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Protecting Public Trust in Immunization

28 Jul

That’s the title of a special article in Pediatrics:

Public trust in the safety and efficacy of vaccines is one key to the remarkable success of immunization programs within the United States and globally. Allegations of harm from vaccination have raised parental, political, and clinical anxiety to a level that now threatens the ability of children to receive timely, full immunization. Multiple factors have contributed to current concerns, including the interdependent issues of an evolving communications environment and shortfalls in structure and resources that constrain research on immunization safety (immunization-safety science). Prompt attention by public health leadership to spreading concern about the safety of immunization is essential for protecting deserved public trust in immunization.

It is quite bizarre that something that is overwhelmingly good for society and good for individuals should become the scapegoat for just about every ailment the modern world has. I’ve seen vaccines blamed for (aside from autism) asthma, AIDS, heart disease, obesity amongst other things and portrayed as part of a global Illuminati agenda to control the world population. I’ve seen people tie it in (or try anyway) to the events of 11th September 2001 and threaten scientists associated with their manufacture with death for them and their children. How the hell did we get here?

The paper from which I’ve included the Abstract above is an attempt to try and recognise how these things have happened and how the medical/science establishment can regain public trust in vaccination.

The paper opens with a little bit of self-chastisement:

Every time a mother holds her healthy infant to be immunized, she is demonstrating great faith in the potential benefit and safety of the vaccine and trust in the clinician who recommended it. Over past years, clinicians and public health leaders have taken for granted the magnitude of that act of trust. We also have basked in the praise that comes with being a participant in the success of immunization in dramatically reducing morbidity and mortality in childhood and changing the practice of
pediatrics.

For doctors, who are by and large subscribers to the scientific mentality, the benefits of vaccination are obvious. Their error has been to not notice that 99.99% of their case load are not subscribers to the scientific mentality and therefore they will not look at things with the same lack of emotion. It is in fact very difficult to do so. Particularly for something like vaccination when we are essentially treating our kids for things they haven’t got. Also difficult to see for emotional rather than scientific people are things like keeping up herd immunity:

“Vaccines are victims of their own success” is the shorthand now used to reflect the reality that, in the absence of vaccine-preventable disease, many parents fear vaccines more than the diseases known to them only vaguely.

Its true. Getting the message through that just because the vaccine-preventable disease is not right here right now doesn’t mean its gone for ever is difficult. And here is another place in which the scientific community have fallen down: they have not got the message through. Until very recently, they have not even tried.

Over the past 10 years the Internet, particularly the web, has grown to every corner of the globe and over the years, those who used to be anti-vaccine cranks have now become trusted gurus to the parents who think that looking on whale.to is the same as doing research. The scientific community has failed to keep up with this. Their solutions (the NHS website for example) whilst very informative are stilted, formal and do not speak to the emotional side/needs of parents.

The Pediatrics paper lists a number of ways for science to regain the trust of parents.

One area that needs increased investment is immunization-safety science;

…….

What is immunization-safety science? Or, more accurately, what are the sciences necessary for protecting public trust in the safety of vaccines? Most of the biological, social, and communication sciences have roles.

Some of these sciences are more central and obvious than others, such as allergy/immunology, epidemiology, and infectious diseases, but anthropology, ethics and political science also have important roles given the multiplicity of questions. Research on the short- and longer term risks and benefits of combinations and timing of multiple vaccines requires a different profile of disciplines than does the question of “what is the value of mandates in public immunization programs?”

Yes. Definitely. These are science based questions that need addressing.

Invest more in public awareness and genuine public engagement around immunization issues. Recognize the number and heterogeneity of publics to be served and the diversity and legitimacy of their questions and concerns.

? Educate the public on the elaborate, already existing US system for research and testing of vaccines, including the responsibilities of the vaccine industry and, particularly, the independent and interdependent functions of industry, the US Food and Drug Administration (FDA), the CDC, the Health Resources and Services Administration, and all their advisory bodies for prelicensure and postlicensure evaluation.
? Educate the public on the function, membership, and selection process for members of key advisory bodies.
? Increase the number and diversity of citizen members on advisory bodies without reducing scientific expertise.
? Give the public sufficient information and adequate time to understand the rationale for any new vaccines before embarking on immunization campaigns, which can be done without delaying protection.
? Engage local communities and parent groups as advocates of new vaccines.
? Avoid the hyperbolic marketing practices of overselling.
? Improve the communication skills of public and private health leaders to present information in perspective, including benefits, risks, and gaps in knowledge. Avoid obfuscation, admit gaps in knowledge, and be available and candid in answering the questions asked, building comfort even when the circumstances are uncomfortable. Take the time to explain changes in recommendations/policy. Such explanations are essential for reducing charges of waffling, indecision, and hidden agendas.
? Invest in research on what is truly driving parents’ questions and concerns and what may be needed to earn/keep their trust in vaccines.
? Decrease reliance on state mandates and in no case push for mandates before evaluating the results of voluntary immunization programs.

Yes, again, good points. However, to me, the key question is not being addressed. How do you intend to do this? What needs to change is how you get these things over to the general public. For example, parents of autistic people generally trust other parents of autistic people. I’m sure that there are some Paediatricians who are also parents of autistic people. Maybe they are even AAP members! Or work for the CDC. Give these people a voice.

Lets see some voxpop ‘interviews’ on YouTube. Nothing stilted, nothing formal, just people doing their job, speaking their minds. If there’s fault, let them admit it.

And you’re going to have to accept I think that there is a generation of parents here who are never going to see it your way. They’re lost. Concentrate on the new parents. If they’re having vaccinations, hold a Q&A but be ready for the hardcore anti-vaxxers. If they’re in for an autism assessment for their kids (or themselves) talk to them, don’t just diagnose and dismiss, let them express their fears. Yeah, it’ll take more time but it’ll be worth it in the long run.

