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The President’s Proposed FY 2013 Budget: What is the Impact on Newborn Screening?

  • Following the footsteps of news media outlets, we are tapping into the President’s proposed budget for Fiscal Year (FY) 2013. For those who are unfamiliar with the government’s calendar, the fiscal year actually begins on October 1st, 2012. Given the challenging budget climate, newborn screening programs have fared well, and rightfully so given their track record, as outlined within the Congressional Justification sections of the budget proposal. (  Pg 225) However, this proposed budget will not be the one signed into law. It will just serve as a template for funding this year. The next step is for Congress to debate, modify, and pass the budget before the President signs it into law. Nevertheless, this proposal clearly demonstrates the administration’s funding priorities, and newborn screening programs are definitely part of the equation again this year!

    Let us consider the proposed FY 2013 budget for newborn screening programs under the Maternal and Child Health Bureau (MCHB). The funding for Heritable Disorders programs would remain at the same level as FY 2012, which is $9,834,000. Funding for the Clearinghouse (Baby’s First Test) is authorized through the Newborn Screening Saves Lives Act (H.R. 3825, S. 1858  The funding level is expected to remain the same. In justifying the costs to Congress, the Department of Health and Human Services identified three purposes of Baby’s First Test, the nation’s clearinghouse on newborn screening education:

    1.) Increases awareness, knowledge, and understanding of all stakeholders, including industry representatives and the broader public

    2.) Increases awareness, knowledge, and understanding of NBS services and diseases that are screened, and

    3.) Links the National Newborn Screening Information System’s public site, which contains newborn screening performance data based on quality indicators.

    In addition, the budget also calls for the continual funding of the Secretary Advisory Committee on Heritable Disorders in Newborn and Children (SACHDNC). As noted within the budget proposal, a cut in the funding would have prevented the committee from fulfilling its legislative mandates. Recall that some of the mandates include establishing methods for measuring the quality of newborn screening programs as well as harmonizing newborn screening standards across all states. SACDHNC would not be able to accomplish these mandates with a reduction in its budget. The funding for both the Regional Genetic & Newborn Screening Services Collaborative and Critical Congenital Heart Disease (CCHD) programs would also continue. The continual funding of CCHD programs at state and local public health laboratories is especially crucial as these laboratories are seeking to incorporate or enhance CCHD screening.  Agencies receiving funding would also be able to develop CCHD education materials for parents and health professionals and establish a health IT system to coordinate CCHD treatment. Under the President’s budget, the number of grant awards would remain at 13, with the average award being $612,000.

    The funding for the James T. Walsh Universal Newborn Hearing Screening program, which is also under MCHB, would be held at the same level as FY 2012  ($18,660,000). This funding request is certainly justifiable given the program’s proven track record. It was originally started in FY 2000. By 2005, 95% of newborns were screened prior to hospital discharge. In 2009, the rate was 97%. For FY 2013, the target goal is 98%, which is the same as FY 2012.

    Overall, MCHB would receive an increase of $46,452,000 in its budget compared to FY 2012. The majority of the programs within this Bureau (i.e. Heritable Disorders) would remain at the same level, as mentioned above. The main contributor to the increase in MCHB funding is the Maternal, Infant and Early Childhood Visiting Program. In conclusion, the funding of newborn screening programs within MCHB will remain at their current levels. We are appreciative of the fact that administrators are committed to ensuring the continuation of these successful programs. Hopefully Congress will also come to the same conclusion when they vote for this proposed budget.

    To read the proposed FY 2013 budget, please visit

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