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Something we’re all guilty of

6 Mar

We don’t always manage to hold on to our ideals as we are all people and sometimes we all screw up and do the wrong thing.

In the case of Kevin Leitch and Harold Doherty to name just two people, these people have ideals about using pejorative terms but don’t always see that the terms they _do_ use are just as pejorative.

So its time to change that behaviour I believe. From this point on LBRB will try its absolute best to be a pejorative free zone. We would never use racist terminology so using ableist terminology should be equally without a place on a blog dedicated to enhancing the rights of autistic people.

Some may believe this is political correctness gone too far but I don’t believe it is. It wasn’t that long ago that ‘idiot’ was pejorative, as was ‘moron’, ‘imbecile’ and a whole host of other terms. So lets not bring the stigma back to those terms and lets willfully try and not refer to people in these terms. We’re here to debate ideas, not to attack people after all. Its time I remembered that and its time a lot of others did too.

And whilst we’re at it, maybe when we’re visiting and commenting on others blogs, when we see behaviour like that in others, a polite pointing out of the pejorative nature of the word in question may dissuade them from using it again.

Brian Deer nominated for Specialist Journalist of the Year and News Reporter of the Year

25 Feb

Brian Deer, the investigative journalist who broke the story of Andrew Wakefield’s improprieties in his autism research, has been nominated for “Specialist Journalist of the Year” and “News Reporter of the Year”. The Press Gazette lists all the nominees in their piece The Press Awards: The Times leads with 18 nominations. For other non-UK residents, I’ve been told that The Press Awards are akin to the Pulitzer Prize in the US.

The article doesn’t cite the reason for Mr. Deer’s nominations, but it is a pretty safe bet that his articles on Andrew Wakefield in the BMJ had a lot to do with it. Links to those articles are below:

Secrets of the MMR scare: How the case against the MMR vaccine was fixed

Secrets of the MMR scare : How the vaccine crisis was meant to make money

Secrets of the MMR scare: The Lancet’s two days to bury bad news

Congratulations, Mr. Deer. It was a lot of hard work. Glad to see it recognized.

Age of Autism have a good old cry on Twitter

22 Feb

Back story: as Sully blogged the other day an American political cartoon strip had a bit of a dig at the anti-vaccine brigade. This provoked the following response from Age of Autism:

Yeah, thats right, Age of Autism truly see themselves as a victimised minority group. No really. They do. They’re putting themselves on the same footing as every Suffragette, every victim of Apartheid, every disabled activist and every poverty stricken member of a developing country thats ever lived.

Age of Autism have a slogan ‘the bull stops here’

and they’re absolutely right – thats exactly where the bull stops. In fact, it not only stops, it takes its slippers off, puts its feet up and stays for ever.

Age of Autism, you really need to get a grip. Maybe a name change might help (click for bigger).

Garry Trudeau of Doonesbury takes on Jenny McCarthy and the “bogus vaccine-autism link”

20 Feb

One of the big problems with the media has been their willingness to give the vaccine-induced-autism-epidemic idea far more wight than it deserved. While the science has been very one sided against the theories presented, the media usually puts out “he said/she said” type stories. You know the type. A new study will come out. A news story will be produced. They will open with people talking about the increasing numbers of people diagnosed with autism and the belief in the vaccine link in some groups. The scientists for the new study will be interviewed. And then the story will end with parents saying, “but I know the link is real”. It was a world of false balance.

That world has changed, at least for now. Sure not everywhere, but the media and the public’s perception of vaccines and autism has changed.

Case in point: the comic strip “Doonesbury”. For about 40 years Gary Trudeau has had his finger on the pulse of American society. He has been a harsh critic of political figures and popular culture figures (many papers have placed his comic on the opinion or editorial pages).

Here are a couple of panels from today’s strip (click to enlarge). Boopsie, former cheerleader and Playboy playmate, is discussing Jenny McCarthy:

The full strip can be found at Doonesbury.com.

