Policy Resolution HHS-19-45

WHEREAS, newborn screening panels effectively detect many disorders in children at an early age that would not otherwise be diagnosed;

WHEREAS, the effects of these disorders can be reduced or eliminated through early therapeutic interventions;

WHEREAS, states have discretion as to which disorders to include in their newborn screening panels;

WHEREAS, the Advisory Committee on Heritable Disorders in Newborns and Children uses its expertise and resources to create a Recommended Uniform Screening Panel (RUSP) which details 35 disorders that ought to be included in newborn screening panels;

WHEREAS, only two states currently test for all 35 disorders in the RUSP;

WHEREAS, expansion of universal newborn screening panels in states helps reduce health disparities based on income, location, education, and race or ethnicity; and

WHEREAS, in 48 states a child may be born today with a disorder that could be diagnosed and treated, but often is allowed to linger today due to state inaction.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL), urges all states to expand statewide screening of newborns to include screening for any disorder currently listed in the RUSP as soon as practicable, but no later than 2020;

BE IT FURTHER RESOLVED, that the NBCSL urges all states to expand statewide screening of newborns to include screening for any disorder that is detectable in blood samples as soon as practicable, but no later than two years after the disease is adopted by the federal RUSP;

BE IT FURTHER RESOLVED, that the NBCSL urges all states to add, as soon as practicable, to their newborn screening panels any disorders that are detectable in blood samples which have high mortality rates or gravely affect one’s quality of life and can be treated or cured when caught shortly after birth; and

BE IT FINALLY RESOLVED, that a copy of this resolution be transmitted to the President of the United States, the Vice- President of the United States, members of the U.S. Congress, and other federal and state officials as appropriate.

• SPONSOR(S): Representative Gregory Porter (IN) and Representative Calvin Smyre (GA)
• Committee of Jurisdiction: Health and Human Services Policy Committee
• Certified by Committee Chair(s): Representative John King (SC) and Representative Toni Rose (TX)
• Ratified in Plenary Session: Ratification Date is November 30, 2018
• Ratification is certified by: Representative Gregory W. Porter (IN), President