Archive by Author

Lessons from the Vaccine–Autism Wars

27 May

A very interesting (and long) read from Public Library of Science (PLoS) entitiled A Broken Trust: Lessons from the Vaccine–Autism Wars was published today. It takes apart the history of the vaccine/autism wars and tries to involve scientists on why they think – or what their particular discipline leads them to conclude – the autism/vaccine wars have become so protracted and bitter.

I’ve mentioned before – its always a bit of a strange, unreal sensation to see events in which you’ve been involved with – even as remotely as blogging about them – talked about as history. They say history is always written by the winning side. I hope articles like this don’t lead scientists to think that the war is over, the history is being written and they can go back to academia with no more comment necessary.

The PLoS article ends thusly:

Personal stories resonate most with those who see trust in experts as a risk in itself—a possibility whenever people must grapple with science-based decisions that affect them, whether they’re asked to make sacrifices to help curb global warming or vaccinate their kids for public health. Researchers might consider taking a page out of the hero’s handbook by embracing the power of stories—that is, adding a bit of drama—to show that even though scientists can’t say just what causes autism or how to prevent it, the evidence tells us not to blame vaccines. As news of epidemics spreads along with newly unfettered infectious diseases, those clinging to doubt about vaccines may come to realize that several potentially deadly diseases are just a plane ride, or playground, away—and that vaccines really do save lives.

I don’t disagree with any of that but I’ll now directly quote comment No.2 left after the PLoS article. A comment posted by a user called ‘bensmyson’ (and already I’m sure the battle hardened amongst us have recognised the type of person with a username like that).

Not that anything I say matters, but vaccines are not safe. My son at 12 months received ProQuad, a MMRV, later that month Merck pulled it from the market. My normally developed child with superior language skills developed encephalitis and as a result lost all those skills and developmental milestones and regressed into what has been diagnosed as autism. I know they aren’t safe because my son suffered a brain injury as a result. According to VAERS, 8 people have died because of ProQuad, Merck filed two of those reports themselves.

I’m not a scientist, just a parent of a child that got lost immediately after his 12 month vaccines.

With all due respect to the PLoS article which I really did enjoy reading and made very good points, I think the main point they either missed or that they are too polite to state out loud is that quite a lot of people _really don’t want_ to think it wasn’t vaccines.

The quoted comment demonstrates a lot of the hallmarks of what I think of as a sub-genre of anti-vaccine ideology – the autism antivaxer.

1) The immediate portrayal of themselves (not their child you’ll note) in the role of victim (‘Not that anything I say matters…’)
2) A coincidental regression into autism following vaccination with overtones of fault on the behalf of a vaccine maker/doctor/scientist
3) A statement that they _know_ (not think, not believe, not ‘are sure’) vaccines aren’t safe because their child _was_ damaged ) _as a result_ (‘I know they aren’t safe because…’) of having one. Note the lack of any sort of logic or requirement for evidence.
5) A reliance on a ‘sciency’ sounding method of backup which in reality offers no such thing (‘According to VAERS…’)
6) An emotive sign off with an appeal to false knowledge (‘I’m not a scientist, just a parent…’)

These are people who have spent a long time online and offline sharing time with other people of a like mind. They have stopped thinking critically and have started thinking communally. Stepping away from the voice of the community would be dangerous for both their continuing friendships and also for their own state of mind, therefore it is easier all round to simply lock out everything that presents any sort of difficulty or challenge to their belief system. If PLoS or anyone else thinks that these people (those clinging to doubt about vaccines) ‘may come to realize that several potentially deadly diseases are just a plane ride, or playground, away—and that vaccines really do save lives.’ then I’m afraid they are deluding themselves. I’ve had conversations with people just like ‘bensmyson’. Here’s a choice quote from one such debate from Twitter:

kids without #vaccinations more likely to get whooping cough. isn’t that better than getting shot up with #antifreeze ?

Doesn’t that make your head hurt just reading it? This person is happy to announce that:

1) There is anti-freeze in vaccines, which there most definitely is not.
2) Its better to get whooping cough than a DTP jab. I wonder if the poor parents of Dana McCaffery feel that way?
3) The reason its better to get whooping cough (a potentially fatal illness) is that the vaccine has antifreeze in it (which it doesn’t).

