient Registry
Leaders join National MS Society in visits to local members of Congress to urge passage of key legislation
Aaron E. Miller, MD
Drs. Fred Lublin and Aaron Miller of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis (The CGD Center) joined hundreds of persons with MS and staff of the National Multiple Sclerosis Society (NMSS) from around the country in lobbying members of Congress on Capitol Hill on March 3. The annual visits, the culmination of the NMSS Public Policy Forum, focused on three important issues affecting people with MS.
First, the lobbyists asked members of the House of Representatives and the Senate to co-sponsor the National MS and Parkinson’s Disease Registries Act (H.R.1362/S.1273). This important legislation would enable experts to collect information that would much more accurately determine the number of people diagnosed with MS in the United States, as well as provide additional information about the MS population in this country. This is critically important because no tally of the number of MS persons has been obtained in the past 35 years. Such information would bolster the arguments for increased funding for MS research, as well as pinpoint issues for further investigation. Preliminary studies have already identified methods to develop valid data, utilizing a number of sources including Medicare, Medicaid, private insurers, and several existing patient registries.
In a second request of Congress, Drs Lublin and Miller joined their colleagues in asking for full funding of the Lifespan Respite Care Act, which President George W. Bush signed into law in December 2006. This important legislation authorized the expenditure of increasing amounts of money, up to $71.1 million in fiscal year (FY) 2010. Unfortunately, however, no funds were actually allocated until FY 2009 and then the program was only funded at the level of $2.5 million. The group of MS lobbyists requested a major increase in the allocation, to $94.81 million for FY 2011, the last year of the current legislative authorization, to make up for the amounts not previously allocated.
Respite Care is vitally important for some severely affected persons with MS, whose care is often provided by family members. This is a highly stressful and demanding role and the caregivers themselves often need a break to attend to their own physical or emotional needs. Funding this legislation would allow a number of states to receive competitive grants to enhance respite programs, improve coordination, and improve respite access and quality.
The third “ask” by the lobbyists was for members of Congress to support the awarding of $15 million by the Congressionally Directed Medical Research Program (CDMRP). In these economically difficult times, the National Institutes of Health expenditure for MS research has contracted, so that alternative sources of funds are critically important. The CDMRP authorizes research dollars that are specifically devoted to particular diseases. MS was first designated for funding two years ago and nearly $10 million has been allocated since that time. However, the visitors pressed for increased funding for this vitally important program.
Drs. Lublin and Miller, Director and Medical Director respectively of The CGD Center, both serve on the Board of Directors of the NMSS. They joined other members of the Board in the Capitol Hill visits. The only New York City MS physicians personally participating in the lobbying effort, Drs. Lublin and Miller made separate rounds as part of several small groups organized by the New York City-Southern New York Chapter of the NMSS, spearheaded by Manager of Advocacy Programs, P. J. Weiner.
Dr. Miller was joined by MS activists Lori Bores and John Sheehan and by Robin Einbinder, Executive Vice President of Programs, Services and Advocacy, in visits to Representatives Carolyn Maloney, Joseph Crowley, Jerrold Nadler, Edolphus Townes, and Jose Serrano. Many patients of The CGD Center reside in the districts represented by these members of Congress. Before meeting with key legislative aides, Dr. Miller and other members of the group spoke personally with both Congresswoman Maloney (Democrat, Manhattan), who is one of the principal co-sponsors of the MS Registries Act, and Congressman Crowley (Democrat, Bronx/Queens) , who, as deputy house whip, is one of the most influential members of Congress.
Dr. Lublin was accompanied on his Congressional rounds by volunteers Fiona Hoey, T.J. Keevins and PJ Weiner. His group lobbied Representatives Nydia Velazquez, Yvette Clarke, Anthony Weiner, Michael McMahon and Charles Rangel. Dr. Lublin commented, “Dr. Miller and I, as well as our colleagues at The CGD Center, realize that we must do even more than provide direct care to people with MS in order to end the potentially devastating effects of this disease. Advocacy is one of the most important ways we can really make a difference by helping to get legislation passed that can directly improve the lives of people with MS and their families, as well as keeping up the pressure for the allocation of more research dollars. We urge all of you to get involved. Keep abreast of the issues by connecting with your local NMSS chapter and make your own voice known to your Representatives and Senators.”