Although we know a lot about the role of proper nutrition, exercise and general health in having a healthy baby, occasionally a baby is born with a special health condition or a birth defect. Our Newborn Screening Program tests babies for 29 special health conditions including hearing loss. These conditions, like phenylketonuria (PKU), can be managed by medication, diet or therapies making it possible for children to grow up and live a full life. When these conditions aren’t discovered right away outcomes aren’t very good. A child with a special health condition has several resources available to them and their family.
The Arizona Early Intervention Program provides services to children from birth to age 3, who are at risk for a developmental delay. The Children’s Rehabilitative Services Program serves children with some of the most serious health conditions who are enrolled in AHCCCS. Arizona’s Long Term Care System provides care to children and adults with a physical or developmental disability who need the type of daily care a nurse might provide. Our Office for Children with Special Health Care Needs (OCSHCN) became part of the Bureau of Women’s & Children’s Health on January 1. OCSHCN continues working to improve systems of care, provide information and referral to families who would like assistance in finding the services available to their child, and supports telehealth to provide services and training to families and professionals in remote areas of the state. OCSHCN has many training resources for providers as well as families. You can find OCSHCN on our website, call 602.542.1860 or send an email to [email protected]<mailto:[email protected]> for more information.
Secretary Sebelius, the March of Dimes, and the ACMG now recommend 30 newborn screening tests. The test for SCID and other T-cell deficiencies has been added to the list. Will Arizona stay current with the recommendations?
Barb-
We have followed the progress of SCID through the ACMG process with great interest. The ability to identify this disorder in time to offer life-saving treatment would be of tremendous benefit to affected children, their families and society as a whole. However, the cost to add SCID to our panel would be significant and would require the legislature to increase our program fees, an option that is likely politically infeasible given Arizona’s current budget climate. Although it is well-established that the costs for screening for these disorders pay for themselves many times over in savings to the healthcare and educational systems, it is almost impossible to integrate these external savings into annual program operating budgets within ADHS. Additionally, the NBS program is itself facing a budget shortfall large enough to force the consideration of actually cutting one or two existing tests in order to maintain adequate testing and follow-up services for the remaining (or else risk losing the program entirely). As a result, we are regrettably unable to consider adding SCID at this time. Should circumstances change, however, we would enthusiastically support such an addition.
Thanks