Search results for 'generation rescue'

Today’s measles outbreak, brought to you by Generation Rescue and other anti-vaccine misinformation sources

1 May

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.

–J.B. Handley. Founder of Generation Rescue and the Age of Autism Blog.
March 17, 2010

Kelli Ann Davis. Anyone remember that name? She was a spokesperson and political liaison (or something like that) for Generation Rescue back in the day. As in 10 years ago or so.

I’d be amazed if anyone actually remembered her name. It took me a while to remember her name, but I remembered her. She was a frequent commenter in online discussions on vaccines. News stories and blogs. She really liked to point out that there were pockets of under vaccinated people. Schools and communities with low vaccine uptakes. And there weren’t outbreaks of diseases. This, in her mind, seemed to be evidence that herd immunity was a fake idea. Worthy of scare quotes (“herd immunity”).

Here’s an example I dug up from the Age of Autism blog, circa 2009:

She stuck in my mind. She was so arrogant in her ignorance. So full of her self with her bad logic. And she was spreading misinformation.

I knew it was only a matter of time before the outbreaks did come. Before someone imported something like measles into one or more of these under-protected communities.

I won’t hold my breath waiting for her to come back and take responsibility. I won’t wait for Generation Rescue to accept its role in causing suffering. I won’t expect other purveyors of misinformation to show the backbone needed to admit a mistake.

I will admit I was wrong in one area–I worried that eventually the press would start to realize that a great deal of the misinformation campaign has been waged by a vocal minority of autism parents. That is why I remembered Kelli Ann. Not for the chance to one day say, “I told you so”. I knew that these outbreaks would come. The outbreaks would cause people to suffer, some to possibly endure lasting harm and, let’s hope this doesn’t happen, death. While slowing or blunting the harm from these inevitable outbreaks was a worthy goal in and of itself, I was worried that the autism community would take the blame for people like Kelli Ann. JB Handley. Jenny McCarthy.

I am grateful that this hasn’t happened. So far. But I also think it’s on us, autism parents, to call out the behavior of our own. We need to reduce the misinformation that comes from our community. Be it vaccine misinformation, disrespect of people with disabilities or spreading medical pseudoscience.


By Matt Carey

p.s. Yes, I realize that “anti-vaccination” and “misinformation source” are largely redundant.

A bit of irony from Generation Rescue: still citing Jenny McCarthy as the face of autism recovery

5 Aug

Somehow I’ve found myself on Facebook and, even more, navigating to the Generation Rescue page. And today I found this:

GR_FB

In case you didn’t click to enlarge and read, here’s their statement:

The New York Times recently posted an article on autism recovery – and yes, it’s real! There really is hope!

Thank you Jenny McCarthy for being the celebrity to bring attention to the truth and thank you for all you have done for this cause.

Here’s a hint–there really is hope even without losing a diagnosis. One can have be autistic or the parent of an autistic kid and have hope. Trust me, I know. And I think if you ask Jenny McCarthy, she will tell you the same.

Back to the story. Generation Rescue are referring to this article (The Kids Who Beat Autism) in the NY Times magazine.

You may ask, where’s the irony in that? Jenny McCarthy is the public face of autism “recovery” after all, right? She told us all about how her kid was no longer autistic, typical, all that after using alternative medicine. She went so far as to berate the government for not calling her to study her no-longer-autistic son (more on that later).

I find it ironic because she’s been in the news just in the past few weeks, discussing how her autistic son is being bullied because of his autism.
http://www.people.com/article/jenny-mccarthy-the-view-autistic-son-bullied

AutisticEvan

I wish her kid well. I really do. I also wish Jenny McCarrthy compassion and forgiveness. I wish she would be more honest.

Let me return to the “Jenny McCarthy Berates the US Government for Not Studying her Autistic Kid” thing. You seethe NY Times Magazine article is discussing an NIH study of kids who were diagnosed as autistic but later were diagnosed to be not autistic. Not just a coincidence, but years back my friend Kev Leitch not only discussed that study while it was in progress, but pointed out that if Jenny McCarthy were serious about wanting the government to study her kid she might want to participate in the NIH study. Here’s what Jenny McCarthy had to say back then:

Evan is now 5 years old and what might surprise a lot of you is that we’ve never been contacted by a single member of the CDC, the American Academy of Pediatrics, or any other health authority to evaluate and understand how Evan recovered from autism. When Evan meets doctors and neurologists, to this day they tell us he was misdiagnosed — that he never had autism to begin with. It’s as if they are wired to believe that children can’t recover from autism.

So where’s the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven’t arrived. Most of the parents we’ve met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child’s autism.

So, where was the cavalry, Jenny? Where was your desire to see that the NIH, CDC, AAP and “any other health authority…understand how Evan recovered from autism”?

Ms. McCarthy, back then the autism community knew you’d never volunteer your kid for such a study. Controlling the message was just too important to you. The only surprises are that these “new” revelations so soon and are so clear.


By Matt Carey

A look at the financials for Generation Rescue and the Strategic Autism Initiative

15 Feb

Generation Rescue is a well known charity with a focus on alternative therapies for autism and promoting the idea that vaccines cause autism. The Strategic Autism Initiative was formed by Andrew Wakefield after he left Thoughtful House (now the Johnson Center). Many of these organizations have close ties and, in fact, GR helped SAI get started with a $100k grant its first year.