The level of arrogance, conspiracy mongering, self-pity and anger amongst too many of these people is so very much more than the PLoS article accounts for. Good as the article is, I fear its far too early to begin the dissection of this stage of the recent past.

Edited for typos via email by Sully. Ta 😉

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

What do corrupt politicians tell us about autism policies in the UK?

26 May

One strand of thinking in those who promote the autism-MMR vaccine hoax in the UK is that the political system is corrupt. At the worst level this leads to conspiratorial thinking, as in this statement from an Independent leader from February 24th 2004:

Are we wrong to detect the distant whirr of the same spin spin machine that so recently set about destroying the reputations of David Kelly, Andrew Gilligan and others?

John Stone, an active JABS (the UK’s leading anti-vaccine site) activist who now writes for Age of Autism, recently posted a call to arms by Alison Edwards on the MPs’ expenses controversy. Her post reminds us that much of the controversy about MMR vaccine is possibly displacement activity after struggles to obtain help and support. After a go at MPs’ expenses, she draws her inspiration from her son.

My son is my inspiration, he has no idea of the anger I harbour at what I have been forced to endure since the day his MMR left him unable to control his bowels. Not to mention the other battles for services and therapies, the list of refusals is a familiar one to anyone caring for an autistic or disabled child. All we can do it watch as our young morph into adults before our eyes. Yet our claims to assist the most vulnerable with their most basic needs, go unheard.

WE, THE PEOPLE, DEMAND THE DISSOLUTION OF PARLIAMENT.

Being angry about MPs expenses is a reasonable position, but there are many other issues others have been fighting for, and they should feel equally aggrieved. Think of any lobby group, and you can probably come up with a reasonable view that more attention should have been paid to it, than were paid to the acquisition of LCD TVs, the cleaning of moats, and other such pathetic squandering of taxpayers’ money.

The corruption is spread throughout the parties, and throughout MPs of all views within them. For example, Julie Kirkbride is a UK MP who has expressed views on MMR vaccine, to the detriment of an autism campaign launch; a microcosm of the general effect the MMR-vaccine-autism hoax has had on autism awareness in the UK:

she had chosen the same day to hold her own conference at Westminster to highlight alleged links between autism and the controversial MMR vaccine.

“I am furious that a conference that could have been held yesterday or could have been held tomorrow is being held on the day that we are actually trying to focus, for once, on the needs of autistic people instead of this debate over MMR,” he told BBC Radio 4’s Today programme.

“This is the first major conference of autism awareness year. It has been organised for months. To detract attention from it today of all days is, I think, pretty silly.”

Julie Kirkbride is now under intense pressure over expenses. Does this have any bearing on her position on MMR vaccine? Not all all.

The expenses saga may remind us of the sense of entitlement of UK MPs and their failure to police their own behaviour, but it tells us nothing about public policy on autism or vaccines.

Is lupron just a chemical restraint?

26 May

Since it was first proposed by Mark and David Geier, Lupron therapy for autism has been criticized heavily. Do a google search–if your results are like mine, the first hit is a blog post by Kathleen Seidel “Playing with Fire“. Ms. Seidel has done much to expose the questionable methods used by the Geiers to promote Lupron as a therapy for autism. Her list of Lupron links is quite valuable for anyone considering this therapy. Top amongst those is a blog post by Prometheus at the Photon in the Darkness blog, exposing the questionable science behind the supposed testosterone/mercury connection.

Lupron is a drug which shuts down sex hormone production in the body–temporarily. Because of the hormone reduction, lupron is used in the treatment of prostate cancer in men and fibroids in women. The only approved use for children is to treat “precocious puberty”–i.e. the onset of puberty too early. It is useful because it temporarily reduces hormone production.

But, that isn’t what the Geier’s proposed. They didn’t start out to treat precocious puberty. It is worth looking at the history to see how much the Geiers’ stories have changed. There appear to be three stories now.

Story one: mercury binds to testosterone making it difficult to chelate out of the brain. The science backing this up was ridiculous (unless you think your brain is a vat of boiling benzene). Seriously, I am embarrassed for the Geiers. Even in the world of alternative medicine, this was junk science.