Said the Brit, daring to comment on US health policy 😉

Conflicts of interest, whats good for the goose…

28 Jul

As recently blogged by Autism News Beat, CBS Evening News (an American news outlet) recently performed an investigation into ‘how independent are vaccine defenders’? Something of an exercise in futility, it concluded that:

Ideally, it [vaccines] makes for a healthier society. But critics worry that industry ties could impact the advice given to the public about all those vaccines.

So, CBS say that the vaccine schedule makes for a healthier society but that the advice given about vaccines could impact the advice given.

Uh…so? Lets go through that again. It makes for a healthier society. Would CBS rather it didn’t? Bizarre.

Specifically, they attack the AAP, the Every Child By Two website and Paul Offit. The AAP has conferences funded by vaccine manufacturers, ECBT takes money from the vaccines industry….in fact, hold on…CBS say in their report (assume breathless excitement reporter voice)

Every Child By Two, a group that promotes early immunization for all children, admits the group takes money from the vaccine industry, too…

Oh do they? They admit it do they? Under the rigour of your intrepid journalism no doubt? Except that information is clearly available for all on their website. I do wonder if anyone from CBS even spoke to ECBT.

And of course there is Paul Offit – the official poster boo-boy for anti-vaccinationists everywhere. The man who dares to make a profit from his inventions! CBS took him to task for holding a patent on a vaccine. Shall we look at another man who made a patent application for a vaccine? That’s right – Andrew Wakefield. Except, unlike Dr Offit, who made no attempt to hide his association with the vaccine he was responsible for, Andrew Wakefield’s solicitors said that ‘Dr Wakefield did not plan a rival vaccine’.

How about other people who make a tidy income from the anti-vaccine industry? The Geier’s maybe who invented their own IRB to make sure that their ‘science’ was unhindered by ethical considerations…..or maybe Dr. Jay Gordon who thinks that the Polio vaccine could be replaced by simply not eating cheese. How much do you charge your clients Dr Jay? How about Laura Hewitson who’s husband works for the Wakefield owned Thoughtful House and who seems to be part of the Autism Omnibus hearings….how independent can her science be? How about the ARI/DAN group who are led by people who clearly have no clue at all as to the medical science they are making a large profit on. How much do each of these people make? How about Rashid Buttar who lists non-existent memberships on his CV and who charges upwards of $800 for a 1 hour consultation fee and who’s ex-patients report being out of pocket by about $20,000 in about a year.

Its up to you Dear Reader – are these things we should be worried about? Are these things CBS should be worried about? Are these conflicts of interest? Does the act of making any sort of money either from treating people or from existing business interests mean you cannot and should not talk about these things? Should we assume that only certain people have an agenda?

In my humble opinion, it should only become an issue when attempts are made to hide these things. Or deny them when they are clearly true. That cannot be said of the AAP, ECBT or Paul Offit. Maybe CBS should be asking to see the balance sheets of DAN doctors or vaccine litigation specialists. What have they got to hide? Maybe CBS should be inspecting the credentials of people who claim to be able to cure autism and reverse old age. Maybe CBS should be looking at the disturbing increase in ties between autism/anti-vaccinationists and scientology.

But I would think in the meantime that CBS will take the easy route of producing crap that informs no one about anything. Lets hope it doesn’t turn around and bite them on the arse eh?

Elsewhere
Orac weighs in too.

How urban legends get started

27 Jul

Its not often we in the autism/bad science community (you’ll know who we are, just look for the Reptiles who guard our huge mansions paid for by big pharma, or our Black Helicopters parked outside said mansions) get to see the actual birth of a brand new urban legend. When we do, we must tread warily, lest we scare off the fledgling nuttiness like bird watchers creeping up on a White-rumped Sandpiper.

But here we are, presented to you courtesy of two genuine, grade a mouth-frothers from those hallowed fori of all things anti-vaccine JABS (not, as some think an acronym for Just Awful British Silliness).

First, lets meet ‘Guss the Fuss’ – a person who ends each post with the legend ‘MMR RIP’, he seems to be under the delusion that the MMR is in some way dead. Or maybe that its pulled off a spectacular fart.

Second, is ‘Truthseeker’ who is non other than the owner of whale.to, one John Scudamore, a strange person who features anti-Semitic material on their site along with ‘The Illuminati Formula Used to Create an Undetectable Total Mind Controlled Slave’. Also apparently a man who thinks that satanic ley lines burnt his bottom. In fact, so impressed was I with Mr Scudamore, I decided to create the first in a series of Bad Science tarot cards, commemorating his ass-related event.

John Scudamore - Tarot

Anyway, on this occasion, these two paragons of anti-vaccinationism managed to start an urban legend that fullfilled the prime directive of anti-vaccinationism; its bullshit.

Gus The Fuss started a thread entitled: Sainsbury’s to offer holiday MMR jabs.

Oh no, the horror….except when Guss (the Fuss) linked through to the story, well, there was absolutely no mention of MMR whatsoever. When this was pointed out to him, he answered:

Dr Thomas P again you’ve proven to take articles at face value…

????

Someone else attempted to gently remonstrate with Guss (the) Fuss:

Gus, this is a story about getting vaccines against diseases you may encounter on holiday. Have you not read it?

There’s nothing about scheduled vaccines, is there? Eh? Is there?

Sainsbury’s are NOT offering the MMR vaccine.

And thats when John ‘Truthseeker’ Scudamore turned up:

Who is mentally ill and showing sociopathic tendancies out of you or Gus. The bad science PHD Doctor who is happy that allopathic mnedicine is still killing 750,000 americans each year and you still condone it? The bad science PHD who will not even attack the indusrty that commits this genocide? You are either a Sociopath or you are mentally ill as you can not see reality as is or you condone genocide.

