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The high financial cost of Lupron therapy for autism

24 May

Lupron therapy for autism has been controversial ever since it was first proposed by Mark and David Geier. Controversial–as in the rational for Lupron for autism was based on some of the worst junk science I have ever seen. Neurodiveristy.com has followed Lupron since the beginning (here is but one example of the excellent reporting from neurodiversity.com).

The Lupron story recently was covered by the Chicago Tribune. Page 1 of the Trib, by the way. The story was the number 1 emailed story from the Trib’s website when I checked at one point. Even with letting the Geiers give input for “balance” it was still a very scary story.

One thing that caught my eye was the very high cost of Lupron therapy. At least, the very high cost when Lupron is prescribed by the Geiers and used to “treat” autism (or, as the rationale goes, autistic kids with precocious puberty).

First, the cost for testing is very high. From the Tribune:

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.

Second, the cost of the drugs was even higher. Again from the Tribune article (quoting Mark Geier himself):

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.

These numbers seemed so high that I decided to ask someone who would know. Someone who treats children with precocious puberty.

How much does it cost to test for precocious puberty? $12,000 as when the Geiers are testing? Not even close. According to my source, precocious puberty can be diagnosed for less that $1,000 in tests.

It appears that the Geiers call for a lot of tests that are not involved with precocious puberty.

So, how about that $5,000 to $6,000 a month that Dr. Mark Geier says his patients (or their insurance) pay for the therapy? How does that compare to an actual treatment for precocious puberty? At doses typically used for precocious puberty, $1,500….a year.

Yes, $6,000 a month if you are with the Geiers vs. $1,500 a year for a real precocious puberty therapy.

Something seems really wrong here. It doesn’t appear as though the Geiers are dispensing the Lupron themselves. Parents seem to be getting Lupron from pharmacies. If so, the increase is not due to any markup by the Geiers.

Recall from the quote above from the Tribune:

The daily dose is 10 times the amount American doctors use to treat precocious puberty.

This might account for the cost going from $1,500 a year to $15,000 a year. How can the Geier protocol cost $60-72,000 a year?

You are neurodiverse….

23 May

We don’t all think the same way. We just don’t. There is a “diversity” in our thought processes. Our neurology.

So, I find it interesting when people talk about “those neurodiverse” or in some other way try to make it an “us vs. them” subject. As Jake and Elwood said,

Some things that make us all the same. You, me them, everybody, everybody.

In this case, it is our differences that make us the same. Everybody is neurodiverse. Everybody’s mind thinks just a little different from anyone else’s on this planet. And, that is what makes us all neurodiverse.

The problem comes up when we move from “Neurodiverse” to the “Neurodiverisity movement”.

As Kev notes in his recent post, there is no organization or official position on what is Neurodiveristy. But I think the basic idea is clear:

Just as there is a diversity amongst people by gender, race, ethnicity, and culture, to name but a few ways we vary as a people–just as there are those diversity categories, we also vary by neurology.

And, just as we need to respect each other even though we come from diverse gender, racial, ethnic, cultural, and other backgrounds, we need to respect each other even though we think in different ways.

That’s not so hard a concept, is it?

The analogy to other diversity movements is very clear. For example, no one way of thinking is better than any other.

This is where many people get confused. They say, “Neurodiversity proponents don’t see autism as a disability”. When one says, “no one way of thinking is better than any other”, that is a far cry from saying, “no one way of thinking makes life easier than any other”. The question is, if life is made easier for you because of your neurology, does that make you “normal”? More importantly, if your neurology makes your life easier, doesn’t that give you the responsibility to help out those who may need a hand?

The thing is, neurodiversity is about human rights. The question isn’t, “Do you believe in neurodiveristy”, but, rather, “How can you not believe in neurodiversity”.

Should the Geiers be granted a patent on Lupron?

22 May

As many in the autism community will tell you, drug patents are big money. Usually this is used by people claiming, “he is not trustworthy–he makes a lot of money off of drug patents”. Funny how those claims aren’t applied to the father-son team of Mark and David Geier, who have applied for a patent for their method of “treating” people with autism using a very strong drug that dramatically reduces the levels of the hormone testosterone in the body.

This “protocol” has been called into question in recent articles in the Chicago Tribune, here and here. These stories have been blogged on LBRB by Kev and myself.

As an aside, at the time of writing, one of the Tribune articles is #5 on the Tribune’s “most viewed” list, and #1 on the most emailed list.

The Geiers originally looked to Lupron with the justification that somehow testosterone was binding with mercury in the brains of people with autism. This made it difficult or impossible for chelating agents to remove the mercury. Since, in the world of Mark and David Geier, mercury is at the root of autism, it made sense to get rid of the testosterone in order to treat the mercury poisoning in order to improve or recover the autistic person.

