newborn screening & medical foods policy overview fatty oxidation disorders/organic acidemia...
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Newborn Screening & Medical Foods Policy Overview
Fatty Oxidation Disorders/Organic Acidemia
Association Annual Conference
July 26, 2014
Melanie LockhartDirector, 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 Provisions5 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:
– 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)