All this about a total non-story.

This, Dear Reader, is how anti-vaccination/autism bull gets started and spread. Someone makes up a story, links to a news story that has a slight relationship to it and then….away we go!

Thanks JABS, for making sure misinformation grows. Thats really helpful!

Tags:

Elizabeth Mumper – Autism Omnibus, Dwyer vs HHS

25 Jul

Some highlights, courtesy of a Guest Blogger, er Transcriber 🙂

Beau Johnson DoJ lawyer: Neither the myelin basic protein nor the IGM neuro filament antibody test is diagnostic of any disease is that right?

Mumper: That’s correct.

Johnson: They are very nonspecific findings.

Mumper: That’s correct.

Johnson: And isn’t it true that these antibodies have been reported as elevated in normal individuals with no disease?

Mumper: That is true in some cases. Exactly.

Johnson: And because these markers were measured in the serum rather than the CSF they provide no direct evidence of what is going on in Colin’s central nervous system is that right?

Mumper: I guess I would quibble with how you get direct evidence, in this case in order to get direct evidence of neuroinflammation I guess we’d would really needed to have done a brain biopsy on him in 2002. I can tell you from personal experience that even wanting to look at CSF in children with autism for the presence of inflammatory markers is widely perceived as an invasive procedure. So those of us who might want to be able to document it more directly are constrained from doing so by standards of care criticisms. So we have to rely on other markers, and it’s not a direct marker but I would argue that a clinician would not have the ability to do a direct assessment in a living child.

Johnson: For whatever reason that evidence is just not present in this case, is that correct?

Mumper: That’s true

Johnson: Do you know what protocol Immunosciences used to perform these two lab tests?

Mumper: You know I don’t. I have visited the immunosciences labs on two occasions and talked to the director and viewed their facilities. But I am not a lab scientist. I can tell you that when I visited and had it explained to me it made sense at the time, but I could not reproduce the protocol.

Johnson: Do you know how Immunosciences established it’s references ranges?

Mumper: I do not know the details of that, no.

Johnson: Do you know whether these reference ranges take the age factor into account?…

Mumper: I do not think they are normed for children, but for things like neurofiliment antibodies and myelin basic protein antibodies the values for children would be expected to be less than people as they aged…

Johnson: But you don’t believe that these reference ranges are normed for children?

Mumper: I do not think that they are. That’s correct.

Johnson: Do you know if immunosciences lab ever been accredited by the College of American Pathologists?

Mumper: I do not know if they have. I do know that their work, their lab reports come disclaimers about use for research and careful clinical applicability and those types of things.

Johnson: Do you know if immunosciences is currently performing any clinical testing?

Mumper: I believe they are not.

Johnson: I’m going to show you what we’ve marked as respondent’s trial exhibit 14 and it is a letter that I found on the Immunosciences website.

Mumper: OK.

Johson: Doctor have you seen this letter before?

Mumper: Yes I have.

Johnson: And does this letter reflect that Immunosciences has in fact stopped performing clinical testing as of July 21, 2007?

Mumper: Yes, as i just testified to.

Johson: Do you know why it stopped performing clinical testing?

My understanding from talking to Dr. Vodjani and some health department officials, is that his lab was investigated for their testing as related to mold. Looking for mold evidence of chronic mold exposure as a potential cause of chronic illness. My understanding from Dr. Vodjani that the investigation was perhaps precipitated by a court case in which mold testing had been used and the plaintiff who had claimed damage from mold had won a huge settlement and the health department was concerned about the possibility of on the basis of that mold test and wanted to investigate the lab with regard to that.

Johnson: So its your understanding that the problems with Immunosciences lab were limited to its mold testing?

Mumper: That is my understanding, but I have not investigated all the depth of the investigation, nor read any of the official documents, so I really do not have full knowledge of that.

Johnson: I’m now going to show you respondents trial exhibit 15 which is another letter that I found on Immunosciences website.

Mumper: OK. Thank you.

Johnson: Doctor have you seen this letter before?

Mumper: I believe I have. Yes.

Johnson: Did you receive this letter since it is addressed to “Our valued clients and associates”? Was this sent to you?

Mumper: Yes.

Johnson: This letter is signed by doctor Vodjani?

Mumper: That’s correct.

Johnson: I believe you testified in May that you have an article in press (which has) Dr. Vodjani as the lead author?

Mumper: That is correct.

Johnson: Do you know what CLIA stands for?

Mumper: … I can’t remember…

Johnson: OK and just for the record it’s Clinical Laboratory Improvements Amendments of 1988 and we’ll just refer to it as CLIA for ease of reference.

Mumper: OK

Johnson: Do you know what CMS is?

Mumper: According to the letter it might be Centers for Medicaid and Medicaid Services?

Johnson: That’s correct. CMS regulates all laboratory testing on humans in the United States through CLIA in order to insure quality laboratory testing, is that right?

Mumper: Uhuh.

Johnson: Dr. Vodjani’s letter states in the third paragraph that “CMS had found deficiencies during a 2004 CLIA survey of Immunosciences that led it to conclude that the lab’s test results since 2002 may not be accurate and reliable.” Were you aware of those findings by CMS?

Mumper: Uhm, yes, since I got this letter.

Johnson: I’m not going to show you respondents trial exhibit 16. This is a letter from CMS. Doctor have you seen this letter before?

Mumper: Yes I have.

Johnson: Did you receive this letter?

Mumper: Yes I did.

Johnson: And this letter does in fact say at the beginning of the second paragraph on the first page that: We are writing both to inform you of the current sanction action and to alert you that test results that you received since June 2002 from Immunosciences lab might not be accurate or reliable. Is that what that says?