The most recent tax forms are from 2011 and are below:

Generation Rescue IRS form 990Strategic Autism Initiative IRS form 990

Generation Rescue pulls in a great deal of money, nearly $1.2M. Of which about $240k goes to the “rescue grant” program. About $125k goes to running their website. Another $125k to pay their executive director.

Under grants, Generation Rescue (GR) has two:

$25,000 to the Strategic Autism Initiative
$20,000 to Jackson State University

Both “for researching causes of autism”. We see again the link between GR and SAI. Jackson State is the institution engaged by Generation Rescue and the SAI to perform a vaccinated/unvaccinated study using homeschooled kids. I’ll point out that when I reviewed the GR and SAI tax forms last year, I speculated that they were starting to fund the vax/unvaxed study.

Now consider the SAI’s form 990. SAI pulled in $284k. They paid out $250k in salaries and other compensations. Yep, 88% of intake went to salaries. Luckily they had a bit of a war chest from the year before to draw on. But let’s look at those salaries. Andrew Wakefield is compensated $200k/year for a reported 30hours/week. That’s $270k/year (his salary at Thoughtful House). Terri Arranga ( of AutismOne) was paid $28.8k for reported 15hours/week.

But, as I said, they had a war chest from 2010 (due in big part to a $100k donation from GR). How did they spend that? Well, they appear to have a grant of $25k to Generation Rescue for “research related to the vax/unvax study”. Which strikes me odd as GR gave SAI $25k, so it looks like the money went in a circle.

That said, what expenses did SAI report?

$158k to Dr. “Lenys G. Gonzalez” to work with Arthur Krigsman and Stephen Walker on “molecular and clinical signatures of inflammatory bowel disease and adverse vaccine reactions in autistic children.”

Lenny Gonzalez is a researcher in Venezuela who was funded by Wakefield at Thoughtful House in one of the supposed “independent” replications of Wakefield’s findings. Arthur Krigsman is a former colleague at Thoughful House, with a colorful history. Stephen Walker’s name comes up periodically in regards to a study he presented at IMFAR but never published which supposedly confirmed Andrew Wakefield’s finding of measles virus in intestinal tissues of autistics.

$43k for a study on “vaccination status and health outcomes among homeschool children in the United States”, with Anthony Mawson of Jackson State. Mr. Mawson was named as the lead researcher for this project back when GR was seeking funding from money left over from a class action lawsuit to fund it.

$86k for an “IRB approved” (are the others not?) investigation using the Florida Medicaid database. And, no surprise, this is to look at vaccines. (1) acute adverse reactions to vaccines as predictors of neurodevelopmental disorders and (2) age of vaccination and risk of adverse outcome.

I am curious if the Florida project is the same one the Geiers were attempting to get pushed through approval a few years ago. A t that time a vaccine-causation focused chiropractor and heavy political donor was pushing both access to the Florida medical records and for things like changing a bill to improve access to services for families with autistic children into a vaccine bill.

Many people might be wondering how Andrew Wakefield managed to gather half a million dollars in under two years. I can’t say for sure but I can put out some information for speculation.

One of his board members is Elizabeth Avellan. She also serves on the board for Mr. Wakefield’s “Autism Trust”, which lists her accomplishments as including ” highly successful film producer and co owner of Trouble Maker studios “. Troublemaker Studios has the “Spy Kids” franchise.

Another board member is Phil Rawlins. There was a Phil Rawlins in Austin who owned a soccer team. He has since moved to Florida.

So whatever skills he had, Mr. Wakefield is basically now a fundraiser. He’s good at it, you gotta hand it to him. I can think of a lot of ways that money could be better spent, though.


By Matt Carey

Generation Rescue’s tax form 990 for 2010

31 Jan

Generation Rescue’s tax forms (form 990) for 2010 have been made publicly available.

2010 was the second highest year financially for Generation Rescue. Here are their yearly totals:

2006: $318,695
2007: $425,317
2008: $1,185,255
2009: $623,597
2010: $1,078,471

GENERATION RESCUE IS DEDICATED TO RECOVERY FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS BY PROVIDING GUIDANCE AND SUPPORT FOR MEDICAL TREATMENT

The largest expense was for “research”: $307,439. The description is not very detailed:

GR CONTINUES ITS COMMITMENT TO DISCOVERING THE CAUSES OF AUTISM SPECTRUM DISORDERS AS A MEANS OF IMPROVING TREATMENTS AND QUALITY OF LIFE, WHILE WORKING TOWARDS A PREVENTION AND A CURE. ANGELS DONATE THEIR TIME TO ANSWER QUESTIONS, GIVE GUIDANCE AND PROVIDE RESOURCES FOR FAMIILIES STARTING OUT ON THEIR OWN.

More on this later.

Other expenses? Marketing and Awareness, for one: $135,128

MARKETING & AWARENESS
GR IS DEDICATED TO SPREADING AWARENESS AND INFORMATION ABOUT AUTISM TO THE POPULATION AT LARGE, TO ENSURE THE UNDERSTANDING AND SUPPORT FOR THE DISORDER. GR WORKS CLOSELY ON A GRASSROOTS AND NATIONAL LEVEL TO ENGAGE FAMILIES IN THE PROCESS.

Rescue Family Grant Program: $96, 431

GR’S RESCUE FAMILY GRANT PROGRAM PROVIDES AUTISM TREATMENT SUPPORT TO INDIVIDUALS AND FAMILIES AFFECTED BY AUTISM SPECTRUM DISORDERS. GR PROUDLY PROVIDES FAMILIES WITH THIS UNIQUE AUTISM TREATMENT PROGRAM, WHICH MAY NOT OTHERWISE BE COVERED BY SCHOOL DISTRICTS, COUNTY PROGRAMS, INSURANCE OR OTHER GRANT-GENERATING ENTITIES.

