Archive | Orgs RSS feed for this section

Vaccines and Autism: A Story of Medicine, Science and Fear

2 Feb

Tomorrow on National Public Radio (US) The Diane Rehm Show will host a discussion of autism and vaccines: Vaccines and Autism: A Story of Medicine, Science and Fear

In 1998 a research paper was published that linked the childhood measles, mumps and rubella vaccine to the onset of autism, a life long developmental disorder. Follow up studies could not replicate the findings casting doubt on its conclusions, and earlier this year it was proven that this original study was, in fact, fraudulent. But the damage was done. Childhood vaccination rates dropped resulting in outbreaks of measles and whooping cough. Funds that would have gone to new research into the causes of autism were diverted, and surveys indicate that about one in five Americans continues to believe that a childhood vaccine can trigger autism. A story of fraudulent medical research and its consequences.

Guests will be:

Seth Mnookin: Author of “Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top” and “Hard News: The Scandals at the New York Times and Their Meaning for American Media.” He is a contributing editor at “Vanity Fair” and a former senior writer for “Newsweek.”

Dr. Roberta DeBiasi: pediatric infectious diseases physician at Children’s National Medical Center

Alison Tepper Singer: Founder and President of the Autism Science Foundation, formerly Executive Vice President of Autism Speaks, served on the federal Interagency Autism Coordinating Committee (IACC.)

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.

Increase in NIH autism projects over the past decade

18 Jan

We hear repeatedly how research interest in autism has climbed in the past decade. I was looking through the NIH database of autism research projects and I decided to check on the number of projects that the NIH has funded by year.

Here are those data: research projects by fiscal year. In the past 10 years, the number of projects funded per year has increased by about 3x or 4x.

Quantity isn’t the same thing as quality by a long shot. But I do find this very encouraging.

Jenny McCarthy joins the defense of Andrew Wakefield

12 Jan

One of the defenses of Andrew Wakefield is that his paper doesn’t actually claim to have proven that MMR and autism are linked. You can find it in the interviews, you can find it on the Generation Rescue (Jenny McCarthy’s autism organization) website:

The mainstream media is in a frenzy over a new “study” claiming that Andrew Wakefield’s 1998 Lancet paper was fraudulent. For years, the media has mischaracterized Wakefield’s work as implicating the MMR vaccine in the autism epidemic. This was never true, as Wakefield himself wrote in the conclusion to his paper:

“We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described.”

You can find it in Jenny McCarthy’s blog post on the Huffington Post:

Is that the whole story? Dr. Andrew Wakefield’s study of 12 children with autism actually looked at bowel disease, not vaccines. The study’s conclusion stated, “We did not prove an association between measles, mumps and rubella vaccine and the syndrome described [autism].”

And, they are correct. The paper does state that. And it is correct, the study did not prove any link. Which leaves us with the question: how could the press have made such a mistake as to think that the paper supported a link?

For starters, from Andrew Wakefield himself.

From the video that his employer at the time, the Royal Free Hospital put out:

DR ANDREW WAKEFIELD: I think if you asked members of the team that have investigated this they would give you different answers. And I have to say that there is sufficient anxiety in my own mind of the safety, the long term safety of the polyvalent, that is the MMR vaccination in combination, that I think that it should be suspended in favour of the single vaccines, that is continued use of the individual measles, mumps and rubella components.

He called for a suspension of the MMR vaccine at the time. Pretty strong message to send to parents.

In addition, as Jenny McCarthy tries to distance Andrew Wakefield from linking MMR and autism, let’s take a look at her own website, Generation Rescue dot com. They claim that the number one paper that supports the idea that a trigger of inflammation and the current resultant behaviors is the Wakefield 1998 study in The Lancet:

Children with neurological disorders are often suffering from severe gastrointestinal distress and inflammation. A trigger of this inflammation and the resultant behaviors is the MMR vaccine.

We cite four published studies that support this position:

Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children
Lancet 1998 Feb 28 Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, [University Department of Medicine, Royal Free Hospital and School of Medicine, London, UK]

Not surprisingly, the exact same text is included on the “14 studies” website, a site set up by Generation Rescue.

So, according to Generation Rescue, the Lancet article supports the position that the MMR is a trigger, even though the article itself says it doesn’t prove a link.

