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Dear Chairman Blunt and Ranking Member Murray:
The undersigned organizations committed to the health of our nation’s mothers, infants, children, and
families thank you for your strong support of federal newborn screening programs in the Consolidated
Appropriations Act, 2018 (PL 115-141). The additional funding provided to the Centers for Disease
Control and Prevention’s (CDC) Newborn Screening Quality Assurance Program (NSQAP) and the Health
Resources and Services Administration’s (HRSA) Heritable Disorders program will ensure states have the
resources and technical expertise to support ongoing activities and implement new conditions to their
state newborn screening panels. As you begin to craft the fiscal year (FY) 2019 Labor, Health and Human
Services, Education, and Related Agencies (LHHS) appropriations bill, we urge you to again prioritize
funding for programs at CDC and HRSA that provide critical support to state newborn screening
programs.
Newborn screening is one of our nation’s most successful public health programs. Each year, nearly
every one of the approximately 4 million infants born in the United States is screened for certain
genetic, metabolic, hormonal and/or functional conditions. If left untreated, these conditions can cause
disability, developmental delay, serious illness, and even death. The early detection afforded by
newborn screening ensures that infants who test positive for a screened condition receive prompt
treatment, saving or improving the lives of more than 12,000 infants each year.
Programs at CDC and HRSA make critical contributions to state newborn screening programs. The CDC’s
NSQAP performs quality testing for more than 500 laboratories to ensure the accuracy of newborn
screening tests in the United States and around the world. Further, the CDC helps states implement new
screening tests and works with partners to develop new tests for specific disorders. HRSA’s Heritable
Disorders Program provides assistance to states to improve and expand their newborn screening
programs and to promote parent and provider education. HRSA also supports the work of the Advisory
Committee on Heritable Disorders in Newborns and Children, which provides states with a
Recommended Uniform Screening Panel (RUSP) to help ensure every infant is screened for conditions
that have a recognized treatment.
CDC and HRSA activities have significantly improved the quality of newborn screening programs
throughout the country. In 2007, prior to the passage of the Newborn Screening Saves Lives Act, only 10
states and the District of Columbia required infants to be screened for all 29 disorders that were
recommended at that time. Today, 41 states and Puerto Rico require screening for at least 31 of the 34
core conditions on the RUSP.
Unfortunately, current federal funding for newborn screening programs at CDC and HRSA falls short of
the level needed to help state newborn screening programs operate optimally. With three new
conditions added to the RUSP in the past two years and more expected in the near future, it is vitally
important to maintain robust funding to support state efforts to add the new conditions to their
newborn screening panels. Further, rapid changes in screening technologies and the addition of more
complex disorders to the RUSP escalate the need for additional federal support. To confront these
challenges, the federal government must increase its investment in newborn screening programs.
- NSQAP: State laboratories need enhanced financial and technical assistance to support the
development and evaluation of testing methods for new conditions, to expand the use of CDC's
quality assurance materials, and to update critical infrastructure. NSQAP would need $15 million
to meet this need, in addition to sustained support for ongoing program activities. If budget
constraints prohibit Congress from allocating the $15 million required, we urge the Committee
to make an initial investment by appropriating at least an additional $6 million for NSQAP in
FY 2019, for a total of $20.65 million.
- Heritable Disorders: The federal government should expand its efforts to support the addition of
new conditions to state newborn screening panels. Beginning in FY 2015, Congress provided an
additional $2 million annually to support the wider implementation, education and awareness
of newborn screening for a single disorder, SCID. 46 states now universally screen infants for
severe combined immunodeficiency (SCID). We urge Congress to provide HRSA with an
additional $6 million to build on that successful program by supporting states with
implementation, education and awareness of newborn for new conditions recently added to the
RUSP, including Pompe disease, Mucopolysaccharidosis I (MPS I), and X-linked
adrenoleukodystrophy (X-ALD). This would bring the total amount allocated to the Heritable
Disorders program in FY 2019 to $21.9 million.
We thank you for your attention to our request and look forward to working with you to ensure that the
United States identifies and treats each of the one in 300 infants born every year who has a condition
that can be detected through newborn screening. If you have questions, please contact Rebecca Abbott,
Deputy Director of Federal Affairs at the March of Dimes, at [email protected] or
202.292.2750.
Sincerely,
1,000 Days
Academy of Nutrition and Dietetics
American Academy of Allergy, Asthma & Immunology
American Academy of Pediatrics
American Association for Clinical Chemistry
American Association on Health and Disability
American College of Obstetricians and Gynecologists
American Public Health Association
Association of Maternal & Child Health Programs
Association of Women's Health, Obstetric and Neonatal Nurses
Colorado School Medicaid Consortium
Cure SMA
Cystic Fibrosis Foundation
First Focus