policy
When Newborn Screening Meets Policy:
Nebraska’s Path to Adding Disorders
by Nisha Quasba, associate specialist, Public Policy
Through its NewSTEPs agreement with
the Health Resources and Services
Administration (HRSA), APHL is assisting
state public health laboratories to add
three new disorders to their newborn
screening (NBS) panels. The disorders—
Pompe, Mucopolysaccharidosis
Type 1 (MPS-I), and X-linked
Adrenoleukodystrophy (X-ALD)—were
added to the Recommended Uniform
Screening Panel (RUSP) within the
past two years. At this time, only
Pennsylvania offers screening for all three
disorders universally, while New York
screens for Pompe and X-ALD and only
screens select populations for MPS-I.
APHL’s Public Policy team supports
this NewSTEPs initiative by identifying
political and organizational trends
between states, and potential education
gaps that may create barriers in
implementing these disorders within
a state. Using NewSTEPs’ four-phase
model for implementing a NBS disorder,
the team has focused on states in phase
one: the legislative/mandate stage. These
NBS programs require assistance to add
new conditions to the required list in the
state, including fee increases to support
capital and legislative mandates.
Each state determines which disorders
it will include on its NBS panel based on
its own evaluation. However, budgetary
restrictions, workforce shortages and
legislative mandates influence a state’s
capacity to implement these additions.
Nebraska, a phase 1 state, was one of the
first the Public Policy Team researched to
understand the legislative landscape.
Tracking Success in Nebraska
The Nebraska Newborn Screening
Advisory Committee (NBAC) advises the
state’s Newborn Screening and Genetics
Program on matters related to newborn
screening, disorders, inherited disease
and inborn errors of metabolism. The
NBAC meets quarterly and any member
is able to request a review to add or
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APHL’s Public Policy program provides assistance by identifying political and
organizational trends between states and potential education gaps that may
create barriers in implementing disorders within a state.
remove a disease from the newborn
screening panel. Once a recommendation
is approved by a simple majority of
the committee, Program Manager Julie
Luedtke carries the recommendation
forward within the health department.
The director of the Division of Public
Health/Chief Medical Officer and the CEO
have final approval. The CEO also has
final approval on any decision affecting
health department personnel or funding.
In 2016, NBAC recommended that Pompe,
MPS-1, and X-ALD be added to the NBS
panel, but only if follow-up services could
be expanded to uphold the quality of
the program. Luedtke had persistently
requested additional funding so the
program could absorb the increase in
follow-up and quality assurance work
that would be needed from any new
additions to the panel. The program
requested the per-infant-administrative
fee for screening to be increased from $10
to $20 via a legislative bill in July 2016;
however, the increase was not granted.
In January 2017, LB91 and LB401 were
introduced to the floor by Senator
Robert Hilkemann, a Republican state
legislator and previous board member
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of the Nebraska State Board of Health.
LB401 included the addition of X-ALD,
MPS-1 and Pompe to the NBS panel and
LB91 allowed the NBS fee to increase but
not exceed $20. On April 27, 2017, the
Governor approved and signed both bills.
Luedtke attributes the success of the bill
to external support from advocates and
legislators. Senator Hilkemann’s office
was instrumental in determining what
resources were needed to successfully
add the conditions. Not only did they
increase the funding available to the
program, they also included language
to delay implementation so proper
preparation could take place. A third
staff member was hired to do follow-up
and quality assurance activities,
allowing the program to absorb the
addition of the three new conditions.
While the act becomes effective
July 1, 2018, in the interim the NBS
program will be formulating a series
of new educational materials, devising
reporting mechanisms and language,
establishing proper follow-up protocols,
and educating hospitals and providers
of the implications of this addition. n
Fall 2017 LAB MATTERS
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