Volunteers and staff from the Greater Northwest Chapter, along with members of the MS community from all over the United States, were in DC this week for the National Multiple Sclerosis Society Public Policy conference. This conference is a wonderful opportunity for activists to learn about the legislative agenda and get face time with our representatives. Lisa Emrich blogged from the meeting, so check out what she had to say.
As a past attendee, I can tell you that THIS IS THE PLACE TO BE if you want to understand what the Society’s representatives focus on and face when meeting with and educating our members of Congress. The current political climate is a little tough on us activists, but the good news is that 30 Senators and a quarter of the House are members of the MS Caucus. We have support and those members continue to come through for the MS Community.
Some policy issues and wins you may not be aware of are:
Social Security Compassionate Allowance Listing
On October 13, 2011, the Social Security Administration (SSA) added Malignant Multiple Sclerosis to the Compassionate Allowances Listing, which helps the Administration quickly identify and target the most disabled individuals for priority approval of Social Security Disability Insurance (SSDI) benefits.
Medicare Improvement Standard
In January 2011, the National MS Society joined four health advocacy organizations and a number of patients as plaintiffs in a class-action lawsuit that seeks to ensure that patients are not denied physical, speech, or occupational therapy based on the grounds that the individual’s condition is stable, chronic, or not improving, or that the necessary services are for “maintenance only.”
Improving Access to Neurological Care
In March 2011, a bipartisan bill was introduced to add neurology to the list of physicians eligible for the Primary Care Incentive Program. Under this program, the government provides a 10 percent bonus payment to primary care Medicare physicians who specialize in family medicine, internal medicine, geriatric medicine, and pediatric medicine. Including neurologists in this program will help to improve access to neurological care for Medicare patients living with MS and may encourage more doctors to choose neurology as a specialty. (Bill referred to Senate Finance Committee.)
Adult Day Achievement Center Enhancement Act (2011)
This legislation is designed to expand and enhance existing Adult Day programs that provide care and support for individuals with neurological diseases or conditions, such as multiple sclerosis, Parkinson’s disease, or traumatic brain injury. It will establish a competitive grant program to fund Adult Day programs which support the needs of a younger adult population and veterans living with neurological conditions, reduce the strain on family caregivers, and help to maintain or improve functional abilities or to prevent the onset of complications associated with severe forms of the disease or condition. (Bill referred to House Energy and Commerce, Subcommittee on Health.)
National Neurological Diseases Surveillance System Act (2011)
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including MS. Familiar with the out-dated estimate of 400,000 Americans living with MS? We would finally get a more accurate estimate of the incidence of MS in the US. Information regarding the natural history, prevention, detection, management, and treatment of the disease, including outcome measures, would be collected and stored by the Centers for Disease Control and Prevention (CDC). Information existing in various smaller databases and registries may be combined into one larger national database with stringent privacy and security protections. (Bill referred to Senate Health, Education, Labor, and Pensions Committee.)
These issues had a lot of support in the last session and we hope the MS Caucus and the rest of Congress will take these on again this year. Please contact your congressional delegation and let them know how important these issues are to their constituents. Make a phone call, send an email, or schedule a face to face visit. Our representatives need to know that the MS community cares and VOTES!
It’s Time for Action! Washington
Cheers - Holly Hawker, Activism Committee Chair