Sunday, June 25, 2006

One More Time on "New Cases" for David Kirby and Others

Incidence In California Not Dropping - A Recap

Since 2001 all vaccines routinely recommended in the U.S. have contained only trace amounts (< 1 µg) of thimerosal. Thimerosal hypothesis proponents naturally expected the incidence of autism to drop as a result. In the absense of detailed ongoing epidemiological studies on autism incidence, they turned to administrative data, particularly that provided by the California Department of Developmental Services (CDDS) on a quarterly basis. CDDS, however, only publishes data on population sizes (caseloads), not data that could be used to determine incidence, such as numbers of clients entering the system every quarter.

Nevertheless, thimerosal hypothesis proponents came up with the notion that substracting the caseload one quarter minus that of the previous quarter is equivalent to the number of clients entering the system. This naive understanding of population dynamics led to claims that the incidence ("rate") of autism was beginning to show modest drops in California. These claims were quickly picked up by the press, which repeated the error verbatim.

The net difference in the numbers between quarters was dubed "New Cases", implying that this is roughly the number of children diagnosed in a quarter. Unfortunately, caseload numbers in the quarterly report represent only clients with active status. As CDDS itself explains in a document titled Data Interpretation Considerations and Limitations, differences in the numbers from quarter to quarter represent the net changes between newly reported clients and drop-outs. The significance of drop-outs should not be understated. Drop-outs include clients who have died, who have moved out of the state, who have been found to no longer be eligible for services, who have decided to no longer pursue eligibility, or who have had a change in their CDER category.

In fact, there is a report titled Active Status Population: Growth Analysis by California State University, Sacramento. It documents number of "New" clients and number of those who "Leave", from 1999 to 2004 (see page 7). The report shows that the number of clients who leave the system is not insignificant and was growing as of 2004. There is a small drop of 2.7% in new clients between 2002 and 2003, but this number grows again by 3.6% in 2004. The small drop in 2003 corresponds to a California law change (CA AB1762, W&IC 4512) specifically crafted to depress autism caseload growth. (Many children likely lost their CDDS eligibility after this law passed).

A good analogy for "New Cases" is "Number of Births" defined as the difference in the population one year minus that of the previous year. If "Number of Births" is defined this way, imagine what the "Number of Births" per year might be in a country with a constant population size.

We also know that the autism caseload in California is currently growing at a rate of about 10% annually, whereas the California population grows at a rate of 1.3% or so annually. It is unlikely that autism incidence is dropping given this fast caseload growth rate.

Nevertheless, caseload growth (what thimerosal hypothesis proponents call "New Cases") must drop necessarily. Let us imagine that annual caseload growth remains at around 2,500 indefinitely. Given population growth in the state of California, autism caseload would stabilize at about 192,000 in 64 years, which is highly unlikely. It is more probable that autism caseload will stabilize in about a decade at 40,000 to 50,000 with an annual caseload growth of 520 to 650 (130 to 162 quarterly).

Another way to tell that incidence is not dropping is to look at the 3-5 cohort caseload. Numbers in this cohort should change quickly in response to incidence changes. Consider that 5 year olds in the cohort will no longer be in the cohort next year. So it is necessary for many children to enter the cohort every year to maintain the caseload. We can see in the CDDS data that annual caseload growth in this cohort is about 10%. So it is highly unlikely that incidence is dropping.

Now that we have established that the incidence of autism is almost certainly not dropping in California, and that gradual drops in caseload growth are expected and not remarkable, let's see what thimerosal hypothesis proponents have said and continue to say about this issue.

David Kirby

On August 11, 2005, Citizen Cain attempted to inform David Kirby on the difference between 'entries' and 'net gain'. The post is long already, so let's just say David Kirby finally agreed to the following:

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

Note that Kirby accepts it should be a drop in the total number of 3-5 year olds, not a drop in the growth, or a drop in the growth of the growth, or any such nonsense. Yet, right after the Q1 2006 CDDS report came out, Kirby decided to grasp at straws and claimed in EOHarm that "yearly trends for 3-5 year olds are down" based on gradual drops in caseload growth in the 3-5 cohort. Again, he agreed there should be drops in the caseload. Drops in caseload growth are not meaningful.

And as Kevin Leitch points out, at the latest Autism One conference David Kirby apparently forgot what he told Citizen Cain. I have to wonder if this is honest forgetfulness or something Kirby feels he needs to do as the author of Evidence of Harm.

Geier & Geier

Epidemiological studies generally discuss prevalence or incidence. It was thus surprising that the journal JPANDS, a purportedly peer-reviewed journal, accepted a paper by Geier & Geier where they used the flawed "New Cases" terminology instead.

