Newborn screening is important to early diagnosis and intervention. With some conditions, every second counts. Catching a rare disease as soon as a child is born could lead to much better outcomes, as it allows for immediate treatment. Fortunately, states are moving to increase newborn screening. According to the EveryLife Foundation, Ohio and Arizona have just passed screening laws.

Newborn Screening Laws

Now that Ohio and Arizona have passed newborn screening laws, there are a total of five states that have similar legislation (Florida, California, and Georgia are the others). Referred to as RUSP alignment legislation, these laws mandate a timeline for newborn screening, supply resources so the screening can take place, and expand the list of diseases screened for to include all of those on the federal Recommended Uniform Screening Panel (RUSP).

In Arizona, the EveryLife Foundation, alongside the AZBIO, Cure SMA, and March of Dimes, teamed up with the original sponsor, Senator Tyler Pace, to support the bill (HB110). Due to the strong support for the laws, they were passed during the state’s budget process.

The same occurred in Ohio, again, due to massive support. Here, the bill was sponsored by Representatives Tim Ginter and Allison Russo. The EveryLife Foundation supported this bill (SB1824) as well, as did over 50 other advocacy organizations. However, language was added to the bill right before it was passed that provides an exception to the screening. It is important to pay attention to this addition and realize its potential impact on the rare disease community and newborn screening.

Even with this new language, both bills are huge steps in the right direction for newborn screening. Now, babies born in these states will be given a better chance at life. You can find out more about how to support screening here.

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