Other program services: $328,660.

You may recall that this year Generation Rescue teamed up with AutismOne to produce the AutismOne conference. They made the conference “free” to attendees (with a $25 fee). Generation Rescue put out $76,467 to support the conference. Someone is obviously paying (exhibitors? Speakers?), Generation Rescue made $38,883 on the conference. Compare this with their comedy event where they spent $98,422 to make $15,327. Autism One is a much better deal for them.

Remember those research expenses mentioned above? I assume that this charge is included there: “Strategic Autism Initiative” got $100,000 “for researching the causes of autism:”. What’s the Strategic Autism Initiative? Simply put: Andrew Wakefield. That’s the organization he created after leaving Thoughtful House. Been wondering how Andrew Wakefield is paying the bills since losing that job? Well this gives you a big clue.

(For comparison, their “Family Grant” program received less money: $93,122 for 111 recipients.)

Under compensated board members, officers, etc., they list:

Jenny McCarthy, President, Director (10 hours/week, no pay)
Jonathan B Handley, Director (10 hours/week, no pay)
Lisa Handley, Director (10 hours/week, no pay)
and
Candace MacDonald, Executive Director (40 hours/week, $128,613)

Total in salaries and other compensation $260,569. (in 2009, this was $364,686)

Generation Rescue’s mission statement for 2010?

GENERATION RESCUE (GR) IS DEDICATED TO RECOVERY FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS BY PROVIDING GUIDANCE AND SUPPORT FOR MEDICAL TREATMENT TO DIRECTLY IMPROVE THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED

This has been evolving.

2009:

GENERATION RESCUE,INC IS AN INTERNATIONAL MOVEMENT 0F SCIENTISTS AND PHYSICIANS RESEARCHING THE CAUSES AND TREATMENTS FOR AUTISM, ADHD, AND CHRONIC ILLNESS WHILE PARENT-VOLUNTEERS MENTOR THOUSAND OF FAMILIES IN RECOVERING THEIR CHILDREN

2008:

CONTINUING RESEARCH, EDUCATION AND DISSEMINATION OF INFORMATION TO THE GENERAL PUBLIC AND MEDICAL PROFESSIONAL RELATING TO MERCURY TOXICITY AND ITS EFFECT ON CHILD DEVELOPMENT

(Generation started out as a major proponent of the idea that autism was a misdiagnosis for mercury poisoning)

One might notice that the “research” budget is significantly higher than that allocated to Mr. Wakefield’s organization. They allocate $307,439 for research. Compare this to 2009, when their support of research appears to be a single entry of $30,000 given to the HEAL Foundation.

$100,000 is going to Mr. Wakefield. Where is the other $208,439 going? Generation Rescue at one point felt they could do a vaccinated/unvaccinated study for $809,721. At that time it was proposed as a 2 year study. Is it in the works?

Generation Rescue: taking another small step away from the brink?

14 Jul

Generation Rescue has over the years been one of the more vocal promoters of the vaccines-cause-autism notion. Like any organization, they have changed over the years and their website reflects that. Their website started out with the title “Autism Mercury Chelation” and a very simple (and wrong) statement:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.

Of course, later during the early years of Jenny McCarthy, when Generation Rescue became “Jenny McCarthy’s autism organization. By this point, GR had a prominent link on the main page to “vaccines”. This included a page with Generation Rescue recommended vaccine schedules. Their “favorite” being a schedule that offered no protection against many diseases, including measles, mumps, rubella, pertussis, diptheria and tetanus.

They had a page of “science”, including statements claiming that Andrew Wakefield’s 1998 paper linked MMR to autism (a position Mr. Wakefield has tried to distance himself from in the past few years):

“This study demonstrates that the MMR vaccine triggered autistic behaviors and inflammatory bowel disease in autistic children.”

They had a science advisory board, which included S. Jill James, Ph.D., Richard Deth, Ph.D., Woody R. McGinnis, M.D. and Jerry Kartzinel, M.D.. Not exactly heavy hitters, but at least a couple of people who actually publish in journals.

Times have changed again. The website is revamped. And vaccines seem to be much less prominent. For example, in the current version of the Generation Rescue website, I can’t find “recommended” vaccine schedules (they refer people to Dr. Bob Sears). A search for Wakefield shows he is only mentioned once “Studies by researchers: Horvath, Wakefield, Levy, and Kushak highlight a myriad of gut problems present in children with autism, including abnormal stool (diarrhea, constipation), intestinal inflammation, and reduced enzyme function”. The science advisory board is down to one person (Jerry Kartzinel) and an unnamed “cohesive group of professionals committed to healing and preventing autism”.

Sure, it’s still not a place I would recommend to anyone, especially a parent who just found out their kid is autistic. But just a few short years ago the trajectory was increasing with the vaccine discussion, not decreasing.

Somali community start to fight back against Andrew Wakefield and Generation Rescue

26 Mar

Taken from http://www.startribune.com/lifestyle/health/118686794.html

Hodan Hassan of Minneapolis understands why some parents are afraid to have their children vaccinated. Until recently, she was one of them.

But today, Hassan will be one of the featured speakers at a Somali community forum designed to allay fears about vaccines in the midst of a measles outbreak.