After I pointed out the significance of this error to the Editor-In-Chief of JPANDS, and my comments were forwarded to the authors, Mr. David Geier requested data on "new consumers with autism" (true new cases) from CDDS, in what appeared to be a frantic move. I was excited CDDS would release this data after it was funded, because this data would settle the issue (and would've been great blogging data). Unfortunately, months passed, and CDDS could not complete the work because it was not funded. Clearly, Geier & Geier either could not make the payment (which was probably less than what they charge a single client of theirs) or they were not interested in having this data become public.

A response to a commentary in JPANDS shows that Geier & Geier had decided instead to try a new party line. They would now tacitly admit to the error but claim that the "New Cases" calculation is an acceptable approximation on the basis that drop-outs are probably not significant:

Note than once a patient officially enters into the CDDS program, he is entitled to benefits for life. This method of analysis does not adjust for potential increases or decreases in the number of persons with the diagnosis of autism owing to factors other than a new diagnosis, such as population migration or death. While such events occur, it is highly unlikely that their frequency is changing from year to year in a manner that would account for the observed trends.


Geier & Geier must not be aware of the University of California active status population report, where we can see that drop-outs are significant and do change significantly from year to year. Further, Geier & Geier fail to note changes in eligibility and diagnostic category. Of course, if they had gone ahead and funded the work they requested CDDS to do for them, we could discuss this issue with better facts at our disposal.

Rick Rollens

Rick Rollens is perhaps the anti-thimerosal activist who has more often used the flawed "New Cases" terminology to claim that autism rates are dropping in California. To his credit, this is probably just honest ignorance. I do not believe he has strayed from this script, and has used this terminology up until the very last report from CDDS.

Wade Rankin

I don't know for sure what Wade Rankin thinks of the "New Cases" issue but he has said the following:

On a policy note, Rick Rollens addressed the California numbers and, more importantly, the California response to those numbers. The California DSS numbers are undeniably controversial and subject to various interpretations. But a sensible look at them indicates that something is indeed going on, and Californians should be grateful that people like Mr. Rollens are there to see that society doesn't simply bury its collective head in the sand.


For this to be about something that is "going on" in the present tense, he must be referring to claims of an incidence drop. Sensible things can usually be explained. I hope Wade can come by and explain the sensible reasoning by which we can arrive at the conclusion that "something is indeed going on" in California.

Summary

Thimerosal hypothesis proponents tend to use a flawed "New Cases" terminology to claim that the incidence of autism is dropping in California, when in fact we don't have data on incidence at our disposal, at least not after 2004 (when incidence was on an upward trend still). Some of them are aware of the flaw, but do not appear to mind repeating it. This raises some questions about the intellectual honesty of certain proponents of the thimerosal hypothesis. One might hope – but not expect – these people to come forward, explain their position and openly debate the issue.

21 comments:

  1. Great recap of the numbers and facts Joseph.

    I wonder if Kirby ever responded to Kathleen Seidel?

    His last Huffpo article was pretty weak, and he's still rehashing his book at speaking engagements from what I understand.

    I wonder what his next project will be? Maybe he'd like to write an article about the Geiers and Lupron.

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  2. Hi DoC. I don't believe Kirby has debated us, ever. I don't believe he is up to it. After he interacted with Citizen Cain, he stopped answering criticism as far as I know.

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  3. I am really pleased that there are people like yourself with the ability and desire to stick with a subject and pay attention to all the details while preserving the bigger picture. No wonder "they" want to cure you :-)

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  4. No wonder "they" want to cure you :-)

    I know. Now it's become urgent :)

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  5. Good round up Joseph. I don't expect you'll get answers - nobody on 'the other side' really seems to want to address specifics.

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  6. Actually, Joseph, my statement about Mr. Rollens' presentation at Autism One had nothing whatsover to do about the perceived drop. Mr. Rollens' presentation was more in the nature of a long-term look at the rise of the numbers in past years, and the response by the state of California to that rise. (This is not to say that the presentation did not give one cause to understand the value of looking at the current numbers, but that was not the focus of the talk.) It was a well-reasoned presentation that is available at a reasonable cost from Autism One. You might want to listen to it before you criticize what wasn't said.

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  7. Hi Wade. I assume the conference presentation is "The autism epidemic and the California response: California Dreaming or the start of something great?" There's no link in the site yet, and no, I'm afraid I'm not going to pay to listen to Rick Rollens. I'm familiar with his opinions, and he has never come forward to debate his continued claims that the incidence of autism is dropping in California. You did say it was sensible to conclude something is "indeed going on" in California. What exactly do you believe is going on right now?

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  8. Hey Wade,
    The quarterly California numbers are due out very soon. What's your well-reasoned prediction, up or down?

