Check out the latest federal news and share your views!
Are you registered as an MS activist? We need your voice. One link will sign you up to receive federal and state alerts to take action. Have your federal and state elected officials changed following the November election? If so now is the opportune time to learn who they are, their areas of interest and to contact them or meet them in the district. If you know your lawmaker personally, let us know too.
Health Care Reform Implementation
States are now charged with implementing federal reform starting in 2010. The chapter is carefully monitoring these state efforts and will advocate for the greatest coverage and protections for people with MS. Beginning July 1, new insurance programs are offering coverage to un-insured individuals with a pre-existing health condition. Need assistance understanding this new program or advice about health insurance? Call 1-800-344-4867
New chapter web advocacy pages launched
Check out the updated pages for your state. Tell us your story or provide feedback on issues. Download our brochure. Check upcoming events. Expanded content and new links to be added this fall.
MS Policy issue feedback wanted
Are there policy issues you would like our chapter to address? Do you have ideas on how to improve the independence and well-being of those affected by MS or want to share your experience as it relates to the need for a change in laws or regulations? The government relation committees would like feedback. Call 781-693-5146 or firstname.lastname@example.org
Government Relations Committee Volunteers Wanted
The GRC in each of the four states is actively seeking committed individuals to join us for our monthly meetings. Are you a person with MS or have a connection to the disease Do you have professional expertise in the area of law, medicine, disability, fundraising, policy, or community organizing? Do you have a commitment to working towards achieving short and long-term goals? Are you willing to speak before government officials, at public hearings or with the media? Are you committed to working as a team? If any of these describe you, please contact email@example.com.
A new volunteer government relations committee began meeting in the Falmouth regional office. A first task is to survey Mainers with MS, family members and professionals to better understand barriers to day to day living and identify ways to make changes through policy. Other tasks include better understanding the legislative process, connecting with key elected officials and health and disability organizations. One or more public/awareness events will be scheduled at the State House this spring. To complete the consumer survey go to the Maine issue page on the chapter website under the “Take Action” ink or call Michelle Dickson to have a survey mailed to you.
The GRC policy agenda includes, but will not be limited to, continued funding for Home LINKS, Medicaid spousal waiver, a first time legislative breakfast at the State House February 3, regional advocacy meetings and ongoing efforts initiated this summer to change the state building code to require power door openers in new and renovate public buildings. Check the Mass. issue page for more updates.
Medicaid Spousal Waiver/ “marriage penalty” stories sought
Are you married and denied Mass. Health/Common Health because of income and are unable to meet the one-time spend down or qualify for Common Health? If so, please contact Michelle Dickson.
Catastrophic Illness Fund Program funding available (CIP)
The state’s budget still includes funding for the CIP due in part to the joint efforts of the chapter and American Cancer Society The fund provides financial assistance up to a maximum of $2,500 to qualified low-income residents who incur out of pocket medical expenses. Last year, 58 individuals with MS accessed this fund. Funding for FY’11 is now available and persons with MS are encouraged to apply. Contact Michelle Dickson at the chapter if you have accessed these funds. To learn more about the program contact 1-800-852-3345 ext 4495 or http://www.dhhs.nh.gov/DHHS/BEAS/cip.htm
Retiring lawmakers honored at Chapter Annual meeting
Long time champions Representative Robert L’Heureux (Hillsborough District 19), Representative Carol Williams (Hillsborough District 14) and Senator Sheila Roberge (District 9) received “Outstanding Leadership” awards at the chapter’s annual meeting site in Meredith. They were recognized for their successful efforts to advance health and disability policies, improve accessible parking and promote greater awareness about MS. Their presence and leadership in the legislature and districts will be missed.
NH GRC priorities
Issues include continued awareness/adherence to accessible parking laws, identifying new legislative champions and educating them about MS, and fostering the incorporation of universal design into private housing standards.
Issues include considering a proposal submitted to the Burlington City Council to require power door openers in public buildings that are new or undergoing renovation, partnering with AARP on their Complete Streets and Burlington Liveable City projects, educating lawmakers about MS, partnering with coalitions and agencies, distributing a Town Hall accessibility checklist and hosting a state house event on April 8.
A collaborative effort between the Society, legislators, clinicians and other health organizations paid off in July when the Part D Off-label Prescription Parity Act (H.R. 5732) was introduced into Congress. Sponsored by Representatives Mary Jo Kilroy (D-OH) and Mac Thornberry (R-TX), the bill is designed to allow coverage of medication prescribed for an off-label use when such use is supported by peer-reviewed medical literature—as is currently the standard in Medicare Part B and Part D for medications used to treat cancer.
Other Medicare consumers, including those with MS, are currently unable to access safe and effective medications under Part D because the program won’t cover off-label uses of drugs—that is, for uses not specifically approved by the FDA. Nonetheless, many doctors—using their professional judgment and information from the medical literature—do prescribe medications off-label to treat symptoms of MS. These include Provigil (modafinil) and Nuvigil (armodafinil) for fatigue, and Zofran (ondansetron) for tremor.
Without this change in policy, individuals will continue to be denied coverage for treatment that could vastly improve their quality of life. “Prohibition of medically necessary medicines reduces treatment options for patients and compromises the private doctor-patient relationship,” said Linda Buchwald, MD, chief of neurology and medical director of the MS Comprehensive Care Center in Cambridge, Mass. “I want to be able to prescribe treatments that will be beneficial to my patients, at no unnecessary economic burden to them.”
The Society has continued to work hard to help pass a bill in Congress that would establish an MS registry at the Centers for Disease Control and Prevention. A more accurate estimate of who has MS and how common it is could enhance areas of research, including genetic and environmental risk factors. The last national study of MS incidence and prevalence was conducted 35 years ago, and the lack of up-to-date information inhibits MS research and makes it harder to target programs and services.
If you are interested in either of these measures, check if your senators and representatives have co-sponsored the bills. Look up H.R. 5732 (Part D Off-label Prescription Parity Act) and H.R. 1362/S.1273 (National MS and Parkinson’s Disease Registries Act) on Thomas.gov. If they have not sponsored the bill, ask for their support by calling or writing their offices. Be sure to thank them if they have already become supporters.