Generation Rescue and Jenny McCarthy have spent years putting the notion of a link between MMR and autism into the public’s mind. They have relied, heavily, upon the Lancet paper to make this assertion. And now they blame the media for propagating this idea?

Fact checking the Age of Autism’s defense of Andrew Wakefield

11 Jan

The BMJ article, How the case against the MMR vaccine was fixed, has had a lot of media coverage in the United States. With that coverage has come the defense of Andrew Wakefield, by himself and a few others. As a part of the defense (arguably the bulk of the defense) has been an attack on Brian Deer, the investigative reporter who wrote the article. I say attack because the main accusation, as you will read below, is false. Easily verified as false.

Consider this, on CNN’s Anderson Cooper 360, Mr. Wakefield made the accusation:

WAKEFIELD: Well, that’s interesting you should say that, because he was supported in his investigation by the Association of British Pharmaceutical Industries, which is funded directly and exclusively by the pharmaceutical industry. So…

On CNN with Ali Valshi, Generation Rescue founder J.B. Handley made the following statement:

“The British Medical Journal is only publishing allegations from a single investigative journalist named Brian Deer, who was funded by a pharma front group for four years to investigate Andy Wakefield.”

He later states that Brian Deer was “…funded by pharmaceutical groups from the getgo”.

Where did this accusation come from?

In a blog post, Mr. Handley let’s us know how he came to this conclusion:

In fact, Deer was originally funded to investigate Andy by a front group for the Association of the British Pharmaceutical Industries, just as Andy Wakefield said. From a confidential source:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

We also see the story shifting we also see the story shifting. Instead of “funded from the getgo” or “funded by a pharma front group for four years” we find that he was given “free assistance” We don’t even know how much free assistance.

An unsupported assertion is made that the company is “owned and controlled by the Association of the British Pharmaceutical Industry”.

At least we have something we can verify. A claim like this should be verified, one way or the other. So I did. I contacted Medico-Legal Investigations. I posed a simple question:

You may be aware that Brian Deer has recently published the findings of his investigations showing that Andrew Wakefield committed research fraud in his investigations into MMR and autism. In retaliation, Mr. Wakefield and his supporters are claiming that Mr. Deer is conflicted himself. As part of this, they claim:

“When Brian Deer began his investigation of Andy Wakefield, he was supported by a pharmaceutical front group”

To support this, they claim:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

Can you confirm whether this statement is, in fact, true?

The response?

The statement in bold lettering is totally false. We had no idea he was undertaking this investigation until he was about halfway through. At that point, and knowing that we were the only people in Europe experienced in the investigation of research fraud and misconduct, he contacted us to seek advice on a general issue related to Ethics Committees. We had a one off meeting with him and were able to offer guidance without knowing the details of the confidential investigation. I would like to know how anyone can say we are a pharmaceutical front group – we have always retained our independence.

We have never been owned or controlled by the ABPI – that is complete and utter nonsense. We have been supported by the ABPI and, indeed, the medical Royal Colleges. In order to ease our cashflow crises (there is never enough work to cover the costs of running a business) a few pharma companies paid an annual subscription to us in return for reduced rates for training and investigations. That does not mean that we were controlled by them. I pay annual subscriptions to magazines and get cheaper copies but I do not have editorial control!

Finally we specialise in the investigation of possible fraud/misconduct in research. When we are 70% certain that we have enough evidence to prove serious professional misconduct we report the facts to the GMC who conduct an Inquiry into the allegations. We also investigate other health sector matters and if a criminal offence is disclosed we report to the police or embark upon a private prosecution through the lawyers of our clients (other statutory bodies). The protection of patients is primarily our concern.

I hope this helps

Shall we count the errors in Mr. Handley’s attack?

1) Medico-Legal Investigations had no part in the investigation. They only offered a one-off meeting on medical ethics. Medico-Legal Investigations was unaware of the specifics of Mr. Deer’s investigations.

2) Medico-Legal Investigations is not “owned and controlled by the Association of the British Pharmaceutical Industry”. Thus it is not a “front group”.

3) On top of all that, Mr. Deer was not even funded by Medico-Legal Investigations.

4) The association with Medico-Legal Investigations was a simple meeting, as Mr. Deer was over half way through his investigation. The association was not “from the get go” and was not “four years” (funded or not).