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  9. I'll give some specific predictions of my own: Caseload will be up, of course. Caseload growth will be down slightly. Annual caseload growth will be down to 10.2% - 10.3%. Caseload in the 3-5 cohort will be up and will reach around 6,000 kids.

    Who's taking the bets? :)

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  10. So Wade,

    What's your take on the recent Geier stories?
    Link 1
    Link 2
    Link 3

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  11. Joseph,

    What's been "going on" for the past several years is a rise in the need for services that cannot be accounted for by diagnostic substitution.

    Clone,

    I really have no idea of what the new numbers will do. I'm not sure what the stats from any one quarter can really prove.

    Dad o' Cam,

    Geeze, why is it that every thread I leave a comment on -- no matter what the subject may be -- has someone asking me what I think about the Geiers. Does anyone really think my opinion is that important? I should be flattered I suppose, but in truth, I find it kind of odd that nobody will rest until the world knows what I have to say. I expect you'll be a little disappointed that I don't have a lot to say. As far as the whole Lupron protocol goes, I frankly have not formulated a real opinion of it (despite the opinion that some people try to ascribe to me). I seldom think it wise to comment when I don't know what the hell I'm talking about (although I unfortunately have not always heeded that rule). As for Ms. Seidel's recent posts, which is what I think you are referring to, I have been following them with great interest. The issues Kathleen raises are legitimate concerns. I would like to hear more of a response from the Geiers themselves. Sorry to give such an anti-climax of an answer, but I really have nothing earth shaking to say on the subject.

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  12. Wade, let me quote you again:

    On a policy note, Rick Rollens addressed the California numbers and, more importantly, the California response to those numbers. The California DSS numbers are undeniably controversial and subject to various interpretations. But a sensible look at them indicates that something is indeed going on, and Californians should be grateful that people like Mr. Rollens are there to see that society doesn't simply bury its collective head in the sand.

    Semantically, it's hard to fit your answer here, unless you agree that rates of autism are still on the rise (which actually, they seem to be).

    In addition, I already argued in your blog that the number of total institutionalized individuals in California has dropped since 1992 (adjusting for population size). I didn't go back there, so I don't know if you replied. So I would conclude there's no "rise in the need for services" overall. Maybe there's a rise in the demand for services due to changes in the diagnoses given to kids and the kinds of services associated with said diagnoses. Also, given the changes in CDDS client characteristics which are plainly observable in their data, it would be difficult for you to make a convincing argument that there has been a real increase in prevalence.
    If you are able to make such an argument, please post it.

    Regarding Geier & Geier, I have good reasons to believe they currently don't have a good answer about what Kathleen has found - or maybe their lawyers have told them not to say anything.

    Your side is going to have to find new guys to do vaccine-autism epidemiology, because those were the only two guys to have claimed to do that.

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  13. Hi Wade.

    You wrote:

    Geeze, why is it that every thread I leave a comment on -- no matter what the subject may be -- has someone asking me what I think about the Geiers.

    Because you consistently claim (and sometimes as "we") to be in search of the truth. Much of the mercury causes autism hypothesis is alleged to be supported in some way by work of the Geiers (epidemiological and clinical- I know I've discussed the potential for possible for scientific misconduct in at least one study with you).

    Does anyone really think my opinion is that important?

    Your fellow anti-vaccine/anti-mercury folks probably do. You should let them know you'd like a response from the Geiers. Get the truth (like you claim to want).

    I should be flattered I suppose, but in truth, I find it kind of odd that nobody will rest until the world knows what I have to say. I expect you'll be a little disappointed that I don't have a lot to say.

    A little disappointed, maybe, but not surprised either.

    As far as the whole Lupron protocol goes, I frankly have not formulated a real opinion of it (despite the opinion that some people try to ascribe to me). I seldom think it wise to comment when I don't know what the hell I'm talking about (although I unfortunately have not always heeded that rule).

    Fair enough.

    As for Ms. Seidel's recent posts, which is what I think you are referring to, I have been following them with great interest. The issues Kathleen raises are legitimate concerns. I would like to hear more of a response from the Geiers themselves. Sorry to give such an anti-climax of an answer, but I really have nothing earth shaking to say on the subject.

    Yes, I'm referring to those posts, I linked them directly. Aside from the Lupron, what about the potential misrepresentation? What about the apparent lack of ethics with that IRB? What about ethics and honesty in general? You're looking for truth, remember?