Sound convoluted and implausible? You are right.

First off, autism isn’t mercury poisoning. Geez, that’s one dead horse that will never be given a rest.

Second, Lupron shuts down production of testosterone. It does not remove testosterone from the system. Who is to say that reducing the amount of testosterone in the system would break up the supposed “crystalline sheets” of mercury/testosterone compound that the Geiers believe are in the brains of autistics?

Third, even the Geiers don’t buy into the mercury/testosterone connection (at least in public). Read the Tribune stories. All the discussions are about reducing the amount of testosterone in the body.

The Geier’s patent application, US27254314A1, has 109 claims (a lot!). What is claim #1 (the most important claim in any patent)?

1. A method of lowering the level of mercury in a subject suffering from mercury toxicity, the method comprising the steps of:
a) administering to said subject a pharmaceutically effective amount of at least one luteinizing hormone releasing hormone composition; and

b) repeating step a) as necessary to lower the level of mercury in said subject.

I.e. they are patenting using Lupron (and similar compounds) to help remove mercury from people.

If they aren’t actually reducing mercury, or treating people with “mercury toxicity” (isn’t the real term intoxication?), why should this be granted?

The Geiers may state that they see behavioral differences in their patients. Well….they are reducing their testosterone levels to near zero. Of course they will see behavior differences. But, are they, as they claimed, reducing the mercury levels in their patients? If you read the article, you will see that mercury really isn’t discussed. It is all about reducing testosterone levels.

How does the Reverend Lisa Sykes, co-author with the Geiers on papers, and parent of probably the Geier’s most well known patient have to say? In the comments on the Tribune website, she states:

As the parent of the first child to be treated by Dr. Geier for high testosterone, a condition caused by cinically diagnosed mercury-poisoning from the theraputic use of vaccines and RhoD, I can only wait for the day the press gets it right.

Yep. The story has changed. The good Rev. Sykes, who used to claim that the idea behind lupron was to get the mercury out, now claims that mercury causes high testosterone levels. Well, at least they are consistent in always making mercury and vaccines the villan.

So, again, I pose the question: if Lupron isn’t working by helping to remove mercury, should the patent be granted to the Geiers? From where I sit, the answer seems to be a clear, “No”.

Of course, a second question is “does it have any benefit for people with autism”? The Geiers recruited Dr. Mayer Eisenstein to “treat” people with autism using Lupron in the Chicago area. After a few months of being part of the Geier “franchise”, what does Dr. Eisenstien have to say?

“It’s highly unlikely that we’re going to be part of the autism program much longer,” Eisenstein said. “I’m not pleased enough with it. It’s not where I want to put my energy.”

I just don’t see this patent as being granted.

Autism community need to learn lesson

22 May

As is accepted by most rational people, autism is a largely genetic difference, albeit with a likely environmental component. Over the last 10 years or so a seemingly increasingly irrational desire to blame vaccines for causing autism has been coupled with a similarly irrational ‘cure at all cost’ mentality. The subsequent parent driven engine has resulted in autistic kids being exposed to shysters, snake oil salesman and out and out quacks selling their own version on dangerous exploitation.

However, in a revealing picture of what the ‘cure at all cost’ mentality might be doing not only to autistic people but to the human race in general we could do no worse than to look at recent discoveries in another genetic based difference – Down Syndrome:

A gene that’s present in the extra chromosome people with Down syndrome protects this population from getting many types of cancers, according to a study published in the journal Nature Wednesday.

…..

The answer lies in a gene called Dscr1, which is one of the genes present in Down syndrome causing chromosome 21. Since people with Down syndrome have an extra copy of this chromosome, they also have an extra copy of Dscr1. Researchers studied the gene in mice with human cells and found that it limits the growth of blood vessels that tumors feed on.

All the years that people with Down Syndrome have taken abuse, been put down and – most ironically of all – had pre-natal testing performed that has resulted in a drop of Down’s babies. And now it seems they might hold the key to destroying at least some forms of cancer. Imagine if we only found that out after the last Down’s adult had died?

Imagine what we might find out if we start looking at research that works _with_ autistic people. Imagine what we might lose if we decide to plow ahead with a ‘cure at all cost’ mentality.

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?

Autistic boy killed with ‘chemical cosh’

21 May

Disability Scoop reports today on the awful story of an autistic child killed at a group home:

Denis Maltez, who had autism, died in 2007 at age 12 after being restrained by staff members employed by the group home where he lived in Miami. An autopsy determined that he was experiencing serotonin syndrome, a condition where the body produces too much serotonin, the chemical that regulates a person’s mood. The syndrome can be caused by a combination of psychiatric medications.

