Newborn Screening in Texas

1
Newborn Screening in Texas

• Jann Melton-Kissel
• Susan U. Neill

2
Newborn Screening (NBS)

• Screen for congenital and heritable disorders
• These disorders may cause severe mental
  retardation, illness, or death if not treated
  early in life
• If treated, infants may live relatively normal
  lives
• Results in savings in medical costs over time

3
Newborn Screening (NBS)

• Identification is a two-step process
• Laboratory analyzes blood specimens from infants
  - If a result is positive, laboratory staff
  notifies case management staff
• Case management provides follow-up to assist
  families in linking with appropriate providers

4
Current NBS Program in Texas

• 375,000 births a year
• 750,000 specimens a year
• 3.5 million test results reported
• Follow-up on over 10,000 abnormal screens a year
• Approx. 400 diagnosed cases per year

5
Current NBS Legislation Rules

• Requires screening on five disorders
• Phenylketonuria
• Galactose-1-phosphate uridyltransferase
  deficiency
• Sickling hemoglobinopathies, including sickle
  cell disease
• Congenital adrenal hyperplasia
• Hypothyroidism

6
Current NBS Legislation Rules

• Requires two screening tests on each newborn
• Allows for billing of newborn screening
• Establishes maximum fees

7
Current NBS Funding Sources

• Medicaid
• Fee Revenue from Providers
• Title V

8
History of NBS Fees

• November 1997
• Report from the Laboratory Finance Task Force
• Adopt new public health services fees
• Include non-Medicaid eligible and non-charity
  care newborns
• February 1998
• Final Rules approved by Board of Health included
  maximum fee of 20.00
• March 1998
• Fee of 13.75 effective
• April 2002
• Fee increased to 19.50 due to new technology
• August 2003
• Board of Health approved revising the maximum fee
  to 38.00
• Current fee still 19.50

9
NBS Laboratory Responsibilities

• Supply NBS collection cards
• Receive and review each specimen for acceptable
  quality
• Accession specimen into laboratory information
  system
• Perform laboratory testing reviewing each test
  for quality parameters
• Repeat testing on suspect specimens

10
NBS Laboratory Responsibilities

• Notify case management immediately of any panic
  level values
• Notify case management after confirmation of any
  marginal positive values
• Provide written reports to submitter
• Provide confirmatory and monitoring testing when
  requested

11
NBS Case Management Goals

• Each baby born in Texas receives two newborn
  screening tests.
• All infants with an abnormal screen receive
  prompt and appropriate confirmatory testing.
• All infants diagnosed with newborn screening
  disorders are maintained on appropriate medical
  therapy.

12
Responsibilities of NBS Case Management

• Link families of infants with abnormal screens
  with appropriate health care providers.
• Track infants with abnormal screens and ensure
  further studies are done.
• Ensure confirmed cases receive medical care.
• Serve as a source of information about newborn
  screening disorders to clinicians, parents the
  public.
• Maintain client rosters for diagnosed disorders.

13
NBS Case Management Protocols

• Three consultant committees review protocols
• Metabolic Specialists
• Hematologists
• Endocrinologists

14
National Newborn Screening and Genetics Resource
Center (NNSGRC)

• Under contract with Health Resources Services
  Administration (HRSA)
• Provide information resources in the area of
  newborn screening and genetics to benefit health
  professionals, the public health community,
  consumers, government officials.
• Provide technical assistance reviews of states
  newborn screening programs.

15
NNSGRC Consultative Review

• Review of Texas NBS Program (February 28 through
  March 2, 2005)
• Team comprised of 9 professionals from across the
  country who are instrumental in newborn screening
  programs
• Conducted meetings with stakeholders in Austin,
  Dallas, Houston, and San Antonio

16
NNSGRC Identified Issues

• Funding
• Stakeholder Involvement
• Screening
• Follow-up
• Diagnosis/Treatment and Management
• Evaluation
• Education
• Management

17
Newborn Screening Exceptional Item Appropriation

•      
• Personnel
• 7 Laboratory Staff
• 2 Case Management Staff

18
NBS Expansion

• 79th Legislature created requirement to expand
  NBS.
• Working with stakeholders to explore expansion.