“[I] read about how the world used to be without the immunization program,” said Hassan, who has four children, including a daughter with autism. “This generation doesn’t understand the benefit, and the importance, and how lucky they are having an immunization program in place.”

So far, 11 cases of measles have been confirmed in Hennepin County since February, five in Somali children who had not been vaccinated. Experts say that vaccine rates have dropped in the Somali community, along with other groups, because of unfounded fears of a possible link to autism.

Now, Somali physicians and state health officials have joined forces to counter what they say are widespread misconceptions about vaccine safety, which has left many children vulnerable to preventable diseases. The concern has grown in the last two years, since a Health Department study confirmed that there were an unusually high number of Somali children in the Minneapolis schools’ autism program.

In Hassan’s case, she stopped vaccinating her children after she learned that her daughter, Geni, now 6, had autism. At the time, she said, she was desperate for answers. Medical experts could not explain what caused her daughter’s condition, a severe communication and behavior disorder. But she quickly learned about the autism activists who blame the vaccines, in spite of medical assurances to the contrary. She began reading their books and attending their conferences, she said, and the fear took hold.

In December, she said, she turned out to hear Andrew Wakefield, the hero of the anti-vaccine movement, at a Somali community meeting in Minneapolis. Wakefield conducted a now-discredited 1998 study suggesting a link between autism and the measles, mumps and rubella (MMR) vaccine.

‘I was shocked’

Later, Hassan said, a local doctor challenged her to do her own research on Wakefield, who was accused of scientific misconduct in connection with the study, and ultimately stripped of his medical license in England.

Now she is one of his biggest critics. “I was shocked when I found out people used to die [of measles],” she said. Many still do in her native Somalia, she noted, and in other in parts of the world where vaccines are not available.

“If we could all go back in time, we would have appreciated it,” she said.

Just this week, Wakefield returned to Minneapolis for a private meeting with Somali families. Members of the news media were barred from Wednesday’s gathering, which reportedly drew only about a half-dozen Somali parents.

But one of the organizers, Patti Carroll of Shoreview, said she doesn’t believe parents are worried about the measles outbreak.

“They’d rather have them get the measles than deal with the effects of unsafe vaccines,” said Carroll, a volunteer with Generation Rescue, an autism advocacy group.

Health officials warn that measles is highly contagious and extremely dangerous. So far, six people have been hospitalized in the current outbreak, most of them young children. All are said to be recovering.

This week, Hassan circulated an e-mail inviting members of the Somali community to tonight’s forum at the Brian Coyle Center in Minneapolis.

“Our community has been misled about MMR causing autism,” she wrote. “Vaccines don’t cause autism and the benefit [outweighs] the risk.” She added: “We are very much against an unlicensed doctor to make our community his scapegoat.”

JB Handley of Generation Rescue on CNN

6 Jan

First of all, here’s the transcript of Handley on CNN, courtesy of Liz Ditz:

Parker: Now joining us from Portland, Oregon I J.B. Handley. JB is the father of an eight-year old with autism, and he is a founder of Generation Rescue, a group that believes that there is a connection between autism and vaccination. Welcome JB

JB Handley (JBH): Thanks for having me.

Parker: Thank you Did today’s report cause you to reconsider your position on vaccines at all?

JBH: No, not one bit.

Parker: So, explain that. Why doesn’t this affect the way you think?

JBH: You know the original Wakefield study looked at 12 children. All 12 had autism. The only conclusion of the study was that the 12 were suffering from a new form of bowel disease. Andy Wakefield also reported that 8 of the parents said that their children regressed after the MMR vaccine. So the notion that his study ever incriminated MMR as causing autism is false. and the vaccine industry continues to beat this dead horse.

Parker: so you think that um when you talk about regression you are saying not so much that uhm the vaccine causes autism but that it causes a regression? And what does that mean to you?

JBH: No. What you hear from many parents, and my son is one of these, is that the children are developing typically, and my son’s case up to 14 months he was normal, and then then they gave a regression, they start to lose skills, they start to lose milestones. I have personally talked to about a thousand parents who all report that their children where that regression took place immediately following a vaccine appointment.

It’s important for parents to understand that children are given 36 vaccines in the US by the time they are the age five. The MMR only accounts for two of those 36 vaccines. Typically the shots are given simultaneously so the average child will get six vaccines in a single appointment, yet we don’t have a single piece of research to understand the potential risk of all those vaccines at once. So when someone tries to tell me that MMR alone doesn’t cause autism, but I take my child in for a vaccine appointment, and they are getting six shots in 10 minutes, how am I supposed to feel reassured?

Spitzer: I say this with overwhelming sympathy for you and for your son, but just listening to you I’ve got to ask the question: there isn’t a single study, and we’ve looked at all the science, that says there’s any causal link between these vaccines and autism. And I know you are saying there is

JBH: But that’s not true

Spitzer: there isn’t a study that disproves it, but there’s no affirmative causal link there. And so don’t don’t you think it would make more sense to look at other potential potential causative factors?

JBH: What you are saying is simply false. There is a study out of SUNY Stonybrook within the last six months that compared a group of children who got the entire round of HepB vaccine, and a group of children who didn’t, and found autism was three times more likely in one group. There’s a new study out of the University of Pittsburgh that took primates and vaccinated a group of them and didn’t vaccinate the another and found dramatic differences between the two sides. So to represent that somehow the science has been done is simply false. More importantly the science that has been done is what we like to call “tobacco science”. You take a group of kids who all got vaccines but got a little less mercury and compare them to a group of kids who all got vaccines but a little more mercury and find there’s no difference in autism and then claim that vaccines don’t cause autism. The only appropriate study to do would be to look at a group of children who never got vaccines and a group of children who got all of them, and see if there’s a difference in autism rates and that study has never been done despite many people trying to call for it.

