Another attempt at legislating an autism-vaccine study

4 Aug

Last week someone forwarded to me an email from the SafeMinds lobbyist. SafeMinds promotes the idea that vaccines, and specifically thimerosal which was formerly in vaccines, caused the rise in autism diagnoses observed in the past decades. The email asked for support for proposed bill in the U.S. House of Representatives, HR 1757.

I am once again saddened that such a vocal minority of the autism communities are focusing their attention on vaccines. Consider that right now there are three bills before congress that come up on a search for “autism”:

Autism Understanding and Training in School Methodologies for Educators Act of 2013
(which is stalled in committee)

H.R. 1757, Vaccine Safety Study Act
(the one that prompted this article, also stalled in committee)

and a Bill introduced just this week (so recent that the text of the bill isn’t online yet)

To establish a health and education grant program related to autism spectrum disorders, and for other purposes.

Three proposed bills on autism, two attempting to improve the lives of autistics and one on vaccines. Surely as a Country, we can do better than this?

Are we hearing a call for support for the other bills from these parent advocate groups promoting autism as vaccine injury? Not that I’ve seen. Are the sponsors of the vaccine bill (Members of Congress Posey and Maloney) cosponsoring the other two bills? No.

As noted, the text of the last bill (health and education grant program) is not up, but the sponsors are Representatives Christopher Smith and Michael Doyle. These are people who were instrumental in getting the Combatting Autism Reauthorization Act passed. These are people with autism on their radar.

By contrast, the main sponsor of the vaccine related bill is not a member of the Congressional Autism Caucus. The cosponsor, Representative Maloney is.

The point I’m trying to make here is this: there are two autism related bills which are not strongly supported by the vaccine-focused parent groups, nor the Members of Congress who are sponsoring the vaccine bill.

Back to the vaccine bill. Bills like this are not new, the bill is similar to ones that have been proposed before:

Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006
Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007
Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2009

All were proposed by Member of Congress Maloney. In 2006, the bill had 15 cosponsors. In 2007, 21 cosponsors. In 2009, 9 cosponsors. The present proposed bill has one sponsor (Representative Posey) and 1 cosponsor (Representative Maloney). Support for this bill, while never strong, peaked 6 years ago.

To put this in historical perspective, Robert Kennedy Jr.’s “Deadly Immunity” article (now retracted by Salon.com but still on Rolling Stone) and David Kirby’s “Evidence of Harm” were published in 2005. So it isn’t surprising that the bill enjoyed some support in the early iterations.

Most proposed bills do not get out of committee. The previous incarnations of this bill did not. Fewer bills become law. For example, in her tenure in the House, Member of Congress Maloney appears to have one bill make it to a public law. That bill was a reauthorization of an existing law (changing “dollars and dates”) Some motions by Representative Maloney, such as honoring ex President Clinton have been agreed to by the House.

I already mentioned that Congressman Posey is not cosponsoring the other two autism bills presently before the House. Nor is he a member of the Congressional Autism Caucus. In fact, Representative Posey, the sponsor of the current bill, was not a cosponsor of the 2009 bill, the year he was first elected to Congress. I don’t see him as a cosponsor of CARA. For whatever it is worth, he has received donations from a wealthy Floridian who has worked in the past to get autism vaccine research legislated (Crist backer Gary Kompothecras bullies Florida health officials)

So, with all due respect to Congressman Posey (and a request that he consider a broader support for autism related issues) I’m not seeing H.R. 1757 as an autism focused bill, but a vaccine focused bill. The name says it: H.R. 1757: Vaccine Safety Study Act.

How about the text of the bill? It was rebranded as the “Vaccine Safety Study Act” rather than the previous “Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2009″. It starts with some simple findings:

(1) Securing the health of the Nation’s children is our most important concern as parents and stewards of the Nation’s future.
(2) The Nation’s vaccine program has greatly reduced human suffering from infectious disease by preventing and reducing the outbreak of vaccine-preventable diseases.

I wonder how few people currently calling for support of H.R. 1757 would support a House Resolution making only point 2. I suspect the number is small. Vanishingly small. That before we even add point 4 “(4) Childhood immunizations are an important tool in protecting children from infectious disease.”

