Sacramento Spotlight: AB 1559 – Adding ALD to the Newborn Screening List

Wednesday, August 20, 2014
Image credit: 
Christian Delbert, Shutterstock

One could argue that a government’s core responsibility is to efficiently and effectively provide public goods to its citizens.  Policy debates typically stem from classifying what constitutes a public good and what method of distribution is the most efficient and effective.  At its core, AB 1559 is about how a government goes about effectively and efficiently providing a public good – in this case, about the government’s responsibility to protect its citizens’ lives.

AB 1559 (Dr. Richard Pan, D-Sacramento) adds a rare, but treatable disease – Adrenoleukodystrophy (ALD) – to California’s newborn screening test, which currently has about 70 diseases on it.  It is one of those rare bills in Sacramento that will likely save the state money and make people’s lives better without adding hardship to any others: truly a win-win.

ALD is a genetic disease that attacks the neurological system in boys between the ages of 4 and 10 affecting about 1 in 17,000.  If treated early, i.e. before manifestation of symptoms, those affected by the disease can live normal lives.  If it goes untreated, however, those affected slowly begin to lose all neurological capabilities – speech, sight, hearing, motor skills.   The major medical problem with ALD isn’t treating it – bone-marrow treatments have proven very successful; it is properly diagnosing it.  Since it is rare, most in the medical profession do not know much about ALD and hence misdiagnose the early symptoms and since treatment needs to begin immediately, misdiagnosing has serious consequences, ultimately leading to death.  

Hence, newborn screening allows families and doctors to know if a child has ALD, which allows them to carefully watch for the first instance of symptoms and begin treatment immediately.  And because of its placement on the X chromosome, many females are not affected by ALD, but can pass it along to their children. Detection can allow parents to conduct knowledgeable family planning and alert relatives of the existence of the genetic disease in their family.

So, why is AB 1559 not flying through the legislature and onto the Governor’s desk to sign? As is the case for most things in politics, it comes down to money.   The Department of Finance and the Senate Appropriations Committee estimates that the ALD test will cost $11 per child (the Assembly Appropriations Committee puts the cost at $9 per child).  At roughly 500,000 births a year, the cost of the screening would range from between $4.5 million to $5.5 million.

But the state wouldn’t bare the full cost; California, itself, would only be responsible for the non-federal portion of the Medi-Cal cost of testing newborns.  Medi-Cal pays for roughly half of the newborn screenings, but the federal funds pick up the tab for about 55% of Medi-Cal costs.  As such, the California General Fund would only be responsible for between $1.035 million to $1.238 million.

Of course, this still seems like a lot of money, especially since, at most, only 35 children will be born with ALD per year in California, but when you factor in the cost savings due to preventative care over the lifetime of an ALD patient, AB 1559 actually looks like a good deal for Californians.

First, the cost of the screening test will likely decrease.  New York’s test, for instance, costs about $2 per child.  Even if California’s test falls by half to between $4.5 per child to $5.5 per child, this alone saves Californians over $500,000 annually.

Second, treating an early diagnosed ALD patient is significantly more affordable than a child diagnosed late. Based on analysis from Dr. Keith Van Haren of the Stanford University’s Department of Neurology, if all late diagnosed ALD patients had been caught by newborn screening, the cost of treatment and care could decrease between $8 million to $21.5 million per year (depending on the number of diagnosed cases).  When you factor in the cost of the test, this is a savings of between $1 million and $5.5 million per year.

Yes, California will face upfront and recurring costs, but when you factor in the amount the state will save in diagnosing those affected early, these upfront costs pale in comparison.  And the added benefit of AB 1559 is that Californian families will have the peace of mind that their children can get the treatment and live, largely, normal lives. Taxpayers win and California families win.

AB 1559 has cleared all necessary legislative committees, but did get an unnecessary and counter-productive amendment in the Senate Appropriations committee – sunseting the screening after 3 years.  Now, it just requires a floor vote in the Senate before heading to Governor Brown’s desk to sign. It’s rare to see smart legislation make it out of the Golden Dome and onto the Governor’s Desk, and as long as AB 1559 isn’t forced to add any more amendments, this bill could be one of those anomalies.

Check-out the previous legislative “Sacramento Spotlight”: AB 110 – The Not-So-Balanced Balanced Budget

Hoover Institution research fellow Carson Bruno studies California's political and policy landscape.  

 Follow him on Twitter: @CarsonJFBruno