Mumper: I would like to add that… I did call Mary Jew as suggested in this last line. I can’t remember the details now, but I talked to three different people on the staff. I tried to get information about what particular concerns they had because I was trying to figure out for the labs that I had done on my patients if this were a global concern or if it was related to the mold or if there were tests that I was using that I may still be able to rely upon, and I was very frustrated in not being able to find out from those people who I think their hands were tied as far as talking about an ongoing investigation, what the problems were.

Johnson: We may be able to provide some of that information now. I’m going to show you now what is marked as respondents trial exhibit 17. And this is the CLIA annual laboratory registry from 2005. Have you seen this document before?

Mumper: No I have not.

Johnson: Look on page 5 of this document. Does this indicate that Immunosciences’ CLIA certification was being revoked due to condition level noncompliance?

Mumper: Uhm, cancellation of a approval to receive medicare payment due to noncompliance. Yes.

Johnson: Now I’m going to show you respondents trial exhibit 18. And these are actually excerpts from a much larger report. And this is the, a report from the survey that CMS did of this lab. … does that appear to be correct to you?

Mumper: Based on my thirty second review that does appear to be correct.

Johnson: If you’ll turn to the fifth page of the trial exhibit. This document lists a number of findings in connection with Immunosciences general immunology testing. Is that correct?

Mumper: It appears that that is correct.

Johnson: Were you aware that CMS noted problems at Immunosciences lab in connection with its failure to follow written policies and procedures for an ongoing mechanism to monitor, assess and correct problems in the pre-analytic systems?

Mumper: No I did not have access to that information.

Johnson: And were you aware that the CMS found that the laboratory
failed to determine calibration procedures and control procedures based upon established performance applications?

Mumper: No I was not aware of the specifics.

Johnson: And were you aware that the CMS found that Immunosciences laboratory failed to verify the continued accuracy of the test systems throughout the laboratory’s reportable range of test results? …

Mumper: … I was not aware of the specifics.

Johnson: And under sub paragraph I, the CMS found that the Immunosciences laboratory failed to establish the statistical parameters of the unassayed control materials used for it’s various in-house ELISA test systems?

Mumper: I was not aware of that.

Johnson: Ok and these findings all relate to Immunosciences general immune testing is that correct?

Mumper: It would appear that that is the case.

Johnson: And if you will look at the next to the last page of the trial exhibit. Were you aware that CMS found with respect to the anti MPB and neurofilament test in particular that Immunosciences failed to have written policies and procedures, for patient preparation, specimen collection, specimen storage and preservation, conditions for specimen transportation and specimen acceptability and rejection?

Mumper: And what was the date of that that it was not in place? Because it seemed to be on the website when you cited it earlier. And when we sent specimens in 2003 we were able to obtain written instructions about the specimens submitted, they came actually in the test kit.

Johnson: I believe this was from a survey from 2004 …

Mumper: What I was trying to explain to you that as a clinician the test kits came in a box, and there’re the tubes and a series of explanations about how the specimens need to be prepared. … So I can only testify as to what I know… we had procedures to follow when we submitted our blood samples in 2003.

Johnson: And all I’m asking you is that at the time that CMS performed this survey it found that those aspects of Immunosciences laboratory practice to be inadequate. Is that correct?
…

Johnson: Look at the last page of the trial exhibit…at the time it performed this survey with respect to the anti MPB and neurofilament test that Immunosciences failed to provide documentation the laboratory director’s review and approval for those procedures?

Mumper: It does suggest that there was no documentation to show his review and approval… so how much this was a matter of paperwork versus actual analysis, I can’t say.

Johnson: And Dr. Vodjani’s letter of January 16th, 2006 ,he indicates that Immunosciences had planned sue over the survey results.

Mumper: I believe he said he planned to vigorously fight or something to that effect …

(Special Master: And that was trial exhibit 15? …)

Johnson: We have a copy of the settlement agreement from that lawsuit it’s been marked as respondents trial exhibit… Focusing on paragraphs 1, 2 and 3. …

Mumper: OK

Johnson: It appears that one of the conditions of the settlement that Immunosciences would obtain accreditation through the College of American Pathologists or else it would voluntarily withdraw from the CLIA program and cease testing on human specimens, is that correct?

Mumper: That does seem to be the case.

Johnson: Based on the fact that Immunosciences is no longer performing clinical testing, isn’t it reasonable to assume that they did not receive accreditation through the College of American Pathologists…

Mumper: (interrupting) or that they chose not to pursue it I would think would be the two possibilities.

Johnson: Doctor based on this information do you have any concerns about the reliability of the Immunosciences test results?

Mumper: I was not aware that the MBP or neurofilament testing was under contention, and if that were the only thing that I was relying upon to make my judgement I would be concerned that I had over-read the labs. I would give relatively less credence or perhaps even be forced to discount those particular lab tests given  the information in the settlement agreement that I wasn’t privy to knowing the details of.

Johnson: The next test results that you discuss in your report are results from Great Smokies lab that purport to show abnormal glutathione, lipid peroxide and cysteine levels.  Is that correct?

Johnson: … That would have been when Colin was about 3 1/2 years old… So to the extent that these results indicate anything about whether Colin was under oxidative stress at the time … they don’t tell us if he was in oxidative stress at the time of his immunizations. Is that correct?

Mumper: That’s correct.

Johnson: These tests were blood tests is that correct?

Mumper: That’s correct.

Johnson: Do you know if these tests were normed for children?

Mumper: I do not know the answer to that question.

Johnson: And as you note in your report a number of other factors can explain oxidative stress such as poor nutrition. Is that right?

Johnson: Would you agree that a mercury efflux disorder is still a hypothesis at this point

Mumper: Yes.

