Mar 19, 2009
North Florida Activists Visit Legislators at D.C. Public Policy Conference
Volunteers, staff and board members took on Capitol Hill during the annual Public Policy Conference earlier this month. They put a face on the disease and advocated for issues important to people with MS.
Activists urged Congress to support a $15 million appropriation to the Department of Defense’s Congressionally Directed Medical Research Programs for MS research. This research could help more than 28,000 U.S. veterans diagnosed with MS and more than 400,000 people who live with the disease nationwide. Emerging evidence suggests that combat veterans might be at an increased risk of MS, indicating a potential environmental factor. A new avenue of MS research funding will help explore new treatments and a cure, and will compliment existing NIH research.
Activists asked members of Congress to co-sponsor the National MS and Parkinson’s Disease Registry Act (HR 1362). This legislation would establish separate registries for MS and Parkinson’s disease at the Agency for Toxic Substances and Disease Registry in the Centers for Disease Control and Prevention. An accurate measure of the incidence and prevalence rates is needed, and a national, coordinated system to collect and analyze data on MS and Parkinson’s disease currently does not exist. These registries could uncover and help inform promising areas of research, such as geographic, genetic or environmental risk factors, which could lead to new treatments and a cure.
Activists asked members of Congress to support comprehensive health care reform in the 111th Congress. Too many people with MS do not have access to care. Too many people with MS cannot afford medications or other treatments. Congress was urged to make health care reform decisions that meet the needs of people with chronic conditions and disabilities. This includes eliminating Medicare’s 24 month disability waiting period, providing long-term care support services, and eliminating discrimination against pre-existing conditions. Activist encouraged Congress to also include provisions to reduce out-of-pocket costs, eliminate lifetime caps on benefits, and include coverage for clinical trials. Comprehensive reform would ease the financial burden of health care costs on individuals and help stimulate our nation’s economy.
Members of Congress were invited to join the Congressional Multiple Sclerosis Caucus. This is a bi-partisan Caucus in the House and the Senate which serves as a forum on the critical issues affecting people living with MS and other conditions. Members of the Caucus engage in discussions and seek creative solutions for MS issues such as increased research, disability rights, access to quality health care, long-term care resources, and affordable health care coverage.
Multiple sclerosis interrupts the flow of information between brain and body and stops people from moving. With the help of people like you, the National MS Society addresses the challenges of each person whose life is affected by MS and helps them stay connected to the great big moving world. The North Florida Chapter was founded in 1973 and is dedicated to a world free of MS through funding research and programs for people with MS and their families.
For more information on advocacy, MS or the National Multiple Sclerosis Society, contact us at 800-344-4867, msnorfla@fln.nmss.org or www.nationalmssociety.org/FLN