So to represent that the science has been done on this is simply untrue. The vaccine makers are highly effective at PR and which is why I am here talking to you.

Parker: Well JB you obviously feel passionately about this and we can certainly understand that. How do you feel specifically about, when you find out that this particular doctor was when Wakefield was actually deliberately fraudulent in advancing the claim that there was a connection?

JBH: What is interesting is that there are 12 children in the original study in the Lancet, OK? The parents of the 12 children have all written letters, time and again, in support of Andy Wakefield. The study’s conclusion was that the children were all suffering from bowel disease, and Andy went on to mention eight of the parents claimed that the regression took place after the MMR. So the notion that the data is somehow new, what’s new? They didn’t suffer from bowel disease, even though all the parents have represented that they did? People need to look at the details not at the headlines. This an attempt to whitewash, once and for all, the notion that vaccines cause autism. They are not just beating a dead horse, they are beating a horse that never existed in the first place. That’s not what Wakefield’s study said. It’s a seven page page study, it is on the Generation Rescue website. Anybody can read it for themselves and verify what I am saying is true.

Spitzer: JB, again with all sympathy, and as somebody who has been a harsh critic of

JBH: I don’t need any sympathy!

Spitzer: Well, OK but what I am trying to say is

JBH: [talking over] I don’t need any sympathy! I don’t need your sympathy What I need is the facts and for someone to look at the details.

Spitzer: Well what you yourself have said is that what you glean from your anecdotal conversations is hugely compelling to you but unfortunately in terms of the scientific data and the analysis that sort of anecdotal database simply doesn’t establish the causal link what we are looking for in terms of really understanding this and I think that what validates today

JBH: [talking over] Look at the Suny Stonybrook study, look at the university of Pittsburg study

Spitzer: [continuing over JB] this study that we examined today was fraudulent. And I think that’s really where we are.

JBH: [talking over] Look at the Suny Stonybrook study, look at the university of Pittsburg study. You haven’t done all your research. You are reaching false conclusions. Parents do your own work.

[pleasantries to close]

Now lets isolate Handley’s main talking points and decide if they are true or false:

1) You know the original Wakefield study looked at 12 children. All 12 had autism.
Not accurate. According to material from the British Medical Journal three of nine children reported with regressive autism did not have autism diagnosed at all. Only one child clearly had regressive autism.

2) Andy Wakefield also reported that 8 of the parents said that their children regressed after the MMR vaccine.
Not accurate. According to the same source five had documented pre-existing developmental concerns.

3) So the notion that his study ever incriminated MMR as causing autism is false.
Semi-accurate. Although the paper itself may not have mentioned it, the video conference Wakefield gave _about_ the study certainly did:

…you would not get consensus from all members of the group on this, but that is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR…

4) …we don’t have a single piece of research to understand the potential risk of all those vaccines at once.
Not accurate. Any vaccine in the US has to undergo something called a ‘concomitant use study’. These are to establish that vaccines work OK together. Searching Pubmed for the phrase ‘concomitant vaccine’ returns over 700 results.

5) There is a study out of SUNY Stonybrook within the last six months that compared a group of children who got the entire round of HepB vaccine, and a group of children who didn’t, and found autism was three times more likely in one group
Not accurate. This study is flawed on an number of levels. Firstly, they are comparing kids born as early as 1980 to kids born during “the epidemic”. Anything that happened past 1991 would be an autism risk. Secondly and very worryingly, they pick datasets that have children born before the introduction of the Hep B vaccine. Thirdly, this whole thing is essentially a survey. It’s based on parental recall.

6) There’s a new study out of the University of Pittsburgh that took primates and vaccinated a group of them and didn’t vaccinate the another and found dramatic differences between the two sides.
Not accurate. Again, lots of issues with this study. So many so in fact that Sullivan wrote a devastating takedown of the paper in July last year.

I think that’s all the statements of attempted fact from Handley. All in all it shows that Generation Rescue cannot be trusted to present the most pertinent or up to date information.

A Christmas message of woe from Generation Rescue and Jenny McCarthy

22 Dec

I just got the Generation Rescue end-of-year fundraiser email. Jenny McCarthy tells us about how there are only two types of autism parents:

Dear Fellow Warrior,

My mantra is Never Give Up. This year, we “never gave up” in spades!

This year I had the honor of giving the keynote address at the AutismOne conference. The largest gathering of families, physicians and researchers pursuing biomedical treatment. I talked about trains. First, there’s Train A

You do absolutely everything you can for your child, no matter what anyone tells you. Then, there’s Train B: Woe is me. We are Train A People. Which isn’t always easy, right? But it’s always, always worth it.

and it goes on.

If Jenny McCarthy wants to slam other parents as “giving up” and being “woe is me” types, I guess that’s her right. She’s certainly taken a lot of criticism.

Of course, if I want to respond to her, that is my right as well.

As I near Christmas, the last thing on my mind is “woe is me”. I do still feel like I will listen to the advice of others, when they are experts, in seeking help for my child. If an expert says something like, “you know, that industrial chelator has not been tested adequately for safety or efficacy…or at all…in humans”, I take that to heart. When an expert in toxicology says, “you know, autism doesn’t actually look like mercury poisoning at all”, I take that to heart. When I read online discussions where parents are reporting adverse reactions to so-called “biomedical” approaches to treating autism, I take that to heart as well.

