Call your senator today to increase consumer access to MS biologics

Massachusetts is the only state that prohibits consumers from accessing pharmaceutical assistance. This prohibition is preventing many individuals with MS from taking their medications because they cannot afford expensive co-payments. Language has been introduced into the legislature that would allow patients to access all forms of coupons, rebates and pharmaceutical company assistance programs, commonly known as “The Coupon Bill”. The Greater New England Chapter has been actively seeking to remove this prohibition for the past four years-we need your voice now!!. Click here to view Joan’s compelling story Current issue status Although bills were filed this session to remove the prohibition, the language was added to the FY’13 House budget but not to the Senate version. Senator Michael Rodrigues filed Amendment #655 in an effort to secure the opportunity for Massachusetts residents to take advantage of prescription drug coupons. Take Action Contact your state senator immediately (no later than Wednesday afternoon since the senate will begin voting Thursday) and request their support of Amendment #655 ACTION #1. Identify your State Senator. Go to: www.wheredoivotema.com ACTION #2. Contact your State Senator at (617) 722-2000 and ask your senator to contact the office of Senate President Therese Murray to support Amendment #655 to Senate Bill 4 to secure prescription drug coupon language into the fiscal year 2013 budget. Talking points My name is: ______________________ I am a voter in your district. I am calling in support of Amendment #655 to Senate Bill 4, which would add prescription drug coupon language to the fiscal year 2013 Senate budget. • Massachusetts is the only state that maintains a ban on prescription drug coupons. • Individuals with MS rely on highly specialized – extremely expensive – biologic medications that have no generic alternative. • Allowing Massachusetts residents to take advantage of manufacturer discounts does not cost the Commonwealth a dime. Ask your Senator to 1) vote in support Amendment #655 and 2) contact Senate President Murray to urge her support. I can be reached at _________________ (provide telephone #) if my senator has any questions. *Action Alert members - an update on your action will be sent soon to you. National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

Can Do Multiple Sclerosis/One Day Jumpstart Program

Join us in an educational and interactive program in which you and your support partner gain the knowledge, skills and tools needed to adopt healthy lifestyle behaviors and actively co-manage your MS. Presentations and Workshops will include the topics of nutrition, physical activity, managing your healthcare and a support partner workshop. This is offered at no charge and does include lunch. June 2, 2012 – Four Points Hotel, Norwood, Massachusetts June 3, 2012 – DoubleTree Hotel, Portland, Maine Register today, programs are filling quickly. To register online, go to www.mscando.org/JUMPSTART, or call Can Do MS, Mel McKinney at 800-367-3101, ext. 1281. We look forward to seeing you! National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

MS Action Alert

Dear MS Activist: Please call your state senator today to urge their support for Amendment #14 to amend Senate Bill 2260, An act improving the quality of health care. Background Senate Bill 2260, also known as the health reform bill is close to passing the legislative process and going to Governor Patrick for enactment. The bill includes language for the creation of a “Prevention and Wellness Trust” which does not include a focus on chronic disease management so critical for those living with conditions such as multiple sclerosis. The Greater New England Chapter seeks to expand the focus of this Prevention and Wellness Trust and has secured sponsorship of an amendment #14 which would add new language to include chronic disease management Take Action Now! If you do not know who your state senator is check http://www.wheredoivotema.com Call 617-722-2000 to ask for your state senator's office (not email) Provide your name and identify yourself as a constituent Ask your senator to support Amendment #14 to SB2260 and ask them to urge Senate President Murray to do the same Thank you for your willingness to support Amendment #14 on behalf of persons with multiple sclerosis! National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

Men With MS: Facing Challenges, Finding Solutions

JOIN THE MOVEMENT Join us for a unique opportunity to explore issues related to being male and having MS. Date: Saturday, June 16, 2012 Time: 10:00 am – 2:00 pm (lunch and entertainment included) Location: Holiday Inn Portsmouth, 300 Woodbury Ave., Portsmouth, NH Our featured speaker is David Rintell, Ed.D. Dr. Rintell is a psychologist who has worked with people with MS and their families for over 25 years. Advance registration is required, so register today! By Phone: 800-344-4867 Register Online We look forward to seeing you!

Upcoming Program: Webcast "The Next Frontier: Understanding and Treating Progressive MS."