In essence, we see what Mr. Wakefield and his supporters are reduced to: a publicity campaign. Get their message out, accurate or not. Attack the source rather than address the allegations.

The Big Lie – what Andrew Wakefield did was possible and fraudulent

10 Jan

Earlier this week, the blog Child Health Safety published a piece claiming it was impossible for Andrew Wakefield to have acted fraudulently. Earlier today, JB Handley of Age of Autism published a similar piece:

“It was not possible for Wakefield or anyone else to falsify the prior clinical records of the children because no one at the Royal Free Hospital London had them nor is it normal practice for them to have had them. So there could be no fraud over ‘altering’ those histories. It just was not possible.”

Plain English: In Britain, when you are referred from a local doctor to a major hospital, like the one where Andy worked, your previous doctor’s records DO NOT travel with you.

Hmmm. Lets look at the definition of the claim of fraud from the editorial in the BMJ.

The Office of Research Integrity in the United States defines fraud as fabrication, falsification, or plagiarism. Deer unearthed clear evidence of falsification. He found that not one of the 12 cases reported in the 1998 Lancet paper was free of misrepresentation or undisclosed alteration, and that in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal.

This quite clear – but don’t CHS blog and JB Handley have a point? If Andrew Wakefield couldn’t see the NHS records, how could he have falsified data? He might have been wrong, but fraud? No. If Wakefield couldn’t have seen those NHS records he could not have altered data from them to enhance his Lancet piece.

Except he _did_ see these children’s NHS records. From the very paper itself, we can glean the following:

12 children (mean age 6 years [range 3–10], 11 boys) were referred to a paediatric gastroenterology unit
with a history of normal development followed by loss of acquired skills, including language, together with diarrhoea and abdominal pain. Children underwent gastroenterological, neurological, and developmental assessment and review of developmental records.
Ileocolonoscopy and biopsy sampling, magnetic-resonance imaging (MRI), electroencephalography (EEG), and lumbar puncture were done under sedation. Barium follow-through radiography was done where possible. Biochemical, haematological, and immunological profiles were examined.

…

Developmental histories included a review of prospective developmental records from parents, health visitors, and general practitioners.

This is quite clear. Wakefield saw the NHS records of the Lancet 12. The claim that he didn’t is incorrect at best.

Why does it matter what happens to Andrew Wakefield?

8 Jan

People have been questioning the necessity of these latest revelations about Andrew Wakefield and suggesting that enough is enough or maybe that all this latest round of publicity will do nothing except make him a heroic martyr. This is possible.

However, for a number of reasons I really feel it is vitally important that not only is there some response but that that response comes at least partly from the autism community.

Firstly, I believe it is necessary for there to be a response full stop. These might be the same set of _facts_ that were uncovered during the GMC hearing but the difference here is that for the first time it has been established that the facts against Andrew Wakefield came about through what the BMJ refer to as fraudulent. This is a huge difference. Up until now it could’ve been argued that Andrew Wakefield simply made a mistake. After the events of the last two days, that can never be honestly argued again.

Secondly, there are a set of people who have been at the rough end of Wakefield’s fraud for the last 13 years. A set of people who have struggled to make new parents understand that there is no risk of autism from the MMR vaccine. Doctors. Particularly paediatricians and GP’s. It is vital that by establishing what Wakefield has done as fraud, the media ensure that the message is spread far and wide. They (the media) have something to atone for in this respect, being the original spreaders of the message that the MMR caused or contributed to autism. They now need to recognise their role in the past and help the medical establishment by ensuring Wakefield can never again spread his fraudulent claims via their auspices.

Thirdly, there is another set of people who have been at an even rougher end of Wakefield’s fraud. The sufferers of the falling vaccination rates of MMR. Its been well documented in numerous places, including this blog how people – particularly children – have been injured and died in the UK and US. The concept of herd immunity, no matter what some might claim is a real concept and when it falls, the level of protection falls. When it falls to far then the people who suffer are the very young, the very old and those who for genuine medical reasons cannot be vaccinated. Wakefield’s fraud needs to be spread far and wide in order for people to realise what he is, what he tried to do and what the consequences were in order to have some confidence in the MMR jab.