The vaccine-causation idea has only survived through the media and public relations. The science never really supported the hypotheses. Jenny McCarthy rode the vaccine story back into the public’s eye, and appears to be trying to jump ship before it drags her back down. If today’s Doonesbury is any indication, she may have waited too long. She could do a lot of good by making a public statement distancing herself from the junk science and PR campaigns that created the image of a vaccine-induced-epidemic. It wouldn’t make up for all the damage she caused, but it would be better than having her publicity people beg the Colbert show to not be harsh on her, while she was at the same time writing pieces supporting the junk scientists for the Huffington Post.

When Doonesbury is calling you out for promoting a “bogus vaccine-autism link” and for causing real harm to preventive health care, you’ve lost public support. You can either try to stay low and ride it out, or do the right thing and repair some of the damage you’ve caused. The choice is yours, Ms. McCarthy.

California’s Specific Learning Disabilities Counter Epidemic

19 Feb

The U.S. and California Departments of Education recently released special education data (child counts) for the 2008-2009 school year. A particular focus in the media has been a tripling of the number of students who wear a special education label of “autism” in California.

Needless to say, some probably see this as confirmation of an “autism epidemic”. For a particularly myopic and emotional (anger and fear) interpretation of this recent news story, one need go no further than “Autism Epidemic” central (AoA) and read the data-free opinion piece by Anne Dachel.

For the bigger picture in California, a look at the actual data might be in order.

California Data

For those who may not be able to see the graph of the IDEA data that most closely represents the K-12 age group as a percentage of the resident population, receiving special education services for the last ten years in California: Autism has steadily increased from .13% to .64%, Specific Learning Disabilities has steadily decreased from 5.64% to 4.41%, and totals for all disabilities has remained flat at about 9.2%.

If you believe there’s been an “autism epidemic”, and that special education data from California proves that the schools are overwhelmed, here are a two questions for you:

1. What has caused the decrease in Specific Learning Disabilities (a decrease that more than offsets the increase in autism)?

2. If the special education totals remain unchanged, why are the schools “overwhelmed”?

Sloppy science – a perfect example of how the anti-vaccine crowd will listen to anything

11 Feb

Both Age of Autism and David Kirby have recently reported on a new review paper with Age of Autism describing it as ‘pretty interesting’ and David repeating a part of the abstract:

Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination.

So, should we all in the skeptic camp be reaching for our humble pie and our knife and fork? Not exactly. Lets take a look at the contents of this paper. Lets start here:

The vaccine organism itself could be a culprit. For example, one hypothesis of the cause of autism is that the pertussis toxin in the DPT vaccine causes a separation of the G-alpha protein from retinoid receptors in genetically at-risk children (Farfel et al., 1999; Megson, 2000). The pertussis toxin creates a chronic autoimmune monocytic infiltration of the gut mucosa lamina propia and may disconnect the G-alpha protein pathways, leaving some G-alphamodulated pathways unopposed. In turn, the non-specific branch of the immune system is turned on and, without retinoid switching, cannot be down regulated.

Wow, blinded with the cool science yet? No, me neither. Go back to line one where it says ‘one hypothesis’. All that follows from that point is mere opinion. There’s no science to back it up.

Another organism of suspect is the live measles virus…

Yeah except its really not. The issues with the Wakefield hypothesis are so many and so thoroughly debunked, it really isn;t worth my time or yours going through them again and again.

There is evidence that Thimerosal (which is 49% ethyl mercury) is indeed harmful. Since the 1930s, Thimerosal has been extensively used as an antibacterial agent in vaccines (Geier et al., 2007). Thimerosal has been implicated as a cause of autism. Not only is every major symptom of autism documented in cases of mercury poisoning but also biological
abnormalities in autism are very similar to the side effects of mercury poisoning itself (Bernard et al., 2001)

Oh dear. Reliance on more thoroughly debunked rubbish in the form of well, anything by the Geier’s and the ridiculous Bernard ‘paper’. I’m happy to go through why these are rubbish but I think I’d be preaching to the converted.

