Join the MS Action Network, the center for advocacy at the National Multiple Sclerosis Society. Together, we represent the interests of people with MS as important policy decisions are made in both the public and private sectors. Our advocacy is focused on: federal funding for MS research; quality health care; long-term care; disability rights; and health insurance and prescription drug coverage. The MS Action Network works on these important issues at the federal, state and local levels.
The three Florida chapters of the National Multiple Sclerosis Society have partnered together to form MS-CAN. The mission of MS-CAN is to raise awareness of and interest in governmental issues and public policy that may affect the quality of life for people with MS and empower them to take effective action.
Following the decisions of several HMOs to reduce or drop their coverage of self-injectibles or increase the co-payments to an alarming 25% plus cost, the National MS Society South Florida Chapter launched an initiative in support of non-discrimination for access to MS treatments.
Federal Advocacy Effort
Increase Multiple Sclerosis Research Funding
We urge 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.
Establish Multiple Sclerosis and Parkinson’s Disease Registries
Activists are asking 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.
Support Comprehensive Health Care Reform
Activists ask 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.
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.