Dr. Pan’s Life-Saving Newborn Screening Bill Passes State Assembly

SB 1095 provides children with the best opportunity for an early diagnoses and treatment through newborn screenings

August 18, 2016

SACRAMENTO – A bill authored by Dr. Richard Pan to require the Department of Public Health to expand the existing newborn screening program to include any condition that has been adopted by the federal Recommended Uniform Screening Panel (RUSP), passed the State Assembly. 

“Rare diseases often are difficult to diagnose in time before permanent damage is done,” said Dr. Richard Pan, a pediatrician and Senator representing the Sacramento region. “SB 1095 ensures California implements 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 RUSP.  SB 1095 removes the legislative delay, so California can rapidly implement the new screening, ensuring babies in California 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 bill will solidify California as the national leader in ensuring babies are screened for life-threatening rare diseases.  We are so grateful to Dr. Pan for his commitment to newborn screening, he is a hero to the rare disease community,” said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases.

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.

“Once the screening has undergone rigorous scientific analysis at the federal level, often taking years to complete, there is no reason to delay, and to do so is catastrophic for families,” added Dr. Pan.

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