Johnson: So low cysteine and plasma sulfate levels can’t be diagnostic of that disorder..

and those levels can be explained by a number of other factors is that right?

Mumper: That’s correct.

Johnson:… I’d like to go through all the mercury testing if you don’t mind.

…

Mumper: It would appear that 4-19-02 was the time of the very first visit to Dr. Bock. So there is not evidence that he would have been on a chelating agent at that time.

Johnson: And the result for this test of mercury was that it came back the non-detectable limit … Is that correct?

Mumper: Right.

Johnson: The next test that we found was the December 2002 test and that was a urine toxic metals test… although the report says that there was a chelating agent administered, you don’t believe there was, is that correct?

Mumper: Yes that’s correct.

Johnson: and the result shows no detectable mercury.

Mumper: Yes that’s correct.

Johnson: and the result shows no detectable mercury.

The next test was the December 22, 2002 …The next test was the December 22, 2002 test which is at petitioner’s exhibit page 90 and … this was post provocative test … and this test result showed that mercury was at 17 mcg per gram of creatinine. Is that correct?

Mumper: That’s correct.

…

Johnson: And the report indicates that DMSA was administered in connection with this test … and again the result from this test for mercury was nondetectable. Is that correct?

Mumper: That’s correct.

…

Johnson: There’s only test that showed mercury outside the reference range is that correct?

Mumper: That’s true.

The next test was the December 22, 2002 test which is at petitioner’s exhibit page 90 and … this was post provocative test … and this test result showed that mercury was at 17 mcg per gram of creatinine. Is that correct?

Mumper: That’s correct.

…

Johnson: And the report indicates that DMSA was administered in connection with this test … and again the result from this test for mercury was nondetectable. Is that correct?

Mumper: That’s correct.

…

Johnson: There’s only test that showed mercury outside the reference range is that correct?

Mumper: That’s true.

Johnson: And that was the provoked test from December 22, 2002. … Doesn’t Doctor’s Data say in bold right on the test report that reference ranges are representative of a healthy population under non-challenged or non-provoked conditions?

Mumper: That’s true.

Johnson: So we just don’t know what the normal range would be for a provoked test. Is that right?

Mumper: It is difficult to know…

David Kirby vs Accuracy

20 Jul

As I’ve said before, I like David Kirby personally. We exchange friendly emails. We even recently discussed the idea of having a private blog – readable by all but one that allowed only two posters (David and I) and no commenters. This would, I suggested, give us the opportunity to have a civil debate.

Unfortunately, David was too busy, which was a shame. However, the offers always open should he find a bit more time.

He did have time yesterday to blog a piece for the Huffington Post in which he discussed Amanda Peet and said she was ‘against the medical establishment’ for taking the stance she did. He cited a few things to support his point. I’d like to discuss these things but before I do I’d like you Dear Reader to take note: someone who was at the IACC meeting David talks about (he wasn’t there) will hopefully be posting their account of proceedings on LB/RB.

Anyway. Lets proceed. David’s first piece of rhetoric to support the idea Amanda Peet was against the medical establishment was:

A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.

I’m sure that some members do want this. Lynn Redwood and Mark Baxhill to be precise. As the upcoming IACC account will show, I don’t think any other IACC workgroup members were interested. (Please see this correction of an ignorant Limey’s take on the US system.)

I would also like to correct David on his characterisation of the Combating Autism Act. The Act contains no mention of vaccines. It specifies environmental research but the words ‘vaccine’, ‘vaccination’ ‘immunize’, ‘immunization’, ‘mmr’ or ‘thimerosal’ appear nowhere in the CAA. I hope David will correct his HuffPo piece accordingly.

Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”

Once again, David’s notes are coming from two people, Lynn Redwood and Mark Blaxill and indeed – they asked for all these things. The account of the meeting I have heard (from someone who was there) differed somewhat. As a flavour of how much the majority of the working group listened to Redwood and Blaxill, I enclose a teaser quote from chairperson Tom Insel:

“Lyn, your community is not the whole community and there are many people with well thought out concerns about ethics of the concept of prevention and if we want to be inclusive we will not do this.”

Back to David:

July 14, 2008 – Rep. Brad Miller (R-NC), Chairman of the House Subcommittee on Investigations and Oversight, (Committe on Science and Technology) writes to HHS Secretary Michael Leavitt to complain that current federal autism research “shows a strong preference to fund genetic-based studies,” even though there is, “growing evidence that suggests a wide range of conditions or environmental exposures may play a role” in autism.

I blogged that episode here. Suffice it to say that a _politician_ is not representative of the medical establishment. I would urge everyone reading this to read that piece as it suggests amongst other things that Generation Rescue and SafeMinds be responsible for a Board that would serve as a liaison between the IACC and parents of autistic people and autistic people themselves!. After reading that I would urge everyone to contact the following people to express your thoughts (politely!) to the decision makers:

HHS Sec Mike Leavitt (mike.leavittAThhs.gov)
NIMH director/IACC director Tom Insel (tinselATmail.nih.gov)
Everyone here: http://science.house.gov/about/members.htm

Once again, back to David:

Dr. Bernadine Healy, former head of the NIH and the American Red Cross and current Health Editor of US News & World Report tells CBS News that, “Officials have been too quick to dismiss the hypothesis as irrational,” and says they “don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.”

I still can’t get over the fact that David is using this person to back up his points! He continues to trumpet the opinion of Bernadine Healy who actually did assert that cigarettes do not cause cancer and worked closely with Philip Morris to do so. She also totally reneged on her stance on fetal tissue research when she found herself in the same camp as President Bush. In AoA language she’s a shill.

David then goes on to cite al three Presidential Candidates – as if a politicians opinion in an election year means anything! I definitely fail to see what any of them have to do with being part of the medical establishment.