Then we get to the proposed findings which are more to the core of the views of those promoting this bill:

(5) The number of immunizations administered to infants, pregnant women, children, teenagers, and adults has grown dramatically over recent years.

(6) The incidence of chronic, unexplained diseases such as autism, learning disabilities, and other neurological disorders appears to have increased dramatically in recent years.

You get both the “scary correlation” and the rather interesting use of the word “dramatically”. We saw a “greatly” reduced human suffering in point 2, not a “dramatically reduced” human suffering.

Here’s another interesting proposed “finding”

(9) Childhood immunizations are the only health interventions that are required by States of all citizens in order to participate in civic society.

Really? Vaccines are “required” for children and then up to the point that you can say “I don’t want to do that to my kid” in 19 states (philosophical exemption) or “it’s against my religion” in 48 states (religious exemption) or “my kid has a doctor’s note saying he/she can’t be vaccinated” (medical exemption) in all states. How much income tax would be collected if the “required” taxes had the same out as vaccines? Also, “childhood immunizations” are required by “all citizens in order to participate in civic society”? Really? So, since I didn’t get, for example, a chickenpox vaccine, the MMR (or, my guess, M, M or R vaccines), or, really most of the childhood vaccines, I am somehow barred from participating in civic society?

Let’s limit this just to kids. What is meant by “civic society”? Unvaccinated children are allowed in schools, they are allowed in public places, they can’t vote (neither can vaccinated kids…they are kids after all). That’s what exemptions mean. What restrictions are there on unvaccinated children that Representative Posey is talking about here?

Let’s go on:

(10) Public confidence in the management of public health can only be maintained if these State government-mandated, mass vaccination programs–

(A) are tested rigorously and in their entirety against all reasonable safety concerns; and

(B) are verified in their entirety to produce superior health outcomes.

Makes us accept a few unsupported assertions. Let me approach it like this: vaccine uptake has remained, on average, high for decades. This without the study proposed in this bill. Evidently, vaccines are tested rigorously and in their entirety against all reasonable safety concerns and are verified in their entirety to produce superior health outcomes. At least as far as the US public is concerned.

Then we get:

“(11) There are numerous United States populations in which a practice of no vaccination is followed and which therefore provide a natural comparison group for comparing total health outcomes.”

If you think one of the “numerous” populations considered are the Amish, you’d be correct. They are mentioned later in the bill. They’ve been mentioned in previous versions of the bill. Even though the Amish do, indeed, vaccinate. There was some very poor journalism promoting the idea that the Amish don’t vaccinate (and that their are no autistic Amish, another incorrect statement).

The bill then goes on the instruct the Secretary of Health and Human Services to initiate a study of health outcomes in vaccinated and unvaccinated populations. The bill proposes dictating how the study will be undertaken. For example, here are the proposed qualifications for the investigator (why only one?):

(c) Qualifications- With respect to each investigator carrying out the study under this section, the Secretary shall ensure that the investigator–

(1) is objective;

(2) is qualified to carry out such study, as evidenced by training experiences and demonstrated skill;

(3) is not currently employed by any Federal, State, or local public health agency;

(4) is not currently a member of a board, committee, or other entity responsible for formulating immunization policy on behalf of any Federal, State, or local public health agency or any component thereof;

(5) has no history of a strong position on the thimerosal or vaccine safety controversy; and

(6) is not currently an employee of, or otherwise directly or indirectly receiving funds from, a pharmaceutical company or the Centers for Disease Control.

OK. From now on when the vaccine/autism groups promote a study supposedly linking autism with vaccines, I’ll ask if said investigator “has no history of a strong position on the thimerosal or vaccine safety controversy”. Many such studies are by individuals or teams with clearly strong views favorable to the autism/vaccine hypothesis. I note that people funded by or members of vaccine/autism groups are not barred from the proposed study. No, just people receiving funds from pharmaceutical companies or the CDC, or public health employees, or people who are on any committee which is interested in vaccines…

Then there’s the “Amish” clause:

(d) Target Populations- The Secretary shall seek to include in the study under this section populations in the United States that have traditionally remained unvaccinated for religious or other reasons, which populations may include Old Order Amish, members of clinical practices (such as the Homefirst practice in Chicago) who choose alternative medical practices, practitioners of anthroposophic lifestyles, and others who have chosen not to be vaccinated.

