Federal Focus - October 2010

House Passes HR 1362 and Sent to Senate for Consideration
Just before breaking for recess last week, the House of Representatives passed H.R. 1362, the National Neurological Diseases Surveillance System Act. Previously named the National MS and Parkinson’s Disease Registries Act, H.R. 1362 was expanded during an Energy and Commerce committee mark-up earlier this month. This modification would make the surveillance system available to all neurological conditions, while maintaining MS and Parkinson’s as a priority.

This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis (MS) and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.

While we have passed this bill in one chamber of Congress, the work to get this system in place is not done yet. To make this data system a reality, the Senate must now take action on the companion bill, S. 1273, before they adjourn for the year. Click here to ask your Senator to pass S. 1273 this session of Congress to establish a surveillance system for MS!

Federal Appropriations Update
Congress will need to continue addressing federal appropriations for Fiscal Year 2011 after the November elections, which includes MS priority issues like funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP), the Lifespan Respite Care Program, and the National Institutes of Health (NIH). Before they recessed, Congress passed a continuing resolution that keeps the government operating into the new fiscal year largely at FY 2010 funding levels. This continuing resolution will expire December 3.

MS research funding in the CDMRP is included in the Department of Defense appropriations bill, which to date has passed through the Subcommittee in the House and passed through the full Appropriations Committee in the Senate. One of the Society’s 2010 priority issues is to increase MS research funding in the CDMRP and early indications are that the House Subcommittee has provided such an increase—for a total of $6 million specifically designated for MS research. This would be an increase of over 20 percent in funding. The Senate, on the other hand, has provided funding for medical research, but without a specific MS program.

Funding for the Lifespan Respite Care Program and for the NIH is contained in the Labor, Health and Human Services (LHHS) appropriations bill. The House has passed its LHHS appropriations bill out of the Subcommittee and the Senate has passed its version out of the full Appropriations Committee. The Lifespan Respite Care Program, one of the Society’s priority issues for 2010, provides competitive grants to states to establish or enhance statewide lifespan respite programs serving family caregivers regardless of age or disability. Both chambers have urged an increase for Lifespan Respite, with the Senate providing the largest increase for a total of $7 million. The Senate has also approved a significant increase for the NIH--$1 billion above FY 2010 levels for a total of $32 billion. The NIH is the single largest source of biomedical research funding in the world and conducts and sponsors a majority of the MS related research carried out in the United States.

Bill Introduced to Support MS Achievement Centers
In late September, Congresswoman Barbara Lee (CA-9) introduced a bill to bolster achievement centers for people living with MS, the Adult Day Achievement Center Enhancement Act (H.R. 6208). This legislation would help sustain and grow Adult Day Achievement programs by establishing a new grant program within the Administration on Aging that is specifically designed to support Adult Day programs targeting a younger population of people, such as those living with multiple sclerosis (MS) and similar diseases.

The concept of this legislation is based upon the success of existing MS Adult Day Programs (MSADP). MSADPs provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.

Currently, however, few Adult Day programs are equipped to provide the younger disabled population with age-appropriate adult day programming. There are less than a dozen MS Adult Day Programs in the United States at present but increased federal funding via competitive grants could help promote more options for this population. We will continue to provide updates on ways to engage on this issue, so stay tuned!

Congress May Address Stem Cell Through Legislation
The U.S. Court of Appeals for the District of Columbia has lifted an injunction imposed by a federal judge in late August, allowing federal funding of embryonic stem cell research (ESCR) to temporarily continue while the case is heard on merits.

The National MS Society has made a commitment to pursue promising avenues that will lead to solutions that stop disease progression, restore function, and ultimately prevent future generations from ever receiving an MS diagnosis. This commitment is reflected in our decision to support the conduct of scientifically meritorious medical research, including research using human cells, in accordance with federal, state and local laws, and with adherence to the strictest ethical and procedural guidelines. This decision was not reached without intense scrutiny and discussion among volunteers, people living with MS, ethicists, researchers and scientists, and MS neurologists. Rather than stop federal funding, more research is needed to better understand which stem cells, and from what sources, could hold significant promise for repairing damage and restoring function, as well as provide a better understanding of the underlying disease cause.

With the help of MS Activists, Congress in the past twice comfortably passed bi-partisan legislation permitting federal funding of ESCR, but both bills received presidential vetoes. In 2009, an Executive Order lifted previous restrictions on federal funding of ESCR and brought new hope to the millions of people living with chronic and debilitating diseases or disabilities. An August federal court ruling halted this progress by issuing a preliminary injunction against federal funding of ESCR. While the recent appeals court ruling provides temporary protection, legal battles in the court system continue and the only way to guarantee a permanent solution is to pass bi-partisan legislation.

Congress may address ESCR when it returns to Washington in November. Legislation has been introduced in both the House and Senate that places strict ethical and procedural limits on the use of federal funds, in line with the 2009 Executive Order. Stay tuned for further updates on legislation to protect federal funding of ESCR.



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