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U.S. Legislative Update for Neuromuscular Diseases

Recently, important legislation affecting the neuromuscular disease community in the U.S. was passed by the U.S. House and Senate, and signed into law by the President. As members of this community, it is important to remain informed about this legislation and to act in support of any legislation that is important to you by contacting your legislators. The Muscular Dystrophy Association’s (MDA’s) website Advocacy pages have important information regarding pending legislation and how to contact your legislators.

Recently passed legislation of concern to the neuromuscular disease community includes:

-- The MD CARE Reauthorization Act (Paul D. Wellstone Muscular Dystrophy Community Assistance Research and Education Amendments Act; S. 315/H.R.594) was passed into law in by the House in July, 2014, and the Senate in September, 2014. It was then signed into law by President Obama in September, 2014. This Act amended the MD-CARE Act, first passed in 2001 and reauthorized in 2008. The MD CARE Reauthorization Act increases availability of funding for clinical research, improving health care and resources for adults living with muscular dystrophy.

-- The Achieving a Better Life Experience (ABLE) Act (H.R. 647/S.313) passed in the U.S. House and Senate in December of 2014. It was then signed into law by President Obama on December 19, 2014. This Act was advocated for by the Muscular Dystrophy Association (MDA) and other organizations advocated for the rights of individuals with disability. The ABLE Act will improve the ability of those with disabilities and their family members to save money for future expense related to disabling conditions. Families will be able to create tax-deferred savings accounts, improving the ability to plan for the future. Prior to the passage of this ACT, there was a cap of $2000.00 in savings for individuals with disability before risking losing government disability benefits.

-- The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) was proposed in 2013 in the U.S. Senate and Congress. Passed by the House in 2013 and Senate in 2014, and signed into law by President Obama in December, 2014, this Act reauthorizes federal programs to continue to support state newborn screening programs.

--The Affordable Care Act ACA was passed in 2013. The full effect of the ACA on the neuromuscular diseases community remains to be seen. Health insurance provided through the ACA does eliminate exclusions for previously diagnosed conditions and lifetime coverage caps, which should benefit individuals with neuromuscular disease. Enrollment, coverage, and benefits information can be obtained at https://www.healthcare.gov/ .

Resources:

HealthCare.gov, (n.d.. Individuals and Families. Retrieved from https://www.healthcare.gov/ on 1/2/15.

MDA, (2014). Affordable Care Act (ADA). Retrieved from http://mda.org/services/affordable-care-act on 1/2/15.

MDA, (2014). Advocacy. Retrieved from http://mda.org/advocacy on 1/2/15.

MDA, (2014). MDA-Endorsed ABLE Act Passes. Retrieved from http://mda.org/media/press-releases/mda-endorsed-able-act-passes on 1/2/15.

MDA, (2014). MD CARE Act Update (2014). Retrieved from http://mda.org/advocacy/md_care_act on 1/2/15.

Reijonen, J., (2013). Legislative Advocacy and Neuromuscular Disease. Retrieved from http://www.bellaonline.com/articles/art180080.asp on 1/2/15.

Reijonen, J., (2013). Newborn Screening and Neuromuscular Diseases. Retrieved from http://www.bellaonline.com/articles/art180851.asp on 1/2/15.




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