Governor Jerry Brown Signs Legislation Sponsored by EveryLife Foundation Ensuring Babies Born in California Receive the Earliest Treatment for Life-Threatening Conditions

NOVATO, Calif.–(BUSINESS WIRE)–#newbornscreening–Yesterday, Governor Jerry Brown signed into law Senate Bill 1095 (Pan),
sponsored by the EveryLife Foundation for Rare Diseases. The bill
ensures that babies born in California will be screened for a disease
within two years of its addition to the federal Recommended Uniform
Screening Panel.

Senator Richard Pan, MD (D-Sacramento) introduced the bill in February,
noting that “[r]are diseases often are difficult to diagnose in time
before permanent damage is done.” With leadership from the EveryLife
Foundation and support from more than 120 patient organizations
including March of Dimes, the National Organization for Rare Disorders
(NORD), Muscular Dystrophy Association and Global Genes, this bipartisan
legislation breezed through both chambers of the state legislature
without a single “No” vote.

Every year, many California babies go undiagnosed for diseases and
conditions that are easily detectable by newborn blood screening, a
quick heel prick that all babies receive at the hospital shortly after
being born. But while California was once a leader in newborn screening,
the state does not currently screen for all of the diseases recommended
by leading scientists and public health officials. Currently, new
legislation must be introduced for the state to screen for any disease.
As a result, California babies are delayed treatment, which can lead to
unnecessary pain and suffering.

With the Governor’s signature, the lives of babies born with MPS, Pompe,
and many other diseases will be forever changed. They will get the
earliest diagnosis and treatment possible for these life-threatening
diseases. But SB 1095 doesn’t just save lives; it also saves money. For
every dollar spent on newborn screening, the state saves $9.32 in health
care costs. The EveryLife Foundation for Rare Diseases applauds Senator
Pan, Governor Brown, and the hundreds of advocates and patient
organizations who helped make this possible.

The EveryLife Foundation for Rare Diseases is a 501c3 public charity
dedicated to accelerating the pace of biomedical innovation through
science-driven public policy.


EveryLife Foundation for Rare Diseases
Stephanie Fischer