Story two: autistic kids almost all have “precocious puberty”. Odd that no one else has ever seen this, but it gives a medical reason to prescribe Lupron (one that will pass insurance scrutiny).

But, both “story one” and “story two” seem to be in the past. Yes, there is mention of precocious puberty in the recent articles in the Chicago Tribune (‘Miracle drug’ called junk science). But, here is a paragraph worth reading:

By lowering testosterone, the Geiers said, the drug eliminates unwanted testosterone-related behaviors, such as aggression and masturbation. They recommend starting kids on Lupron as young as possible and say some may need the drug through the age of puberty and into adulthood.

Does that sound like (a) they are treating mercury poisoning or (b) they are treating precocious puberty?

Here is a quote from Anne Dachel’s rather weak defense of the Geiers:

One of the issues in the stories is the use of Lupron to treat aggression in autistic children who have high levels of testosterone. This is a huge controversy. The treatment is slammed as “unproven and potentially damaging” in the Tribune.

Does that sound like (a) they are treating mercury poisoning or (b) they are treating precocious puberty?

The Rev. Lisa Sykes, in the comments to the Tribune article wrote:

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.

Does that sound like (a) they are treating mercury poisoning or (b) they are treating precocious puberty?

Remember, this is the same Lisa Sykes whose video interview promoting Lupron talks about finding a way to get the mercury out. But, now it is “high testosterone”. Sure, she asserts (without any support) that this is caused by mercury poisoning. Anyone want to guess who “clinically diagnosed” the mercury poisoning, by the way? I know who my money is on.

Before I go too far off track, let’s bring this back to the big question–if the story is no longer “mercury poisoning” or “precocious puberty”, is Lupron being used for any other purpose than controling behavior through limiting testosterone levels? And, at 10 times the normal dosage used for precocious puberty, isn’t this a rather handed approach?

Lupron has been called a “chemical castration” drug due to the fact that it shuts down the body’s testostoerone production and has been used to control behavior in sexual predators. Lupron obviously will have profound effects on the behavior of people–children or adult, autistic or not.

If testosterone control is the real purpose for the “Lupron Protocol” (as the Geiers have named it) shouldn’t we then ask: isn’t this just a form of restraint?

Keep in mind, Lupron only works temporarily. Stop giving the Lupron shots and testosterone levels will rebound. Remember this quote from the Tribune story?

They [the Geiers] recommend starting kids on Lupron as young as possible and say some may need the drug through the age of puberty and into adulthood.

Anyone remember how the “mercury toxic” children idea was perpetuated? Since standard tests don’t show high levels of mercury, “challenge” chelation tests were used. When real toxicologists test children shown to be “mecury intoxicated” by alternative medical practitioners, the real answer is no mercury poisoning. Is the same pattern happening in the world of testosterone testing?

Let’s check the patent application the Geiers’ submitted. The first patient mentioned in the application is “child X”. Child X had serum testosterone levels of 25ng/dL. The reference range was 0-25ng/dL. In other words, the kid was within normal ranges.

How about the other patients? Child Y, for instance? Again, within normal ranges.

Child Y’s total serum testosterone was determined to be 20 ng/dL. The reference level of total serum testosterone for a male child of Child Y’s age at this laboratory was from 0-20 ng/dL.

“Child A” was slightly above normal ranges.

Laboratory analyses for androgen metabolites revealed an elevated serum total testosterone=23 ng/dL (age- and sex-adjusted LabCorp reference range=0-20 ng/dL)

Child B was higher than the reference ranges.

Laboratory analyses for androgen metabolites revealed an elevated serum testosterone=18 ng/dL (age- and sex-adjusted LabCorp reference range=0-10 ng/dL)

Now, here is one that amazes me:

Additionally, analyses of Child D’s blood androgen metabolites revealed a serum testosterone=153 ng/dL (age- and sex-adjusted LabCorp reference range=0-350 ng/dL) and serum/plasma DHEA=291 ng/dL (age- and sex-adjusted LabCorp reference range=183-383 ng/dL) within their respective reference ranges.

