Jenny McCarthy: responding to criticism

First, an apology.

My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a result many parents who are favourably inclined towards biomedical interventions for autism have boosted my stats. And many of them have left critical comments that merit a reply. But not all of these are attached to the Jenny McCarthy posts. So I am trying to deal with them all in one blog post.

When reading the comments I noticed a number of common themes.  Liz summed up a lot of these themes in an insightful comment:

I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!

There are four main ideas here.

  1. Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.

  2. Consequently they claim that there are no answers to autism.

  3. Parents are not impressed by this and look elsewhere.

  4. They find their own answers and their children make progress.

 These are very important points. When you get  diagnosis for your child you do not immediately google “Autism” and look up your nearest DAN doctor. You ask your regular physician about what happens next and for many people the answer is not satisfactory.

Michael Fitzpatrick is a doctor and also the parent of an autistic child. In his book, MMR and Autism: what parents need to know, he quotes from the Oxford Handbook of Clinical Specialities, a popular reference with British junior doctors.

“Autism:

This neurodevelopmenal disoder is, if severe, the antithesis of all that defines mental health.

Prevalence: up to 90/10,000 of those <16yrs old – estimates vary considerably. Sex ratio M/F = 3.

[...]

Treatment: this is not effective. Behaviour therapy may be tried. A good teacher is more helpful than a good doctor.

70% remain severely handicapped. 50% will develop usful speech. 20% will develop seizures in adolescence.  15% will lead an independent life.

Apply for benefits (disability allowance if in UK).”

Fitzpatrick goes on to write,

“Its summary of medical wisdom on autism conveys with brutal economy the simple facts that doctors do not know what causes autism and have no treatment for it. Furthermore, the prognosis is grim: apply for benefits.”

Our knowledge and understanding has moved on in the 10 years since this edition of the Oxford Handbook was published. Though I doubt that this has had a major impact on the medical profession. Autism remains a rare condition when compared to childhood complaints like asthma and eczema. It is also rare in comparison to psychiatric disorders in children. So there is little imperative on doctors to update their knowledge when there are other more pressing claims upon their time.

NO HOPE or FALSE HOPE?

Still, I am surprised and disheartened by parents commenting that their doctor told them there was “no hope” for their child. Do doctors really say this to parents? Or do they say something like “there is no cure but …” by which time the parent has stopped listening, their distress on hearing the diagnosis compounded by their despair on hearing that there is no cure? Their hopes are dashed in the doctor’s office and they go away believing that nothing can be done. Only later, when they come across websites that proclaim that autism is treatable, do they regain their hope and become converts to the cause of biomedical intervention.

CAUSE and EFFECT

Defeat Autism Now makes all sorts of claims about the causes of autism. But they cannot point to any well designed scientific studies that demonstrate causation. Instead they rely on patient testimonials, or more accurately, the parents of patients testimonials. “Recovered” or “recovering” kids are displayed at conferences and video evidence is posted on the web. This is not scientific proof. It is advertising. I am not saying these kids have not improved. I see kids improve all the time in the school where I work. I saw my own son improve.  I am saying that, in the absence of properly controlled scientific studies, claims for particlar treatment protocols cannot be verified

Sometimes improvements are dramatic. Children seem indistinguishable from their peers, as well they might in a supportive environment where staff follow the advice of the Child and Adolescent Mental Health Services.

Psychological treatment programmes can help parents/carers in modifying children’s behaviour, enabling them to cope with specific difficulties and ensuring optimal schooling. Helpful advice to parents is that it is more effective to change the environment around the autistic child than to attempt to change the child.

This is helpful advice to schools as well. We do well to remember that autistic spectrum disorders are developmental disorders. These children are not frozen in time. They grow and develop, though not always in the ways we might expect. Creating an environment that plays to their strengths is likely to be more productive than constantly reminds them of their weaknesses. As I wrote elsewhere:

We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem.

COMMONSENSE versus SCIENCE

There are still parents who will insist that they know the treatment worked. This happened with Secretin. Victoria Beck reported a dramatic improvement in her son’s autism after he was given Secretin to test pancreatic function. Secretin was enthusiastically espoused by DAN. The late Bernard Rimland claimed:

The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism.

Rimland was so convinced that he and Beck secured the patent for using secretin to treat autism and sold it on for a reported $1 million USD to Repligen Corp. There was nothing wrong with this deal. They were paid in shares in Repligen which they made over to the Autism Research Institute. The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to  work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.

Chelation is another remedy favoured by DAN practitioners. But autistic kids do not like taking strange medicines by mouth or being strapped down for a slow intravenous infusion. So some enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.

