Coupon Bill language victory and final call to action!

A key grass-roots victory to report! Thanks to your calls and emails to the legislature Governor Patrick signed the state budget which included the “coupon bill language” which now allows all Massachusetts consumers to utilize all pharmaceutical discounts, coupons and assistance programs such as co-pay programs. This will help ensure individuals with MS can afford their treatments! The state budget also preserved language and funding for the chapter’s Home LINKS care management program! Although the formal legislative session is almost over there is one more bill that will impact people with MS we need people to take action on today! Background Two differing bills (House Bill 4155 and Senate Bill 2270) currently sit before a six person conference committee charged with negotiating the differences between the bills to come up with a single, compromise piece of legislation to send to Governor Patrick. Both bills propose to establish a Prevention and Wellness Trust Fund, which would provide grants to support community-based prevention and wellness programs. On the Senate version of the bill, we were able to secure with your advocacy an amendment that added “chronic disease management” as one of the purposes to be accomplished by programs funded through the Trust. The House version of the bill does not include that language. This difference is important because if the Trust purpose includes “chronic disease management”, this creates a great opportunity for programs such as the MS Home LINKS program to apply for access to these grant funds. If “chronic disease management” is not included, the availability of such funds for programs like Home LINKS is uncertain. Talking Points for MS Action Alert Members ACTION #1. Contact the Health Care Conferees (listed below) and ask them to include “chronic disease management” as one of the purposes of the Prevention and Wellness Trust Fund and adopt the language in Senate Bill 2270. - Representative Steven Walsh (617) 722-2430 - Senator Richard Moore (617) 722-4120 - Representative Ronald Mariano (617) 722-2300 - Senator Bruce Tarr (617) 722-1600 - Representative Jay Barrows (617) 722-2488 - Senator Anthony Petruccelli (617) 722-1634 Sample Dialogue My name is: ______________________. I am calling about the payment reform legislation currently being negotiated by the conference committee. In particular, I am calling to ask that language, adding “chronic disease management”, be included within the purposes of the Prevention and Wellness Trust Fund as it appears in Senate Bill 2270. The creation of a Prevention and Wellness Trust Fund is more than just advising healthy individuals to avoid unhealthy behaviors - Healthy individuals are not the only groups of individuals who need preventive and wellness programs. Individuals living with a chronic disease need assistance with daily management of conditions. This fund should also be used to prevent and manage conditions that worsen the quality of life. Studies have shown that the few dollars spent on prevention save thousands of dollars in treatment and inpatient care later. We cannot ignore the need to manage chronic diseases today and every day. I ask that the Representative/Senator support this language. Will she/he do so? Again, my name is ____________________. I can be reached at _________________ (provide telephone #) if the legislator has any questions. Thank you and please support our efforts to promote chronic disease management. 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 Advocacy Icon Jpg Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at http://www.nationalmssociety.org/ or 1-800-344-4867. Our postal address is: National Multiple Sclerosis Society 733 Third Avenue New York, New York 10017 Unsubscribe Email Preferences Forward to a Friend Privacy Policy

Another Push for Disability Rights Treaty

On July 12th, the Senate Foreign Relations Committee held the first hearing in the consideration of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This hearing was a success for the disability community and a significant step in the ratification process! The Committee is scheduled to meet again this Thursday, July 26—the 22nd anniversary of the Americans with Disabilities Act (ADA)—for the next step towards ratification, which is to ‘mark-up’ the treaty. Since this mark-up vote in Committee determines whether the full Senate will vote to ratify the treaty and your Senator is on this instrumental Committee, we need you to contact him/her once again! The treaty needs a simple majority vote to be sent to the full Senate. Supporters of the treaty have been out in full force, meeting with Senators and their staffs, and activists from around the country—like yourself—have been contacting Senate Foreign Relations Committee members expressing strong support for the treaty. And last week former Senate Majority Leader Bob Dole signaled his strong support in this guest commentary. It is particularly important for you to take action because while support for this treaty is strong, opponents have been mounting their arguments in attempt to stop its progress. Opponents are concerned that the treaty will take away their ability to decide on the best educational setting for their children and that it would somehow be a ‘back door’ for the incorporation of two other treaties which the United States has not yet ratified. The Society and other organizations supporting the treaty disagree with these interpretations and urge the U.S. Senate to do the right thing by voting to ratify the CRPD. Ratification will essentially take the ADA international and affirm and ensure the rights of people with disabilities around the globe. Please urge your Senator who is on the Foreign Relations Committee to support ratifying the CRPD by clicking here to email him/her. You will be prompted to enter your zip code and then an email will appear for you to easily send to your Senator’s office. We need to continue to make our voices heard! Thank you for your help!