Onwards:

March 29, 2008 – Dr. Julie Gerberding, Director of the CDC, speaking about the Hannah Poling case on CNN says: “If a child was immunized, got a fever, had other complications from the vaccines, and was pre-disposed with the mitochondrial disorder, it can certainly set off some damage (including) symptoms that have characteristics of autism.”

Er, so? I’m really not sure how this is a ‘point’ for David (or anyone else who thinks its supportive of the idea vaccines cause autism). If she’d said ‘yes, vaccines caused autism in Hannah Poling’s case’ (which no-one ever has by the way, despite statements to the contrary) than _that_ would be a bombshell. As it was Dr. Gerberding was simply speaking what is obvious.

David again:

The CISA Network (Clinical Immunization Safety Assessment), headed by the CDC, receives a report from top researchers at Johns Hopkins University that 30 typically developing children with mitochondrial dysfunction all regressed into autism between 12 and 24 months of life. At least two of them (6%) showed brain damage within one week of receiving simultaneous multiple vaccinations.

Now, I can’t answer this as much as I’d like to. I have spoken to people involved in the preparation and writing of this report (as has David) and I was given two take home points from our email chat:

1) The science is _not yet complete_ . The paper is not published.
2) The authors feel ‘disappointed’ in the slant David has put on their work and are loth to discuss it with anyone else due to that. I was told that David might be rather surprised when everything comes out later in the year.

David once more:

Medical Personnel at HHS concede an autism case filed by the family of Hannah Poling in the federal Vaccine Injury Compensation Program, before the claim can go to trial as a “test case” of the theory that thimerosal causes autism. Though portrayed by some (ie, Dr. Offit) as a legal decision, it is in fact a medical decision. HHS doctors admit that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine-induced fever and immune stimulation that exceeded metabolic reserves,”

First of all, I beg to differ with David. The concession was a legal one. By definition the phrase “autistic encephalopathy” does not exist in mainstream science so if it was used (a fact which has yet to be determined – I invite David once more to link through to the document where this is stated). A simple test of its non-existence is to search for the phrase on PubMed. I got:

Quoted phrase not found.

So we have a multitude of uncertainties here:

1) Nowhere (except in David’s writings) can we find evidence of HHS apparently saying “autistic encephalopathy” caused Hannah Poling’s autism.

2) The phrase itself (“autistic encephalopathy”) does not appear in the entire PubMed database, thus causing me to doubt its use by the medical establishment.

3) Is the concession legal or medical? If a diagnosis does not exist but is used in a legal document then by definition it must be legal – thats my opinion anyway.

David also mentions a HHS Vaccine Safety Working Group meeting but I know next to nothing about that so can’t comment.

I have to say that based on the above, David seems to be attempting nothing more than an intellectual ‘land grab’ i.e. to attempt to paint those who claim vaccines cause autism as part of the medical establishment and those who stand against them as not. Its a good political idea but I don’t think its going to work. There are just too many holes in this particular boat for it to float for long.

Legal Bombshell in Autism Omnibus Proceeding!

17 Jul

This is a Guest Blogged piece, written by a beloved legal expert – Clem Heckenberry.

In what can only be described as a legal bombshell, the Petitioners in the Autism Omnibus hearings seemingly withdrew four of its highest profile experts to support the various claims that say that vaccines cause autism. The experts are James B Adams, Mark Robin Geier, Boyd E Haley and Andrew J Wakefield. The ‘New’ experts are those we recognise from the testimony offered thus far. Indeed, this reporter can find no further mention of Adams, Geier, Haley or Wakefield as expert witnesses for the petitioners.

If this case was in the civil arena, the withdrawal of four experts of such magnitude would in all likelihood result in sanctions, a directed verdict or the total failure of the case as in the time Jeff Bradstreet (another expert for the petitioners) left his clients high and dry. There’s no way to spin this as a positive development for the petitioners.

Drs. Adams, Geier, Haley and Wakefield were apparently unwilling or unable to testify about the substance of their beliefs and ‘science, leaving only the report and testimony of Dr. Asphosian, a scientist who has not devoted significant time to the question of mercury and autism. (At one point in his career it’s alleged that Dr. Asphosian claimed that the argument that ‘the dose makes the poison’ was wrong.)

I spoke with various people about this development and they also agreed that this was knocking out some of the petitioners strongest pillars that autism is related to thimerosal or MMR. All those I talked to considered it difficult to underestimate the near-hilarious reputation of these four experts in the field of autism. Their apparent unwillingness to testify on these matters suggests they cannot sustain their previous assertion that thimerosal or MMR has anything to do with autism.

Although the parties are continuing to submit motions and it appears unlikely that there will be a decision this summer, the withdrawal of these experts are likely to have profound consequences.

UPDATE: There’s a good chance this might be satire, although the facts are true..

Amanda Peet and the Streisand Effect

16 Jul

I had never heard of the “Streisand Effect” until a few months ago. That’s when Clifford Shoemaker subpoenaed.

The basic idea is simple: someone tries to censor or remove some piece of information from the internet, and, instead, the actions cause the information to be much more widely spread than it would have been otherwise.

In the case of the subpoena, many (MANY) people heard about the neurodiversity.com site and, especially, some of the actions of Mr. Shoemaker, than would have happened had the subpoena not been issued.

I was reminded of this phenomenon today when I found that the Amanda Peet story has started to catch on big. Amanda Peet was quoted in Cookie Magazine with a very pro-vaccine stance. She had been scared by…

….the amount of misinformation floating around, particularly in Hollywood

So, what did she do? She asked a medical professional for advice. Dang, what a concept! She was very fortunate that her brother in law is a doctor and, even more luckily, he works at Children’s Hospital of Philadelphia (CHOP) where Paul Offit works.