The rest of the paper is a rogues gallery of debunked and fringe science. Helen Ratajczak cites the Geier’s numerous times, DeSoto and Hitlan, Nataf and Rossignol to name but a few. This isn’t a paper so much as an advert for the sort of poor science that was examined in the Autism Omnibus proceedings and roundly rejected by the Special Masters. For goodness sake, she even cites David Ayoub of the Black Helicopter infamy.

When it comes to this paper – handle with extreme caution. Its toxic rubbish.

Russ Roberts hosts: Deer on Autism, Vaccination, and Scientific Fraud

2 Feb

I keep thinking I’ve blogged the last on this. But, I do think there is some interesting information here for some. In Deer on Autism, Vaccination, and Scientific Fraud, Brian Deer goes through the history of his investigation–how/why he got started, what tipped him off that something was amiss with Mr. Wakefield’s research, the mistakes Mr. Wakefield made in trying to handle and quash the story.

This post is long, but it covers a lot of material not about the investigation. It answers many questions that have been posed (such as what sort of job does Brian Deer have, how did he get access to information about the Lancet 12 children).

Investigative journalist Brian Deer talks with EconTalk host Russ Roberts about Deer’s seven years of reporting and legal issues surrounding the 1998 article in The Lancet claiming that the MMR vaccine causes autism and bowel problems. Deer’s dogged pursuit of the truth led to the discovery that the 1998 article was fraudulent and that the lead author had hidden payments he received from lawyers to finance the original study. In this podcast, Deer describes how he uncovered the truth and the legal consequences that followed. The conversation closes with a discussion of the elusiveness of truth in science and medicine.

Russ Roberts’ bio:

Russell Roberts, Associate Editor. Russell Roberts is Professor of Economics and the J. Fish and Lillian F. Smith Distinguished Scholar at the Mercatus Center at George Mason University. Before coming to George Mason University, Roberts was at Washington University in St. Louis where he was the founding director of the Center for Experiential Learning at the John M. Olin School of Business and a Senior Fellow at the Weidenbaum Center on the Economy, Government, and Public Policy. Roberts has also taught at the University of Rochester, Stanford University, and UCLA. He holds a Ph.D. in economics from the University of Chicago.

Roberts is a regular commentator on business and economics for National Public Radio’s Morning Edition. In addition to numerous academic publications, he has written for the New York Times and the Wall Street Journal. Professor Roberts is especially interested in communicating economics to non-economists. His first novel, The Choice: A Fable of Free Trade and Protectionism, a jargon-free book on international trade written for the non-economist, was named one of the top ten books of 1994 by Business Week and one of the best books of 1994 by the Financial Times. An updated and revised edition was published in the spring of 2000. His new book is The Invisible Heart: An Economic Romance (MIT Press, 2001).

Russ Roberts is the host of EconTalk, economics podcasts available here and through iTunes. He blogs at Cafe Hayek along with Don Boudreaux.

There is an audio podcast and a rough transcript on the site.

In 1998, when the Lancet paper came out with a big splash, Brian Deer was working on stories about the DPT vaccine. But he decided against working on the MMR story at that time. He knew that to do the story correctly meant a lot of work, not just publishing what Mr. Wakefield and the Royal Free put out in a news conference:

I happened to be looking at that purely by chance when Wakefield’s paper was published. I looked at his paper and thought there was something very odd about it, doesn’t sit right just reading it on the page. Said at the time I was absolutely not going to get involved in MMR. Journalistically at the time, allegations against vaccines, if you want to do them in a responsible way rather than simply go to government experts or parents or people with interests and write down what they say and present the clash of opinions–if you want to understand what the story is really about, they require an enormous amount of work.

Later, he got pulled into the story:

At the time people were already saying: MMR, Brian Deer, he’s our expert, based on what I’d done in DTP. But in 2003, one of the editors was changing jobs, taking over some feature pages; wanted some stories. Said to me: Can’t you do investigation? I said: Well, what? Three or four different ideas. One was MMR. Didn’t want to get involved because there was a lawsuit coming up. By serendipity the lawsuit was cancelled and we’ll just do a feature, spend 2-3 weeks on the outside on MMR. Three weeks turned into 7 years, though not the whole time. Did make a couple of TV shows about other things as well.