Why would the named groups be any more valuable to researchers than “…others who have chosen not to be vaccinated”?

It’s a useless clause. It’s worse than useless. One would want to study populations as similar in all respects save vaccination as possible. In their press release SafeMinds stated, ” Every 7th grader knows you cannot do a proper experiment without a rigorous control group that can be compared with the exposed group.” Choosing a group which is specifically different from the study group in areas other than the variable of interest would be, by definition, non rigorous. I’ll leave it to the reader whether every 7th grader would understand that, as some well educated adults do not.

The bill ends with:

(f) Transparency- To facilitate further research by the Secretary or others, the Secretary shall ensure the preservation of all data, including all data sets, collected or used for purposes of the study under this section.

This is essentially the “We want an objective researcher to perform this study but if his/her results go against what we hope for, we want the chance for our own people to work with the same dataset” clause.

One site I saw put the chances of this bill becoming law at 1%. In the email that was forwarded to me one thing I don’t recall being stressed was this. “http://thomas.loc.gov/cgi-bin/bdquery/z?d113:h.r.01757:

Sponsor: Rep Posey, Bill [FL-8] (introduced 4/25/2013) Cosponsors (1)
Latest Major Action: 4/26/2013 Referred to House subcommittee. Status: Referred to the Subcommittee on Health.

Yes. The bill was introduced 3 months ago (4/25/2013) and was referred to a subcommittee (4/26) and has not moved, nor collected additional sponsors in that time. Sure, it’s summer and things move slowly in Washington in the summer. But this has the markings of another failed bill. A waste of efforts. Efforts that could go towards supporting some other legislation, or creating some new bill which has the chance to impact the well being of today’s autistic population. But we aren’t seeing a call to action for that. Nor, I suspect, will we.

edit to add:

What’s missing from HR 1757? In my view, any mention of appropriations. The bill does not mention setting aside any money for this study. Sure, HHS probably can move money around and fund another study. But it makes me wonder whether anyone is serious about this getting out of committee.

The bill is essentially the same as the previous incarnations. The “transparancy” clause is new. Also new is this:

(b) Rule of Construction- Nothing in this Act shall be construed to authorize the conduct or support of any study in which an individual or population is encouraged or incentivized to remain unvaccinated.

Yes, they are making it clear that they are not asking for a prospective double-blind study where one group would be intentionally unvaccinated. I’d love to know how that new clause was inserted. It’s probably the simple reality that such a study is unethical and would make this bill dead on arrival.


By Matt Carey

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14 Responses to “Another attempt at legislating an autism-vaccine study”

  1. lilady August 4, 2013 at 17:24 #

    Excellent analysis Matt. The bill, as written is a total embarrassment for Mahoney and Posey. The “investigator(s)” should have no history of being pro-vaccine/pro-science or being anti-vaccine/anti-science…which eliminates everyone who has identified himself/herself with those groups.

    No appropriation for this new study? The bill will never come out of Committee.

    • Sullivan (Matt Carey) August 5, 2013 at 01:53 #

      A few years back Florida had a bill in process to improve services to families with autistic children. The bill stated

      “Section 1.?If the parent or legal guardian of a minor who is an eligible individual, as defined in s. 627.6686, Florida Statutes, believes that the minor exhibits symptoms of autism spectrum disorder, the parent or legal guardian may report his or her observation to a physician licensed in this state. The
      16 physician shall immediately refer the minor to an appropriate specialist for screening for autism spectrum disorder.”

      The bill somehow morphed into a vaccine bill. “Dr. Gary” backed the new bill. It would be interesting to see who pushed the changes of the bill.

      http://leftbrainrightbrain.co.uk/2010/09/30/florida-access-to-service-bill-morphed-into-vaccine-bill/

      I greatly appreciate it when legislators decide to support developmental disability causes. The present bill, like the Florida bill, isn’t the sort of support I believe we need.

