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The ALS Association Northern Ohio Chapter

 

Legislative Priorities

(January 28, 2014)

Appropriate $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention. 

The Administration and Congress have made the establishment of a national ALS patient registry a top priority through the enactment of the ALS Registry Act in 2008 (P.L. 110-373) and by appropriating funding to develop and implement the registry in each of the past eight years.  These actions have enabled the CDC/ATSDR to launch the first ever national ALS registry.  Using a variety of enrollment strategies, including online self-enrollment, the registry currently is identifying the number of cases of ALS in the U.S. and collecting data that may help us learn what causes the disease and how it can be treated, prevented and, ultimately, cured.  

However, funding is necessary in FY 2015 to continue the registry, coordinate federal efforts, help people with ALS enroll in the registry and conduct outreach activities to identify ALS cases in all 50 states, including in rural and underserved areas and minority populations.  Moreover, continued funding is needed to collect additional information about ALS cases, explore the possibility of adding a biorepository that collects blood and tissue samples and enable the registry to advance clinical trials to develop new treatments for the disease.

Appropriate $10 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD). 

Studies supported by the DOD, Department of Veterans Affairs, National Institutes of Health, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans, regardless of branch or era of service, are approximately twice as likely to die from Lou Gehrig’s Disease as those who have not served in the military. 

In order to support our nation’s military heroes in the fight against ALS, Congress and the DOD established the ALS Research Program (ALSRP) in FY 2007.  Unlike many other research programs, which focus on basic science, the ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist.  The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer reviewed.  While Congress has continued to appropriate funding for the ALSRP, including $7.5 million in FY 2014, the current funding level only will be able to support approximately 4 to 5 projects, yet over 100 are submitted to the program each year.  As a result, under the current level more than 95% of submitted projects will not receive funding.  Opportunities to discover and deliver a treatment to veterans will be lost, leaving them – and all people living with the disease – with no effective treatment option.   By appropriating $10 million for the ALSRP in FY 2015, Congress can continue this vital program and take steps to ensure that our nation continues to fight for our veterans just as they fought for us. 

Enact the MODDERN Cures Act (H.R. 3116)

Regulatory barriers and limited incentives to pursue innovation have hindered the development of new treatments and diagnostic tools for ALS and other diseases with unmet medical needs.  In fact, people with ALS will die in an average of just two to five years because an effective treatment does not exist and because diagnostics and biomarkers have not been identified that can speed diagnosis, improve care and expedite the discovery of new treatments.

The MODDERN Cures Act (Modernizing our Drug and Diagnostics Evaluation and Regulatory Network) would accelerate the search for a treatment for ALS and other diseases by removing the barriers that limit medical innovation and by providing incentives to develop new treatments and diagnostic tools that can improve, prolong and, ultimately, save lives.   Specifically the bill will: Encourage research on treatments, which have been set aside in the lab, but hold promise for treating diseases with unmet medical needs; remove barriers and provide incentives to develop new diagnostics; and ensure timely and appropriate reimbursement for new tests and treatments so that patients have access to the latest medical technology as soon as possible. 

 
 
 

 



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