Brian Deer started on the story, and right away he got pushback from Andrew Wakefield:

When you started looking into that Wakefield study, how did you proceed and what did you discover? Did routine journalistic work. At the start, put a phone call in to Dr. Wakefield. He always works with professional publicists; this time his publicist, within about 3 hours of me calling, his publicist had made a complaint against me to the paper. A bit of a strategic mistake on their part. The essence of the mistake is I am self-employed. But I have worked for the Sunday Times since 1981–that is my home. I was a staff reporter, a specialist, they sent me to the United States, and so on. But they imagined that this meant I was some sort of outsider. When they got onto the paper and started making complaints, they were making complaints against somebody who actually sat at the next desk to the editor, who had worked with the head of the legal department since we were all young together. So, it didn’t work, the complaint. I was a known entity. Whilst I am regarded as being a difficult, mercurial person, I think it is true to say I am trusted. That was the first mistake they made.

Brian Deer made some phone calls. Talked to parents of the Lancet 12. He immediately found that there was a problem. The “case series” was heavily biased. The children were recruited. They were involved in litigation.

Right at the start I rung up some parents who had been in the original paper and interviewed them. Interviewed them in a way they had not been interviewed before. Produced important information within hours of beginning the story. Which was? I phoned a lady who had started a campaign group against the MMR back in the 1990s and she told me in the conversation that members of her group were in the Wakefield study; said: they are all members of our group and still in the group. So these parents who had turned up at the hospital, she told me they were all members of her campaign group. Immediately alarm bells started to ring, because nothing about that had been mentioned in the paper. They all just appeared to be routine patients of a big London hospital; but she was saying they were part of a group. A group that had been created before the study. It was the result of her campaigning. She put advertisements in newspapers and made approaches to a firm of lawyers.

He discusses the start of the interviews. How he interviewed one parent using “Brian Lawrence” and how the information he heard didn’t mesh with the Lancet paper:

How did you interview them and what did you discover? The key one in the series of 12 was family 2. The mother, it came out over a period of time, had been a long-time collaborator of Dr. Wakefield’s. I went to interview her; in fact, I used my middle name which had been editorially approved from my managers rather than my full name so they wouldn’t google me and see I was an investigative reporter. I said I was Brian Lawrence, my middle name. How were you representing yourself? My friends say I’m a journalist you wouldn’t want to write about you. You would google me. I asked her all the questions people ask, isn’t it awful; who do you blame? I then went into exceptional detail as to what actually happened when she said her child was vaccinated and developed these problems. Went over her story in great detail. She’d already recently been involved in litigation; so the matter was very clear in her mind. She told me a very detailed story. You could say: People forget, matter of time; but this was the moment when she was saying her child’s life had forever been destroyed. Have to expect she would have that in her mind. It was quite clear that the story she was telling me did not correspond with any case in Wakefield’s paper. What it boiled down to in her case was that she had changed her story, told one story when she’d gone to the hospital and now telling another story; and the two stories couldn’t be reconciled. The difference was when did the problems of autism first reveal themselves. In her story that she told the hospital, it was 14 days; but in her actual story, far from the case. In fact it was months. She’d given one story which suited the paper. She may have done so in complete good faith. Might have misremembered. But when she had the opportunity to study her child’s records, it was a different story.

He tells of the first stories coming out in the Sunday Times, revealing that Mr. Wakefield was working as a paid expert, his patent, and the fact that data from his own laboratory (from Nicolas Chadwick) showed that there was no evidence of measles virus in the gut tissues of the children.

As a result of that, Wakefield made his second big mistake. His first was to have complaints made against me to my employers. Second was to begin litigation. He sued for libel.

Because of the lawsuit, Brian Deer was able to obtain more information. He was pretty much forced to in order to defend himself in the legal action. He used the freedom of information act. This exposed the connection to the Legal Aid Fund and the documents from the ethics approvals for Mr. Wakefield’s research (which showed that Mr. Wakefield started before he had ethical approval).

