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Shannon Des Roches Rosa: Changing Conversations: When Parents Murder Disabled Children

11 Sep

Shannon Rosa is the incredible parent of incredible kids, one of whom is autistic. I could say this from what I’ve read because Ms. Rosa is an excellent writer, but I have also met her and Leo in real life. Ms. Rosa writes at BlogHer as well as The Thinking Person’s Guide to Autism and Squidalicious.

A recent BlogHer article she wrote covers a very important topic: how when a disabled person is murdered the conversation usually focuses on the murderer, not the victim

Changing Conversations: When Parents Murder Disabled Children

Her article starts:

Michigan parent Kelli Stapleton recently pled guilty to poisoning her autistic teen daughter Issy. According to police reports, Kelly lured Issy into a van, “drugged her, lit the grills and left the van to get more charcoal while her sleeping daughter breathed in poisonous carbon monoxide fumes.” Kelli and Issy both survived the attempted murder-suicide. Issy emerged from a coma and seems to be doing well; Kelli is in jail, and is scheduled to be sentenced on October 6th.

Go to Changing Conversations: When Parents Murder Disabled Children for the full article.

–By Matt Carey

Harpocrates Speaks on: MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

8 Sep

Todd W. over at Harpocrates Speaks has put together a FAQ like guide on the questions that come up with regards to recent research by Brian Hooker and the allegations Mr. Hooker has made about the CDC. That article is an excellent resource for people looking for some answers on this story. The article starts:

The anti-vaccine community has been in a tizzy lately over a supposed “CDC whistleblower”, Dr. William W. Thompson, who, according to them, revealed fraud at the United States Centers for Disease Control and Prevention (CDC). To bolster their claim, they point to a new study from one of their own, Brian S. Hooker, that purports to show evidence of an increased risk of autism among African American boys who receive their first MMR vaccine late. However, the claims appear to be hollow and unfounded, and so they have chosen to rely on emotional arguments that may sound convincing to those who are not familiar with the issues and people involved. In a truly egregious fashion, they have erroneously and cynically compared this whole thing to the Tuskegee syphilis study, and equated the CDC with Adolf Hitler, Josef Stalin and Pol Pot, combined.

With that in mind, here is a brief FAQ for parents, news media and others to help them understand what the claims are and what the evidence actually says. The questions below have been raised or implied by anti-vaccine activists. Hopefully, this will prevent inaccurate reporting and help parents feel reassured about the MMR vaccine.

That FAQ can be found at MMR, the CDC and Brian Hooker: A Guide for Parents and the Media


By Matt Carey

Every human life is worth living

4 Sep

This, like the previous article I wrote, is extremely difficult to write. I find words fail me and that a dry presentation doesn’t do justice to the topic. How, exactly, does one write about the fact that Germany has erected a monument to the disabled and mentally ill killed by the regime?

The New York Times discusses a monument erected in Berlin:

Monument Seeks to End Silence on Killings of the Disabled by the Nazis

BERLIN — The first to be singled out for systematic murder by the Nazis were the mentally ill and intellectually disabled. By the end of World War II, an estimated 300,000 of them had been gassed or starved, their fates hidden by phony death certificates and then largely overlooked among the many atrocities that were to be perpetrated in Nazi Germany in the years to follow.

One can read the full article on the New York Times website. And many other news outlets. I will take one more paragraph from the Times.

“Every human life is worth living: That is the message sent out from this site,” Monika Grütters, the German minister for culture, told a crowd gathered for the opening ceremony. “The ‘T4’ memorial confronts us today with the harrowing Nazi ideology of presuming life can be measured by ‘usefulness.’ ”


By Matt Carey

Comment on: Expression of Concern: Measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data

31 Aug

It’s in a peer reviewed journal. We’ve heard that a lot about Mr. Hooker’s recent paper “Measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data”

What does “peer” review mean when the person who wrote the paper has shown himself to have a bit of a problem with the truth? Who is the peer for someone who acts as the “priest” to a man in order to record his statements and put edited versions of them on the web?

I ask this because the editor of the journal Translational Neurodegeneration has published an “Expression of Concern”. I’ve never seen an editorial “expression of concern” before and I’ve been publishing papers for 25 or so years.

