MSConnection Summer 2012

Table of Contents — Summer 2012 Issue MSConnection Summer 2012 thumbnail Top Stories 2012 Scholarship Recipients From The President MSconnection.org Study Shows Hotter Days May Worsen the Ability to Perform Mental Tasks in Some People with MS Save the Date: Chapter Annual Meeting & Conference News Where We Are: Health Insurance Exchanges Programs Dual Victories As First Time Chapter Driven Laws Are Enacted In Maine And Vermont Family Matters Finding Balance in the Household Teleconference Programs How I Communicate About MS with My Children Money Matters Working and SSDI What Are Job Accommodations and How Do I Get One? Living with MS The Dirt on Adaptive Gardening Café con Leche Research Research Advocate The Road of a Researcher BG-12 New Drug Application Advocacy Maine Massachusetts New Hampshire Vermont MS Activist Blog Action Alert Government Relations Committee Wanted: MS “Grasstops”! Volunteers What Kind of a Volunteer are You? Fundraising MileStones Gala 2012 Ride the Vineyard Climb to the Top Boston Marathon Strides Against MS Maine Honors Gail Kelly Orange Blossoms for MS Anime Boston Locke Middle School Ride with Us in 2012 MS Journey of Hope Muck Ruckus MS Northeast Link Up for MS Golf Tournament Accept the Challenge MS Harborfest Calendar of Events - see current calendar Classified Ads - see current listings

National MS Society’s Statement Regarding the United States Supreme Court Ruling on the Patient Protection & Affordable Care Act

The National Multiple Sclerosis Society supports the decision of the United States Supreme Court regarding the Patient Protection and Affordable Care Act. This ruling will have a significant, positive impact on many, including the millions of Americans affected by multiple sclerosis. Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families: Prohibition of coverage denials based on pre-existing conditions: Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need. Prohibition of lifetime limits: Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care. Elimination of annual limits: Similar to lifetime limits, many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care. Extension of parent’s insurance to 26: Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy. Closing the Medicare Part D Coverage Gap: Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage. Pathway for Biosimilars: The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future. The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed--which is good news for anyone who uses biologic therapies. Background Although many people with MS have health care coverage, 70% of those with health insurance still struggle with the cost of health care and 30% are forced to spend less on food, heat, utilities and other necessities in order to afford their health care. Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive. On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs. Unlike some other diseases, MS is a lifelong illness--typically diagnosed between the ages of 20 and 30s--prime career and family building years. Because of the high cost and complications that can be associated with the disease, the National MS Society has long supported many of the policies that were included in the law just upheld by the Supreme Court. With guidance of people living with MS, the Society adopted a set of National Health Care Reform Principles several years ago and, as an organization. Our approach is to support legislation that is in line with those principles. We intend to continue to work with Congress and the Administration in pursuit of public policies that address the needs of those impacted by MS. Contact For assistance with specific health insurance questions, people with MS, their families or healthcare providers may speak with an MS Navigator by calling 1-800-344-4867 (FIGHT MS). You can find additional information on our website.

Just 2 days left

As you know, we need to raise $50,000 by June 30 to fulfill our promise to fund research efforts and provide services for people affected by MS. Right now we need your help. Will you give now and help us achieve our goal by June 30? There are more than 400,000 men, women, and children living with MS. They are counting on you today — and time is running out to help fuel this MS Research Revolution while also supporting: • Change through advocacy • Professional education • Programs and services to help people with MS live their best lives With your continued support, we will STOP MS in its tracks ... RESTORE the function taken by the disease ...and END MS forever. But we can’t do it without you. There are just two days left to fulfill this $50,000 goal. By giving a gift today, you can help move us closer to a world free of MS. Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. Please don’t wait. We are so close to our goal, but we need your help to raise $50,000 before June 30 — give your most generous gift today!

You can help - respond by June 30

An MS research revolution is under way. Right now, thousands of skilled scientists are working to STOP MS in its tracks ... RESTORE what’s been taken by the disease ...and END MS forever. But we need thousands more to join us. Your support will provide the vital dollars needed right now. We cannot and will not rest until we end MS forever. Our gift today not only funds cutting-edge MS research, you can also: • Drive change through advocacy • Support professional education • Fuel the programs and services that help people with MS and their families move their lives forward The time to act is now. Please give today so we can reach our $50,000 goal by June 30. Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. Every dollar you give supports people in your community facing the challenges of living with MS. Please don't wait. Help us raise $50,000 before June 30 — give your most generous gift today.

Educational Teleconference Programs 2012

Educational Teleconference Programs Don’t forget to register for these upcoming teleconference programs! Management and Rehabilitation of Advanced MS Dr Kraft will present a brief overview of advanced MS, current status of research and practical application of symptom management. Speaker: George H. Kraft, M.D., M.S. Director of the Western Multiple Sclerosis Clinical Center and Alvord Professor of MS Research; Professor, Rehabilitation Medicine and Neurology at the University of Washington in Seattle Date: Wednesday, July 18, 2012 Time: 6:30 – 7:30 p.m. REGISTRATION DEADLINE: Wednesday, July 11, 2012

Call your Senator and Representative 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. The Greater New England Chapter has been actively seeking to remove this prohibition for the past four years- WE NEED YOUR VOICE NOW!! Current issue status Language has been introduced by the House and the Senate to the fiscal year 2013 budget that would lift the ban against prescription drug coupons. But the Senate language contains very stringent requirements that could prevent consumers from accessing coupons and financial assistance programs in the Commonwealth. This language is commonly known as “ The Coupon Bill”. Take Action ACTION 1. Identify your state Senator and Representative. Go to: www.wheredoivotema.com ACTION 2. Contact your state Senator and Representative immediately at 617-722-2000 and ask them to contact the fiscal year conferees to support House Budget Sections 163-163C to secure language that would lift the ban against financial assistance for prescription drugs in the fiscal year 2013 budget. Talking points My name is: ______________________ I am a voter in your district. I am calling in support of House Budget Sections 163-163C, which would add prescription drug coupon language to the fiscal year 2013 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. • The Senate language could preclude consumers from accessing coupons and financial assistance. I ask that the Senator /Representative support House Budget Sections 163-163C and contact their respective conferees to urge their support. Will she/he do so? I can be reached at _________________ (provide telephone #) if my Senator /Representative has any questions. ACTION 3. Please click reply to this email and let the Greater New England Chapter know if your Senator and Representative will support this action. Thank you and please support our efforts to manage chronic disease and keep Massachusetts’ residents healthy. An update will be sent to you regarding the outcome of this important call to action.