Dr. Offit knows vaccines. Not in the, “I’ve read a ton in the internet” version of “knows” vaccines. No, He researches and develops vaccines. He is also a vocal spokesperson against the idea that vaccines cause autism. That, as you can imagine, makes him very unpopular with some segments of the autism community.

So, you can imagine what happened when Amanda Peet came out pro vaccine, against the vaccine-autism connection and stated that she got information from Dr. Offit. Yes, she got the usual hate-filled reception. And make no mistake, I am not downplaying that. I would not be surprised if she, like others before her, have had to forward emails or phone calls to the authorities because they seem threatening.

But, as time goes on, the message isn’t getting quashed. Salon.com picked up the story today and stated,

Now, Peet vs. McCarthy is the celebrity smackdown du jour. Sure, we’d all be better off taking our medical advice from doctors and nurses rather than celebrities. Yet, everyone from the American Academy of Pediatrics to Salon columnist Dr. Rahul Parikh has tried to reassure parents that vaccines don’t cause autism. Meanwhile, public health officials worry when public confidence in vaccinations continues to erode, in part because of high-profile celebrity advocacy, like McCarthy’s Green Our Vaccines march and rally held in Washington, D.C., in June.

And, what was that “smackdown du jour”? Looks like E! picked up the story as well.

All these web stories give the usual crowd an opportunity to add comments. The forums and comment sections for those stories are filled with people trashing Amanda Peet. I wish those people would catch a clue–have someone outside the autism community read what they write. The comments are strident, rude and, in general, really make the autism community as a whole look bad. It’s one thing to rant away in a closed yahoo group or in the comment section of the Age of Autism blog, but the public doesn’t know (and I wish they didn’t) just how mean and nasty these “advocacy” groups can be.

This story isn’t going away. Amanda Peet is now a spokesperson for Every Child By Two, a pro-vaccine organization founded by former first lady Rosalynn Carter. (as an aside–the Carters are one of the best ex-first-families the U.S. has seen).

Now that Amanda Peet has come down against the idea that vaccines cause autism, pretty much everything she says will be picked apart and analyzed. One comment that is giving a lot of ammunition to her detractors is this: “Frankly, I feel that parents who don’t vaccinate their children are parasites.”

Read the comments and how many people try to make it sound like Amanda Peet is calling autism parents “parasites”. (Hint, she didn’t).

Let’s take a quick look at that term, parasite.

a person who receives support, advantage, or the like, from another or others without giving any useful or proper return, as one who lives on the hospitality of others.

Now, let’s take a look at what Dr. Sears, one of the people often quoted by vaccine rejectionists, has to say about the MMR vaccine:

“I also warn them not to share their fears with other neighbors, because if too many people avoid the MMR, we’ll likely see the diseases increase significantly.”

So, he appears to this reader to be telling parents who don’t give the MMR vaccination to their children to keep mum, or the herd immunity will be compromised and the advantage to those parents will be lost.

Sweet. That doesn’t sound like “receiving advantage” without giving anything useful in return, does it?

Don’t get me wrong. For people with real reasons to avoid some or all vaccines (one regular commenter on this blog comes to mind). But, “I am scared of MMR causing autism so I am not going to vaccinate my kid, but I’ll hide in the herd immunity” doesn’t sit very well.

Also, where is the compassion for those who really need the protection of herd immunity? Where is the “Consider that your neighbor’s kids could use the advantage of your child’s immunity”?

But, to bring this back to where we started: Amanda Peet has hit the scene. She has jumped in with both feet, and appears to be staying for a while. A lot of voices appear to be trying to shout her down. Instead, they just seem to be giving Amada Peet’s message more coverage.

WXYZ and bad "investigative" reporting

11 Jul

Wouldn’t you love to move on from the thimerosal debate? Yes, I mean that as part of the greater move away from the vaccine/autism debate. But we are closing in on the end of the thimerosal era and, let’s face it, the nebulous arguments about “toxins” will be around for a while. People have learned the lessons of not making clearly falsifiable claims or setting deadlines for the “autism rate to decline”, so they will be able to keep the general vaccine discussion alive for some time to come.

But, we aren’t there yet with thimerosal. And, to prove the point, Steve Wilson at station WXYZ in Detroit has managed to regurgitate the standard thimerosal arguments. That would be not surprising. I expect a these aftershocks. What I is really annoying is the methodology. Orac has referred to it as “yellow journalism”, and I quite agree.

I will note that Orac and the Denialism Blog have both covered this in greater detail than I can. AutismNewsBeat has a journalist’s viewpoint as well.

Why am I annoyed with Steve Wilson? First off, he starts out by claiming that the “prevailing strategy seems to be to downplay the possibility of any link so that parents will continue to vaccinate their children”. (rough quote, sorry, I just don’t want to listen to that over and over again).

Sounds like a page from the Bernadine Healy playbook. Let’s imply something sinister is going on. Let’s imply that the AAP is hiding evidence. Steve: how about acknowledging that the “prevailing strategy” is to tell people what the science actually says? Doesn’t that seem like the “prevailing strategy” that the AAP and others are using? It does to me.

Another big chunk of the Steve Wilson’s report is based on this statement:

“..the truth is, there is still as much as ever..in 11 vaccines”

At this point, it’s worth reading Orac who lists the actual pediatric vaccines and their thimerosal levels.

You see, Steve Wilson pulled a classic con. Sorry to call it so bluntly, but that’s what I see. He talks about vaccines that aren’t being given to children young enough to develop autism. I don’t even know if the 11 vaccines he is talking about really do have thimerosal. Because, it doesn’t matter in this discussion. What matters is the pediatric vaccine schedule.

The part that bugs me is that Steve Wilson knows it. He gives as an example the thimerosal in tetanus boosters given to 11 year olds. Yes, he actually talks about 11 year olds.