Here is that “Expression of Concern

The Publisher of this article [1] has serious concerns about the validity of its conclusions because of possible undeclared competing interests of the author and peer reviewers. The matter is undergoing investigation. In the meantime, readers are advised to treat the reported conclusions of this study with caution. Further action will be taken, if appropriate, once our investigation is complete

Let’s start by exploring the “competing interests” statement on Mr. Hooker’s recent paper. Authors are supposed to list whether and what conflicts of interest they may have so the reader can weight that when reading the paper. Mr. Hooker’s article lists as “competing interests” that “Dr. Hooker has been involved in vaccine/biologic litigation.”

If memory serves, Brian Hooker has used this “competing interest” statement before. I remember that because I found it odd given that his case as a petitioner before the Court of Federal Claims (vaccine court) is still ongoing. The way the above is phrased does not capture the active nature of his case.

What about the question the editors raised about peer reviewers? Well, we can only speculate because we don’t know who those reviewers might be. An author can often suggest possible referees for his/her paper when it is first submitted. One should be intellectually honest and not just recommend one’s friends. The editor is not bound to use the suggested authors. If not, the editor may look for similar papers in his/her journal and ask authors of those papers to referee. There are only three papers involving vaccines at the journal Translational Neurodegeneration presently. Two of those involved Mark and David Geier, the father/son team that has been much discussed here and elsewhere. It would be reasonable for the editors to think about the Geiers as referees. One of the papers papers is “A two-phase study evaluating the relationship between Thimerosal-containing vaccine administration and the risk for an autism spectrum disorder diagnosis in the United States”. It appeared in Tanslational Neurodegeneration last year.

Let’s take a brief aside. Ever heard of that paper? That’s what happens to mediocre science published by biased authors. No one cares. That is, unless, one comes out with dramatic press releases about “CDC Whistleblowers”.

Take a look at the competing interests statement in the “two-phased study”. It is the same as in the new paper by Mr. Hooker. Besides the fact that this doesn’t capture the active nature of Mr. Hooker’s case, it doesn’t capture the fact that Mark Geier is an expert witness in a case. Given that the Which is again odd as Mark Geier is currently engaged as an expert witness to Mr. Hooker’s ongoing court case. Mr. Geier has been hired by Mr. Hooker.

Back to the first paper–let’s say that one or both Geiers were chosen as referees. Either by recommendation of Mr. Hooker or because the editor is mining his previous authors. The fact that Mark Geier is working on active litigation for Mr. Hooker would be a pretty serious competing interest. Had Mr. Hooker recommended Mr. Geier, Mr. Hooker should have declared this business relationship they had.

Again, we can only speculate at this point. But this is an example of what sort of problem might be ongoing that the editors wish to investigate.

Mr. Hooker’s current paper (his reanalysis) has been replaced on the journal website with this statement:

This article has been removed from the public domain because of serious concerns about the validity of its conclusions. The journal and publisher believe that its continued availability may not be in the public interest. Definitive editorial action will be pending further investigation

My guess is that the editors took a second look at this paper after the very strange and very bad public relations campaign Mr. Hooker engaged in. Finding discussions by researchers online discussing how bad this paper is, the editors questioned how the paper got through. And found a possible problem with the referees chosen, resulting in their expression of concern.

From a list of discussions about the Hooker paper put together by educator/writer Liz Ditz:

  • August 22, 2014,  Orac Knows at Respectful Insolence:  Brian Hooker proves Andrew Wakefield wrong about vaccines and autism

    Of course, the key finding in Brian Hooker’s paper is that Wakefield was wrong. Indeed, in this video, Wakefield even admits that he was mostly wrong about MMR and autism. Let that sink in again. He admits that he was mostly wrong about MMR and autism. OK, he says we were “partially right,” but the flip side of that is that he must have been mostly wrong.

  • August 22, 2014, Reuben Gaines at The Poxes Blog: Andrew Jeremy Wakefield plays video director while African-American Babies die, or something

    Hooker is wrong in his assertions because the DeStefano paper did not leave out African-American children on purpose. Children were excluded from the analysis because of very legitimate and scientific reasons. They either were not the right age, did not have autism but some other neurodevelopment disorder, or were born outside of Georgia. Even if they were tossed into the analysis, DeStefano et al used a statistical analysis that took into account things like birth weight and mother’s age when analysing the data. They wanted to make sure that what they were seeing was most likely because of the MMR vaccine and not because of some other factor associated with autism.

