Newborn Screening &
Medical Foods
Policy Overview
Fatty Oxidation Disorders/Organic
Acidemia Association
Annual Conference
July 26, 2014
Melanie Lockhart
Director, State Affairs
Office of Government Affairs
1
The March of Dimes mission is to
improve the health of babies by
preventing birth defects, premature
birth and infant mortality.
March of Dimes & Newborn Screening
• March of Dimes funded research
• Nationwide campaign for all states
to adopt the RUSP
Policy
• Documented medical benefit
• Reliable screening test
• Early detection
March of Dimes & Newborn Screening
2004
2008
Newborn Screening Policies
• Proliferation of tests led to a
state-by-state patchwork
• Policies designed to promote more
uniformity
• Children’s Health Act
• Creation of the Secretary’s
Advisory Committee on
Heritable Disorders
• Creation of the Recommended
Uniform Screening Panel (RUSP)
• Newborn Screening Saves Lives
Act of 2008
Newborn Screening Saves Lives
Reauthorization Act
• The Newborn Screening Saves
Lives Act is due for its 5-year
renewal this year.
• S. 1417 introduced by
Senators Kay Hagan (D-NC)
and Orrin Hatch (R-UT).
Passed Senate on January
29, 2014!
• H.R. 1281 introduced by
Representatives Lucille
Roybal-Allard (D-CA) and Mike
Simpson (R-ID). Passed the
House on June 24, 2014!
The NBSSLRA: Key Bill Provisions
5 Key Provisions:
• #1 – Reauthorizes the
Secretary’s Advisory
Committee on Heritable
Disorders.
• #2 – Renews grants to
states to expand and
improve their screening
programs.
• #3 – Supports consumer and
provider education.
• #4 – Reauthorizes the
Centers for Disease Control
and Prevention (CDC)
Newborn Screening Quality
Assurance Program
(NSQAP).
• #5 – Maintains the Hunter
Kelly Newborn Screening
program for research.
Medical Foods Equity Act of 2013
(H.R. 3665)
Sponsored by Representative John Delaney (D-MD)
Introduced December 5, 2013
Referred to House Subcommittee on Military Personnel
• Requires federal health programs (including Medicaid &
CHIP)to cover the cost of medical foods for all inborn
errors of metabolism.
• Based on the recommendations of the HHS Secretary’s
Advisory Committee on Heritable Disorders in Newborns
and Children.
• Secretary of HHS would determine the yearly coverage
amounts.
• Medical Foods not addressed by the ACA
Affordable Care Act
ACA requires most insurance companies to follow
new rules that help protect children with special
health needs and their families:
• Not allowed to set annual limits & lifetime
limits on certain benefits.
• Must cover preventative services at no cost.

Exception for grandfathered plans who may cover
with a co-pay.
Affordable Care Act
& Newborn Screening
• Requires health plans cover
screening as preventive care for
all conditions on RUSP (cost
sharing with some plans)
• 1 year from when condition is
added to RUSP for compliance
• RUSP condition may need to be
required on state NBS panel for
automatic screening (varies by
state)
• Screen on request if not yet
required
• Medicaid & CHIP – guided by AAP
Bright Futures
Affordable Care Act &
Essential Health Benefits
•
Beginning in 2014, health plans
offered in the individual & small
group markets, inside & outside
of the Exchange, must include
‘essential health benefits’ (EHB)
covering the following 10
categories through a benchmark
plan:
–
–
–
–
–
–
–
–
–
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1.Ambulatory patient services
2.Emergency services
3.Hospitalization
4.Maternity and newborn care
5.Mental health/substance use
6. Prescription drugs
7. Rehabilitative & habilitative services/devices
8. Laboratory services
9. Preventive and wellness services & chronic
disease management
10. Pediatric services, including oral and vision
care
Affordable Care Act
& Marketplace (Health Exchanges)
•
Coverage began on January 1, 2014 (enrollment
October 2013 – March 2014)
‐
‐
Next open enrollment is October – December 2014
Birth or adoption of child – qualifying life event
•
Each state has its own exchange with different
benefits (state, federal and partnership)
•
Medical foods are covered in 39 states that have
insurance mandates (in place prior to ACA) but
may differ from state to state.
Medicaid & Children’s Health
Insurance Program (CHIP)
Public health insurance programs no or low cost coverage.
• Medicaid provides comprehensive & medically
necessary services under Early, Periodic Screening,
Diagnosis and Treatment (EPSDT)
– In 2014, easier to qualify due to Medicaid expansion with an
income less than 138% FPF. (Only ½ states expanding)
– Maintenance of Effort as of 3/23/10 for states not expanding
• CHIP provides comprehensive benefits guided by AAP
(MOE also applies)
Other public programs which provide assistance:
• Women, Infants and Children (WIC)
• Children with Special Health Care Needs (CSHCN)
Thank you!
Melanie Lockhart
mlockhart@marchofdimes.com
202-659-1800