Federal Focus - August 2011

Bill Reintroduced to Ensure Collection of Basic MS Data

On July 20, 2011, Representatives Chris Van Hollen (MD-8) and Michael Burgess, M.D. (TX-26) co-introduced the National Neurological Diseases Surveillance System Act (H.R. 2595). This bill was introduced with 22 bi-partisan cosponsors and acts as the companion legislation to S.425, the Senate version of the bill introduced in March 2011 by Senator Mark Udall (CO).

This legislation was introduced to try to address a basic but important question for the MS community—how many people in the United States currently live with MS? Currently, there is no accurate national data on how many Americans are living with MS. This bill will try to address this gap in knowledge by creating a surveillance system, or a database, that will collect information on the number of people who are newly-diagnosed with MS every year and how many total people are currently living with MS in the United States. The bill will create, for the first time, separate, permanent, and coordinated national databases at the Centers for Disease Control and Prevention (CDC) for diseases including MS and other neurological conditions. The information will lay a foundation that will allow researchers to better evaluate and understand disease factors, including geographic clusters of diagnoses, variances in gender ratio, changes in health care practices, and fluctuations in disease burden and population over time. Ultimately, this information will provide researchers with important information about the disease and will move studies for a cure forward.

Similar legislation was introduced last session of Congress, the National MS and Parkinson’s Disease Registries Act (H.R. 1362/S. 1273). With the help of many relentless MS activists, last session’s legislation passed the House; however, because it did not pass in the Senate, the bill must once again be considered and approved by the House.

Click here to ask your Representative to support collection of better, more comprehensive MS data and cosponsor H.R. 2595, the National Neurological Diseases Surveillance System Act.

Debt Deal Means Possible Changes Down the Road

On August 2, the President signed into law the Budget Control Act of 2011. In addition to permitting the President to raise the debt ceiling limit and avoid default, the law addresses federal spending and the deficit both through immediate changes and a process that could lead to changes down the road. To address the national deficit, federal discretionary spending has been capped through 2021; it is anticipated that this will generate nearly $1 trillion in deficit reduction.

Possible changes down the road could have a serious impact on federal programs that are important to persons living with disabilities. Just last week, a bipartisan Congressional Joint Select Committee was selected that is tasked with developing recommendations for an additional $1.2-1.5 trillion in long-term deficit reduction. Everything is theoretically on the table when developing these recommendations—including Medicare, Medicaid, and Social Security. The following members of Congress were appointed to the Committee: Senators Patty Murray (WA), John Kerry (MA), Max Baucus (MT), Jon Kyl (AZ), Pat Toomey (PA), and Rob Portman (OH) and Representatives Jeb Hensarling (TX-5), Dave Camp (MI-4), Fred Upton (MI-6), Chris Van Hollen (MD-8), James Clyburn (SC-6), and Xavier Beccera (CA-31).

Approximately one-quarter of people living with MS rely on Medicare for access to the following essential care: access to doctors, diagnostic equipment, durable medical devices, MRIs, prescription drugs, and home health care. Medicaid is another important component of the health care system--providing health coverage to 8 million individuals living with disabilities and to approximately 9 million low-income Medicare beneficiaries who depend on Medicaid to fill coverage gaps. While it is estimated that only 5-10% of persons living with MS rely on Medicaid, the services that Medicaid provide are particularly valuable. Medicaid is the primary public source of funding for long-term services and supports and also has a strong track record of providing home-and-community-based services that allow individuals with MS to live and work in their communities and avoid costlier and premature admission to institutional facilities.

This Joint Committee must approve its recommendations and put forth legislation by November 23, 2011. Congress must then vote on the legislation by December 23, 2011. If the Joint Committee fails to approve recommendations or Congress fails to pass the legislation, automatic cuts will happen across the board that in total, save $1.2 trillion. If the Joint Committee approves and Congress passes a proposal that saves less than $1.2 trillion, automatic cuts will make up the difference. The good news for disability advocates is that Congress exempted Medicaid and Social Security should these automatic cuts have to occur. Medicare providers could face up to 2% cuts, but Medicare beneficiaries' cost sharing cannot be increased and benefits may not be reduced. Significant structural changes to entitlement programs like Medicaid could happen through the Committee’s recommendations though and the Society will continue to monitor any potential impact that persons living with disabilities could face. Stay tuned for updates from the Public Policy Office and for opportunities to weigh in with your federal legislators!

ADA Celebrates its 21st Anniversary
July 26 was the 21st anniversary of enactment of the Americans with Disabilities Act (ADA). A landmark civil rights law, the ADA prohibits discrimination on the basis of disability in employment, State and local government services, public transportation, public accommodations, commercial facilities, and telecommunications. The Society’s Public Policy Office attended a celebration on Capitol Hill attended by U.S. Department of Health and Human Services Department Secretary Kathleen Sebelius and several federal legislators who were integral to the law’s passage over twenty years ago including Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5). Speakers discussed the law’s importance, the strides we have made in terms of accessibility, and the path we must continue in order to realize the ADA’s full promise of equal rights. To see pictures from the celebration and read more, visit the MS Activist Blog.