  2. catherinajtv August 4, 2013 at 19:53 #

    how “qualified” can someone be who is not currently employed by any Federal, State, or local public health agency; and is not currently a member of a board, committee, or other entity responsible for formulating immunization policy on behalf of any Federal, State, or local public health agency or any component thereof?

  3. Lowell Hubbs August 5, 2013 at 03:16 #

    Educate yourself to the unbiased science and truth.

    Vacfacts
    http://www.vacfacts.info

    • Thomas Jones August 6, 2013 at 19:43 #

      That is THE most biased site I have ever seen!
      Educate yourself at immunize.org!!!

  4. Lara Lohne August 5, 2013 at 04:18 #

    It’s funny/strange to me, but the wording and restrictions they place on this particular bit of legislation almost seem to me like they WANT it to fail, or if it should, by some happenstance pass, not be able to be acted upon simply because nobody in the world would fit their criteria set for an appropriate researcher. Is it just me or does it seem like they do things like that on purpose to remain in their perceived martyr state so they can keep playing the victim role?

  5. Dave August 5, 2013 at 12:03 #

    It is not at all unusual for Congress to introduce bills to keep studying things that already have well-known answers. Climate change is one example, but there are plenty of others.

    I think your point is well-made. While Congress continues to focus on the distraction, the central questions remain unanswered. As you mentioned, we could spend the same time and money trying to figure out how best to support people already known to be autistic.

    More to the point, at least in terms of vaccine research, are there specific types of autism where live vaccines are not recommended? The recent research on chromosome 8p23 suggests that for certain individuals (who, by definition, would already be autistic), vaccines might not be a great idea.

    But vaccines seem to be a not-particularly-productive area for research by any definition, since most people who are autistic have already made the decision, one way or the other. Wouldn’t it be great if we spent the same amount of effort trying to fund group homes and even employment training?

  6. Science Mom August 6, 2013 at 16:27 #

    I like your slant on this issue Sullivan. It is very telling that some representatives are only interested in the ‘controversial’ and ignorant aspects of so-called autism research. It seems as though they are completely unaware of the longitudinal study that is being conducted examining child health and exposures from in utero environment to adulthood.

    I also think they (as in that segment of the autism community) don’t realise how they have written their cranks off as potential investigators given the wording of acceptable investigators. I agree it doesn’t stand a chance of passing; they can fund their own study.

  7. autismepi August 15, 2013 at 20:57 #

    Isn’t all this really missing the mark? Shouldn’t we be spending money investigating other environmental exposures such as the acetaminophen given to both pregnant women and infants?

    http://voices.yahoo.com/do-vaccines-cause-autism-pain-reliever-12207593.html?cat=5

    • Sullivan (Matt Carey) August 16, 2013 at 04:47 #

      not as smooth an attempt at thread-jacking as you might have thought.

  8. bad pharma September 11, 2013 at 07:54 #

    What’s wrong with asking for safer vaccines ?
    like the good ol days.
    now it’s profit before safety.

    • Lara Lohne September 11, 2013 at 09:35 #

      Safer vaccines is what we have now compared to what was originally released. That’s the funny thing about progress. When new ways of doing things better, safer and for less expense are found, then we do them. Vaccines are much safer, more cost effective to manufacture and will only continue to improve as we learn more going forward. The profit from vaccines is insignificant compared to what pharmaceutical companies would make if the vaccines were not as safe and effective as they are and disease was allowed to come back.

Trackbacks/Pingbacks

  1. The Amish may not be a great population for a vaccinated/unvaccinated study | Left Brain Right Brain - August 10, 2013

    […] recent attempt to legislate brought back the subject of the Amish, vaccination and autism. It’s an old idea, made popular […]

  2. A favorite tactic of the antivaccine movement: When science doesn’t support you, use the law « Science-Based Medicine - March 25, 2014

    […] to SafeMinds, as none of their favored investigators fit any of them! I’m also going to emulate Matt Carey the next time I see an antivaccine study and ask if the investigators have a history of a strong […]

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