Withdrawn Drug May Close Window of Hope for Kids

Brian Gurwitz has written hundreds of legal briefs in his nine years as an Orange County deputy district attorney, most involving cases on appeal. The name of the game is research, research, research -- and then persuading someone through the power of your argument.

But for the last 18 months or so, he’s been moonlighting on the biggest case he’ll ever have -- proper treatment for his son, Garrett, who began displaying autistic-like characteristics when he was 1 1/2. However, Gurwitz and his wife, Renee, also a deputy district attorney, refuse to describe their son as autistic.

Therein lies the backdrop for an emerging medical story that, so far, has left the Gurwitzes and other parents in varying states of frustration, anger and -- dare they suggest it? -- cautious optimism.

The parents are largely convinced that, in many cases, what has been diagnosed as autism in their children may be something else -- the product of a class of illnesses or disorders related to a dysfunctional immune system. The handy name is NIDS, which stands for Neuro-Immune Dysfunction Syndrome.

The distinction is hugely important, they say, because it means the difference between doctors and others thinking there’s only so much they can do (autistic children are thought to have a largely untreatable developmental disability), as opposed to being able to apply wide-ranging medical treatments with prospects for improvement.

Marc Share heads the NIDS Research Institute, a coalition of parents that formed in Tarzana a few years ago and that now, he says, includes 300 families.

For most of us, the medical issues may be beyond our grasp, but we can understand this: parents’ frustration that a drug shown to produce remarkable results has been taken off the market.

Kutapressin, an anti-viral drug that has been around since the 1940s and is made from pig liver, has various uses. In recent years, Share says, a number of children who once would have been thought to be autistic have shown “dramatic improvement” under treatment with Kutapressin, including such breakthroughs as verbal contact and eye contact. About 10 days ago, however, its manufacturer ended months of speculation and pulled the plug, saying its supplier was no longer providing the drug’s key ingredient.

Share says he hasn’t been able to get more definitive answers from Schwarz Pharma, a company headquartered in the Milwaukee suburb of Mequon. When I inquired, the company affirmed in a fax that it is discontinuing production. The statement said, in part:

” ... For some time now, Schwarz Pharma, has been working hard to restore the supply of Kutapressin ... After months of searching and testing other resources, we regret to say that we have been unable to find a source that duplicates the product specifications of our formula.”

A follow-up phone call asking for elaboration was not returned.

Because parents need Schwarz Pharma’s expertise if a new manufacturer is to be found (it has been the only manufacturer of Kutapressin), they can’t afford to raise the roof, Share suggests. But they aren’t happy with the company’s decision, and are mystified why it can’t round up more pig liver extract.

Gurwitz doesn’t consider Kutapressin a magic potion all by itself, but says it undoubtedly spurred improvement in his son, who started taking the drug in April and who turns 3 next month. “We noticed huge gains when he went on it,” Gurwitz says. “It kills me to think whether we’d be able to see the same rate of progress if he was still on it.”

The search for a Kutapressin replacement has thrust Gurwitz and other parents onto the slow-moving machinery of the American pharmaceutical industry and governmental bureaucracy.

In fact, don’t get him started. “There is this perception that these kids have this congenital, hard-wired developmental disability with no prospect of medical treatment,” Gurwitz says. “The truth is, the kids who are medically treated can improve to varying degrees. There are some kids who are essentially normalized, others who have made more subtle progress.”

Like a lawyer relying on logic and precedent, while trying to keep a father’s emotions out of it, Gurwitz insists the answers are already out there. The research is moving in a clear direction, he says.

“I believe beyond a reasonable doubt that a huge percentage of kids who are diagnosed now as autistic are kids suffering from a neuro-immune problem, or an immune dysfunction,” he says.

Share, the head of the NIDS Research Institute, sighs and laments the passing of time. “In general, the research world moves very, very slowly,” he says. “With developmental things, if something takes five years instead of two, that may be the window of opportunity for hundreds of thousands of kids.”

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Dana Parsons’ column appears Wednesdays, Fridays and Sundays. He can be reached at (714) 966-7821, at dana.parsons@latimes.com or at The Times’ Orange County edition, 1375 Sunflower Ave., Costa Mesa, CA 92626.