Our children suffer (and die) for our ignorance

You don't have to be a parent to care about the welfare of children---but it does bring things into a sharp, personal light. I recently wrote about Daniel Hauser, a child likely to die of Hodgkin's disease due to his parents' cult medicine beliefs. Cases like his are aberrations---they stand out for their rarity, but also for their horror. Still, the horror is mitigated somewhat by the rarity.

More frightening are systemic abuses of children via cult medicine beliefs, ones that affect dozens or hundreds of kids at a time. One of the most egregious of these is Lupron therapy for autism. As documented by Steve Novella and Orac, this is an unscientific practice of chemically castrating young boys with autistic-like behaviors.

If you just did a double-take, you read it right. Mark and David Geier promote the chemical castration of children with autism spectrum disorders. The reason behind this is not all that important, and is much better documented by Steve and Orac. But the horror of it is hard to comprehend.

The journey to sexual maturity is difficult enough, both psychologically and physically. To purposely interrupt this process is nothing short of abuse (whether it is also battery is an open question). Since there is no valid medical reason to castrate children---such as precocious (early) puberty, or prostate cancer(!)---this practice is unjustifiable. Are they also using this drug on girls, and if so, what are the effects? We not infrequently use drugs "off label", that is, not for the indications approved by the FDA, but this is normally a technicality---the drug clearly is good for the condition, but the drug company hasn't had the incentive to specifically test that indication. But to use a dangerous drug that destroys the normal development of a child for no clearly indicated reason is more than immoral. What the Geiers are doing is beyond "alternative"---it's quackery, possibly fraud, and abusive. I don't know what motivates them, but from where I sit, apparently ideology and money play a role.

They're opening centers all over the country for their quackery, and these centers must be profitable. You see, most insurance companies aren't going to pay for treatments that are so clearly insane, so parents pay cash. I do wonder how long it will take for insurance companies to wonder about possible fraud. For example, this bit from their website:

We always work to provide whatever is necessary to optimize insurance coverage for medications.

...is just the kind of thing that raises red flags to fraud investigators. Does it mean that they will "stretch" the definition of "precocious puberty"? Or simply that they will send a bill to the insurer, like most doctors? Or are the words just there to reassure parents who will inevitably receive a bill?

What these new clinics are achieving is nothing less than a cottage industry of child abuse centers. To call it anything else is a lie---a lie that harms children. It is nearly unimaginable to me that this is allowed to go on---that a couple of "scientists" working out of their basement are allowed to medically castrate children without any repercussions.

You should be nauseated, as I am, that this is allowed to go on. But what can we do?

I'd start with writing the state medical boards where the clinics are located. State medical boards have a long history of tolerating quackery, but who knows? Maybe someone will wake up and realize that it's not OK to castrate autistic kids. Most states will probably require the patient to make a formal complaint, but a letter or email couldn't hurt.

Maryland

Texas

Illinois

Indiana

New Jersey

Washington

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Lupron? For kids? Yikes! Are the side effects in kids the same as in adults? I had one shot of that stuff a few years ago and I thought I was going to spontaneously combust from the hot flashes.

Thank you for finding the states and their medical board contact info. They will be hearing from me (and I'll try not to be too incendiary).

By Anneliese (not verified) on 22 May 2009 #permalink

Truly disgusting, and I will be noting if this rubbish starts up in Australia.

My gorgeous ASD son is now 22, and in his own disingenuous way, has kept me totally up-to-date with how he felt going through puberty. It has been a wonderful learning experience for both him and myself. To think that this should be supressed by medication for absolutely no reason is unfathomable and criminal!!!

This is heartbreaking. Have we learned nothing from our sordid past history of sterilizing poor and minority women and those with mental retardation without their consent? Thank you for shining light on this horrible practice.

I guess there are always two sides to these things. Consider the case I saw recently:

A young man with severe autism, living in a group home. He is over six feet tall and weighs in excess of 200lbs. He has in the past several years sexually assaulted three female staff members, one boy of about seven, and two girls, about five and 12. He neither comprehended why this is wrong, nor could be prevented from doing the same thing again.

He needed at least two male staff members with him at all times, and for that reason had been in a lock-down facility, unable to go outside very often due to not enough staff.

Lupron has allowed this young man significant freedom. It is at a cost, and I don't know that it's the best response.

But I wouldn't cage a dog, never mind a human.

Red Rabbit -
That is one of the legitimate uses of Lupron - although a case for surgical castration could be made because it's less stressful than repeated injections of Lupron and there is no reasonable expectation that the need for testosterone inhibition will ever go away.

By Tsu Dho Nimh (not verified) on 25 May 2009 #permalink

"We always work to provide whatever is necessary to optimize insurance coverage for medications."

That's actually about the only part of the whole Geier enterprise that I don't personally view as entirely shady. Of course I suppose that in context it is indeed. As you well know dealing with insurance is one of the most absurd aspects of our alleged health care system. The amount of time that patients (let alone medical offices) have to spend justifying their bills to the insurance company is ridiculous. Two quick examples.

A coworker had a child born severely disabled. Every single month he would spend 15-20 hours on the phone arguing with the insurance company over what is and isn't covered. Every month it would result in them finally admitting that the items they rejected were indeed covered. He dealt with *the same person* every month. For over two years.

When my wife and I were trying to conceive we ultimately went to a specialist after 4 years of ob/gyn efforts. The specialist also did all the normal ob stuff. If they submitted to insurance using the Dr's name for procedure X, it was covered. If they submitted using the name of the clinic, it was denied. The insurance company did consider the clinic to be in network and fully covered, but our plan only covered *diagnosis* of infertility, not treatment. So if they even saw the *word* infertility, it was denied.

Sorry for the off topic rant, the health care situation is touchy subject for me.