When children with a rare disease are diagnosed at birth, they have the greatest opportunity to receive timely, approved treatments or participate in clinical trials that can provide them better quality of life and less pain and suffering. Early diagnosis and intervention affords the children the best chance at living a healthy life and are key objectives of Cure Sanfilippo Foundation’s efforts.
HB 110 was introduced into the Ohio General Assembly earlier in April. The legislation contains language that will expand newborn screening in Ohio to ensure that all federal Recommended Uniform Screening Panel (RUSP) conditions are added to the screening panel in a reasonable amount of time with the appropriate funding. As Community Congress members, your leadership in the rare disease community is vital and we hope to see you join in the effort to pass this newborn screening legislation in Ohio.
Cure Sanfilippo Foundation joined other patient advocacy organizations representing the rare disease community in Ohio in signing a letter spearheaded by the EveryLife Foundation asking legislators to support HB 110 and to pass this newborn screening legislation in Ohio.
Ohio is a leader in the field of newborn screening, screening for 33 of 35 conditions currently on the RUSP. However, one of the conditions not currently on the Ohio newborn conditions, ALD, was recommended for addition more than five years ago. This legislation would empower Ohio’s expert newborn screening advisory council to promptly review any new condition added to the RUSP and, if recommended by this council, add that condition to Ohio’s newborn screening panel. It also implements a timeline for when the screening must begin, and ensures that the process will allow future funding of screening for all RUSP conditions. This language will eliminate any unnecessary delay in screening for diseases, ensuring babies born in Ohio have the same opportunity for diagnosis and treatments as babies born across state lines.
The RUSP is periodically updated using a thorough, science and evidence-based deliberative review process involving a national committee of experts in newborn screening.
HB 110 takes advantage of the work done by these medical experts responsible for the RUSP and removing obstacles to needed testing and minimize the suffering that comes from untreated diseases, stated the sign-on letter.
For the more than 700 Ohioan babies expected to receive a diagnosis due to newborn screening, early detection allows for the diseases to be managed successfully and at a lower long-term cost – not only saving lives, but also saving state funds.