Safety. That is where you and I part ways, Jenny. Safety. You, your organizations and the practitioners you promote want me to “do absolutely everything”, regardless of whether it has been proven safe or effective.

It’s easier to put me in a box and tell your followers I am sitting here saying “woe is me” than to address the question of safety. Perhaps 2011 will be the year you take on the very serious question of safety.

Have a merry Christmas, Jenny. I will.

Edit-to-add:

Here is Jenny McCarthy’s message set to video.

And, also to add–

I am not on Train-A, but the A-train…no “woe is me” on the A-train.

Generation Rescue’s Vaccinated/Unvaccinated Study

8 Jun

Generation Rescue and other groups have been calling for an independent study of health outcomes comparing vaccinated and unvaccinated populations. They recently announced at the AutismOne conference that they had announced that they had procured funding for the project. They had been trying to get funding for this project from a settlement from a lawsuit against Airborne. The funds from that lawsuit have not been distributed yet. So if Generation Rescue has funding, it is from some other source.

That said, documents filed in Generation Rescue’s bid for the Airborne settlement money gives us a chance to see their proposed study design. Let me pull some of the highlights out for discussion.

The “purpose” of the grant is listed as:

Funding for study on vaccinated verse (sic) unvaccinated children to ensure the safely and well being of children worldwide.

They request $809,721 for the project.

Here is a segment of the statement of the problem to be addressed:

The U.S. and many other countries appear to be experiencing a silent pandemic with 1 in 5 children now suffering from learning disabilities, sensory deficits, and developmental delays. Neuro-developmental disorders such as autism, attention deficit hyperactivity disorder (ADHD), mental retardation, and cerebral palsy, are increasingly common, very costly, and cause lifelong disability. In 2003, the National Survey of Children’s Health reported that 0.5% (I in 200) children ages 6-17 had autism, 11.5% had learning disabilities, 8.8% had ADHD, and 6.3% had behavior problems. By 2007, the prevalence of autism in the U.S. had risen to 1 in 150 children (Rice et aI., 2007). There are a number of physical ailments that children with Childhood Neuro-developmental Disorders (NDs) typically manifest including: food allergies and eczema, general gastrointestinal distress, constipation and diarrhea, yeast overgrowth, immune system deregulation, sleep disturbances, and high levels of environmental toxins.

Why study vaccines? According to the proposal:

What could be causing these increases in NDs and disability among children in the US.? Hypotheses proposed to explain these increases have included changes in diet coupled with reduced physical activity and/or increased sedentary behavior, low birth weight, stress, medication use in pregnancy, infections and environmental toxins. Although it remains widely debated, certain routine childhood vaccinations have been suggested as contributing to the increase in neuro-developmental disorders. A recent examination of the vaccinating practice of other countries showed that the United States vaccinates children on average double that of all other first world countries; the U.S. uses 36 compared to 18 at other countries. In fact, the United States utilizes more vaccines than any other country in the world yet it has the worst mortality rate among children 5-years-old and under of the top 30 developed countries. Coincidently, some of the countries with the lowest vaccination rates also report the lowest rates of autism. It has been theorized the child’s body is overwhelmed by the combination of heavy metals (mercury, lead aluminum), live viruses (particular from their vaccines), and bacteria. These serve to slow or shut down normal biochemical pathways leading to NDi physical and mental manifestations.

I believe the “recent examination of the vaccinating practice” mentioned in the above paragraph refers to the pseudo-study Generation Rescue generated “AUTISM AND VACCINES AROUND THE WORLD: Vaccine Schedules, Autism Rates, and Under 5 Mortality”, which I discussed at length here. Generation Rescue’s “examination” was amazingly manipulative. For example, they compared a recent study on the autism rate in the U.S. for children born in 1994 to a French study from 1997 on children born between 1976 and 1985. Of course the rate in the US was higher than the rate in France. That doesn’t have anything to do with their current vaccine schedules.

What are Generation Rescue’s research credentials?

Research Programs: With some of the top scientists in the world, research is dedicated to finding more of the causative factors and treatment approaches for children with NDs.

Sort of vague there. I note that Generation Rescue decided not to tout their phone survey as an example of their research efforts. Given that in many cases the survey showed exactly the opposite of what Generation Rescue claimed in their cherry-picked publicity, this is understandable. It is still interesting that Generation Rescue seems to realize that the survey was not an asset.

That said, who are “some of the top scientists in the world”? Although not named in the proposal, it is worth checking who these “top scientists” might be. From their website, here is s Generation Rescue’s “Science Advisory Board”?

Richard Deth, Ph.D.
Professor, Department of Pharmacology, Northeastern University, Pharmaceutical Sciences

Brian Hooker, Ph.D.
Principle Consultant
Brian Hooker Consulting

Jerry Kartzinel, M.D.
Pediatric Partners of Ponte Verde

Woody R. McGinnis, M.D.
Research Coordinator, Behavioral Nutrition

I’ll leave it to you to look these gentlemen up, but they are perhaps not what most people would call “top scientists in the world”. Their papers are not very highly cited autism. Also, Generation Rescue does not appear to be using their “top scientists” for this project. Which begs the question: what is the actual project?