He couldn’t have expected–maybe this was his second mistake and suing me was his third mistake–in late 1996, early 1997, going back to when Princess Diana was still alive, that the incoming Labour government, the Tony Blair government, with a commitment to produce a Freedom of Information Act. America’s had a freedom of information act for so long no one can remember when it began. We had one introduced by the incoming Blair government. Enacted in 2000, started to take effect in 2004. Because the government had told government bodies to act as if the Act was in force, I was able to get from public bodies the fact that Wakefield had been paid. Funding Authority, in Britain called the Legal Aid Fund. Kind of like public defender system except the government doesn’t provide the defenders–it provides the money. So, it was a government fund to allow access to poorer people to litigation which had funded Wakefield’s lawyer. He could never have expected when he was doing this research that all of a sudden his funding would be exposed to scrutiny, and also the Ethics Committee. In America called Institutional Review Boards. Bodies of doctors, scientists, others associated with medical centers which give permission for research to take place. The paperwork of that body of the Royal Free Hospital also moved into the public domain by the Freedom of Information Act. I think I was the first person ever to get hold of these kinds of papers.

Mr. Wakefield tried to get the lawsuit put on hold, but Mr. Deer was able to force the case to proceed. Mr. Wakefield kept the pressure up:

There were occasions. He also sued me for my website, for which I have unlimited liability, would have lost my home had it been true. I would be sitting at my computer doing some work and there would be a ring on the doorbell and there would be a man dressed in black leather with a motorcycle helmet on and he would present me with an envelope. This happened to me twice. I opened the envelope and there’s an [?] for Wakefield’s legal costs for the hearing that was going to take place the next day in court. The figures were about $30,000 U.S. dollars, that kind of money just for one hearing. That was the kind of pressure they were trying to put on me.

And this proved to be a tactical mistake for Mr. Wakefield. This gave Brian Deer access to the medical records:

The next stage which was very unfortunate for him was that we got a court order against him requiring him to hand over to our lawyers the hospital medical records of the children. I never took possession of them. The judge balanced the issues of the confidentiality of the children as opposed to the fairness of the litigation in front of the court. Ordered that I be allowed to read the unredacted–with their names and all their details–of the 12 children. There were just 11 at the time–the American wasn’t involved in this. So under strict supervision of my lawyers, with a lawyer sitting at the end of the table throughout, I sat and read the medical records of the children.

It appears that Mr. Wakefield knew that giving Brian Deer access to this information was a problem, as he chose this time to cancel his lawsuit. Brian Deer couldn’t use the information, but at this point he knew enough details to realize that there was an even bigger story here. So he attended the GMC hearings:

I have never said anything about what I read in those medical records. The position is that they were disclosed to me in the course of litigation and I may make no use of anything I saw in those records or disclose anything. As I was sitting there reading them, Dr. Wakefield’s lawyers were in a taxi travelling across London to the High Court to disband the lawsuit against me. When I got home that night–and I hadn’t taken any notes with me or documents–I went home, phone rang, and it was my lawyers saying: It’s over. They’ve thrown in the towel. So I’m in the position where I have read the medical records of these children but can make no use of the content of them. However, I have to say–I’ve talked to my lawyers about this–it is a fact that it’s impossible to un-know something. Once you know something, you can’t stop knowing it. Unrealistic. So, what I did was to ensure that I presented myself at the next opportunity where these medical records would go on display. And they would go on display at a Disciplinary Hearing which arose from my original stories.

Asked a “what next?” question, Mr. Deer responds that it is time to move on:

Not sure I want to spend a lot more time on long investigations. Saying of the Buddha: The things we dwell on become the shape of our minds. I’m kind of tired of the hunt aspect of it and the adversarial quality to investigative journalism, the extraordinary hours that have to be put in to it to get anywhere. The complex legal issues that are always coming up. In an ideal world I’d find something that didn’t require me to do more than write a couple of hundred words in a piece and be cheap and cheerful. But I have a feeling that is just how I am feeling at the moment and it won’t be long before something else comes along that I get interested in and get drawn off into. I think what I need now is a holiday! I for one now am grateful. Striking a blog against fraud doesn’t make up for all the pain and losses people suffered as a result of the fraud, but it will open people’s eyes down the road to other things.