Join a panel of experts for a live nationwide Webcast “The Next Frontier: Understanding and Treating Progressive MS." When: Wednesday, May 23, 2012 from 7:00 to 8:00 p.m. ET Where: Online with the opportunity to submit questions for the panelists in real-time To Register: visit http://www.nationalMSsociety.org/may23webcast Topics include: Why aren’t there more therapies for people with progressive MS? What do we know about what causes progression in MS? What are the challenges faced in understanding and treating progressive MS? What’s on the horizon in terms of preventing progression and repairing the nervous system? What’s being tested right now for people with progressive MS? What can people do now to maximize their quality of life? Moderator: Dr. Timothy Coetzee, Chief Research Officer of the National MS Society Panelists: Peter Calabresi, MD, Professor of Neurology, and Director of the Johns Hopkins Multiple Sclerosis Center John DeLuca, Ph.D., ABPP, Vice President for Research, Professor of Physical Medicine and Rehabilitation, and of Neurology and Neurosciences UMDNJ-New Jersey Medical School Daniel Reich, MD, PhD – Chief, Translational Neuroradiology Unit, Neuroimmunology Branch, National Institute of Neurological Disorders and Stroke and Adjunct Assistant Professor, Neurology Department, Johns Hopkins University School of Medicine If you cannot participate in real-time, the recorded version with transcript will be posted for viewing shortly after the event. National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

Federal Focus - May 2012

House to Decide Funding Level for MS Research in the CDMRP Next Tuesday, May 8th, the House Appropriations Subcommittee on Defense is expected to “mark up” its Fiscal Year 2012 appropriations bill. This is typically when the House first indicates how much funding will support MS research in the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a peer-reviewed program that funds high-risk, high-reward research. Over the past five federal funding cycles, MS research has received over $20 million through the CDMRP. For Fiscal Year 2012, the Society is advocating for $10 million for MS research through this program. Representatives Burgess (TX-26) and Carnahan (MO-3) championed a bipartisan letter signed by 66 other Representatives urging the Appropriations Committee to provide $10 million for MS research in the CDMRP. This letter was sent to the Appropriations Committee in mid-March in advance of Tuesday’s markup. We will be sending a special action alert to MS activists who reside in districts whose members are on this important Subcommittee. Please look for this email and take action by emailing your Representatives to ensure robust funding for MS research! Email Your Members of Congress to Ensure that People with Disabilities Have Equal Access to Swimming Pools In 1990, Congress passed the Americans with Disabilities Act (ADA) with broad bipartisan support and President George H.W. Bush signed it into law. This historic achievement granted people living with disabilities the rights they deserve and protection from discrimination due to a disability. Specifically, it protects people with disabilities in employment settings, state and local government activities (such as public education and voting), public accommodations (such as hotels and restaurants), commercial facilities, transportation, and telecommunications. Since its enactment, the ADA has been strengthened through amendments and many regulations that clearly spell out the rights of people with disabilities. Nonetheless, the ADA has yet to be applied and enforced for some activities and services, including ensuring equal access for people with disabilities to swimming pools. Access to swimming pools is as important for people with disabilities as it is for everyone else. Swimming is an important part of participating fully in one’s community and engaging in social interaction with friends and family. In addition, for many people with disabilities, swimming is a critical means of exercise that helps maintain strength and independence. Initial guidelines on the accessibility of swimming pools were issued in 2002 and since then, have been incorporated into more official guidelines in preparation for the required formal rulemaking process. Recently, there have been efforts by certain opponents to further stall the final rule and to deprive the Department of Justice of their authority to enforce them. Either of these actions would weaken the intention of the ADA and leave people with disabilities waiting even longer for their rights to equal access to swimming pools. Click here to contact your members of Congress about this important issue. Your emails will state that people with disabilities have the same rights as everyone else to use swimming pools and will urge your members of Congress to oppose efforts to stall this regulation. Congress Considering FDA Bill With many bills stalled in Washington this election year, there is one piece of health legislation that both Republicans and Democrats agree is a “must-pass” bill—the reauthorization of the Prescription Drug User Fee Act (PDUFA). The original bill was enacted in 1992 and gives the Food and Drug Administration (FDA) the authority to collect user fees from drug companies to help fund the agency’s review of their products. The general intention of the current bill is to increase the number of staff at the FDA who are dedicated to drug review process. Increasing staff capacity will also improve review times for new drugs. Because of its “must-pass” status, it has become a vehicle for numerous groups and members of the relevant Congressional committees with an interest in shaping the FDA’s agenda. In 2010, the FDA began holding a series of meetings with members of the drug industry, the public and other interested parties in preparation for the re-authorization of the Prescription Drug User Fee Act. These meetings resulted in consensus among the stakeholders on resulting in recommendations for the user fee programs. These recommendations were sent to Congress — where lawmakers now have the opportunity to add additional measures to the bill. The Society participated in the meetings for patient groups and advocated for many patient-centric positions, which eventually made it into the agreement. With the looming elections, Congress originally set a goal of passing the reauthorization early and finishing it before the end of June. Given the two chambers’ differences, however, it is unclear whether that deadline will be met. Already there are differences between the Senate and House versions of the bill, including changes to the FDA’s mission, incentives for drugmakers to make new antibiotics, and reforms of medical device regulations. Despite the differences, lawmakers are expected to reach agreement and pass a reauthorization bill before the user fee programs’ Sept. 30 expiration date. The Society will continue to monitor the provisions included in PDUFA and advocate for its passage in a timely manner.