I. Project’s Primary Purpose, and the Need it Addresses. The goal of this project is to test the association between vaccinations and both acute and chronic neuro-developmental disorders and the efficacy of preventive health strategies. This will be achieved by conducting a retrospective cross-sectional study comparing the incidence of chronic illnesses (i.e., asthma, obesity, and eczema), neuro-developmental disorders (i.e., autism, ADHD and learning disorders), and overall health and well-being among a random sample of vaccinated and unvaccinated children (5-18 years of age). The study will obtain information from a random sample of two populations: I) children being horne-schooled and belong to the National Horne Educational Research Institute (NHERI); and, 2) children among the 30,000 unvaccinated patients being provided health care at the Homefirst Health Services in Chicago. Data will be collected from medical charts and parental reports via website health surveys and the standardized measures including the Autism Diagnostic Questionnaire.

The project proposal is vague and very brief. But let’s consider some details presented.

Not surprisingly, they chose to work with the Homefirst clinic in Chicago. Homefirst comes up quite often in discussions of proposed vaccinated/unvaccinated studies. This results largely from the fact that the director of Homefirst, Dr. Mayer Eisenstein has stated with no equivocation that there are zero autistic children who were born in his clinic and didn’t receive vaccines.

There is some confusion about how many of Homefirst’s patients are actually unvaccinated. Generation Rescue states that 30,000 are unvaccinated, but this is actually the estimate for all the children at Homefirst, vaccinated and unvaccinated:

“We have a fairly large practice. We have about 30,000 or 35,000 children that we’ve taken care of over the years, and I don’t think we have a single case of autism in children delivered by us who never received vaccines,” said Dr. Mayer Eisenstein, Homefirst’s medical director who founded the practice in 1973.

For the moment, let’s take Dr. Eisenstein at his word. What possible biases are there that they should be working around? One example–we don’t know the status of patients who have left Homefirst. Consider the parents who joined Homefirst specifically to avoid autism. After their child is diagnosed, is it conceivable that they not return to Homefirst and would find a different clinic? How do they plan to control for this? Also, one can not minimize the fact that Dr. Eisenstein has a lot riding on the reputation that he has built on the “no vaccines, no autism” slogan.

Even without this, researchers I have been in contact with have questioned how useful clinical notes such as these could be in screening, much less diagnosing, autism. From what I can see, Dr. Eisenstein’s practice does not include psychologists or other staff to test for autism, so that would not be directly included in the notes.

As an aside, the lack of autistics in his practice hasn’t stopped Dr. Eisenstein from joining the alternative treatment of autism. The Chicago Tribune discussed Dr. Eisenstein, his somewhat troubled past and his foray into treatments like Lupron in Autism doctor: Troubling record trails doctor treating autism.

NHERI is a new name to me. I have not heard much about them or their founder in autism discussions before. As an aside, one quote from the NHERI website was quite interesting–“”Whoever has the data controls the policy.” Kay Coles James, Virginia State Cabinetmember”.

The “Autism Diagnostic Questionnaire” is not a standard diagnostic instrument by any means. In fact, it is difficult to find out what it is at all. A google search for “Auism Diagnostic Questionnaire” gives only two hits (or did before I published this piece). The questionnaire appears to be this worksheet from the Autism Research Institute (DAN). I can find no information on how it is scored or how accurate it is.

One thing missing in this proposed study is actual contact with the children. “Standard measures” could mean a lot of things, but if they were planning on screening children and then testing probable cases using an ADOS and ADI-R (which one might argue would be “standard”), wouldn’t they mention that? If so, wouldn’t they mention who would perform such tests. None of the staff assigned to this study appears to be a psychologist, for example. The Staff for the project are listed as:

Project Stafjing: The Project Director will have a Masters’ degree and will be responsible foroverseeing the implementation, quality assurance and reporting of this project. Dr. A. Mawson is Professor of Pediatrics and Medicine at University of Mississippi Medical Center (UMMC), and Principal Investigator of the Mississippi Study Center for the National Children’s Study. Dr. B. Ray is President of the National Home Education Research Institute and an experienced researcher in home education. Dr. S. Buttross is Professor and Chief of the Division of Child Developmental Disorders in the Department of Pediatrics; UMMC; and Dr. W. May is Professor of Biostatistics, Department of Medicine, UMMC. The combined experience of these investigators ensures the highest standards of quality and scientific rigor.

Generation Rescue and others have often called for an “independent” research. Left unvoiced is whether “independent” means “independent of the government and pharmaceutical companies” or whether “independent” includes being free from ties to the vaccines-cause-autism groups.

The “Project Director”, Dr. Mawson, is a vocal supporter of Andrew Wakefield. Below is a letter by him you can find in multiple places on the web. Note this was not included in the research proposal:

Dear Dr. Crippen,

I would like to point out that Trisha Greenhalgh’s assessment of Andrew Wakefield’s paper was itself seriously flawed!

You do a disservice to Wakefield and the scientific community by perpetuating this myth of the flawed study and the paper that should have been “rejected” by The Lancet.

The paper is actually excellent–a superb case study that will join the ranks of other famous case studies, such as the link between rubella infection and congenital rubella syndrome (Gregg 1941) and between exposure to thalidomide and embryopathy (McBride 1956).

Greenhalgh states that the paper set out to test a hypothesis that was unstated –of a causal relationship between exposure to MMR and autism — and the design of the study was all wrong. She starts out with an incorrect assumption about the nature of the study and then continues to build on her incorrect foundational argument. Her argument may look impressive to the layman and most medical practitioners perhaps, but not to anyone who knows anything about study design, i.e. epidemiologists, and the reviewers of the paper for The Lancet, who clearly understood that the paper was not an hypothesis-testing paper but a hypothesis-generating paper. It was, in short, a case series analysis.