Mr. Deer goes into the results of the investigation, both his and the GMC investigation. He discusses how Mr. Wakefield was found guilty of multiple ethical violations, including subjecting disabled children to procedures which were for research purposes and not in their clinical interest, dishonesty, financial issues, etc.. He discusses the costs, both in Mr. Wakefield’s expert fees (about $750,000) and the costs of the GMC investigation. The costs to public health as MMR uptake dropped in the UK and measles came back.

Most people in this subject have seen it in terms of vaccines, measles, infectious disease, autism, or things like that. From the start, I’ve always seen it as being as being an issue of the integrity of science. Whether this paper was true or not and how he could get away with how he got away with. I think it is a depressing picture. It’s been in the region of $10 million dollars to crack a case series of 12 patients. The money involved with the General Counsel hearing, the litigation involved, journalistic fees, and all the staff gone around this to get to the bottom of this little case series of 12 patients. The great bulk of science is not that interesting to the general public and therefore would not create the cause for a newspaper reported to be funded by a newspaper or television station to go after this for such a long period of time and get all this investigative work done with government regulators and what have you. So, you really would have to wonder what else is going on in laboratories and medical centers. The fact that Wakefield thought he was going to get away with it, and the casual way he went about it leads me to think he was working within a culture within which that wasn’t far from unusual, wasn’t far from extraordinary–the kind of misrepresentations he made were far from remarkable by common standards, I suspect. Part of it the nature of human beings; part of it the elusive nature of truth. Part of it is the nature of the publication process.

California regional center on probation

25 Jan

The California Department of Developmental Services (CDDS) has a simple charger: “The California Department of Developmental Services is the agency through which the State of California provides services and supports to individuals with developmental disabilities.” The CDDS works under the framework of the Lanterman Act. Key to the Lanterman Act is the concept that the state would empower local, private agencies to both manage and provide these services. From the management side, this lead to the Regional Center system. Regional Centers are local nonprofits which contract with service providers to serve the clients (developmentally disabled) in their area.

One of these regional centers is IRC–Inland Regional Center, which serves Riverside and San Bernadino counties (inland from Los Angeles).

The Sacramento Bee (the main newspaper for the State’s capital) ran this story earlier this month: California housing for developmentally disabled has high cost.

Now, I got to admit, I read that title and though, “uh-oh. Here comes another of those stories criticizing services for the disabled. But, here are the first few paragraphs of that story:

In 2006, a state-funded center serving developmentally disabled people spent $2.9 million to develop four houses for its clients in Riverside County.

Just months after the houses were completed, the county assessor’s office estimated the properties were worth $1.1 million less than the Inland Regional Center had paid to build them.

Four years later, they’re worth 31 percent of their cost.

The $2 million loss, as documented by tax records and assessor data, wasn’t just the result of a bad real estate bet made with public money by the regional center, which is part of the state’s system of 21 nonprofits charged with arranging care for developmentally disabled people.

I don’t know what is worse, the idea that services for the developmentally disabled cost too much on their own, or that some sort of mismanagement is costing taxpayers extra in their support of the developmentally disabled.

The Sacramento Bee has followed up recently with the story: Southern California center serving disabled put on probation

The state Department of Developmental Services has placed on probation the largest of 21 publicly funded regional centers serving developmentally disabled people, saying it illegally used state money to develop housing, violated the center’s contract with the state and circumvented a statutory freeze placed on rates paid to care providers.

The department sent a letter dated Jan. 19 about its actions to the center’s board in Southern California.