After extensive discussions with his parents concerning the risks, benefits, and alternative treatments available, a decision was made to place Child D on a course of LUPRON® therapy.

It doesn’t appear to matter. If a child is within the reference range, slightly above, or above, the answer is the same: treat with Lupron.

So, I again pose the question: is Lupron a chemical restraint? I will add a further question: is it being applied to children whose testosterone levels are not high?

Jenny McCarthy Blocked Me on Twitter!

26 May

A fascinating Guest Blog piece here from Dawn Crawford, Communications Manager for the Colorado Children’s Immunization Coalition on their Twitter activities.

How One Small Nonprofit Irked a MTV Star

It’s amazing how one simple action can result in a landside of meaning.

On May 14, I realized that the organization that I work for, the Colorado Children’s Immunization Coalition (CCIC), aka ImmunizeCOKids on Twitter, was blocked by Jenny McCarthy, aka JennyfromMTV on Twitter.

Okay, so that’s a little odd. That is the only user I know that blocks CCIC.

Sure, CCIC has put out some tweets about Jenny. She has made herself a major target for the pro-vaccine movement. What is really odd is that the block was in response to only three tweets with her user name in it. In the name of complete transparency, I’ve included the actual tweets:

ImmunizeCOKids: @shuwu – great work – “Open Letter 2 @Oprah” poetic, smart & dead-on post about deal w/ anti-vax @JennyfromMTV http://ow.ly/6uY7 (May 14, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1796433253 )

ImmunizeCOKids: Poetic, smart and dead-on post about @Oprah signing deal with anti-vax @JennyfromMTV “Open Letter to Oprah” http://ow.ly/6uY7 (May 13, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1776457638 = 13 RTs of this ow.ly shortener)

ImmunizeCOKids: Jenny McCarthy is on The Doctors TV show today – very inflammatory. She is on twitter now too @JennyfromMTV (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1716401176 )

And in all fairness, here are the tweets that just included her name and not her Twitter ID:

ImmunizeCOKids: Weigh in! Future of BioPharma: Jenny McCarthy vs Autism and its effects on the public http://ow.ly/6ggj (May 11, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1765254086)

ImmunizeCOKids: Why is Oprah Winfrey promoting vaccine skeptic Jenny McCarthy? Slate Magazine http://ow.ly/5rFB – thanks @JeffStierACSH & @bobfinn (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1718911892)

ImmunizeCOKids: Agreed on the fiction of vaccines = autism part. Thanks Babble! “Jenny McCarthy To Get Her Own Talk Show?” – FameCrawler http://ow.ly/5gZ7 (May 5, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1708699412)

Social media is a very important strategy for CCIC’s mission of increasing vaccination rates to keep Colorado’s kids healthy. CCIC engages in Facebook, Twitter and YouTube to share our message of confidence in the safety of vaccines. Specifically, we use Twitter to encourage and support the majority of parents who are vaccinating their children, confront misinformation about vaccine safety and share articles from a wide array of sources.

Blocking on Twitter? What’s the Point

As someone who lives and breathes social media (I author three Twitter accounts), the blocking function on Twitter has always perplexed me. Why would you ever want to sever a line of communication in this way?

For those unfamiliar with the function, the block feature on Twitter ensures that you and the blocked user do not follow each other or direct message each other. It doesn’t prevent the blocked user from visiting the user’s profile or writing ‘@ replies’ about them. It just ensures that the user is blissfully ignorant of all the comments the blocked user is continuing to add to Twitterspace. This is from Twitter on their blocking function:

Are you sure you want to block ImmunizeCOKids? Here’s what blocking means:

You will no longer show up in the blocked person’s list of friends.

Your updates won’t show up on the blocked person’s profile page.

The blocked person will not be able to add you as a friend.

For us at CCIC, it is the rich dialogue that makes Twitter so powerful. We receive tweets at least once a week from parents telling us that we are liars and that they staunchly believe that vaccines are dangerous or that vaccines cause autism. We want to keep the dialogue open with all parents. We want to know what exactly is frightening parents and what concerns them about vaccines. It is such a great asset to be connected with concerned parents, have a respectful conversation that educates and empowers parents to make an informed decision about the health of their children.

