Below is the text of a document I created and have been distributing to legislators to explain (as simply as possible) the way that Newborn Screening works in Pennsylvania currently and what we are seeking to change with our bills. To view the PDF version of this document, click here.

I wanted to make this findable for anyone who may be trying to figure all of this out because it’s incredibly complicated. This is the result of four years of learning and I want others to benefit.

The Current State of Newborn Screening in Pennsylvania

Newborn Screening is a vitally important program and it saves the lives of over 1,300 innocent babies born with treatable genetic and metabolic diseases each year in Pennsylvania. 

However, it is also in need of improvement and reform, and that’s why your support of HB 730 and SB 983 is imperative.

The following pages provide an overview of the pertinent information:

What is Newborn Screening?

After a baby is born, a simple heel-prick test is performed 24-48 hours after birth. The blood is put onto filter paper which is then sent to a lab where the blood is tested for treatable/curable genetic and metabolic diseases that would otherwise be fatal if undetected. Each state screens for a different number of diseases, and most states follow the Recommended Uniform Screening Panel on a federal level.

Newborn Screening in Pennsylvania

Currently, Pennsylvania has two tiers of testing: a mandatory panel of ten diseases, and a supplemental panel of twenty-eight. The cost of the mandatory panel is covered by the Department of Health budget, while the cost of the supplemental panel is paid by the birthing facility. Most hospitals include the cost of the supplemental screening in their bundled birth cost, which is then submitted to insurance. 

The primary problem with this system is that not all hospitals screen for everything on the supplemental list. This means that screening is not being done equally, and some babies are given a greater chance at life than others. 

Because of the current funding structure, the DOH is unable to add new treatable diseases. This is why Act 148 of 2014 has not yet been fully implemented. 

Current cost for mandatory panel (paid by DOH): $52.44

Current cost for supplemental panel (part of birthing costs): $32.80 – $52.80

Current cost if Act 148 diseases were part of screening: $105.24

How HB 730/SB 983 will improve the current system:

HB 730/SB 983 will do the following:

• The mandatory and supplemental panels will be merged, creating ONE panel.
  • This will ensure that every newborn is screened EQUALLY in Pennsylvania and has the same chance at a healthy life.

• A fee will be instituted ($142 per newborn) to ensure that state funding is never the reason why treatable diseases cannot be added to Pennsylvania’s panel. Forty-seven states have a NBS fee, so this is a common practice.
  • This fee will reduce the demand on the state budget.
  • The NBS fee will be included as part of the submitter’s (birthing hospitals, certified-nurse midwives, direct-entry midwives and health care practitioners) birthing fee, which is recouped by the submitter via claims through private insurance, Medicaid, or self-pay.
    • Federal law mandates the coverage of diseases on the RUSP so this is not a new concept, and insurance already covers the NBS for most births.
  • Additional funds were figured into the $142 fee so that treatable diseases can be added to the NBS panel in the future.
    

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Newborn Screening Rankings by State:

All data from babysfirsttest.org

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I hope this has clarified things a little – please ask any questions you may have in the comments.

Pennsylvania residents: please take a moment and contact your state legislators – this link makes it easy!