(SACRAMENTO, CA) The State Assembly passed a bill authored by Assemblymember Noreen Evans (D-Santa Rosa), Chair of the Assembly Democratic Caucus, requiring health plans and insurers to provide coverage for the testing and treatment of inborn errors of metabolism (IEMs) in newborn children that, if untreated, may result in death, coma, seizures, cardiovascular disease, and mental retardation.

Sponsored by the March of Dimes, Assembly Bill 30 passed with a 46-30 vote.  It now goes to the Senate for further review.

California’s Newborn Screening Program tests all newborns for 47 different IEMs as well as four endocrine and 24 hemoglobin disorders.  These rare disorders occur in roughly one birth within 5,000.  However, under current law, coverage for treatment is required for only one type of IEM called phenylketonuria.

“California spends millions of dollars to screen babies for metabolic disorders,” said Evans.  “Then, we abandon them.  This bill will make sure they get the treatment they need for a healthy start to life.  It’s a bittersweet victory to move this bill to the Senate on the same day the Senate stalled health care reform.”

Persons with IEMs have genetic disorders that affect their ability to digest foods and metabolize nutrients.  AB 30 will make sure that the special formulas, food products, and nutritional supplements needed to treat IEMs are covered by all health plans and insurers in California.  Today, only 39 percent of the privately insured population of California has coverage for the medical nutrition therapy for IEM disorders.

The average annual per patient cost for IEM treatment is roughly $3,000 for formula, $1,000 for special food products, and $2,000 for nutritional supplements.  By requiring coverage for IEM treatment, AB 30 would result in an estimated monthly premiums increase of one cent.  When combined with treatment, early diagnosis of IEMs could avoid annual economic losses of $140.5 million, $46.7 million in Medi-Cal expenses, and $23.3 million General Fund expenses from providing services like in-home care.

“Pennies spent today will lead to great savings in the future,” added Evans.

One hundred percent of medical nutritional therapy is covered by public programs administered by the state Department of Health Services: the California Children’s Services Program and the Genetically Handicapped Person’s Program.  These programs benefit only those families covered by Medi-Cal, Healthy Families, and privately insured residents who make less than $40,000 per year.

Further information about AB 30 is available online at http://www.leginfo.ca.gov.