Not too late to register for Men With MS program!

Join us for a unique opportunity to explore issues related to being male and having MS. It is not too late to register for Men With MS: Facing Challenges, Finding Solutions 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. Register today! This program is for men only. By Phone: 800-344-4867 Online We look forward to seeing you!

Urge Senator Kerry to Hold a Hearing on Important Rights Treaty

n 2009, the United States signed a treaty called the Convention on the Rights of Persons with Disabilities (CRPD) which essentially takes the Americans with Disabilities Act international. In order to have the force of law, the U.S. Senate must ratify it by a two thirds majority. The Obama Administration has now submitted the CRPD to the U.S. Senate to begin the ratification process. Before the Senate can vote on the CRPD, the convention needs to pass through the Foreign Relations Committee with a simple majority vote. The next step towards ratification is a hearing in the Foreign Relations Committee. One of your U.S. Senators, John Kerry, is the Chairman of the Foreign Relations Committee and has the authority to schedule a hearing. Our request is very simple –please contact Senator Kerry by phone (202-224-4651) or by email by clicking here. If you call Senator Kerry’s office, please urge him to schedule a June hearing for the Convention on the Rights of Persons with Disabilities. If you click to send an email, you will be prompted to enter your zip code and then an email will appear for you to easily send to Senator Kerry’s office. The CRPD package that the Obama Administration submitted to the U.S. Senate is consistent with U.S. laws and will not require additional appropriations. Ratification of this treaty ensures that people with disabilities, including people living with MS, have equal rights and extends disability rights globally. Thank you for your help!

Call your representative to support "chronic disease management"

Dear MS Activist: Please call your state representative today to urge their support for Amendment #262 to amend House Bill 4127, An act improving the quality of health care. Background House Bill 4127, 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 #262 which would add new language to include chronic disease management. Recently MS Activists took action to include this language in the Senate bill. Your voice was heard!! The Senate adopted this language in their version of the bill. Take Action Now! If you do not know who your state representative is check www.wheredoivotema.com Call 617-722-2000 to ask for your state representative's office (not email) Provide your name and identify yourself as a constituent Ask your representative to support Amendment #262 to House Bill 4127 and ask them to urge Speaker Robert DeLeo to do the same. Thank you for your willingness to support Amendment #262 on behalf of persons with multiple sclerosis!

Federal Focus - June 2012

House Approves $5 Million for MS Research in the CDMRP In mid-May, the U.S. House of Representatives approved its Fiscal Year (FY) 2013 Defense Appropriations bill that included $5 million for MS research in the Congressionally Directed Medical Research Programs (CDMRP). If this level is maintained as the process moves forward, it would be an increase of $1.2 million in comparison to FY 2012’s funding level ($3.8 million). Each year, MS activists ask Congress to provide MS research funding in the CDMRP. Over the past five funding cycles, more than $20 million in total has been dedicated to MS research. At the Society’s 2012 Public Policy Conference in March, MS activists made the initial request, urging their federal lawmakers to support $10 million for MS research in FY 2013. Following the conference, Representatives Michael C. Burgess (TX-26) and Russ Carnahan (MO-3) authored a letter that was supported by 66 of their House colleagues. The request, $10 million for MS research in the CDMRP, was sent to the House Appropriations Committee. As a result of persistent activism, it’s clear that the House members understood the value of continuing MS research funding even in a time of austerity. We could not have done this without all of YOUR help—thank you! The annual federal budget process still has many steps before it’s finalized. The Senate has not yet acted on its Defense bill that could contain CDMRP funding. In that chamber, Senators Sheldon Whitehouse (RI) and Mike Johanns (NE) along with 10 other Senators went on record supporting MS research in the CDMRP. As the Senate deliberates over its bill, the Society will continue to educate Capitol Hill about the importance of maintaining MS research initiatives and to advocate for the maximum funding for MS! International Treaty to Recognize Rights of People with Disabilities Before the U.S. Senate The Obama Administration recently transmitted the Convention on the Rights of Persons with Disabilities (CRPD) to the United States Senate. The United States signed the treaty in 2009, but in order for it to have the force of law, the Senate must ratify it by a two thirds majority. The CRPD essentially makes the Americans with Disabilities Act (ADA) an international standard, ensuring that Americans with disabilities who work and travel abroad, including disabled American veterans, are protected from discrimination. The treaty also helps ensure that all Americans enjoy the same rights outside the U.S. as they are afforded at home. Last week, seven bipartisan Senators indicated their support to ratify the CRPD—providing critical progress that will help advance the treaty. We are grateful to Senators McCain (AZ), Durbin (IL), Moran (KS), Harkin (IA), Barrasso (WY), Coons (DE), and Udall (NM) for this support. Now that the CRPD has been transmitted to the Senate and is receiving bipartisan support, the Society and coalition partners are urging the Senate Foreign Relations Committee to hold a hearing soon on this important treaty. This would keep up the momentum and hopefully lead to quick passage.