Federal Focus - August 2013

Congress Heading Home for August Recess Congress has been busy wrapping up some items before members head back to their states for a month-long break. In addition to a Medicare-related bill, both the House and Senate have been working on annual funding bills that provide support for departments and programs important to people with MS including the National Institutes of Health (NIH). The start of the fiscal year (October 1) isn’t too far off and some already speculate that Congress will pass a Continuing Resolution to buy more time to complete the annual funding process. MS activists will be busy meeting with their members of Congress who are home for August recess to discuss our funding priorities for the year: the NIH, MS research funding through the Congressionally Directed Medical Research Programs (CDMRP) and the Food and Drug Administration (FDA). These visits are part of our year round advocacy to ensure that MS research is well funded and that the FDA has adequate resources to review and approve devices and new treatments for people with MS. If you are interested in attending August recess visits with members of Congress, contact your local Society chapter. International Rights Treaty Update Many of you have taken action urging your U.S. Senators to support the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD aims to create a more accessible world where Americans with disabilities—including veterans— have increased independence and equal rights to continue to work, serve, study, live or travel abroad. The Senate voted on the treaty in the 112th (last) Congress, but fell short of ratification. Because a new Congress began in January, the treaty has to start from the beginning and be approved by Committee before the full Senate can vote on it. The most recent indications are that the Senate Foreign Relations Committee may hold a hearing on the CRPD in September or October. Stay tuned for opportunities to take action and ensure your Senators’ support for the CRPD.

Federal Focus - May 2013

Tell Congress to Strengthen Long-Term Care The Society is working closely with other organizations concerned with the lack of affordable, flexible long-term care options in our country. As part of that effort, we encourage activists to sign this online petition. It asks that Congress re-evaluate current long-term services and supports options and create broader access to address the growing need. As part of the health care reform law, Congress created a voluntary long-term insurance program that would have provided a cash benefit to people who become functionally or cognitively impaired. This provision could have helped people maintain their independence and remain living in their communities. The Society and many other advocacy organizations supported this program but it was eventually deemed financially unsustainable and was repealed. In its absence, Congress has established a bipartisan Long-term Care Commission that is tasked with developing policy recommendations to strengthen long-term services and supports. Even though the Commission members have been appointed, it has not yet met formally and it is unclear when they will begin their important work. Congress needs to hear about how important this issue is and that’s why we encourage you to sign the online petition. About a quarter of people with MS will require long-term care at some point in their lives, when the symptoms become particularly severe and/or the disease has significantly progressed. Family members often become the primary providers of care, but people with MS also rely greatly on home health care workers, personal care attendants, other community supports, adult day achievement centers and residential settings. This online petition advocates for a broad array of options for people—from home- and community-based services to residential—and stresses that the options be affordable. Currently, too many people are forced to spend down into poverty in order to access these vital services. Be sure to sign the petition today! MS Research Funding Victory in FY 2013 Budget, as Congress Begins FY 2014 Appropriations Work In late March, Congress and the President agreed to a continuing resolution, which will fund the federal government through the end of Fiscal Year (FY) 2013. Shortly after this agreement was made, the Society received word from the Department of Defense that the Congressionally Directed Medical Research Program for MS received $5.0 million, a $1.2 million increase over FY 2012! Given the federal budget issues, this is a huge accomplishment for the MS community. This 30 percent increase can all be attributed to the hard work of MS activists over the past year, as they repeatedly contacted their Members to ask them to support this level of funding. Congrats MS activists! With FY 2013 funding levels decided, Congress has started the appropriations process for FY 2014. As part of this, over the past few weeks, MS activists worked hard asking their members of Congress to support funding for MS research through the National Institutes of Health (NIH) and the CDMRP, as well as funding for the Lifespan Respite Care Program on letters that are sent to the Appropriations Committees. This year, MS activists helped garner impressive support: 168 members of the U.S. House of Representatives and 52 U.S. Senators support funding for the NIH, 56 Representatives and 8 Senators support MS research funding in the CDMRP and 35 Representatives support funding for Lifespan Respite (there was no Senate Lifespan Respite letter). Excellent work, MS activists! We will update you as the appropriations process continues with other opportunities for action. International Disability Rights Treaty Update The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is expected to receive new hearings in the Senate Foreign Relations Committee, possibly as early as the week of May 20th. This is the same treaty that the Society pushed heavily during the previous Congress and that MS activists around the country reached out to their Senators asking them to support. Now, since it is a new Congress, the process needs to start over—beginning with the Senate Foreign Relations Committee. The Society continues to strongly support the treaty. Currently, we are focusing advocacy efforts on highlighting the positive impact the treaty will have for Americans with disabilities, and the benefit to American businesses by opening additional markets for American made goods, which will spur new economic growth. Additionally, the CRPD will help create a level playing field between U.S. businesses that are ADA compliant and businesses in other countries that currently do not have comparable workplace standards. Stay tuned for opportunities to take action and help move the CRPD forward to ratification