When people think something works, where there is no scientific reason for it to work, we call it the placebo effect. That does not mean they were conned or are trying to con the rest of us. Placebo affect means people get better because they think they will get better. You can call it faith healing or the power of positive thinking. It is a real effect and one of the reasons why the gold standard of medical research is the double blind study in which a control group is given a placebo and nobody, neither the researchers nor the patients, knows which is which until after they have evaluated the results. The experimental group must not only show benefit, they must also show a significant benefit over and above the group on the placebo.

But how does this explain improvements in autistic children who are given placebos? They may be completely oblivious to what is going on. First there is an important effect noted by researchers into regressive autism, the distressing condition where children develop normally and then lose previously acquired skills or fail to progress thereafter. From a previous blog.

Much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. Aitken knows this. It is in the same study by Taylor et al.

“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
(Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. page 395)

We reinvent our memories in the light of experience. Memory is not a transcript of history. It is a constantly changing attempt to interpret that history with the benefit of hindsight. So parental accounts may not be the most reliable evidence without external corroboration.

Secondly, children are very sensitive to the emotional state of their parents or other primary caregivers. You can get a vicious circle where totally stressed out parents unwittingly add to their child’s stress. The child then freaks, adding to their parent’s stress, et cetera, et cetera. Then someone offers the parents a way forward. They feel empowered. They are less stressed. They approach their child with a more positive outlook. They are consistent in their dealings with their child. The child senses all this and benefits from the change in his parents. We have placebo by proxy. The parents think the therapy changed their child when, in fact, it was their belief in the therapy that changed them and then their child changed in response to the change in themselves. The therapy did not cause the change directly. It was the catalyst for change.

JENNY and I.

Most parents are not au fait with the scientific method or the history of autism. And why should they be? They have been thrust into a difficult situation and may not be enjoying the best of support from professional agencies. This makes them vulnerable. They are looking for a way out of this mess. They turn on the TV and see Jenny McCarthy spreading her message of hope. Who would not be sold in those cicumstances? Then Google brings them here and they read me bad mouthing Jenny. Outrage!

Listen up. McCarthy is only spread all over the media because she previously spread herself all over the pages of Playboy. Why should the opinions on autism of a young and buxom, B list celeb and wannabe film star be more credible than those of an overweight, middle-aged guy like myself? Last year McCarthy was an indigo mother with a crystal child. Her kid was the next stage in evolution. Then he became some kind of toxic disaster zone and now he is cured. Oh, and it was the vaccines what done it! This from a woman who had her son circumcised because she wanted him to have a “pretty penis.” Excuse my cynicism, please.

YOU and I 

I have tried to address general criticisms of my position rather than go for a point by point rebuttal or engage in personal arguments. If anyone thinks that I have ducked their question or ignored their point of view, please feel free to repost it in the comments to this post and I promise to respond.

Kerry charged over Tariq’s death

Roy Kerry has finally been charged with involuntary manslaughter, endangering the welfare of a child and reckless endangerment two years after Abubakar “Tariq” Nadama died as a result of treatment he received at Kerry’s clinic in Portersville, Pennsylvania. Kerry also faces an enquiry into his competency from the state medical authorities and is being sued by Tariq’s parents. Amazingly, on the day that charges were filed against him, Kerry was unavailable for comment because he was too busy treating patients!  

Kerry gave Tariq an IV push of disodium EDTA (Endrate). This was wrong in so many ways.

  • Endrate is a chelating agent that draws calcium out of the body and can cause heart failure.
  • It’s only indications are for the emergency treatment of hypercalcemia and for the control of ventricular arrhythmias associated with digitalis toxicity.
  • Even then it should only ever be administered as a slow infusion, never as a rapid push.
  • The label recommends a 3 per cent saline solution. Kerry used a 50 per cent solution.

Much has been made of the fact that Kerry may have inadvertently used the wrong type of EDTA. There is a “safer” version, calcium disodium EDTA (Versenate) which, according to the FDA is indicated for lead poisoning (acute and chronic) and lead encephalopathy. Even this carries dangers.

Calcium Disodium Versenate

Generic Name: edetate calcium disodium
Dosage Form: Injection, usp

WARNINGS: Calcium Disodium Versenate is capable of producing toxic effects which can be fatal. Lead encephalopathy is relatively rare in adults, but occurs more often in pediatric patients in whom it may be incipient and thus overlooked. The mortality rate in pediatric patients has been high. Patients with lead encephalopathy and cerebral edema may experience a lethal increase in intracranial pressure following, intravenous infusion; the intramuscular route is preferred for these patients. In cases where the intravenous route is necessary, avoid rapid infusion. The dosage schedule should be followed and at no time should the recommended daily dose be exceeded.

