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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?

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.

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.

Autism Science Foundation, Science and Sandwiches

14 May

May 12th saw the first ‘science and sandwiches’ day. Featuring Dr. Ami Klin of Yale who recently published in Nature, the day was session was apparently a great success.

I was heartened to see ASAN‘s Ari Ne’eman in attendance as this reinforced my opinion that ASF are determined to include autistic people and listen to an autistic agenda. Further reinforcement came from the reporting page on the ASF website:

Discussion revolved around this new work’s [Klin’s study] role in both diagnosis and treatment, as well as the importance of respecting the individuality of people with autism.

Inserts mine

Good. Very good to hear. Two thumbs up. Excellent. Round of applause. Should I go on…? No, possibly not.

Anyway, this has been a good year for autistic advocacy I think. A major website has actively sought out and employed an autistic writer for its autism pages and now what will be a major scientific force within autism is listening directly to autistic people. Long may it continue.

Recovery from autism

11 May

At IMFAR, a new abstract is available about recovering from autism. Its also covered by AP in a slightly oblique way. For example, the AP story states:

…at least 10 percent of children with autism can “recover” from it — most of them after undergoing years of intensive behavioral therapy…

And yet I can’t see ABA mentioned in the abstract. Of course, it may be mentioned in the whole paper but its an odd assumption for AP to make.

The other weird thing is the quote from Geraldine Dawson of Autism Speaks:

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein’s research a breakthrough.

How so? Its pretty much a replication of work done in December 2008 by Dr Molly Helt. I mean OK it narrows the recovery band from between 10 to 20% of kids from Helt’s figures of 3 – 25% but that hardly makes it a breakthrough. Just a refinement.

Interesting comments abound all over the web. One of the leaders of a large autism/vaccine group says:

Every parent I know who practices biomed treatment also uses some form of educational intervention, whether it is ABA, Floortime, SonRise, etc…

Now lets compare that statement to Helt’s work:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

and in a further clarification in an email to me:

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

So if every parent this autism/vaccine leader knows practices educational intervention and the claim is that these kids recover…but Helt’s team found no evidence that biomedical treatment exists in recovered kids, I think that tells its own story.

Autism epidemic in Sri Lanka?

8 May

Well, that’s what you might read if/when some other blogs see this new study:Screening of 18-24-Month-Old Children for Autism in a Semi-Urban Community in Sri Lanka. Soon to come out in the Journal of Tropical Pediatrics.

Take a look at the abstract:

All children aged 18-24 months in a defined geographical area were initially screened for autism, using ‘Red Flag’ criteria. All the children with one or more positive ‘Red Flag’ signs were further screened using Modified Checklist for Autism in Toddlers (M-CHAT) translated to Sinhala, followed by a comprehensive clinical assessment. Of a sample of 374 children, ‘Red Flag’ signs were positive in 28 (7.4%). Four children received a diagnosis of autism on clinical assessment giving a prevalence of 1.07% or 1 per 93 in the 18-24-month age group. Sensitivity of M-CHAT was only 25%, and specificity 70%. The high prevalence detected strongly justifies early community-based screening, but a culturally sensitive screening tool needs to be developed for Sri Lanka.

Let me start by congratulating the researchers. We need a lot more information about autism around the world. So far, most of the data is from the US, Canada and Western Europe. We need to know more about autism in other countries, and, more importantly, they need to know more about what is happening in their own countries.

The idea that a “culturally sensitive screening tool needs to be developed” is one that I would like to see explored. The IACC Strategic Plan had initiatives which were directed at screening diverse populations.

I find it interesting that they worked with children so young (18-24 months old). It will be interesting to see how stable those diagnoses are over time as well as if they missed anyone.

The autism prevalence is about 1.07%. One reason I decided to blog this is because it fits with a prediction made by Joseph over 2 years ago in his blog post Moving Toward a New Consensus Prevalence of 1% or Higher.

We do, indeed, appear to be moving towards a consensus of about 1% (or somewhat higher) for autism prevalence. It’s quite interesting to see, and kudos to Joseph for pointing this out 2 years ago.

Generation Rescue: a dishonest autism charity?

6 May

Generation Rescue has a long history of promoting bad science. They even have tried their hand at it themselves before, with a phone survey that was so bad it would have earned a college freshman in epidemiology a failing grade.

So when they came out with their own “study” of vaccination rates around the world, you can imagine I didn’t expect it to be good. In fact, I just avoided it altogether until they sent me an email telling me how good it was.

So I looked.

It was worse than I expected. Far worse.

The “study” is here. Generation Rescue (GR) looks at the vaccine schedules for multiple countries and compares this with the infant mortality rate and autism rates in those countries.

I read it and, Oh…my…god… I expected bad science and poorly/biased interpretations. Instead, what I found was pretty clear evidence that Generation Rescue is knowingly distributing misleading information.