Yep, the goalposts have moved so far, we are building new stadiums. 11 year olds being given tetanus boosters might develop autism. Except for Jim Carrey, who has ever implicated Tetanus shots? Even Jim Carry didn’t indicate that it was the booster given at age 11.

It appears to me that Mr. Wilson isn’t even going to the actual sources for his information. His report is a nice smattering of the standard vaccines-cause-autism line. One bit that caught my attention is when he talks about statements in the congressional record.

A congressional committee that studied the matter has already concluded: “Thimerosal…is directly related to the Autism epidemic.”

I was pretty sure that was a Dan Burton quote, so I Googled it to find the source. I came up with Deadly Immunity, by Robert Kennedy Jr, but I didn’t find the part of the congressional record with it. I looked a bit harder and found that the congressional record shows the statement as:

“Thimerosal used as a preservative in vaccines in [sic] likely related to the autism epidemic.”

I don’t agree with the above either. But, compare “likely related” (Steve Wilson) and “directly related” (congressional record). Somewhat different meaning, don’t you think?

I can’t resist putting out some of the list of “what do we know about mercury”? As it turns out, a lot. A lot more than I ever wanted to know, I’ll tell you that. A lot more than actually helps my family. But, here are some examples of what we know:

1) the dose makes the poison. Absolutely. There has to be a dose small enough that it would not cause toxicity.

2) mercury is everywhere. It was in the organic cinnamon-applesauce cup I just ate. It was in the organic lemonade juicebox I just drank. (sounds like I am the one on the playground, eh?).

3) When used in vaccines, it doesn’t increase the risk of most neurological disorders. Most? Yes, they didn’t include autism (see (5) below). Also, there were disorders that were indicated as possibly associated. Then again, there were some positive outcomes that were indicated as possibly associated with thimerosal. It looks like random chance–association is determined by statistics, and if you test enough associations, some will appear to be statistically significant.

4) when injected into pregnant women in RhoGaM type shots, it does not increase the risk of autism.

5) indications are that the upcoming CDC report on thimerosal and autism will show no increased risk.

6) Autism symptoms are not the same as mercury intoxication…autism is not “a novel form of mercury poisoning.

We could go on for a long time with the evidence against the concept that autism is caused by mercury. But, this is just a small list of the many things that somehow didn’t get into Steve Wilson’s investigative report.

Here's a story you won't see on Age of Autism

10 Jul

Not without substantial spin anyway.

The measles outbreak continues to push through the US:

The biggest U.S. outbreak of measles since 1997 has sickened 127 people in 15 states, most of whom were not vaccinated against the highly contagious viral illness, federal health officials said on Wednesday.

These are the consequences of not vaccinating.

Oh but measles is nothing right? Just a bit of a rash and then you’re done, right?

Maybe not.

A teenage boy has become the first person in the UK to die from measles for two years as cases of the disease continue to rise, Government scientists have said….The teenager, from West Yorkshire, who has not been named, had been born with a poor immune system, leaving him susceptible to infections and unlikely to have been able to be immunised. However, he would have been protected if there had been high vaccination rates in the community.

Because of the MMR scare in the late 1990s when the measles, mumps and rubella jab was linked to bowel disorders and autism, vaccinations levels have dropped below the threshold required to control the diseases.

Its really not difficult.

MMR doesn’t cause autism.
MMR helps raise herd immunity against measles, mumps and rubella.
High herd immunity means weakened members of ‘the herd’ don’t die.

Take MMR.

Chelation study to be 'released'?

9 Jul

AP print an even-handed account of the current state of a Chelation study. This study which was approved and then put on hold:

….for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats.

I’m really torn about this study. On one hand, it would put to rest once and for all the issue of whether chelation benefits autistic children (except it won’t. When it finds chelation does nothing it will simply be attacked as crap by the anti-vaccine/autism groups). On the other hand, it will mean putting a whole load of kids at risk for no purpose whatsoever.

“I don’t really know why we have to do this in helpless children,” said Ellen Silbergeld of Johns Hopkins University’s Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute.

Quite.

Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic. Here is a few snippets from the testimony of Dr Jeffery Brent – a sub-specialty board certified medical toxicologist. He is an active member of the medical school teaching faculty and is an attending physician on the clinical pharmacology/toxicology consultation service at the University Hospital. Currently he holds the rank of Clinical Professor of Medicine at the University of Colorado Denver. Dr. Brent has a long list of publications, virtually all related to clinical toxicology. He is senior editor of Critical Care Toxicology: The Diagnosis and Management of the Critically Poisoned Patient and serves as Editor-in-Chief of Toxicological Reviews, a major international state-of-the-art review journal devoted to human toxicology.

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration.

[For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re _supposed_ to have increased levels with provoked examples.

Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

So basically, when you do the provoked, non-standard tests from labs that make a good living from charging for these tests, they come back positive. When experts like Dr Brent do the gold standard tests, 100% of the time they come back normal.

*There is no reason to chelate autistic children* .

And here in this report is part of the problem. There seems to be a type of scientist who wants to short-circuit the scientific process:

Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn’t answering questions fast enough.

Well, boo-hoo. Its slow for a reason. Its slow to be as accurate as possible and to be as safe for humans as possible. Insel needs to remember that his patients – his duty of care – is not to parents, but to the autistic people in his case load.

And one more thing….in this piece, Jenny McCarthy says:

Actress Jenny McCarthy, whose bestseller “Louder Than Words” details her search for treatments for her autistic son, Evan, told thousands of parents at a recent autism conference outside Chicago that she plans to try chelation on him this summer.

I thought Evan McCarthy was recovered? Surely Jenny McCarthy isn’t – can’t be – wrong?

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