 The International Herald Tribune reports that

Kerry has argued that the boy’s symptoms improved after the first two treatments. He acknowledged there may have been a “miscommunication” about which medication to give the boy during the third treatment, but said that did not amount to gross negligence.

This suggests that maybe Kerry used the “right” version of EDTA on the first two occassions and his assistant administered the fatal dose of the “wrong EDTA in his absence. But this contradicts these statements in the official record of the Pennsylvania State Board of Medicine.

72. Respondent stated to Inspector Reiser that disodium EDTA is the only form of EDTA that he stocks in his office.

73. Respondent admits that CaNa2EDTA is available but he has never used this agent.

All three treatments used the same medication, Endrate. By the time of the third treatment Tariq’s young body could no longer withstand the depletion of calcium from his system and he died. Would Tariq have survived if Kerry had used Versenate? Perhaps. But Versenate is indicated for lead poisoning and Tariq did not have lead poisoning according to the same official record of the Pennsylvania State Board of Medicine 

43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.

44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.

45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.

46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.

47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.

48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or non­provoked conditions.”

49. Tariq had a minimal elevation of his lead level.

50. The result of Tariq’s urine test also revealed a marked depletion in the iron present in Tariq’s body.

51. Controlled studies have shown a correlation between learning problems and low iron levels in children.

52. Respondent subjected Tariq to a second round of Disodium EDTA chelation on August 10, 2005.

53. In Tariq’s medical chart for the date August 10, 2005, Respondent writes, “The last IV EDTA produced 15mcg of lead level per gram of Creatinine. We really expected a higher output. Recommend repeating the IV again. Use the 1 gram of EDTA … on the next IV we’ll do another collection … IV given in the right antecubital fossa with no difficulty over about a 5-­minute span. He gets a little sleepy afterwards and then he recovers in about 5 minutes. Recheck in 2 weeks.”

54. Theresa Bicker, a medical assistant employed by Respondent, stated she administered the Disodium EDTA On the second treatment on August 10, 2005.

55. The Respondent ordered his second treatment.

56. Respondent was in attendance during the August 10, 2005 round of Disodium EDTA chelation.

57. The August 10, 2005 chelation treatment was administered by a five to ten minute IV push.

58. On August 23, 2005, a third and final round of Disodium EDTA chelation therapy was administered to Tariq.

59. Theresa Bicker administered the IV Disodium EDTA to Tariq.

60. Bicker requested Doctor Mark Lewis, D.O.) to come to the treatment room to help restrain Tariq for the IV push of Disodium EDTA.

61. Respondent was not present when Tariq received chelation on August 23, 2005.

62. Theresa Bicker administered the Disodium EDTA pursuant to Respondent’s orders.

There is no evidence for misinformation about medication here. Indeed there is strong evidence for continuity of treatment over the three sessions. Even with the evidence that Tariq’s lead levels were normal Kerry persisted in chelating the poor child.  Kerry stated in his notes that “we really expected a higher output [ ... ] Recheck in 2 weeks.” I would expect a doctor to check the levels before initiating a further round of treatment, especially as Tariq found the procedure so distressing that he had to be strapped to a papoose board and restrained by 4 adults during treatment.

FOOTNOTE

In the immediate aftermath of this tragic affair DAN! did their best to distance themselves from any involvement. Kerry was not a DAN! practitionr. His treatment was not part of the DAN! protocol. But once the fuss died own Kerry was admitted onto the list of DAN! Healthcare Practitioners. Furthermore, DAN! have never acknowledged their part in Tariq’s treatment. Tariq was referred to Kerry by DAN! practitioner Anju Usman.

 21. The July 22, 2005 entry in Tariq’s medical chart reads, “We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding 10 other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.

She presumably is the “physician who previously treated Tariq, [and] recommended treatment with CaNa2EDTA as recently as June 2005.”  So a DAN! practitioner used all her dark arts to cure Tariq of aluminium poisoning. When that did not work she sent him to ACAM practitioner, Kerry for IV treatment with Versenate, even though Endrate is ACAM’s drug of choice.  Kerry went against Usman’s advice on three separate occasions.

Was Usman following up on her patient?

Should she have known that Kerry was using Endrate instead of Versenate?

When did Usman’s duty of care end towards Tariq?

Why isn’t she in the dock with Kerry?

Maybe we will find when this case comes to trial and Usman has to take the witness stand. 