Ouch. Ouch on so many levels. Yes, as a taxpayer, I hate the idea of my money being wasted. On the other hand, this goes to the fact that organizations like the regional centers hold much more than the obvious (supplying support). They hold a large part of the reputation of the community. In times like these, with the economic stresses we are under, we can’t afford stories like those above.

Proposed California budget includes big cut for developmental services

24 Jan

In Governor Brown Proposes Massive Cuts to Social Safety Net, Marty Omoto of the California Disability Community Action Network writes:

$750 Million Reduction For Developmental Services

The Governor’s proposal for a $750 million reduction in state general fund spending for developmental services includes the 21 non-profit regional centers.

The bulk of that cut will most likely come from the 21 non-profit regional centers who coordinate community-based services and supports to over 240,000 children and adults with developmental disabilities. The regional centers contracted under the Department of Developmental Services (DDS) also coordinate the state’s early intervention program – called Early Start – that serves over 25,000 infants.

The proposed $750 million reduction does not include any lost federal matching funds which would like push the total reduction in spending in developmental services to close to $1 billion (all funds). This reduction is on top of 2009’s permanent and on-going $500 million reduction (including federal funds lost) in developmental services (the bulk of it impacting regional center funded services).

The $750 million reduction in State general fund spending proposed by the Governor would include the continuation for at least another year of the existing 4.25% reduction in payments to most regional center providers and to regional center operations which was scheduled to end as of June 30, 2011. That reduction would, under the Governor’s proposal, continue at least through June 30, 2012 – though the savings or reduction amount actually is permanent.

The reduction also would be achieved through several unspecified measures, including imposing new accountability and transparency measures; and implementation of a statewide purchase of services standards – first attempted in 2002 by Governor Gray Davis.

Many readers here will know of the Regional Centers as the source of data used by many to track autism “rates” over time. The Regional Centers (RC) are California’s method of administering support services to developmentally disabled residents. Each RC covers a large territory and is responsible for purchasing services from private vendors. This method would be in place of a system where the state employs the administrators and the service providers directly.

That said, the recent budget proposal includes $750,000,000 in cuts for services for the developmentally disabled. This will incur an estimated $250M in lost matching funds and is in addition to previous cuts already enacted.

Take the numbers and do the math, using just the $750M amount as a start. Use 265,000 people served by the CDDS. That’s about $2,800 per person. These are not small cuts.

And there is no end in site to the economic woes of the State.

The Lancet’s two days to bury bad news

19 Jan

Part three of Brian Deer’s series in the BMJ, The Lancet’s two days to bury bad news, has just been released. As you can imagine from the title, he lays out how the Lancet responded to the news that Brian Deer was publishing a story on the Wakefield team’s article in The Lancet.

Brian Deer’s first article in the Sunday Times was published February 22, 2004. On February 18, Mr. Deer met with the editor of the Lancet and other senior staff for five hours.

I had assumed that when I finished Horton would say that an investigation was needed to untangle these complex matters. There were at least three strands: possible research fraud, unethical treatment of vulnerable children, and Wakefield’s conflict of interest through the lawyer. But within 48 hours, and working with the paper’s three senior authors, the journal was to publish a 5000 word avalanche of denials, in statements, unretracted to this day.

Mr. Deer has investigated what was going on behind the scenes at the Lancet and at the Royal Free. Statements to the press claim by Richard Horton, editor of the Lancet, claim that an investigation was made at the Royal Free which “cleared Wakefield of wrongdoing”. According to Mr. Deer’s investigation, no formal investigation was conducted. Rather, the Royal Free chose Doctors Wakefield, Murch and Walker-Smith, authors of the paper in question, to prepare the response.

The Lancet’s statements came on on Friday, 48 hours after the meeting with Brian Deer and 2 days before his article was set to run in the Sunday Times in an apparent attempt to

“The Lancet editor’s actions have been to regard the allegations . . . as allegations of research misconduct, and following the medical editorial code has carried out an investigation according to agreed guidelines, and intends to publish the result of the investigation pre-emptively,” Hodgson told his UCL superiors in a memo that Friday. “No doubt one—but I believe only one—motive is to safeguard the Lancet’s reputation by getting the riposte in first, and ‘spoiling’ the story.”

