Among the many bills waiting to be signed into law by California’s governor in the next two weeks, not many can claim they save lives-and even less, that they have already done so before being enacted. AB 395, a bill sponsored by Sacramento pediatrician and Assemblyman Richard Pan, deserves the governor’s signature, because it will not only save lives but also will save the state money over the long term.
Annalou Bojórquez is almost one year old. She owes her life to a pilot program that added the test for Severe Combined Immunodeficiency (SCID) to the battery of newborn screening tests. This disease is better known as bubble boy disease, because the children suffering from it spend much of their short lives in isolation and being treated for numerous infections, since they lack antibodies. Annalou was the first baby diagnosed with this disease last October at a hospital in Clovis. After receiving a bone marrow transplant from her mother, Elena, Annalou is now cured and a normal baby.
The pilot program showed a higher than expected prevalence for the disease and that a majority of those affected in California are Latino children.
The legislature approved the bill in a bipartisan manner, in a rare show of unity, despite the fact that it requires additional spending in order to be implemented. Legislative analysis shows that in the long run, the investment will result in savings. If they are not diagnosed, these children will require much more care and higher expenses, will spend their childhoods in isolation and the majority will lose their lives before reaching adulthood.
Governor Brown has dozens of laws to sign and has said he will only accept those absolutely necessary to effect change. We think AB 395 is one of them and should become law.