Federal Focus-September 2013

Urge Your Members of Congress to Attend a Briefing on Medical Research and Progressive MS

Next Thursday, September 12, the National MS Society in partnership with the Congressional MS Caucus is hosting a briefing on Capitol Hill to educate members of Congress and their staff about why more medical research is needed—especially for progressive MS. Email your members of Congress today to urge them or their staff to attend this important briefing!

 

Research is moving us closer to a world free of MS. In the past 20 years, the first drugs to slow the progression of some types of MS were brought to market. However, the most progressive forms of the disease have no approved treatments and there is still no cure for any course of the disease. Speakers will discuss how the Society often acts as a co-financer of important National Institutes of Health research initiatives, promising research happening now and the need for maintained research funding to help those with progressive MS and one day, deliver a cure.

 

In an era of tough budget times, it’s vital that members of Congress know that continued research funding is incredibly important to people affected by MS. Click here to email your members of Congress and urge them or their staff to attend this educational briefing.

 

Educate Yourself About Health Care Options

Starting in October, most people who do not already have health insurance will be able to sign up for coverage that takes effect in January 2014. People who already have health coverage can keep what they have. To learn about your options, we urge you to read information posted here.

 

There are fact sheets for people in different situations—for instance, those who have job-based coverage, who rely on Medicare, or buy their own coverage. Another fact sheet in the series is “Help for People with High Medical Expenses.” There are several exciting changes that the Society advocated for through health care reform including tax credits for some individuals, families and small businesses to make coverage more affordable. Also, insurers will no longer be able to deny coverage or charge more because of a pre-existing condition like MS.

 

Information is power and we urge you to start educating yourself to learn how health care reform will impact you. If you have questions, a 24 hour toll free phone line and online chat support are available now.

 

Society Submits Testimony to the Long-term Care Commission

Several months ago, Congress established a bipartisan Long-term Care Commission that is supposed to develop policy recommendations to strengthen long-term services and supports (LTSS) in our country. The Commission held four public meetings to hear how LTSS are currently provided through public programs like Medicaid and Medicare and through private long-term care insurance, about the different populations who need LTSS and issues to consider when trying to strengthen the LTSS workforce.

 

To help educate the Long-term Care Commission about the LTSS needs of people with MS, the Society submitted this testimony. Approximately 20-25% of individuals with MS need long-term care (LTC) services and approximately 5-10% will require residential care. The testimony discusses how MS impacts the whole family; supports helpful to keep people at home for as long as possible including support for family caregivers and adult day centers that specialize in the MS population; and the need for more nursing homes that can support a younger disabled population.

 

The Long-term Care Commission is expected to finish its report for Congress in mid-September. It is unclear at this point what next steps will be, but the Society will continue to advocate for more flexible, affordable LTSS options for people with MS. Many of you have signed a petition that we’ve been promoting. Once we reach 10,000 signatures, we will deliver the petition to Congress to urge them to reform LTSS in our country. If you haven’t already, sign the petition today!

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