Fourthly, there is another set of people who have suffered heavily. This set of people are the silent victims of Wakefield’s perfidy. Autistic people. Wakefield and his supporters, TACA, NAA, Generation Rescue, SafeMinds, Treating Autism et al have turned autism into a circus. The aim of the last decade amongst serious autism researchers and advocates has been to

a) Raise awareness
b) Find evidence-based therapies that will help the life course and independence of autistic people
c) Protect the educational rights of autistic people

and getting research monies to meet these aims is long, hard and slow. Andrew Wakefield and his hardcore of scientifically illiterate supporters have actively derailed that process, dragging research monies away from these principled activities and towards their core aim of degrading vaccines and ‘proving’ vaccines cause autism. Wakefield himself has taken over US$750,000 worth of money to pursue a legal battle against the UK Gvmt. Just think of how that money could have enriched the life of just one autistic person.

However, this same set of people claim to be representative of the autism community. They write nonsense books about autism. They hold celebrity studded fundraisers for autism. They participate in rant-filled rally’s for autism. But none of them are really about autism. What they’re about is anti-vaccinationism.

Every one of these activities denigrate autism and autistic people. They take attention away from where it is needed.

We, the true autism community, made up of parents, autistic people, professionals of autistic people need to do two things. Firstly, we need to wrest back control of the autism agenda from these one-note people. Secondly, we need to speak to society at large and say ‘yes, some members of the autism community believed the fraudulence of Andrew Wakefield but not all of us did. Please don’t tar us all with one brush.’

What Andrew Wakefield has done has impacted everyone. We need to make sure that he and people like him can never affect us all in this way again. To do that we need to speak out about him, loudly and as long as it takes.

Alison Singer from Autism Science Foundation on CNN

7 Jan

Here’s the video:

http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=bestoftv/2011/01/07/exp.am.intv.chetry.autism.cnn

If anyone finds the Transcript from this video please post the address in the comments 🙂

You can’t question vaccines without being destroyed….or can you

7 Jan

As part of the “balance” in the Wakefield fraud story, CNN brought in Wendy Fournier of the National Autism Association. It’s a bit of an odd choice as she hadn’t researched the claims in the BMJ article (“honestly, I don’t know the specifics Brain Deer is referring to in the article for BMJ”). That said, the interview is interesting to watch. She starts right out with a personal attack on Mr. Deer: “Brian Deer has proven himself to be quite the one-trick pony. Wondering if has anything else to do than write about Andy Wakefield”.

The defense doesn’t talk at all about the actual paper, the actual demonstrated instances of fraud. Instead, the interview focuses on the conspiracy defense that Mr. Wakefield and his supporters have chosen. It isn’t that the data were manipulated to produce a given result that’s the reason why the editors at the BMJ produced this article, it is because the vaccine program is so important that vaccine safety advocates are attacked.

Here are two quotes from this interview:

“Careers are destroyed whenever anyone dares to question the almighty vaccine program” and “you can’t question vaccines without being destroyed, there’s too much money at stake here”

http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=health/2011/01/06/intv.austism.study.defended.cnn

Consider the case of John Salamone. Have you ever heard of him? I hadn’t until I read Dr. Offit’s book, Deadly Choices. Mr. Salamone has a vaccine injured child. His son contracted polio from the oral polio vaccine. Mr. Salomone found out that there was a safer vaccine, the Salk vaccine, which was already in use in other countries. Mr. Salamone formed a group, informed parents against vaccine associated polio, and took his case to the government. It wasn’t an easy battle, by far. But he did eventually get heard and he made the change happen. The U.S. abandoned the oral vaccine.

He wasn’t ruined. There was no campaign to destroy him.

He was the right man, with the right skills to get the job done. He also had the truth on his side and he didn’t resort to fear and pseudo science.

Here is a quote from a parent “autism advocate” in one of the groups associated with the NAA, Generation Rescue. This statement was written on the blog these groups share, the Age of Autism. I don’t recall anyone from the NAA voicing an objection to this comment when it was made:

With less than a half-dozen full time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees

When people assert that the vaccine program is untouchable, that anyone who questions it will be “destroyed”, think about the changes that have already occurred. Think about John Salamone. Thank him for bringing about the change he did.

← Older Entries
Newer Entries →