Moreover, a ‘brand’ like Jenny McCarthy blocking CCIC on Twitter has interesting social media branding implications. It encourages us to assume that she isn’t open to any opposing views. It tells us that contrary to what she says in the media, she doesn’t want a dialogue about this issue. She wants a platform.

David and Goliath

So why are we so excited about being blocked by Jenny? It’s that she cared enough to take the time to block CCIC. It’s that she cared enough about what we are saying to end the conversation.

It’s a lot like David and Goliath. Jenny is a super-human symbol of the anti-vaccine movement (Jenny states that she is ‘anti-toxin’ and not against vaccines- aren’t we splitting hairs?). CCIC is a small but vocal organization in Colorado making sure physicians, nurses and public health providers get the vaccines, resources, and continuing education they need to keep kids healthy. Our total budget amounts to about 1,400 copies of Jenny’s latest book (which not a dime of that budget comes from pharmaceutical companies, btw). CCIC is insignificant in Jenny’s world but important enough to heed a reaction.

Can this open a dialogue?

A good vaccine advocate friend pointed out that this might be an opportunity to have the sides of the great vaccine divide sit down and have an open, real conversation. We think this is an opportunity to come together on the one issue that we can agree on which is protecting the health of children.

So in the end, this is an honest, open invitation to Jenny McCarthy to have a conversation. We both want to do what is right for children; we just have different paths to the same goal. Let’s find a common ground of respect and move forward in protecting children.

Until then, we’ll be here in Colorado protecting children from disease just like we do everyday. Jenny, we hope to hear from you soon. You know where to find us on Twitter.

About the Author: As the Communications Manager for CCIC, Dawn Crawford leads all messaging for the Colorado Children’s Immunization Coalition (CCIC). CCIC is a state-wide nonprofit that ensures that physicians, nurses and public health departments get the vaccines they need to keep Colorado’s kids healthy. CCIC is very active on the ‘interwebs’ as an advocacy organization promoting the prevention of vaccine preventable diseases. You can find them on Facebook, Twitter and YouTube.

Why lupron “franchises” for autism?

25 May

You know how it is when you read a story filled with red flags. A lot of them are obvious and hit you right away. Others sit in the back of your brain until enough pieces are put together and the idea springs forward, “that’s what’s wrong!” Such was the case with the Tribune stories on the Geiers and their “Lupron Protocol”. The high costs were an obvious red flag. I mean, $12,000 in tests and $6,000 a month in prescriptions? But, one red flag that took a while to process was the existence of the “franchises”. From the Tribune story:

…the Geiers have opened eight clinics in six states, including one in Springfield and their arrangement with Eisenstein, which he described as a “franchise” of sorts.

and

Some of the Geiers’ clinics are headed by doctors; a psychiatrist runs the Springfield clinic. But that is not always the case. The clinic in Indianapolis is run by an X-ray technologist who has an autistic child.

In Washington state, the head is a health advocate and documentary filmmaker.

OK, the existance of “franchises” run by x-ray technologists and documentary filmmakers is a pretty clear red flag.

But, take a moment and recall: what is the Geiers’ rationale for prescribing lupron? The answer: the Geiers claim that autistic children have a very high incidence of precocious puberty. They are not treating autism, they say. No, they are treating the precocious puberty, with Lupron, a drug which reduces testosterone production in the body. At least, this is what they tell the insurance companies in order to get reimbursements for the parents.

Recently it hit me. Why the franchises? Precocious puberty is diagnosed and treated by pediatric endocrinologists. Heck, pediatricians can do an initial diagnosis.

Is there a shortage of pediatric endocrinologists in, say, Chicago? (I counted 12 in that list in Chicago proper).

If this were really about autistic kids almost all having precocious puberty, Dr. Geier’s talks would have one simple tag line: Get your kid to a to the nearest pediatric endocrinologist for a full work up.

Instead, his message seems to be: call me (someone who doesn’t specialize in pediatric endocrinology) or wait until I establish a franchise in your home town.

That would be one giant red flag for me if I were considering using the Geiers.

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.

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