….

“This is a clear case of a 12-year-old child who perished because he was given a lethal combination of off-label, dangerous, anti-psychotic drugs to control his behavior without appropriate consent, administration and supervision,” said Howard Talenfeld, Quesada’s [the boy’s mother] attorney. “Tragically, this case is one of many cases where foster children and developmentally disabled children are given powerful drugs to control their behavior instead of utilizing appropriate behavioral interventions.”

With echoes of the inappropriate ‘care’ dolled out to Jesse Moores, this seems to me another example of a young person with special needs treated with scant thought or care. Its sickening that there seem to be so many of these stories on both sides of the Atlantic recently. I sincerely believe that there needs to be an _international_ coalition of voices – made up primarily of autistic people and their immediate families – to offer oversight on how autistic people are treated. This cannot be allowed to continue. Closing down homes, jailing perpetrators etc _after_ the fact is all well and good. We need something proactive not reactive.

Lupron called ‘Junk Science’

21 May

It was only a matter of time before the big papers caught on to some of the quack treatments being pedalled by certain (in)famous autism doctors.

The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” (said Professor Simon Baron-Cohen)

“It has become a cottage industry of false hope, and false hope is no gift to parents,” said Autism Science Foundation President Alison Singer, whose daughter has autism. “A lot of these therapies have no science behind them. You are using your child as a guinea pig.”

I blogged earlier this month about the Geier’s at a conference and their totally unsubstantiated claims at this conference:

they are also claiming that they have ‘found that testosterone blocks the body’s ability to make glutathione’. Searching PubMed for ‘lupron glutathione’ returns no hits at all. So where have they found this? Under the stairs? Why aren’t they publishing this science if they’re so sure?

The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development, in 80 percent of the autistic children in their clinic.

Which is yet another unverifiable statistic. A search of PubMed reveals just one study relating to precocious puberty and autism and that showed _no_ link.

Mark Geier said laboratory tests at his clinic show that after just three months on Lupron, autistic children improved in dozens of cognitive and behavioral ways. This just seems another figure pulled out of thin air. Theres nothing anywhere to support such an idea and if they’re so sure why haven’t the Geier’s published?

“In terms of science, there is nothing suggesting the most basic elements of what they are talking about,” said Tom Owley, director of the Neurodevelopmental Pharmacology Clinic at the University of Illinois at Chicago and a specialist in the treatment of autistic children with medicine. “That there are high levels of mercury in autism — not proven! That they have precocious puberty — not proven!”

Hilariously…

Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment. David Geier said prominent scientists support their work and gave as an example Baron-Cohen, the autism expert who told the Tribune that the Geiers’ Lupron treatment filled him with horror.

So Mark Geier is either a liar or badly informed. I know what my opinion is.

AutismOne – the huge Chicago based autism woo fest kicks off today and the Geier’s are scheduled to talk about their miracle drug. They’ll be talking largely to people already sold on the idea that screwing with their kids bone density and hormonal growth is a good thing as long as it helps with their kids autism. Trouble is, it doesn’t.

Bravo Age of Autism

20 May

Yep, you read that correctly.

In a recent blog post on the Age of Autism blog, Dr Lorene E.A. Amet wrote about “Testosterone and Autism”. While much of the piece seems to be fighting a straw man (the theme is that Simon Baron-Cohen wants to use testosterone to screen for autism prenatally–without a link to the story or a quote from SBC, I found this difficult to wade through). But, as part of her piece, Dr. Amet wrote:

It is of great concern that studies on testosterone and autism are being misinterpreted, leading to the use of therapies aimed at disturbing steroid hormone production in individuals with autism. Currently, many autistic children may be being treated, without proof of safety and scientific and medical evidence of benefit, with a view to reducing their hormonal secretion of testosterone (Lupron Therapy, Spironolactone). The rationale behind advocating these therapies appears to be based on a misunderstanding of autistic behaviours and without systematic laboratory evidence of abnormal testosterone levels.

I had to double check that I was reading the right blog! I mean, Age of Autism allowed someone to state that the the rationale behind using Lupron to treat autism is “based on a misunderstanding”.

For those who are lucky enough to not know, Lupron as a treatment for autism is the pet project of Mark and David Geier. These are near heroes to the world of Age of Autism, due in large part to their promotion of REALLY bad epidemiology (for example, here, here and here on Epiwonk’s blog) to support the thimerosal/autism link.

