Scene from the USA: The illogic of mandating screening without also providing for treatment

Abstract

It is axiomatic that newborn screening (NBS) should be a coordinated system in which practitioners, the laboratory, follow-up and treatment, families and administration all function in unison. Its success rests upon the weakest link (Buist and Tuerck 1992). In the USA, the weakest link is a lack of unified access to treatment. Each state decides what tests should be done and ensures that screening is performed. There is now reasonable agreement that NBS should be reimbursed by medical insurance. The same is not true for treatment, which is totally inconsistent between states. The actual screening is performed by a patchwork of state and private laboratories. At least 44 states use some form of expanded newborn screening; some report all the detectable disorders, while others are more selective, with a few only screening for MCADD. Bills to extend the scale and scope of NBS were presented in the last session of Congress, but were not passed. New bills (SB634 and HR1634) that are now in committee would require extension of, and a more uniform approach to, expanded NBS in all states, even if administrative or professional support is lacking. In these bills, there is no mention of the need to ensure treatment. So much for the concept that NBS should be a seamless system! There is no national consistency regarding insurance coverage of treatment, which is mandated by each state as it sees fit. Some states (notably Oregon, Montana, Hawaii and Kentucky; Schuett 2006) require insurance to cover Medical Foods for a wide range of metabolic disorders, even those not detected by NBS; in Oregon, this includes treatment for all IEMs and for all ages. Other states have less comprehensive laws, some specifying only PKU to age 18 years, and some appear to have no legislation regarding treatment at all! In the absence of legislation, insurance companies can dictate what treatments are covered. Their resistance to paying for Medical Foods has been a longstanding battle. This is no recent development; indeed, it was the proximate reason that Donough O_Brien started the Society for Inherited Metabolic Disorders (SIMD) in 1977. The situation has hardly improved since then. Over 50% of families report problems in obtaining the appropriate Medical Foods and/or in having them properly reimbursed. Approximately 1 in 3000 infants detected by expanded NBS requires dietary modification. This translates to some 25 000 people in the USA currently requiring Medical Foods. In our clinic, the average cost of such therapy is around USD5000 per year per person, which equates to ca. USD125 million per year for the whole country. In contrast, the cost of routine newborn screening of 4 million births is at least USD160–200 million per year and long-term custodial care costs are ca. USD60 000–90 000 per year per person. J Inherit Metab Dis (2007) 30:445–446 DOI 10.1007/s10545-007-9988-0

DOI: 10.1007/s10545-007-9988-0

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@article{Buist2007SceneFT, title={Scene from the USA: The illogic of mandating screening without also providing for treatment}, author={Neil R. M. Buist and Kathleen Huntington}, journal={Journal of Inherited Metabolic Disease}, year={2007}, volume={30}, pages={445-446} }