Before you get worried that this post is way long and question whether you really want to read the details, here’s the short version:

1) They compare infant mortality rates between the US and other countries–even though it is clear (according to their own expert no less!) that the US uses different criteria for infant mortality and it isn’t accurate to compare the US infant mortality to that in other countries.

2) They compare autism rates amongst countries to show the US has the highest rate, suggesting that the higher the number of vaccines the higher the autism rate. They just “forget” to tell you that the prevalences for the other countries are from old studies. We can debate why the reported autism prevalence is going up with time, but no one debates that the older studies report lower prevalences than we see now. So, why does Generation Rescue compare prevalence in the US using 2002 data for kids born in 1994 with, say, a Finnish study using 1997 data on kids born as early as 1979? I consider them very biased, but not incompetent enough to miss those fatal mistakes in their study.

3) They claim that the US has the highest vaccination rates and the highest autism rates. They conveniently ignore prevalence from Canada and the UK, which have comparable prevalences to the US and much much lower numbers of vaccines. Yes, you read that right, they left out the well known studies that would show that their conclusions are nonsense.

The worst part is that it is almost certain that Generation Rescue didn’t make an honest mistake. These are so obvious that whoever wrote that “study” had to know he/she was producing what amounts to the lowest form of junk pseudoscience.

For those who want the gory details, here they are:

Infant Mortality Rates

Generation Rescue points out that the reported infant mortality rate is highest in the United States, which also has the most childhood vaccines. All well and good, but can we really compare the infant mortality rates from country to country?

When I type infant mortality rate into a google search, the first hit is a Wikipedia page which, as it turns out, addresses exactly this question.The answer is a resounding “NO”, we can’t compare the US infant mortality rate with that of other countries.

While the United States reports every case of infant mortality, it has been suggested that some other developed countries do not. A 2006 article in U.S. News & World Report claims that “First, it’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless.

So, who wrote that 2006 article in US News & World Report?

Bernadine Healy.

Yep, the same Bernadine Healy that is Generation Rescue’s favorite “mainstream” doctor.

One has to believe that GR saw that article in Wikipedia and the US News article. They are, after all, Google Ph.D.’s. Given the author was Bernadine Healy, they have to have considered it accurate, don’t you think? And, yet, GR conveniently forgets to mention the differences in how the US and other countries count infant mortality in their vaccines cause autism “study”.

Autism Rates 1: Autism Prevalence by country

Start with the conclusion of the Generation Rescue “study”:

This study appears to lend credibility to the theory that the U.S. vaccine schedule is linked to the U.S. epidemic of autism, particularly when compared to the published autism rates of other countries.

Given this bold claim, it is critical that they use good data for the autism rates. By “good” I mean that they need data that they can accurately compare to the CDC reported prevalence of 1 in 150. That data was taken in 2002 on 8 year old children. I.e. kids born in 1994. Since reported prevalence numbers are going up with time, it would be very misleading if they were to use, say, prevalence numbers from the early 1990’s, wouldn’t it?

Any prevalence that they use would have to use prevalence numbers from about the same time, on kids of about the same age.

Here’s their table comparing the autism rates.

gr_table3

Let’s take a look at the studies they cited for their numbers, shall we?

Iceland: Prevalence of Autism in Iceland. This 2001 study uses kids from birth years 1984-1993. I.e. most (if not all) of the kids are from the time before the big upsurge in autism diagnoses. Hardly a good comparison to the 2002 CDC study, eh?

For Sweden, they use a paper called, “Is autism more common now than 10 years ago?” from The British Journal of Psychiatry. Published in… 1991. That’s pre DSM-IV. Amongst other problems, they won’t be including the other PDD’s in the autism spectrum, like the CDC study does. Besises, the kids from the CDC study weren’t even born yet, it was so old! Is there any wonder that the Swedish study shows a lower prevalence?

For Japan, they use a paper titled Cumulative incidence and prevalence of childhood autism in children in Japan. The study uses data from 1994 on kids who were born in 1988.

Are you starting to see the pattern here? Time after time, GR is comparing US 2002 prevalence data to much older data from other countries. Let’s go on:

For Norway, they use the paper Autism and related disorders: epidemiological findings in a Norwegian study using ICD-10 diagnostic criteria. The paper was published in 1998 on children 3-14 years of age. Simple math suggests they had kids with birth years going back to at least 1984 in that study. Hardly a good comparison to kids born in 1994.

For Finland, they use Autism in Northern Finland. Here is an updated version from 2005. The study uses data from 1996-97, on kids up to 18 years old. I.e. they are using kids that were born as early as 1979. Also, they are using data on patients from hospital records who used “communal health services”. Sounds a lot like “inpatient”–one of the critiques that GR uses against studies from Denmark. Also, the Finland study didn’t include Aspeger syndrome, as that was a new diagnosis at the time. Hardly a good comparison to the CDC study.

