POLICY INTIATIVES

Newborn Screenings Saves Lives Reauthorization Act, S. 350 / H.R. 482

Newborn screening allows for early detection of rare genetic conditions at birth. The Newborn Screening Saves Lives Act governs newborn screening at the federal level. Legal statutes and administrative regulations allow for each state to determine how their newborn screening program is run. This Act reauthorizes existing federal programs that:

  • assist states in improving and expanding programs
  • support parent and provider education
  • ensure laboratory quality and effective surveillance
  • facilitate adding of conditions to the Recommended Uniform Screening Panel (RUSP)

The current authorization expired September 30, 2019.


Medicaid Expansion

Medicaid expansion would give more low-income adults access to health care services, resulting in improved health outcomes.  In addition, Medicaid expansion would reduce the health coverage gap for individuals living below poverty level and reduce the cost of uncompensated care for emergency room use by individuals without health insurance. Medicaid expansion would increase state economic growth by creating new health care sector jobs to treat the influx of newly enrolled Medicaid beneficiaries. 

Incentivizing Medicaid Expansion Act

This bill provides the enhanced federal medical assistance percentage (FMAP) to every state that expands Medicaid coverage for individuals who are newly eligible under the Patient Protection and Affordable Care Act, regardless of when such expansion takes place. The bill applies retroactively.


STAT (Speeding Therapy Access Today) Act, H.R. 1730/S. 670

The STAT Act is a bipartisan, bicameral, community-led bill aimed at improving the development of and access to therapies for the rare disease community. The goal is to enact targeted policy reforms at the Food and Drug Administration (FDA) to accelerate development of therapies while also facilitating patient access to those therapies.

The STAT Act will:

  • Accelerate rare disease therapy development
  • Optimize interagency coordination
  • Advance science-based regulatory policies
  • Facilitate access to therapies

Learn more www.statact.org.


The National Economic Burden of Rare Disease Study

The EveryLife Foundation of Rare Diseases conducted The National Economic Burden of Rare Disease Study providing the most comprehensive assessment of the total economic burden of rare diseases (RDs) in a single year. Through this research, the estimated economic cost of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019. To generate the data for this study, EveryLife identified both direct medical costs, via an analysis of claims data, and indirect and non-medical costs, via a survey (The Rare Disease Impact Survey) of 1,399 members of the rare disease community.

The study identifies an urgent need to fund research, enhance awareness, and improve access to diagnoses, care, and treatment of rare disease. Congressional support of rare disease appropriations priorities would advance critical rare disease research and therapy development at the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration.

Source: Cover Alabama. www.coveralabama.org | EveryLife Foundation for Rare Diseases. www.everylifefoundation.org