Until a cure is found, the statewide advocacy network of the three Florida chapters (Mid, North and South) and MS activists are currently pursuing:
- Health care reform
- Improved community resources
- Disability rights
- Long-term care resources
- Access to quality health care services
- Increased funding for MS research
- Accessible, affordable health insurance
In Washington, DC, we are working toward positive legislative change. Read about out priority MS issues.
After consultation with our Congressional champions, and members of the Society's Federal Activism Council, the selection of the priority issues for the 2009 year are summarized below:
- Comprehensive Health Care Reform - The 111th Congress is shaping up to be fertile ground for the comprehensive health care reform. The Society, through its volunteer led Federal Activism Council, has developed a robust set of principles (including the repeal of Medicare's 24 month disability waiting period) to be used to influence Congress as it shapes health care reform. Activist from around the country continue to educate our congressional members about the needs of people with MS and learn more about how our Activists can shape and promote comprehensive health care reform in 2009.
- National MS and Parkinson's Disease Registry Act - Disease surveillance is an important research tool. A National MS Registry will help ascertain the true incidence and prevalence rates of MS nationwide, and information gathered could help with research into potential environmental and genetic factors associated with MS. In the 111th Congress, we are partnering with the Parkinson's disease community to help address the economies of scale in building neurological disease surveillance systems. The bill directs the Agency for Toxic Substances and Disease Registry (ATSDR) to establish a permanent national MS surveillance system along with the development of pilot projects for Parkinson's disease. Furthermore, the bill sets up an Advisory Committee on Neurological Disease National Surveillance Systems, which will examine the development of national registries and surveillance systems for other neurological diseases and disorders.
- Increased MS Research Funding - Activist indicate that they believe research funding is the most important advocacy issue. Last year MS Activist were successful in opening a new funding stream for MS research within the Congressionally Directed Medical Research Programs (CDMRP) with an appropriation of $5 million! This achievement came despite the gloomy budget year and broken Federal budget process. The National Institute of Health (NIH) funding has stagnated over the last several years, and MS funding has decreased there, it has become even more important to seek other avenues for MS research. In addition to advocating for increased NIH funding, the Society will seek to increase our newly established program within the CDMRP.
Read the National Health Care Reform Principles (pdf). These principles help guide our role in the national health care reform debate and determine the Society's policy priorities.
To stay involved in advocacy issues affecting the MS community sign up for our MS Action Alert system.
The Florida public policy agenda will be set in the coming months prior to the start of legislative session in March 2010. For more information, contact 1-800-344-4867 or 904-332-6810.