For France, they use Autism and associated medical disorders in a French epidemiological survey. This uses “French children born between 1976 and 1985”.

For Israel, they use Autism in the Haifa area–an epidemiological perspective. This paper looks only at autistic disorder (no PDD-NOS, no Aspergers, no Rett’s no Childhood Degerative Disorder). Right off the bat that reduces the prevalence and makes it impossible to compare the the CDC 2002 study. The Israell study also is, you guessed it, based on kids older than the CDC study: children born between 1989 and 1993.

Last, Denmark. If you’ve been following the thimerosal debate, you know this is going to be ironic. They use Madsen’s paper, Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data. Generation Rescue refers to this study (incorrectly, I might add) as “This one goes beyond useless”. I guess “useless” is only when it is used to refute the thimerosal hypothesis? Come on, GR, this level of hypocrisy is just painful.

Missing Studies

There are some very well known studies that Generation Rescue somehow forgot to include in their “study”. Could this be due to the fact that they are very good counterexamples to the vaccine-hypothesis ? Let’s look at some and see, shall we?

United Kingdom: Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence ( study performed in 2002 with a prevalence of 1 in 170), and Pervasive developmental disorders in preschool children (study performed in 1998/9 with a prevalence of 1 in 160).

Canada: Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations (birth years 1987 to 1998. Prevalence 1 in 154).

Wow, the United Kingdom and Canada have prevalence numbers comparable to those in the US!

So, let’s complete the comparison, shall we? What is the vaccine schedule like for the UK and Canada? Using the Generation Rescue “study” we get 20 vaccines for Canada and 21 for the UK.

Wow, that’s way less than the US (with 36), and they have the same autism prevalence as the US? How could that be? Is it, perhaps, that the autism is NOT related to the number of vaccines in a given country’s schedule?

Anyone doubt why GR left the UK and Canada off their table of Autism Prevalences Around the Globe? No, I am not giving them a pass that this could be an honest mistake.

To quote Generation Rescue’s top funny guy (Jim Carrey), “How stupid do you think we are?”

Jenny Mcarthy on HBOT

6 May

Given the recent death of a woman and serious injury of a child in a hyperbaric chamber. It is perhaps worth highlighting Jenny McCarthy’s recent “tweet”.

Im inside a hyperbaric chamber. This thing makes me feel amazing.

If a vaccine “exploded” killing one person and critically injuring another with such clear causality, one can imagine McCarthy would be the first to stand up and denounce it. Instead, as one commentator says it’s “All risk, no benefit” when it comes to the quackery surrounding autism, and that’s before you risk dreadful gluten-free and casein-free cup cakes. Meanwhile, despite having no evidence, McCarthy suggests vaccines are dangerous toxic products and may be responsible for the start of an explosion of preventable childhood diseases.

Fire, Fatal Injury, and Claims of Certification in an Independent HBOT Clinic

4 May

By now, most readers of LB/RB have learned about the critical injury of an Italian 4 year-old (Francesco Martinizi), and the death of his grandmother, which occurred as the result of an apparent flash fire/explosion at a hyperbaric oxygen therapy center in Florida.

Media Story

Apparently, the boy was likely being treated for Cerebral Palsy.

Media Story

Cerebral Palsy is not an Undersea and Hyperbaric Medical Society (UHMS)-approved indication for the use of hyperbaric oxygen therapy, and this was recently commented on by Dr. Charles S. Graffeo in an article in the New York Times online by Jane E. Brody.

He cautioned patients to steer clear of independent hyperbaric centers owned by a single doctor or small medical group that is not affiliated with a major hospital or medical school. Commenting on claims commonly made by such clinics, he said: “No legitimate organization would condone treating cerebral palsy with hyperbaric oxygen therapy. I haven’t seen anything that is even potentially promising to support such a use. If I had a C.P. child, I wouldn’t even consider it.”

Given these recent comments in the New York Times article, I wanted to learn a little more about this Florida hyperbaric oxygen therapy clinic – Ocean Hyperbaric Neurologic Center (OHNC). It’s a clinic that apparently may also use HBOT to treat autism. The clinic appears to be exactly what Dr. Graffeo cautioned about. It seems to be an independent, privately-owned hyperbaric center, and according to the clinic’s website, appears to have a single MD on the board and staff.

The medical director listed at the OHNC’s website is George F. Daviglus.

Dr. Daviglus is a licensed medical doctor in the state of Florida, and apparently, as allowed for by Florida law, may not carry medical malpractice insurance.

