We are dedicated to empowering the MSUD community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures for MSUD.
These three pieces of proposed legislation are now before Congress and need your support and action to provide for better outcomes for MSUD patients, their families, and the rest of the MSUD community. To help you explain the need for these pieces of legislation, here are some key points to make when discussing the legislation with your federal, state, and local representatives.
The Newborn Screening Saves Lives Reauthorization Act, H.R. 482/S. 350 was introduced in the Senate by Senators Wicker and Hassan on February 19th, 2021. The Newborn Screening Saves Lives Reauthorization Act would continue critical federal programs that aid states to improve and expand their newborn screening programs, support parent and provider education, and ensure laboratory quality and surveillance for newborn screening. Authorizations for these programs expired in 2019.
Medical Nutrition Equity Act
The Medical Nutrition Equity Act, also known as MNEA, is legislation to be reintroduced in Congress in 2021. MNEA would provide public and private insurance coverage for medically necessary foods (including vitamins) for digestive and inherited metabolic disorders.
- Digestive conditions include: inflammatory bowel disease (e.g. Crohn’s disease and ulcerative colitis), eosinophilic digestive disorders, food protein induced enterocolitis syndrome (FPIES), IgE mediated food allergies, and malabsorption due to liver or pancreatic dysfunction, or short bowel syndrome.
- Inherited metabolic disorders include: metabolic disorders on the Recommended Uniform Screening Panel Core Conditions list of the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children; and other genetic metabolic disorders requiring special foods medically necessary foods would be covered under Medicaid, CHIP, Medicare, FEHBP, and private insurance if they are prescribed by the patient’s provider.
Speeding Therapy Access Today (STAT) Act of 2021
The Speeding Therapy Access Today (STAT) Act of 2021, H.R. 1730 / S. 670 was officially introduced In March, 2021.
This bipartisan legislation is a result of more than a year of collaborative effort by rare disease community partners and congressional leaders, working to identify opportunities to ensure that all rare disease communities receive access to safe and effective treatments and cures at the earliest moment possible.
The STAT Act establishes a Rare Disease Center of Excellence at the FDA that will improve the development of and access to therapies for the rare disease community by:
- Optimizing interagency coordination of rare disease expertise.
- Advancing science based regulatory policies.
- Targeting development for ultra-rare diseases, and
- Ensuring the intended patient populations ultimately receive access to approved therapies.