  • August 23, 2014,  Ren at Epidemiological: Directed Acyclic Graphs and the MMR vaccine doesn’t cause autism.

    I’m very skeptical that Dr. Hooker’s simplified statistical approach can be better than DeStefano et al’s approach of conditional logistic regression. Conditional logistic regression has the advantage of being able to control for a multitude of confounders and effect modifiers.

  • Another cause for concern in my view would be Mr. Hooker’s declaration submitted with the paper. Authors are required to state that they are submitting original research. An analysis performed 10 years ago by someone at another organization (CDC in this case) which you duplicated is not, in my opinion, original research.

    Also there is a very broad competing interests statement on the Journal’s website

    Non-financial competing interests
    Non-financial competing interests include (but are not limited to) political, personal, religious, ideological, academic, and intellectual competing interests. If, after reading these guidelines, you are unsure whether you have a competing interest, please contact the Editor

    Mr. Hooker certainly has some personal and ideological interests. Here’s a YouTube video of a presentation he gave last year, and discussed here at Left Brain/Right Brain. It’s a Skype-talk.

    Here’s a screenshot:

    hooker_autism_inside_job

    His talk is “CDC — Ground Zero for the decline of children in the United States”. His logo on every page is a mushroom cloud from an atomic bomb explosion. The title of Mr. Hooker’s talk in the program for that event was “Autism-an inside job”. I’m going with strong “ideological interests” here. Both in his views on vaccines and on his views on the CDC. But anyone seeing the recent videos he produced with Andrew Wakefield would know that.

    When I wrote about this talk before I noted that it was presented at a 9/11 Truther online conference. Mr. Hooker let me know that he took offence to the implication that he is a 9/11 truther. I wasn’t making that implication then and I’m not now. I do think Mr. Hooker makes very poor choices when he chooses to lend his name to a 9/11 truther event.

    In this case, it isn’t that Mr. Hooker’s decisions are poor (they are), it’s that his choices show that he has a rather strong ideological stance on vaccines and the CDC. One which the editors of his recent article likely wish Mr. Hooker had disclosed when he submitted his paper.

    Of course, with all this in the public domain, this also begs the question of why “CDC Whistleblower” William Thompson chose to work closely with Mr. Hooker. But that is a discussion for another time.


    By Matt Carey

    CBS News on Judge Rotenberg Center: Controversy over shocking people with autism, behavioral disorders

    6 Aug

    Controversy over shocking people with autism, behavioral disorders is a story on the CBS News website today. In it, a former resident of the Judge Rotenberg Center is interviewed

    Jennifer Msumba is on the autism spectrum. For seven years, she was treated at the Judge Rotenberg Center in Canton, Massachusetts, where she received painful electric shocks aimed at modifying her behavior. She describes being strapped, spread-eagle to a restraint board and shocked multiple times before she left the center in 2009.

    “It’s so scary. I would ask God to make my heart stop because I didn’t want to live when that was happening to me. I just wanted to die and make it stop,” she told CBS News correspondent Anna Werner in an interview at her mother’s home outside Boston. “I thought, they won’t be able to hurt me anymore.”

    There is video of an extended interview with Ms. Msumba. Unfortunately, the embed code doesn’t work on this blog, but that video is here.

    The FDA is considering whether the electric shocks should continue. CBS reports that decision is due shortly.


    By Matt Carey

    Medicaid will start paying for autism therapies

    26 Jul

    Medicaid will start paying for autism therapies. The news was released at the last IACC meeting and I’ve been trying to work out how best to write it since. Seems pretty straightforward, doesn’t it? Not to take anything away from the person who presented it at the meeting but after a while of hearing things like:

    Those categories include: section 1905(a)(6) – services of other licensed practitioners; section 1905(a)(13)(c) – preventive services; and section 1905(a)(10)- therapy services.

    I just get saturated with the 1915(a) vs 1915(i) type language.

    Here’s the announcement: Clarification of Medicaid Coverage of Services to Children with Autism

    Here’s one of the first paragraphs:

    The federal Medicaid program may reimburse for services to address ASD through a variety of authorities. Services can be reimbursed through section 1905(a) of the Social Security Act (the Act), section 1915(i) state plan Home and Community-Based Services, section 1915(c) Home and Community-Based Services (HCBS) waiver programs and section 1115 research and demonstration programs.

