Mar 18, 2009
MS advocates highlight issues for Delaware's legislators
Carla Koss
Representing the Delaware Chapter of the National Multiple Sclerosis Society, six MS advocates joined approximately 500 activists from around the country last week for the annual MS Public Policy Conference in Washington DC. The six-member Delaware delegation included the chapter president, Kate Cowperthwait; the chapter’s director of programs, Katrina Holloway; Tom O’Brien, past-chapter chair; the current chapter chair, Carl Hertrich; Gail Jasionowski of AAA Mid-Atlantic, and Vickie George, founder of the Yes U Can fitness program.
Gathering in the congressional offices of Representative Michael N. Castle, Senator Thomas R. Carper, and Senator Edward Kaufman, the Delaware delegation highlighted several issues that are important to more than 1,500 Delawareans with MS. Of the top three issues, the first is support for establishing an MS registry to provide accurate data about the incidence and prevalence of the disease. “We need a disease registry,” explains Chapter President Cowperthwait, “so we better understand MS. This, in turn, will help promote research into areas like genetic and environmental risk factors. I’m a firm believer that we need to do something about MS now, and research is one way.”
The second issue supported by MS advocates is comprehensive health-care reform. The Society supports several principles that, if applied, should ensure that the health-care needs of all people with MS are met. These principles encompass access to affordable health-care coverage and services, including high-quality, long-term supports and services, and the elimination of disparities and the creation of standards for covering specific treatments.
The Delaware delegation focused on two health-care coverage issues in particular: life-time caps and the two-year waiting period for Medicare coverage. “We are looking at these health-care issues,” notes the chapter’s program director, Katrina Holloway, “because by eliminating them, we can keep Delawareans with MS out of institutions and in independent living. With accessible long-term care for all, Delawareans can have quality, long-term care in their own homes.”
The third issue advocated by the MS delegation is the need for increased funding for MS research. MS activists made history last fall when they moved Congress to approve $5 million for MS research through the Congressionally Directed Medical Research Programs. This first-time line-item allocation under the CDMRP is funded through the Department of Defense, and MS activists across the country are advocating for $15 million more.
About MS advocacy
The movement to obtain MS research funds from the DOD began when more than 100,000 signatures were collected on a petition. This simple act of petitioning Congress is just one of the many ways that Delawareans can be MS advocates. “We want to ensure that people with MS have our legislators’ support when and where it counts—when it’s time for them to vote!” notes long-time advocate and chapter program coordinator, Marie Eldreth. “We need to continue to focus our advocacy efforts this year, during this time of widespread budget cuts, so we are looking for folks who want to be the ‘voice of MS.’
“We will train you,” assures Eldreth. “We hope to enlarge and strengthen our group of well-trained and highly motivated MS advocates.” For more information on becoming an MS advocate, visit www.MSdelaware.org. Or call the Delaware Chapter at (302) 655-5610, and ask for Marie.
About multiple sclerosis
Every hour in the United States, someone is newly diagnosed with MS. MS affects more than 400,000 Americans. Most are diagnosed between the ages of 20 and 50—during life’s most productive years—and more than twice as many women are diagnosed as men.
Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that interrupts the flow of information from the brain to the body. Symptoms range from tingling and numbness in the limbs to blindness and paralysis. In other words, MS stops people from moving.
Although the progress, severity, and specific symptoms of MS cannot be predicted, advances in research and treatment are moving us closer to a world free of MS. Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve the quality of life for many people with MS.
About the National Multiple Sclerosis Society
The National Multiple Sclerosis Society is a collective of passionate individuals who are
• moving together to create a world free of MS.
• moving research forward by relentlessly pursuing prevention, treatment, and a cure.
• moving to reach out and respond to individuals, families, and communities living with MS.
• moving politicians and legislation to champion the needs of people with MS through activism, advocacy, and influence.
• moving to raise $1.25 billion by 2010 to help create a world free of MS.
• moving to mobilize the millions of people who want to do something about MS now.
To this end, the National MS Society funds more MS research, provides more services to people with MS, offers more professional education, and furthers more advocacy efforts than any other MS organization in the world. Through a 50-state network of chapters—including the Delaware Chapter—the Society addresses the challenges of living with the disease. To learn more, call (302) 655-5610, or visit www.MSdelaware.org.