Today, the EveryLife Foundation for Rare Diseases applauded the signing of newborn screening laws in Ohio and Arizona that will help save the lives of hundreds of babies born in these states each year. The laws, referred to as RUSP alignment legislation, require the states to screen newborn babies for any disorder on the federal Recommended Uniform Screening Panel (or RUSP), implements a timeline in which the screening must begin, and ensures that resources will be available to fund all conditions added to the RUSP in the future.
Including Georgia, which signed similar legislation in May, these new laws bring the total number of states that have adopted RUSP alignment legislation in 2021 to three. Nationally, the total is five states, including California and Florida which passed in 2016 and 2017 respectively. This life-saving momentum has been a result of a growing effort by advocates urging states to keep pace with science.
“Each year, new screening tests are developed to diagnose diseases before it is too late to receive treatment. RUSP alignment legislation will require Ohio and Arizona to keep pace with science,” said EveryLife Foundation Chief of Policy and Advocacy Annie Kennedy. “We have seen a growing interest in states passing this common-sense legislation and families are counting on it to enhance and expand newborn screening. We are grateful to the Ohio and Arizona state legislatures for passing, and to the Governors for signing, this impactful legislation. These new laws will ensure that babies born in Ohio and Arizona have the same opportunity for diagnosis and treatments as babies born across state lines.”
Ohio currently screens for 33 out of the 35 conditions on the RUSP, while Arizona screens for 31. Newborn screening detects conditions that, if left untreated, can cause disabilities, developmental delays, illness or even death. If diagnosed early, many of these disorders can be managed successfully and at a lower long-term cost – not only saving lives, but also saving state funds.
Due to broad legislative and executive support, both laws, HB110 in Ohio and SB1824 in Arizona, were passed through the state budget process. In Arizona, the EveryLife Foundation worked as part of a coalition alongside the March of Dimes, Cure SMA, and AZBIO. Arizona Senator Tyler Pace was the original bill sponsor.
In Ohio, the EveryLife Foundation partnered with more than 50 patient advocacy organizations to support the legislation, including the Little Hercules Foundation and the Batten Disease Support and Research Association. The bill was championed by Ohio State Representative Allison Russo (Upper Arlington) and Representative Tim Ginter (Salem).
Just prior to its passage, language was added to the Ohio bill that provides an exception to the screening requirements if the state determines it lacks access to required laboratory equipment. The EveryLife Foundation urges vigilance to work with state advocates and the Department of Health to better understand the potential impact and implementation of the new language, ensure the needs of the rare disease community are represented and that the benefits of RUSP alignment are realized.
“While we will continue to work alongside the EveryLife Foundation to monitor the impact of the final bill language, we applaud the state legislature and governor for ensuring all Ohio babies born with debilitating and life-threatening diseases are diagnosed and treated at the earliest age possible to avoid devastating delays,” said Morgan DeBoth, the vice president for support and advocacy for the Columbus-based Batten Disease Support and Research Association. “We understand that moving the needle for others in our rare disease community moves the needle for us all. We will continue to advocate for Batten Disease to be added to the RUSP so when that time comes, Ohio will be ready to add the disease to its newborn screening process.”
The EveryLife Foundation’s newborn screening advocacy program is made possible by the support of Sanofi Genzyme, and other industry partners including Alexion Pharmaceuticals, Pfizer, bluebird bio, BridgeBio, Novartis Gene Therapies, and Sarepta Therapeutics.
To learn more about the legislation and how to support newborn screening, visit RareScreening.org.
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