Encourage Congressional Support for MS Priorities

Over the past two weeks, Members of the House of Representatives have circulated ‘Dear Colleague’ letters, urging members to formally signal support for certain funding priorities. During this time, three letters have been generated in support of funding for MS issues: the National Institutes of Health (NIH), the MS program in the Congressionally Directed Medical Research Program (CDMRP) and the Lifespan Respite Care program. This week, the CDMRP letter was sent to the House Appropriations Committee with 52 co-signers supporting $10 million for fiscal year (FY) 2014. The other two letters will remain open until next week, as additional signatures are collected. Please take a minute to ensure the greatest support for NIH and the Lifespan Respite Care Program by contacting your Member today and urge him/her to co-sign these letters! National MS Society Sponsors Rally for Medical Research On April 8, the Society joined thousands of advocates in Washington, D.C., to call on Congress to increase funding for medical research, which was cut in early March due to sequestration. Nearly 200 organizations and a handful of lawmakers, including MS Caucus co-chair Rep. Chris Van Holler (MD-8), participated in the event, reflecting the importance of research on health and the economy. The sequester, or across the board cuts, reduced the budget for the National Institutes of Health (NIH) by roughly $1.5 billion this year. In addition, the Congressionally Directed Medical Research Programs (CDMRP) within the Department of Defense also faces cuts, with the exact amount to be determined in the upcoming weeks. The Society and others have warned that reductions and uncertainty in research funding will postpone medical breakthroughs and set research back considerably. This message was echoed on Monday, as MS Activists and others sent several thousand emails and text messages to Congress asking them to make research funding a priority. President Releases Budget Plan; Includes Compromises On April 10, President Obama released his proposed budget for fiscal year (FY) 2014. Generally, the President proposes to cancel sequestration and replace it with an additional $1.8 trillion in deficit reduction through new revenue, $400 billion in "health savings," Social Security changes, and $200 billion in discretionary cuts split evenly between defense and nondefense programs. The president’s budget is unlikely to pass Congress or be enacted exactly as proposed, but the document underscores the White House’s priorities. While many programs face potential downsizing, the White House budget proposes a 5 percent increase in funding for the Department of Health and Human Services. The President is requesting $80.1 billion in discretionary funding for the Department of Health and Human Services, up $3.1 billion (5.1 percent) from the $76.2 billion enacted for fiscal 2012. The president's 2014 proposed budget does not reflect recent appropriations or sequestration spending figures (for 2013). Specifically, the Food and Drug administration is slated to receive an increase, with a proposed budget of $4.7 billion, an $821 million increase (or 21 percent) over its 2012 budget. Much of that increase would come from new “user fees” (or charges to the medical device and drug industries the FDA regulates). Additionally, the National Institutes of Health (NIH) budget would increase slightly to $31.2 billion from the $30.7 billion enacted in fiscal year 2012. Conversely, the budget also proposes some reductions in health spending. The budget spells out plans to generate $389 billion through Medicare cuts and other HHS-related savings over a 10-year period. Long-term Care Commission Established As part of the deal that averted the fiscal cliff last December, Congress repealed the Community Living Assistance Services and Supports (CLASS) Program. Planned as a voluntary long-term insurance program, CLASS would have provided a cash benefit to people who become functionally or cognitively impaired and could have helped them maintain their independence and lives in their communities. CLASS was originally enacted as part of health care reform, but was ultimately determined to be financially unsustainable. When it repealed CLASS, Congress established a bipartisan Long-term Care Commission that is tasked with developing policy proposals that could provide more flexible, affordable long-term services and support options. All appointees have now been named to the Commission, which will have six months in which to complete its important work once some administrative details are finalized.