When Friends Fall Out

A few weeks ago in my post on Rett Reversal and Neurodiversity I wrote

Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices. 

Well, it has happened. J. B. Handley, the driving force behind Generation Rescue and Put Children First, is circulating a letter entitled Bernie versus Bryna: The Trouble with Autism Speaks 

Bernie refers to Bernard Rimland, the recently deceased founder of the Autism Research Institute [ARI] and Defeat Autism Now! [DAN] Rimland has done more than anyone to promote the idea that autism can be treated with alternative therapies like megadoses of vitamns, special diets and chelation for heavy metal poisoning. Bryna refers to Bryna Siegel who wrote The World of the Autistic Child and is very much in the autism mainstream.  Handley is upset because Autism Speaks is sponsoring a conference hosted by Jump Start in San Francisco this Friday [March 9th] at which Siegel is the keynote speaker. This is why.

Bryna Siegel diagnosed my son. My son was the first client of “JumpStart” when it was still a part of UCSF and just in its infancy. Bryna Siegel told us that the GFCF diet was a “placebo for parents.” She has testified in court for vaccine manufacturers to ward of Thimerosal lawsuits (something she does not disclose to you while telling you the vaccine-autism link has been disproven.) She thinks the Danish studies thoroughly refute the Thimerosal-autism hypothesis. She told us our son had no “theory of mind” and that he’d probably never talk.

A parent who attends this workshop and asks a question about biomedical treatment will be told by an “expert” that biomedical treatment does not work. I should know, that’s what she said to me and my wife.

And, that’s my point about Autism Speaks: way too much Bryna and not enough Bernie.

Handley believes that there is an autism epidemic caused by mercury in vaccines. He believes in special diets, supplements and chelation therapy. He is using them to try and cure his son. He is mad at Autism Speaks founders Bob and Suzanne Wright because they have not publicly embraced and endorsed DAN and ARI. He finds this particularly galling because their autistic grandson is being treated by a DAN practitioner.  

But that is not the whole story. The Autism Society of America [ASA] and ARI announced a research partnership in October last year. But Rimland died shortly afterwards and there is little evidence on either organization’s website of progress in this area. At the same time Autism Speaks has been making real headway. Its video, Autism Every Day, received widespread coverage, including a showing at the Sun Dance Festival and was heavily promoted among politicians in the run up to approval for the Combatting Autism Act. Autism Speaks marked the anniversary of its successful merger with the National Association for Autism Research [NAAR] in February by finalising a merger with Cure Autism Now. [CAN] Autism Speaks was quick to announce its role (courtesy of CAN) in the recent widely publicized report of the Autism Genome Project. Autism Speaks has also established itself in the UK and in Canada. While its US website still affirms its commitment to

funding global biomedical research into the causes, prevention, treatments, and cure for autism.

the UK website has a much more inclusive statement that avoids mentioning cures. 

Autism Speaks is a registered charity that raises funds to accelerate biomedical research to determine and understand the causes and biological basis of autism spectrum disorders; and through that understanding to discover and promote new ways of improving the quality of life for all those affected.

This is part of an inevitable process of accommodation. Autism Speaks has an ambition

to become a worldwide organisation by developing communication, organisational and fundraising models that encourage funders, researchers and those affected by autism to work collaboratively across geographies to ensure that the needs and priorities of each are met.

Collaboration means compromise. Working in the mainstream means that you adapt to the consensus. In the UK the consensus is more congenial to autism acceptance than it is in the USA.  So Autism Speaks has adapted. Some advocates for neurodiversity remain deeply suspicious. I tend towards a cautious and watchful acceptance of their good faith, in the UK at least. Handley, on the other hand, is outraged because he suspects that Autism Speaks are going to drop their support for biomedical interventions to cure autism and accept that autism is more genetic than environmental. These are his complaints against Autism Speaks.

