113th Congress (Current Legislation)
The MDA Advocacy department continues to strive to be an effective voice for the hundreds of thousands of Americans whom we serve. As legislation relevant to our neuromuscular community is introduced throughout the 113th Congress, we will provide detailed overviews of the issues, as well as helpful tools to take action.
The Affordable Care Act (ACA)
The Affordable Care Act (ACA) will offer reasonably priced health care coverage to millions of Americans who are currently uninsured.
Each state has a Health Insurance Marketplace where you can compare health insurance options to meet your needs, and obtain important information before formally applying and enrolling in a health insurance plan.
Newborn Screening Saves Lives Reauthorization Act (H.R. 1281 / S. 1417)
The Newborn Screening Save Lives Reauthorization Act reauthorizes critical federal programs that provide assistance to states to improve and expand their newborn screening programs; support parent and provider education; and ensure laboratory quality and surveillance for newborn screening. Muscle diseases within MDA’s program for which newborn screening pilot programs are currently underway or under consideration include Duchenne muscular dystrophy, Pompe disease, and Spinal Muscular Atrophy.
This critical legislation also reauthorizes the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, which provides states with a Recommended Uniform Screening Panel to help ensure every infant is screened for conditions which have a known treatment.
The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Amendments Act of 2013 (H.R. 594/S. 315)
The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Amendments of 2013 amends the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH). It also seeks to expand the forms of muscular dystrophy included within the program.
In passing the MD CARE Act, the legislative intent is to provide government funding for research and development of clinical care; expedite the evaluation and approval of emerging therapies; and create a national registry to allow tracking of the disease.
Read more about the MD CARE Act, and take action today!
Achieving a Better Life Experience (ABLE) Act of 2013 (H.R. 647 and S. 313)
The ABLE Act amends section 529 of the Internal Revenue Code of 1986 to provide for the establishment of “ABLE accounts” for the care of family members with disabilities. ABLE accounts encourage and assist individuals and families in saving private funds that can be used to support the health, independence and quality of life of the person living with a disability.
In creating ABLE accounts, the legislative intent is to provide secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities. These funds supplement — but do not supplant — benefits provided through private insurances, Medicaid, Supplemental Security Income (SSI), the beneficiary's employer and other resources.
Read more about the ABLE Act of 2013, and take action today!