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  14. So, is Wade saying that Californians are burying their collective heads in the sand because:
    A) The numbers of autistic children continue to rise because of vaccines containing thimerosal still in use there,
    B)The numbers of autistic children continue to rise because of assortative mating (Geek syndrome).
    C)The numbers of autistic children continue to rise because it's the nature of spreading awareness to bring in more children, plus the fact that the state's population is growing,
    D)Thimerosal is obviously implicated in the epidemic that is now past - obviously, but Californians are loathe to admit that taking the thimerosal out of vaccines was a good idea and has led to the diminishing numbers of autistic children, obviously,
    E) None of the above, Wade has no idea what it is that the Californians are ignoring, he's just spewing garbage to make himself sound like a leader in the "community,"
    F) None of the above, Wade is just playing word games for the sheer fun of "hearing himself speak."
    G) It wasn't really Rade Rankin at all writing about how vaguely interesting, if not amusing, the Geiers criminal actions are and how the Californians are burying their collecctive heads in the sand, it was JB Handley who has hacked into Wade's account and is posing as Wade?

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  15. Joe;
    You claim ALL vaccines in the US have only contained trace ammounts of thimerosal since 2001. How come some vaccines are still on the shelves with expiration dates of 2008 with the full level of thimerosal? How come the flu shot has 25 micrograms of thimerosal? Is this another attempt to skew the truth or an honest mistake?

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  16. I apologize to the group for responding to Fore Sam. I know it only encourages him. But for the benefit of any who are new to the topic and may be reading this:

    There are some vaccines that still contain thimerosal as a preservative. Examples are Japanese encephalitis and the DT booster that used to be given to teenagers (now obsolete with the introduction of Tdap). None of these thimerosal-containing vaccines are part of the standard childhood immunization schedule.

    Certain influenza vaccines, which are, of course, optional, are preserved with thimerosal, and these are available in pediatric formulations.

    Now, Fore Sam, we'll expect you to retain this information for future reference. No more playing dumb, please.

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  17. Polk;
    The flu shot is advised for children. That makes it part of the standard schedule. All of the others that still contain thimerosal are part of the standard. Since none have been recalled and no laws have been made outlawing thimerosal, you don't know where vaccines are that still have the full amount of it.
    I know most of you can't respond to me because you are fighting a losing battle. It must be difficult to be wrong about everything all the time.

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  18. Fore Sam,

    The post clearly discusses "all vaccines routinely recommended" not "all vaccines".

    How come some vaccines are still on the shelves with expiration dates of 2008 with the full level of thimerosal?

    Is this even true, and how much of the total vaccines in use do these represent? The reality is that as of 2001 it was very hard to find a single vaccine with thimerosal. Just ask Hornig.

    Regarding the Flu vaccine, even if every child has it (which I doubt is the case) the thimerosal dose per child (25 micrograms) is considerably lower than that of the 1980s. Do you argue differently? Therefore, if thimerosal is a significant cause of autism, the incidence of autism should be below 1980s levels right now. It is not.

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  19. ALLEGEDLY Rick Rollens is terribly difficult to work with and wants to see only data that matches his foregone conclusions.

    Here is Rollens on a roll about his supposed hard work and all who should be ever-so grateful:

    ---

    "For those ignoramuses out there [...] who do not know what I have accomplished for my and their children over the past ten years, read on. I might also add [...]that I was the first person in this state to persuade a Regional Center to pay for a 40 hour a week in home program. Every time a tudor comes to your house keep that in mind."

    "Iam really tired of these nobody parents who do nothing but bitch and complain coming after me about my relationship with ARCA (you should count your lucky stars that Iam there), questioning my loyalty to the autism community with cheap, unfounded, innuendos and remarks."

    "For those who are angry that Asperger's and other ASD's are currently NOT qualifying conditions for services in the Regional Center system, get off your ass and get the law changed." rick
    ---

    Signed,
    A Californian Who Will "count their lucky stars" When Rollens RESIGNS

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  20. ALLEGEDLY Rick Rollens is terribly difficult to work with and wants to see only data that matches his foregone conclusions.

    Interestingly, I have it in good authority that the MIND institute, which Rollens founded, is carefully looking at the CDDS data in detail (client characteristic changes, regional differences, real new cases, etc.) and drawing conclusions that contradict the epidemic rethoric and the thimerosal hypothesis. I wonder if Rollens will intervene there.

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  21. The only potential problem I see there is Rollen's role in both ARCA (remembering that ARCA 'represents' many of Cal's Regional Centers - www.arcanet.org) and then, of course, the MIND Institute.

    Although it's true that Rollens helped to co-found MIND it is not private entity, and it is part of the UC system (University of Calif -- a public entity). I certainly hope he's losing some of his sway, so that good science can come forth. Let's hope.

    I'm glad you're on-the-ready to check any and all numbers/data/stats that come out. Thanks for all your hard work.

    A Californian

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