Additional information from the OHNC’s website tells us the following about Dr. Daviglius:

Dr Daviglus performed duties as co-director of Ocean Hyperbaric Neurologic Center since 1998 and is now proud director of the clinic. He is certified in Hyperbaric Medicine by the Undersea and Hyperbaric Medical Society and is Diplomate of the American Board of Surgery, Thoracic & Cardiovascular. Additionally, Dr Daviglus holds teaching and attending medical positions at numerous medical institutions including Thoracic & Cardiovascular Surgery at VA Hospital, Jackson Memorial Hospital and University of Miami School of Medicine.

While seemingly innocuous (and likely reassuring to potential patients), it’s probably somewhat misleading because it’s stated that Dr. Daviglus is “certified” in Hyperbaric Medicine “by the Undersea and Hyperbaric Medical Society”. The UHMS is apparently not an organization that “certifies” the medical expertise of physicians in hyperbaric oxygen therapy like a medical specialty board at all. From the UHMS website page that elaborates on physician certification:

Physician Certification

Physicians can obtain board certification in Undersea and Hyperbaric Medicine through the American Board of Emergency Medicine (ABEM) and the American Board of Preventive Medicine (ABPM), with a current certification from one of the 24 primary member boards of the American Board of Medical Specialties (ABMS). Physicians must submit an application to the board through which they are certified. Physicians certified by an ABMS member board other than ABEM and ABPM and who fulfill the eligibility criteria must apply to ABPM. Upon successful completion of the examination, certification is awarded by the board through which the physician submitted the application.

So it appears that “certification” in Undersea and Hyperbaric Medicine is actually the responsibility of ABEM and ABPM, not the UHMS. Both the ABEM and the ABPM are member boards of the American Board of Medical Specialties. If a physician is certified by either the ABEM or the ABPM (or any other ABMS member boards), a search at the ABMS website should reveal this. A search for physicians with the last name “Daviglus” turns up the following:

George F. Daviglus

American Board of Surgery
Surgery – General (General indicates Primary Certificate)

American Board of Thoracic Surgery
Thoracic Surgery – General (General indicates Primary Certificate)

There was nothing returned for ABEM or ABPM, nothing about Undersea and Hyperbaric Medicine, and Dr. Daviglus does not appear on UHMS-maintained lists of physicians certified by ABEM and ABPM.

The UHMS does provide accredidation for hyperbaric facilities themselves – The Ocean Hyperbaric Neurologic Center is not listed by the UHMS as a UHMS-accredited facility.

Additionally, the UHMS appears to have some potential affiliation with the National Board of Diving and Hyperbaric Medical Technology (NBDHMT), the board that certifies hyperbaric technicians, diving medical technicians, and hyperbaric registered nurses.

While the two technicians listed on the Ocean Hyperbaric Neurologic Center’s staff page do appear certified as stated, a search for “Daviglus” turns up zero results at the NBDHMT website for CHT, DMT, or CHRN.

It should also be noted that the UHMS does certify “Diving Medical Examiners”. Physicians receiving this education and certification provide medical assessments of “fitness for diving”. Dr. Daviglus does not appear on the list of UHMS-certified Diving Medical Examiners.

It seems possible at this point, that the Ocean Hyperbaric Neurological Center webpage about the staff may not reflect what some would expect with such a claim of certification.

Although unconfirmed, it may be that the director of the clinic possesses a certificate (or certificates) of completion from UHMS-approved Hyperbaric Medicine CME coursework for physcians. Such courses do have the objective of providing education on the subject and often include the word “certification” in the course title. While not exactly “certification in Hyperbaric Medicine by the Undersea and Hyperbaric Medical Society”, according to one of the providers of this type of education, an introduction to hyperbaric medicine course “provides the credentials recommended for Physician Hyperbaric Supervision”.

If this is the extent of the “certification” held by Dr. Daviglus in hyperbaric medicine, the clinic’s website might better serve those seeking to clearly understand the staff’s relevant training and “certifications” by adding some clarification. Then again, if something along the lines of completion of one or two weeks worth of CME coursework in hyperbaric medicine represents the extent of the “certification” in hyperbaric medicine held by the director of this clinic, this may contribute to an explanation of why this facility appears to treat conditions like cerebral palsy and autism in the first place – conditions for which there appears to be very little legitimate scientific support behind the use of hyperbaric oxygen therapy (some have even called the use of hyperbaric oxygen therapy for such conditions, “quackery”).

Yes, this accident (fire/explosion) is tragic, very tragic. If Francesco indeed survives the injuries he’s apparently sustained, the next couple of months are likely to be very very rough. The situation certainly isn’t helped by the fact that there probably isn’t much in the way of good scientific evidence to support the notion that little 4 year-old Francesco should have ever been in such a facility in the first place.

Author Note: “Do’C” is a nickname, short for Dad Of Cameron. Do’C is not a physician or licensed healthcare provider of any kind. Along with occassional guests, Do’C writes the Autism Street blog.

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