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ALD newborn-testing advocates fear veto for cost

By Josh Richman
Thursday, August 21st, 2014 at 4:33 pm in Assembly, California State Senate, Gov. Jerry Brown, Jerry Brown.

Supporters of a bill that would require newborns to be tested for a deadly disease fear it may be headed for a veto because of its cost.

Assemblyman Richard Pan’s AB 1559, requiring newborns to be screened for adrenoleukodystrophy (ALD), is now headed for a Senate floor vote, having been approved last week by the Appropriations Committee on a 5-0 vote. In fact, no lawmaker has voted against the bill so far; the Assembly approved it 79-0 in May.

But the only entity on record as opposing the bill is a big one: The California Department of Finance. Its analysis found adding a new disease to the current screening panel would require raising the $111.70 fee by another $11 – and that means an added $2.75 million per year in cost to Medi-Cal, which covers testing for about half the state’s births.

The Finance Department noted the federal government is reviewing whether ALD should be added to the list of recommended screenings for all newborns, but that review will take about two years and the state typically waits for that final approval before adding new diseases to its screening panel.

Gov. Jerry Brown typically doesn’t comment on bills before they reach his desk.

ALD – spotlighted in the 1992 movie “Lorenzo’s Oil” – is a degenerative brain disease mostly affecting young boys. The disease affects the myelin sheaths that insulate brain cells, essentially preventing the brain from communicating with the body.

It’s a rare disease – estimated at one in 20,000 to one in 50,000 births – and those who have it often have normal early childhoods. Early symptoms often seem to be behavioral and are misdiagnosed, but once the degeneration begins, it’s very rapid and usually leads to a vegetative state and then death. Advocates say cord-blood and bone-marrow transplants in the disease’s earliest stages can treat and even heal patients – if anyone knows the patient has the disease.

“Every year that California delays testing, we can expect that 30 families won’t get the early diagnoses that could save their vibrant and seemingly healthy child from this cruel disease,” said Pan, D-Sacramento, who is a physician. “For the parents who have lost their child to ALD, it is particularly tragic and painful knowing that a simple and effective test at birth could have saved their child’s life.”

Shane Louisell, 53, of San Leandro, lost two brothers to the disease – Bobby, at age 5, and Richard, at age 44 – the latter having suffered the less-common, adult-onset version of the disease. Now his nephew, in his 30s, has it too.

“The bill is so important – getting newborns screened, at least they have a chance to do something about it before it’s too late,” said Louisell, an artist and retired teacher. “It would save a lot of families grief.”

And supporters say the bill actually would save California millions because the difference in treating an early diagnosed patient and a late-diagnosed patient is roughly $1 million per year.

New York just began testing newborn babies for ALD at the end of last year; so far, six boys and one girl were found to have the disease, and so have been given a chance at life; testing of those babies’ families found a four-year-old who also was diagnosed.

You could’ve heard a pin drop as ALD victims’ mothers told their stories at the Senate Health Committee hearing in June:

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  • RRSenileColumnist

    Maybe only genetically predisposed need test

  • JohnW

    Good point. But, if they can actually arrest it by treating it at birth, testing on some level seems like a good idea — not only for humanitarian reasons. Seems like it would be cost effective, considering the health care cost if the disease runs its course.