Study Identifies Possible Target of Immune Attacks in Some People with MS : National MS Society

Research - Stop Researchers have identified a protein that may be a target of the immune attack in some people with MS, according to a new study published in The New England Journal of Medicine. An immune response to this protein – a protein called “KIR4.1,” which is found on several types of brain cells – was observed in the serum of 47% of people with MS who were tested. Further research is needed to confirm these findings, and to understand what the role of this protein may play in MS and its potential for developing new treatments. Rajneesh Srivastava, MSc and Bernhard Hemmer, MD (Technische Universität, Munich) led the international team, who are supported by grants from the German Ministry for Education and Research and the National MS Society, among others (2012;367:115-23). Background: Multiple sclerosis involves immune system attacks that damage the brain and spinal cord, particularly myelin (the substance that surrounds and supports nerve fibers). Myelin-making cells and nerve fibers are also damaged during the course of the disease. The spinal fluid of most people with MS contains increased amounts of a type of antibody called IgG. Antibodies are immune proteins directed against an immune target, or “antigen.” IgG antibodies are present almost exclusively in infectious and inflammatory disorders and are usually directed against the disease-causing agent. However, previous attempts to identify antigens to which antibodies are targeted in MS have failed. The current study focused on the serum portion of blood samples from people with MS and from others, rather than on spinal fluid. The study: In a series of experiments, the authors screened serum samples from people with MS and observed that IgG antibodies were attaching themselves to specific myelin-making cells. Using “proteomics” – advanced technology that scans hundreds of thousands of proteins simultaneously – they screened numerous proteins on the cells. They identified the protein KIR4.1 as the target of the IgG reaction. KIR4.1 is an ion channel; these are proteins that are active on the surfaces of several types of brain cells and are critical for cell function. The team then developed a method of testing people for the presence of antibodies against KIR4.1 in serum samples, and found antibodies to KIR4.1 in a substantial proportion of people with MS in comparison with others tested. In fact, the antibodies were found in serum of 186 of 397 (46.9%) people with MS, versus only 3 out of 329 people with other neurologic disorders, and in none out of 59 people without disease. Further studies revealed that when anti-KIR4.1 antibodies that were obtained from people with MS were injected into mice, abnormalities in the nervous system occurred. In previous studies, KIR4.1 has been shown to be important in myelin formation, so the authors conclude that this protein is a plausible candidate to be a target of the immune attack in at least some people who have MS. The investigators did not observe any clinical or other differences in people with MS who had the antibodies versus those who did not. How this protein may be involved in MS, and whether this finding will lead to new approaches to treating MS, awaits further research. Comment: In an accompanying editorial, Anne H. Cross, M.D (Washington University School of Medicine, St. Louis) and Emmanuelle Waubant, M.D., Ph.D. (University of California, San Francisco) discuss the strengths of this study. “First, the authors used an unbiased approach to search for serum antibodies specific to patients with multiple sclerosis and, once they found them, methodically sought the target,” they write. The specific role of the protein awaits definition, especially since half of the people with MS did not have the antibodies to KIR4.1. They note that even if these antibodies arise sometime after the nervous system has already sustained damage in MS, “it is conceivable that they may perpetuate destruction of the central nervous system.” Read more about efforts to stop MS in its tracks.

Your Help Is Needed to Secure MS Research Funding

Take Action! Tell Your Representative to Vote in Favor of More MS Research The House is set to vote this week on a bill that includes $5 million for the multiple sclerosis (MS) program within the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DoD) program that is funded annually via the Defense Appropriations Act. Because of the hard work of MS activists across the country, over $20 million has been allocated to MS research under the CDMRP over the past five years. It is important that you act now to ensure this funding stream is maintained for MS research! Ask your Representative to support at least $5 million for MS research in the CDMRP for FY2013, which could accelerate the path to finding a cure. Since its inception, the program has helped to fund research to better understand the origin of MS and unveil potential new therapies that will help slow progression and restore function. However, there are a large number of applications each year for the program and not all research can be funded because of limited money. Ask your Representative to vote in favor of MS research by including at least $5 million in the budget. Write them now!

