Federal Focus - May 2012

House to Decide Funding Level for MS Research in the CDMRP Next Tuesday, May 8th, the House Appropriations Subcommittee on Defense is expected to “mark up” its Fiscal Year 2012 appropriations bill. This is typically when the House first indicates how much funding will support MS research in the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a peer-reviewed program that funds high-risk, high-reward research. Over the past five federal funding cycles, MS research has received over $20 million through the CDMRP. For Fiscal Year 2012, the Society is advocating for $10 million for MS research through this program. Representatives Burgess (TX-26) and Carnahan (MO-3) championed a bipartisan letter signed by 66 other Representatives urging the Appropriations Committee to provide $10 million for MS research in the CDMRP. This letter was sent to the Appropriations Committee in mid-March in advance of Tuesday’s markup. We will be sending a special action alert to MS activists who reside in districts whose members are on this important Subcommittee. Please look for this email and take action by emailing your Representatives to ensure robust funding for MS research! Email Your Members of Congress to Ensure that People with Disabilities Have Equal Access to Swimming Pools In 1990, Congress passed the Americans with Disabilities Act (ADA) with broad bipartisan support and President George H.W. Bush signed it into law. This historic achievement granted people living with disabilities the rights they deserve and protection from discrimination due to a disability. Specifically, it protects people with disabilities in employment settings, state and local government activities (such as public education and voting), public accommodations (such as hotels and restaurants), commercial facilities, transportation, and telecommunications. Since its enactment, the ADA has been strengthened through amendments and many regulations that clearly spell out the rights of people with disabilities. Nonetheless, the ADA has yet to be applied and enforced for some activities and services, including ensuring equal access for people with disabilities to swimming pools. Access to swimming pools is as important for people with disabilities as it is for everyone else. Swimming is an important part of participating fully in one’s community and engaging in social interaction with friends and family. In addition, for many people with disabilities, swimming is a critical means of exercise that helps maintain strength and independence. Initial guidelines on the accessibility of swimming pools were issued in 2002 and since then, have been incorporated into more official guidelines in preparation for the required formal rulemaking process. Recently, there have been efforts by certain opponents to further stall the final rule and to deprive the Department of Justice of their authority to enforce them. Either of these actions would weaken the intention of the ADA and leave people with disabilities waiting even longer for their rights to equal access to swimming pools. Click here to contact your members of Congress about this important issue. Your emails will state that people with disabilities have the same rights as everyone else to use swimming pools and will urge your members of Congress to oppose efforts to stall this regulation. Congress Considering FDA Bill With many bills stalled in Washington this election year, there is one piece of health legislation that both Republicans and Democrats agree is a “must-pass” bill—the reauthorization of the Prescription Drug User Fee Act (PDUFA). The original bill was enacted in 1992 and gives the Food and Drug Administration (FDA) the authority to collect user fees from drug companies to help fund the agency’s review of their products. The general intention of the current bill is to increase the number of staff at the FDA who are dedicated to drug review process. Increasing staff capacity will also improve review times for new drugs. Because of its “must-pass” status, it has become a vehicle for numerous groups and members of the relevant Congressional committees with an interest in shaping the FDA’s agenda. In 2010, the FDA began holding a series of meetings with members of the drug industry, the public and other interested parties in preparation for the re-authorization of the Prescription Drug User Fee Act. These meetings resulted in consensus among the stakeholders on resulting in recommendations for the user fee programs. These recommendations were sent to Congress — where lawmakers now have the opportunity to add additional measures to the bill. The Society participated in the meetings for patient groups and advocated for many patient-centric positions, which eventually made it into the agreement. With the looming elections, Congress originally set a goal of passing the reauthorization early and finishing it before the end of June. Given the two chambers’ differences, however, it is unclear whether that deadline will be met. Already there are differences between the Senate and House versions of the bill, including changes to the FDA’s mission, incentives for drugmakers to make new antibiotics, and reforms of medical device regulations. Despite the differences, lawmakers are expected to reach agreement and pass a reauthorization bill before the user fee programs’ Sept. 30 expiration date. The Society will continue to monitor the provisions included in PDUFA and advocate for its passage in a timely manner.