The media furor over these revelations led to, amongst other things, the GMC hearing which would eventually strip Mr. Wakefield of his license to practice medicine in the UK:

Wakefield attempted to brazen it out, issuing a further statement to media. “It has been proposed that my role in this matter should be investigated by the General Medical Council,” he said on the Monday. “I not only welcome this, I insist on it, and I will be making contact with the GMC personally in the forthcoming week.”

The same day, a caseworker for the regulator called me from Manchester. Did I have any further information? And two days later, at 12.16 Wednesday, I emailed him the conclusions of my research. I summarised what I had said to the Lancet’s senior staff and pledged my cooperation, in the public interest.

The above sets out the timeline for the onset of the GMC hearing. For those who continue to claim that Mr. Deer was the “claimant”, I doubt even more evidence will dissuade them.

The editorial that the BMJ published along side the Deer article is clear in how serious they take the lack of oversight that went into this research and the initial investigation, placing Mr. Wakefield’s work alongside some of the worst examples of medical research gone wrong in the past century:

Unfortunately, we have been here before. Investigators involved with the 1932 US Public Health Service Tuskegee Syphilis Study deceitfully enrolled subjects with latent syphilis and denied them available treatment for 40 years in order to study the natural course of the disease.(4) As part of a 1963 study to determine the body’s ability to reject foreign cells, patients at the Brooklyn Jewish Chronic Disease Hospital were injected with live cancer cells without their knowledge and without oversight from the institution’s research committee.(5) From 1944 to 1974, the US government conducted several radiation experiments, some of which involved the use of non-therapeutic radioactive tracers in children and increased their risk of developing cancer.(6) And in 1981, it was discovered that John Darsee, a clinical investigator at Harvard Medical School, had fabricated data in several experiments published in high profile medical journals that ultimately culminated in widespread retractions of his work and a ban from funding from the National Institutes of Health for 10 years.(7) These experiments have since become symbolic of unethical research on human subjects and of scientific misconduct, and there is little doubt that Andrew Wakefield’s 1998 study will too.(8)

They go beyond this and ask the pertinent question–how did this happen and how do we avoid it in the future?

How could this happen again? To answer this, perhaps we need to focus less on the people involved and more on the defects within the biomedical research enterprise that permit such egregious misconduct. After all, Wakefield was able to circumvent the existing safeguards established to ensure the responsible conduct of research, the protection of research subjects, and the accurate and honest publication of research findings.

The editorial discusses that “research incidents” like those surrounding Mr. Wakefield should be framed as adverse events and attacked similarly. It is a model which will no doubt be criticized by those who see autism as an adverse event to MMR, but it does lay out a framework of how to respond.

The editorial concludes:

Thirteen years later, we are only now beginning to understand the root causes of the multiple system failures involved in the Wakefield incident. We must strengthen our ability to investigate research adverse events. We need to use the tools and techniques available to protect the safety of patients in the clinical realm to protect research subjects. We also need to rethink and reform our customs and culture. The disastrous impact that Wakefield’s study has had on vaccine coverage, recrudescence of disease, public trust, and, most of all, science, requires that we do so in haste.

As we leave this subject, it is worth looking to the words of Andrew Wakefield himself. Words which resonate in a manner Mr. Wakefield did not intend, but resonate nonetheless:

The medical science, the medical system, the scientific system has failed you, for which I am ashamed.
–Andrew Wakefield, May 26, 2009.

He meant the statement as an accusation, that he was ashamed on behalf of the rest of the system, not his own missteps. I find the statement clearly ironic. He is correct, the medical science, the medical system, the scientific system has failed us. His efforts in the Lancet (and elsewhere) are an example of that failure. They do not stand outside of it.

Science has a very difficult choice. To choose between fidelity or collusion.
–Andrew Wakefield, May 26, 2009.

Too right, Mr. Wakefield. Too right. Of course, science had that choice in 1998 as well. You made the wrong choice.