Signing Dr. Pan's AB 395 Would Make Permanent the State Pilot Program That has Identified Higher Prevalence of the Disease
SAN FRANCISCO – Dr. Richard Pan (D-Sacramento) today urged Governor Jerry Brown to sign Assembly Bill 395 to make sure a groundbreaking state newborn screening pilot program that has identified newborns with bubble boy disease, also known as Severe Combined Immunodeficiency (SCID), is made a permanent part of California's newborn screening process.
"California's pilot program has shown us the way toward the day when bubble boy disease is a thing of the past and AB 395 will help make sure children born with the disease can live to see that day," Dr. Pan said at University of California San Francisco. "AB 395 will make sure all California newborns are screened for SCID and I am proud to be working on this effort with the March of Dimes, UCSF doctors and the brave families with babies who were identified early, treated and now have the chance to live a healthy life."
Beginning on August 16, 2010 the California Department of Public Health's (CDPH) pilot program has screened all California newborns for the SCID, allowing for early life-saving treatment and showing a higher than predicted prevalence for the disease, especially among Latino newborns. The state pilot program ends in February 2012.
Annalou Bojorquez was the first baby identified by the pilot program as having SCID. Her grandmother, Lisa Mayorga, told reporters about the importance of newborn screening for SCID.
"If our precious Annalou had been born just three months earlier, before the pilot program began, she might not be here today," Mayorga said. "I fear for the lives of newborns now that the SCID pilot program is ending, which is why I am here today. AB395, currently before Governor Brown, would permanently add SCID to the California newborn screening panel."
"March of Dimes has a long history of expanding newborn screening legislation and this has been a major focus of our work in California," said Karyn DeMartini, March of Dimes State Director. "It is critical that these newborns get screened for these life-threatening conditions at birth so they can receive the medical treatments and interventions early to prevent the worst possible outcomes. Enacting this bill will ensure that this federally recommended core disorder is added to the current newborn screening panel here in California."
On May 21, 2010, Kathleen Sebelius, Secretary of Health and Human Services, announced the addition of SCID to the core panel of 29 genetic disorders -- as part of her recommendation to adopt the national Recommended Uniform Screening Panel.
Dr. Jennifer Puck, who treated Annalou at University of California San Francisco, discussed the importance of early detection and treatment of SCID.
"When babies are born with SCID, they don't have any ability to fight infections," Dr. Puck said. "It's called 'combined immunodeficiency' because both the T-cell and the B-cell arms of the immune system are impaired, or disabled. When babies have this condition they develop infections starting from the early months of life, and if they are not given a working immune system they cannot survive."
Without early identification and treatment, babies with SCID must undergo isolated, constant and costly treatment and rarely live past early childhood. With early diagnosis (before the age of 3.5 months) and treatment, these babies have a very high probability of living normal, healthy and productive lives.
AB 395 has been approved by the Legislature and Governor Brown has until October 9 to sign or veto the bill. Without action by the Governor the bill automatically becomes law.
Dr. Richard Pan is a father, pediatrician, educator, small business owner and first-term Assemblymember that lives in Natomas Park. He represents Natomas and portions of the City of Sacramento, along with Arden Arcade, Carmichael, the City of Citrus Heights, Fair Oaks, the City of Folsom, Granite Bay, North Highlands, McClellan Park, Orangevale.
CONTACT: Brian O'Hara (916) 319-2005
