Governor Signs Dr. Pan’s Life-Saving Newborn Screening Bill
SB 1095 provides children with the best opportunity for an early diagnoses and treatment through newborn screenings
SACRAMENTO – Governor Brown signed SB 1095 today, bill authored by Dr. Richard Pan to require the Department of Public Health to expand the existing newborn screening program, ensuring that California babies get the earliest diagnosis and treatment possible for these life-threatening diseases.
“Rare diseases are often difficult to diagnose in time before permanent damage is done,” said Dr. Richard Pan, a pediatrician and Senator representing the Sacramento region. “This new law means that California will implement recommended newborn screening when an early diagnosis and treatment can prevent disability and save lives.”
Currently, California has to introduce new legislation every time a disease is added to the federal Recommended Uniform Screening Panel (RUSP). SB 1095 removes the legislative delay, so California can rapidly implement the new screening and babies can have the earliest opportunity to receive lifesaving treatments.
Because of the rarity of these diseases, it can take more than seven years for a patient to receive an accurate diagnosis. Delays in diagnosis and treatment can cause severe cognitive and physical problems and even death. Early treatment can prevent the irreversible complications of the disease, providing cost savings to the state and ensuring better health outcomes for babies born in California.
California saves $9.32 in health care costs for every dollar spent on newborn screening.
“This new law will solidify California as a national leader in ensuring babies are screened for life-threatening rare diseases. We, along with families across California are so grateful to Dr. Pan for his commitment to newborn screening, and to Governor Brown for signing this important legislation," said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases, sponsor of the legislation.
The Secretary of the United States Department of Health and Human Services convenes a committee of newborn screening experts to develop a Recommended Uniform Screening Panel (RUSP). The federal process is rigorous, evidence-based, and science-driven, but ultimately states are not required to follow the recommendations. This results in babies in some states receiving timely diagnosis and treatment, while babies born in other states do not, with potentially life-threatening consequences.
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