    See what I mean? Take from this “the federal Medicaid program may remburse for services to address ASD”

    How did this come to pass? A lot of people have been pressuring medicaid for some time to provide autism services. This includes lawsuits, like this one in Florida (Judge: Florida Medicaid Must Cover Therapy for Autism).

    If you listen in or watch the IACC meetings, you know that for the past few years one of the sources of pressure on Medicaid has been from IACC member Idil Abdul. I don’t know if a meeting has gone by where Idil hasn’t talked about the inequities of a system where we say we will give medical support to our disabled poor, but we withhold support for treatments related to their disability. Or, to put it simply: why should kids with private insurance get speech, OT and other services while other kids don’t under medicaid?

    People often ask what is the value of the IACC and here is one of those unquantifiable benefits. Idil did what a public representative to a federal committee should do: she informed federal members of the needs of the community. Across the table from her was John O’Brien of Medicare and Medicaid Services. John is a good guy and would often patiently correct some factual errors in what Idil had said. But he had to listen to Idil.

    And for those of us who know Idil, when I say “she informed federal members” you have to know that “informed” is a major understatement.

    Would this shift in Medicaid policy have happened without Idil? It was a big group effort as I’ve already said. Would it have happened later without Idil? We can’t rerun the experiment.

    Just to be clear–this wasn’t an effort of the IACC. This was an effort of a member of the IACC. Made possible by her being on the IACC. It’s an odd distinction, but an important one. The structure congress created of the IACC got Idil’s voice in the right place at the right time.

    While on the subject of distinctions: as always, my comments are my own and they do not represent the views of the IACC.


    By Matt Carey

    Andrew Wakefield and Lance Armstrong: two unethical people exposed by the Sunday Times

    30 Jun

    The Sunday Times has a series of films (Unquiet Films, www.foreverunquiet.co.uk) has a series of short films about the impact of The Times has had over the years.

    Newspapers are all about stories – but sometimes the best stories are the ones we don’t tell.

    Let’s not forget that news is often something that someone, somewhere, doesn’t want you to know. The real-life tales of how world-changing exclusives – whether from foreign reporters under fire, or determined hacks banging against stone-walling bureaucracy – are brought out into the open can be just as extraordinary as the articles that end up in the newspaper. Sometimes the story behind our amazing photo-journalism, campaign to change the law on adoption, to make cities safe for cycling, to reveal the corruption at the heart of FIFA, or the lies of a champion like Lance Armstrong are as exciting as a thriller, as tense as an episode of House of Cards.

    We decided it was time to showcase just what the best journalists do… the real lives, real struggles, real bravery behind the newspaper stories that change the course of history. It’s all very well to boast that The Times and the Sunday Times strive to speak truth to power, without fear or favour and to report the truth, whatever the cost. But too often exactly what that takes – the death threats to reporters, the legal battles, the toughness and integrity it takes to get the article on the page – gets lost in the telling.

    So here, in a series of extraordinary and independently made short films are some of the amazing, true-life stories behind the stories – we hope you find them as moving and inspiring as we do.

    As an example of the “best journalists do”, they have a segment entitled “question everything“. It focuses on Brian Deer (whose work exposed the unethical actions of Andrew Wakefield, later found proved by the GMC) and David Walsh (who pursued and uncovered the Lance Armstrong doping scandal).

    From BAFTA-winning filmmaker Will Clark: We now live in a world where more often than not, only the surface facts of a story are reported. Real investigative journalism seems to be a dying art and I feel this is something we should all be deeply concerned about. I wanted to create a film that focused on two Sunday Times journalists whose pursuit for the truth turned into an obsession. From Lance Armstrong’s doping revelations to Andrew Wakefield’s fraudulent MMR claims, both were lengthy investigations that were published at risk by the newspaper. Both investigations also managed to reveal large scandals that would most likely have remained hidden were it not for the perseverance and tenacity of the journalists covering the stories. I’m sure every reporter has secretly wished for his or her very own All The President’s Men moment. This is the tale of two journalists who got their wish.

    Here’s the video:


    By Matt Carey

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