Saturday, November 20, 2004

Lovaas autism treatment and Canadian government funded healthcare

News | network
The Supreme Court of Canada refused to elevate health funding to a constitutional right in a ruling that was a stunning setback for families of autistic children asking the state to pay for expensive treatment...

...The 7-0 ruling was the culmination of a six-year legal battle begun by four B.C. families after the government refused to fund what is known as Lovaas autism treatment, saying it was 'novel, controversial, experimental and not a medically necessary service.'

The treatment, which has shown dramatic results in some cases, was pioneered in the United States by psychologist Ivar Lovaas in the late 1980s. Autistic children undergo 20 to 40 hours a week of intensive one-on-one therapy that is most effective when a child is young.

Some provinces, including Alberta, Ontario and Prince Edward Island, cover the therapy costs to some degree, but many expenses are left to parents.

The families say government refusal to pay for the treatment is short-sighted, given that about 90% of autistic children are eventually institutionalized at an enormous cost to taxpayers.

A plague strikes Atlantica. Ten thousand children will die -- unless they receive a radical new treatment. The therapy costs a billion dollars, and it will save half the children. Is the state obligated to pay?

I don't know what the Canadian supreme court was voting on, but I suspect, in one form or another, that it came down to the billion dollar question. Their answer may have been that the state might choose to pay, but it would not be obliged to pay.

So what about Lovaas treatment? Should an insurer, state or private, pay for it? Kaiser has worked these questions for years, most famously with bone marrow transplant for breast cancer chemotherapy. In that case they more or less decided to pay, but then we discovered the treatment didn't really work (or rather, we couldn't predict who it would help and who it would kill).

If Lovaas therapy changed outcomes from institutionalization to semi-independent living for half the treated children, then I suspect it makes lots of sense to pay for it. It's a lot of money ($60K/year for several years), but that cost would fall quickly over time. I bet we'd get it down to a treatment cost of $150K/course of therapy. That's well in the range of surgical and oncologic interventions for a comparable benefit. Since institutionalization is lifelong and very expensive, the economic benefit of treatment would be very strong, almost trivial to state. (Death, in comparison, is cheap. So the economic arguments for treating merely life threatening diseases are far weaker.)

If I were given the harsh task of deciding whether to try to help these children (note I do have a child who might have qualified for a variant of this intervention) I'd try to get numbers on effectiveness. How many children get the best benefits? Does it turn out that only 1 in 10 avoid institutionalization? That's of enormous benefit to that child, but now we're talking $1.5 million for each child helped. Or, most likely of all, will it turn out that there's no real data? Given the cost of this research, and the appalling lack of research funding, I suspect we just don't know.

I must add though, that if these were children dying of leukemia, that there'd probably be more willingness to treat even without good data. Humans are famously illogical.

I'm interested in what Kaiser will decide. I tried searching to see if they'd published anything, but I came up with nothing.

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