The Geiers took the testosterone theory of Dr. Baron-Cohen and ran with it. Ran without knowing what they were doing or where they were going. Somehow they came to the conclusion that Testosterone binds with mercury in the brain, making it difficult to remove the mercury with chelation. Reduce the testosterone in the system, they guessed, and one could get the mercury out. Since in their world autism is caused by mercury, this will “recover” or “cure” people of autism.

Doesn’t make any sense to you? That’s because it doesn’t make any sense. At all.

Even though the idea of using lupron is misguided and potentially dangerous, that doesn’t mean that the groups that sponsor the Age of Autism blog would be willing to out the Geiers, even without specifically naming them, for the unscientific team that they are.

To be honest, I think the Age of Autism editors just missed that paragraph by Dr. Amet before approving it to be published (if they approve at all).

But, it’s there now for all to read. Bravo Age of Autism. Bravo for joining the world of people who find the Lupron Protocol to be based on a “misunderstanding” of the science.

Australian Autism Group block autistics

20 May

I got this from an online friend and member of ASAN Australia.

A4 LOCKS OUT AUTISTIC MEMBERS

STATEMENT CONCERNING A4 – AUTISM ASPERGER ADVOCACY AUSTRALIA

ASAN AUSTRALIA understands from its members that as of today all Autistic members have been exclude from the Steering Committee of A4 (Autism Asperger Advocacy Australia) which has now been renamed the A4 Advisory Group. Convener of the A4 Advisory Group Bob Buckley states in an email to all A4 members:

“A majority group decided to separate itself from a minority dissenting group (formerly in A4 SC) who do not accept and object to long-standing polices and practices of the A4 SC.”

This minority dissenting group just happens to contain all of the people with a diagnosed Autism Spectrum Disorder that sat on the A4 Steering Committee up until 18/5/09. This minority group has long been battling to be part of the national voice that is A4 and now finds themselves excluded from the very group that once claimed to represent them.

ASAN AUSTRALIA finds this situation unacceptable, reprehensible in fact. We suggest that in light of this move A4 not be seen as a legitimate voice for those on the autism spectrum. Nothing about us without us.

An ASAN AUSTRALIA Convener can be contacted for comment via autisticadvocacy@gmail.com

This is a very silly move. I’ve emailed A4 to see if they have any comment regarding the issue.

Jenny McCarthy’s son was never autistic?

20 May

A provocative piece in the National Post suggests that very thing.

It is not even certain that her child ever had autism; neurologists have pointed out that her description of the symptoms, and recovery, are more consistent with a rare disorder, Landau-Kleffner Syndrome. Ms. McCarthy may thus be trumpeting a “cure” for a disease of which she has no parental experience.

More than a little interested I tracked down this Letter to Neurology Today.

In After Vaccine-Autism Case Settlement, MDs Urged to Continue Recommending Vaccines (June 5), Dawn Fallik correctly cites Jenny McCarthy as a celebrity fanning the flames of the vaccine-autism link. McCarthy also makes parents think that autism can be cured with unproven treatments – as she claims is the case with her son – documented in her much publicized book, Louder than Words: A Mother’s Journey in Healing Autism (Dutton 2007).

Unfortunately, what the public does not realize as well as perhaps McCarthy is that her son was most likely misdiagnosed with autism in the first place. His disorder began with seizures and, subsequently, with the seizures treated, he improved. This would be more consistent with Landau-Kleffner syndrome, which often is misdiagnosed as autism.

Daniel B. Rubin, MD, PhD

OK, so next stop Landau-Kleffner syndrome.

It is characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electroencephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. The disorder usually occurs in children between the ages of 5 and 7 years. Typically, children with LKS develop normally but then lose their language skills. While many of the affected individuals have clinical seizures, some only have electrographic seizures, including electrographic status epilepticus of sleep (ESES).

…..

The syndrome can be difficult to diagnose and may be misdiagnosed as autism, pervasive developmental disorder, hearing impairment, learning disability, auditory/verbal processing disorder, attention deficit disorder, mental retardation, childhood schizophrenia, or emotional/behavioral problems.

And is Rubin right? Did Jenny McCarthy’s son Evan’s illness begin with epilepsy?

“I found Evan seizing in his crib,” she told ABC’s Deborah Roberts. “He was foaming at the mouth and his eyes rolled back.”

McCarthy rushed 2-year-old Evan to the hospital. After a few days of multiple seizures, doctors concluded that Evan had epilepsy, but McCarthy was not convinced. Her maternal instinct told her that something was still wrong.

Angry and skeptical of the medical advice she had been given, McCarthy went to a second neurologist who gave her an earth-shattering new diagnosis: Her son has autism.

So yeah he is. Evan’s first presentation was epilepsy.

Not exactly enough to give anything approaching a definite answer but still, interesting. I wonder who diagnosed Evan.

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