Federal Focus - July 2012

Senate to Hold Hearing on International Disability Rights Treaty The Senate Foreign Relations Committee recently announced that it will hold a hearing on July 12th on the Convention on the Rights of Persons with Disabilities (CRPD), an international treaty which essentially takes the Americans with Disabilities Act international. The President signed the treaty in 2009, but in order for it to have the force of law—the United States Senate must ratify it by a two thirds majority. The Society has been working in close collaboration with other organizations like the U.S. International Council on Disabilities to increase support in the Senate and the Committee hearing is exciting progress towards ratification. Senate Committee Approves Funding for MS Priorities In mid-June, the Senate Appropriations Committee approved a bill that contains funding for many priorities for people affected by MS. MS activists have been weighing in with their members of Congress about these funding priorities since the spring. The Senate Committee-approved bill includes $30.72 billion for the National Institutes of Health (NIH), a small increase over the previous year. The NIH is the country’s premier institution for medical research and each year, dedicates around $120 million toward MS-related research. As part of the NIH funding, the Committee would provide $40 million for the Cures Acceleration Network, a new program that aims to advance the development of effective treatments and reduce significant barriers between research discovery and clinical trials. The Committee also provided $4.99 million for the Lifespan Respite Care Program that supports our nation’s 65 million+ family caregivers, $3.47 billion for the Low-Income Home Energy Assistance Program (LIHEAP), and $11.7 Billion for the Social Security Administration (SSA) to fund SSA’s day-to-day operational responsibilities and help speed the process of receiving disability benefits. There are several more steps before this bill becomes law, but its contents are promising and show that members of Congress are hearing MS activists’ messages that even with the continued difficult budget climate, investing in issues like MS research is important. U.S. Supreme Court Health Care Ruling After much anticipation, the U.S. Supreme Court ruled on June 28th to uphold most of the Patient Protection and Affordable Care Act (ACA). The ruling was a 5-4 decision, with Chief Justice Roberts as the swing vote. The Court decided that the cornerstone of the law—the individual mandate requiring people to have health insurance or face a financial penalty—is valid as a tax, even though the court simultaneously said the mandate is not permissible under the Constitution’s commerce clause. Because it has been deemed constitutional, the law’s individual mandate will require most people to have health insurance or face a fine, starting in 2014. There are exceptions to the mandate for people who cannot afford coverage even with a subsidy, and those with religious objections. The individual mandate is critical because it expands the pool of people paying for insurance--spreading the cost more widely and allowing other important provisions to continue like banning lifetime limits and ending discrimination based on pre-existing conditions. While the individual mandate was upheld, the high Court also ruled that the part of the law expanding Medicaid must change. As enacted, the law required states to expand their Medicaid programs or face losing the federal government’s entire contribution to the program. By a 7 to 2 vote, the court found this too coercive on states and struck it down. Now, rather than demanding that states expand their Medicaid programs, each state has the option of doing so. With this historic decision behind us, the Society will continue its work on the law’s implementation in the interests of people affected by MS and it will work with members of both political parties to further refine and improve public policies relating to this and other health-related laws. Bill to Support Drug and Device Approval Enacted Over the past two weeks, the House and Senate approved an important piece of legislation that expedites the review of drugs and devices by authorizing “user fees” – the Food and Drug Administration Safety and Innovation Act (S. 3187). After both chambers came to a compromise, the House quickly moved to pass the bill at the end of June with the Senate passing it shortly thereafter. This bill reauthorizes the Food and Drug Administration’s (FDA) ability to collect user fees for five years to provide funding for the prescription drug and device approval process. In addition to branded drugs, this bill incorporates user fees for generic and biosimilar applications for the first time. This bill also codifies some other important policies at the FDA. The user fee program essentially allows the FDA to charge drug and device firms a fee for every application they submit for review to the FDA. In return, there is an explicit expectation that the FDA will hire more staff and review these treatments faster, in order to get them on the market more quickly. In addition to determining the fee amount, this agreement incorporated a number of new policies. Two of the policies were supported by the Society: 1) to better incorporate patients’ views on benefits and risks of drugs and devices as they are being evaluated and 2) to improve the FDA’s ability to evaluate drugs using biomarkers and patient reported outcomes as clinical endpoints. The Society applauds Congress’ bipartisan work to get this legislation to the President so quickly and is happy that the FDA will continue to have resources to quickly and effectively evaluate drugs and devices for patients.

Senate Hearing Signals Progress for Disability Rights

The Chair of the Senate Foreign Relations Committee, Senator John Kerry (MA), announced that there will be a hearing on the Convention on the Rights of Persons with Disabilities (CRPD) on July 12, 2012 – this is great news and the next step toward ratification! In 2009, the United States signed the CRPD—an international treaty 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 hearing will be chaired by Senator Dick Durbin from Illinois—an original sponsor of CRPD. One of your U.S. Senators is a member of the Senate Foreign Relations Committee. We need your help to urge your member to attend the hearing and support the CRPD. Please contact your Senator by email by clicking here and urge him or her to support ratifying the CRPD. You will be prompted to enter your zip code and then an email will appear for you to easily send to your Senator’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 crucial treaty ensures that people with disabilities, including people living with MS, have equal rights and extends disability rights globally. Thank you for your help!