Does the Lupron Protocol hurt us trying to get insurance parity?

22 May

One of the big issues in the US autism community today is the quest for insurance coverage for autism. Many states are considering or passing laws right now on this very issue.

One question that comes up is how to address alternative medicine. Lawmakers don’t want to make an autism diagnosis a free pass to any and all therapies–be they real, experimental or bad.

So, take a look at the “Lupron Protocol”. This was discussed in a recent article in the Chicago Tribune.

For those who have been lucky enough to not hear about the Lupron Protocol, here is a brief history.

Professor Simon Baron-Cohen proposed a theory that autism might be caused by exposure to higher than normal levels of testosterone in the womb.

Mark and David Geier took this this idea, mashed it up a lot and mixed it with their concept that autism is caused by mercury. Their theory? Mercury binds with testosterone in the brain, forming crystalline sheets which are difficult to remove with chelation.

Utter and complete nonsense.

The Geiers then proposed that reducing the amount of testosterone in the system would allow chelators to access the mercury. They had found a way “to get the mercury out”. Removing the mercury, according to them, would result in improvement or recovery from autism.

Utter and complete nonsense.

Fast forward to today. The Geiers have set up “franchises” across the country to “treat” autistic kids with Lupron, a drug which shuts down testosterone production in the body.

Utter, complete and scary nonsense.

Insurance companies won’t pay for this. For one thing, they don’t usually pay for experimental therapies. Calling the Lupron Protocol “experimental” is just wrong. Experiments are controlled. The subjects are informed that the therapy is experimental and there is some oversight and there is an actual study going on. At best one could call the Lupron Protocol “alternative” medicine.

Or, one could call it, utter, complete and scary nonsense. Just my personal opinion.

Since the insurance companies will not pay for nonsensical autism therapies, the Geiers have decided that autistic kids have a very high incidence of early onset or “precocious” puberty. They test for this:

To treat an autistic child, the Geiers order $12,000 in lab tests, more than 50 in all. Some measure hormone levels. If at least one testosterone-related level falls outside the lab’s reference range, the Geiers consider beginning injections of Lupron. The daily dose is 10 times the amount American doctors use to treat precocious puberty.

$12,000?!? I am trying to find out from a reputable source how much the tests to determine precocious puberty really should cost.

Note that they do a LOT of tests. If they get any single test which indicates precocious puberty, they diagnose and start treatment.

I am not alone in questioning these tests. Experts in precocious puberty have questioned them as well. From the Tribune story:

The blood tests the Geiers use as proof of excessive testosterone don’t show that at all, and other data they cite mean nothing, said Paul Kaplowitz, chief of endocrinology at Children’s National Medical Center in Washington, D.C., and an expert on precocious puberty. They also leave out test results that could help show whether the children are in early puberty, he added.

Looking at the tests, Kaplowitz said he asks himself: “Is Dr. Geier just misinformed and he hasn’t studied endocrinology, or is he trying to mislead?”

If the tests cost $12,000, how much do you think the treatment costs?

The cost of the Lupron therapy is $5,000 to $6,000 a month, which health plans cover, Mark Geier said. However, two families told the Tribune that they had trouble getting insurance to pay for the treatment.

Yep, $60,000 plus per year. Again, I am trying to find out how much a legitimate course of Lupron should cost. Also, I am very interested to know how long a course of Lupron should take. Should it go on indefinitely, as apparantly the Geier protocol does? Or, is there some finite time involved?

Given the opinions of the actual specialists interviewed by the Tribune, it seems pretty clear that the Geiers are neither treating mercury poisoning nor precocious puberty. What they are doing is charging for a lot of expensive tests and even more for a long regimen of Lupron.

Is it any wonder that the insurance companies are balking?

Is there any question that this will make it harder for the rest of us to get real insurance parity for people with autism?

2 Responses to “Does the Lupron Protocol hurt us trying to get insurance parity?”

  1. daedalus2u May 22, 2009 at 18:57 #

    Like any type of insurance fraud, the lupron protocol hurts all the legitimate users and stake-holders in the insurance programs that are being defrauded. I see no relationship between insurance fraud like this and legitimate medical treatments. I think the best way to deal with insurance fraud like this is to put the perpetrators in jail and force them to repay their victims (the insurance companies).

    I think there should be a “standard of care” for companies that provide medical testing, that they should flag tests that are inapropriate, are used excessively. I think it would be appropriate to use RICO legal theories (Racketeer Influenced and Corrupt Organizations Act) to look at the relationship between testing agencies that generate test results that quacks use to justify quack treatments and fraudulently charge insurance companies for the fraudulent tests and treatments.

    Provoked urine mercury levels come to mind. There is no legitimate medical use of provoked urine mercury levels. I think it is fraudulent for a company to provide such testing as if there was a legitimate medical use for it. The only use for it is to trick parents and insurance companies into paying for chelation which is not needed and which is itself harmful. It doesn’t look like a close call to me.

  2. Another Voice May 23, 2009 at 11:55 #

    I do wish that some of these alternative treatments could be considered fraudulent, but they can’t be as long as they are actually delivered. If the insurance company or Medicaid is billed for a service which was not rendered or was clearly not medically necessary, it may be possible to prove fraud.

    In this situation and many other alternative medicine treatments there are licensed medical doctors prescribing the treatment. There is no requirement that the treatments actually work. If the medical community has chosen not to self regulate the practice of medicine, we should not expect an insurance company to fill that void.

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