1.      You do not mention DAN! or biomedical treatment on your website, and you have no link to DAN! or ARI or any of the groups on our side of the fence.
2.      When you eulogized Bernie Rimland on your website, which would cause him to roll-over in his grave I am certain, you did not even mention biomedical treatment or recovered children, this is a glaring, glaring omission that speaks volumes about the mindset of the people running your organization.
3.      Your scientific advisory board is populated with some of our world’s worst enemies, including some who have stated on the record that there is no autism epidemic. And, your research choices support this. (The only environmental research you can claim to have sponsored deals with prenatal insults with the notable – and commendable – exception of Richard Deth).
4.      When I met with AS in the Fall, I asked a simple question: “Are you sending anyone from your organization to the DAN! Conference?” After some silence and stumbles, everyone turned to Andy Shih and his answer was basically “No.” The only person in the room more annoyed with this answer than myself was Katie Wright.
5.      None of the research ideas presented to you by Laura and Lyn have received further study or consideration, as far as I know.
6.      Kevin Barry, our former President, was hired by Autism Speaks. On his first day of employment, Mark Roithmayr informed Kevin that he was only there “as a favor to Katie”
[ the mother of Bob and Suzanne Wright's autistic grandson]
7.      You succeeded in completing alienating Deirdre and Don Imus, our community’s most important public advocates.
8.      The clarification by Alison Singer regarding her unambiguous statement to the Wall Street Journal only further clarified how far Autism Speaks is from the environmental camp. I’m pretty sure we are soon going to see funding to try to unravel the “genetic epidemic” we are experiencing.

I will not go into all these points right now. I expect other Autism Hub bloggers will have something to say about this. Handley ends by giving the email addresses of some  Autism Speaks luminaries for you to complain to. If they have managed to annoy Handley so much I suggest that congratulations and encouragement to do more of the same are in order.

Mark Roithmayr: mroithmayr@autismspeaks.org

Bob Wright: Bob.Wright@nbcuni.com

Suzanne Wright: suzanne.wright@nbcuni.com
With extreme annoyance and frustration,

JB Handley

It could be, JB, that you might be wrong. Just something to think about.

Questions for Dr. Anju Usman

Treating Autism is hosting the two day Autism-Biomedical Conference at the Bournemouth International Centre with funding from the National Lottery this weekend. (Friday 9th  and Saturday 10th February)

Regular readers of this blog will not be surprised to learn that I have misgivings about this. Basically the DAN! protocol is being promoted in a big way in England for the first time. This follows on from the success of Action Against Autism in setting up a DAN! clinic in Scotland under the leadership of Lorene Amet following their biomed conference in Edinburgh in October 2005.

I have three major objections to DAN!

  1. They accept as fact that there is an epidemic of autism caused by environmental toxins.
  2. They claim that by using chelation to remove these toxins children can be recovered from autism.
  3. Any charlatan or quack can become a DAN! practitioner merely by doing an eight hour training session at one of their conferences. Children have been sexually abused, injured and killed by DAN! practitioners whose details are still up on the DAN! website with no warnings about their professional misconduct.

I am particularly surprised that Anju Usman is such a prominent speaker at this conference.  Dr Usman was the DAN! practitioner treating Abu Bakar Tariq Nadama after his mother took him from Britain to America seeking  a cure for his autism.  Dr Usman referred him on to Dr Kerry. Tariq subsequently died as a result of the treatment prescribed by Kerry. According to Kerry’s case notes, published by the Pennsylvania State Medical Board as part of their case against him,

“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.

Later on  Pennsylvania State Medical Board reports that Usman actually recommended calcium disodium EDTA.

43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.

There are two forms of EDTA. Disodium EDTA is used for the emergency treatment of hypercalcemia and in control of ventricular arrhythmias associated with digitalis toxicity.  Tariq did not have either of these illnesses. Calcium disodium EDTA can be used to treat aluminum poisoning but is more commonly used for lead poisoning. The calcium is added because disodium EDTA on its own also binds to calcium. Tariq died because the disodium EDTA depleted his body levels of calcium to such an extent that his heart stopped.

The Pennsylvania State Medical Board also notes that Tariq had low levels of iron. And Usman had referred Tariq to Kerry because of high aluminum levels. Deferoxamine is often used to treat aluminum poisoning. It also binds to iron. If Usman was using that to treat Tariq it would explain his low levels of iron. It does not explain why she sent him to Kerry, a doctor who never ever used calcium disodium EDTA. He only ever used disodium EDTA

Even if I was a true believer in biomedical cures for autism, before I ever invited Dr Usman onto a conference platform, I would want to know

  1. Did she use Deferoxamine on Tariq? Was she monitoring his iron levels? 
  2. Did she specify CALCIUM disodium EDTA to Kerry when she referred Tariq?
  3. If so, would he not have told her that he never used it and did not have it in stock?
  4. Did she understand at the time how different the two forms of EDTA are? 
  5. Did she object when Kerry was granted DAN! status AFTER he killed Tariq?

We know that Kerry is unfit to practise medicine. Until questions about her role in the death of Tariq are settled there are serious doubts about Dr Usman. Will she answer these questions in Bournemouth? Will they even be asked? for Tariq’s sake, and for the sake of all the potential Tariqs, I hope so.