The paper, once understood in this light, as case series analysis, is truly remarkable, well written and brilliantly documented. It concluded by stating the hypothesis, based on parents’ reports, that the children’s’ signs and symptoms were temporally connected to MMR vaccination. Subsequent studies may not have substantiated the hypothesis; but that does not detract from or invalidate the merits of the paper as a case series and as, essentially, a hypothesis paper.

Anthony Mawson.

I’d be interested in Prof. Mawson’s take on the quality of the Wakefield Lancet article now that it has been retracted. More to the point, the fact that the study is not a true “case series” in the fact that the subject selection was highly biased. There is an “Anthony Mawson” who is a signatory on the “We Support Andy Wakefield” website.

Dr. B. Ray is the President of NHERI, the homeschooling group involved in the research and is not a medical professional nor an epidemiologist.

Dr. Susan Buttross appears to be rather reasonable. The website for a clinic she is affiliated with has links to sites like the CDC and the AAP when discussing vaccines and autism. She worked on the Mississippi Autism Task Force, whose report can be found here. That report does not discuss vaccines one way or the other. It does discuss that toxins have been “implicated”:

To further complicate the findings, there is mounting suspicion that environmental factors play a role in many cases. A genetic predisposition may cause certain individuals to be more sensitive to environmental toxins. Specific environmental toxins have not yet been identified, however, lead, mercury, and other chemical toxins have been implicated. There has been concern that certain dietary components may be a causative factor in some cases. Viral infections including rubella, measles, and CMV (cytomegalic virus) have also been linked to ASD. Illicit drugs and alcohol used by the mother during pregnancy are also known to increase the risk of a child developing ASD.

Interviews with her can be heard here, here and here.
Mississippi Autism Task Force

Dr. W. May is, I believe, Warren May. I have no real details on what connection he may have to the autism communities and to the question of vaccines.

In the introduction I pointed out that Generation Rescue was attempting to get funding for this project from the Airborne settlement. The Ariborne suit was brought by the Center for Science in the Public Interest (CSPI). CSPI was not supportive of the Generation Rescue proposal, noting that the project was vague and the sample groups likely heavily biased and that Generation Rescue was not actually conducting the study, but was managing it, building in overhead costs that might not be warranted.

I tend to agree with CSPI that the proposed study is far from being strong enough to be very convincing, one way or the other, on the question of vaccines and autism. There are some potentially reasonable people associated with this proposal. But I would think that any active involvement by Dr. Mayer Eisenstein would seriously taint the study. Further, should Dr. Mawson still support Andrew Wakefield, given Wakefield’s multiple ethical lapses and clearly biased study design, I would think that too would cast somewhat of a pall on the study.

Can an study comparing outcomes of unvaccinated and vaccinated populations be performed? Like any study, a lot depends on how definitive the answer you want is. Prometheus at the Photon in the Darkness blog has discussed the limitations of these studies and, also how they could be done. One early example is in his post “Let’s put on a Study!” Dr. David Gorski goes into the details as well in The perils and pitfalls of doing a “vaccinated versus unvaccinated” study. I agree with his conclusions:

Still, if the government caves and decides to do such a study, it is up to us in the scientific community to make sure that it’s done by no one but the best epidemiologists, in other words, that it’s a proper study that correctly controls for confounders and can answer the question being asked, not the dubious study custom designed to have the maximal chance of a false positive result, which is of course what the anti-vaccine movement really wants.

The questions raised by a vaccinated/unvaccinated study are far to important to be handled by anything less than the best researchers with access to the best data. I fear that Generation Rescue’s plan doesn’t meet either count.

AutismOne Generation Rescue conference expells registered attendees

2 Jun

Autism News Beat has this story in full in Listening to parents at AutismOne. AutismOne is a parent convention with a major focus on alternative medicine. To put them in perspective, Jenny McCarthy is a frequent keynote speaker and Andrew Wakefield was honored by AutismOne last year after it was revealed that his study was possibly tainted by misreporting of results.

If you recall, AutismNewsBeat was expelled from a previous AutismOne conference. He had just asked, respectfully, an important question of Hannah Poling’s mother (Hannah Poling is the child whose case before the vaccine court was conceded on the basis of vaccines aggravating an underlying mitochondrial disorder). To my knowledge, AutismNewsBeat has no been given a clear reason for the expulsion.

A filmmaker/Journalist was present at this year’s AutismOne. Lars Ullberg had applied for press credentials and was denied. AutismOne responded to this request stating:

Autism One is not prepared to offer press passes to you or your crew. Although you and each of your crew members may pay the registration fee as regular attendees, subject to the usual terms of attendance, neither you nor your crew members are permitted to conduct any videography, photography, audio recording, or press interviews; furthermore neither you nor your crew members are permitted to quote attendees, presenters, exhibitors, volunteers, or staff in any manner that will be quoted, “on the record,” or used for public or private media or instructional purposes. Additionally, you and your crew members must identify yourselves accurately with your affiliations to those to whom you speak and also not mislead them to think that you are simply seeking information with which to help your child. Finally, you may not eavesdrop on private conversations between attendees. In summary, Autism One grants no permission to you or your crew to report on this conference or its attendees. Should we become aware that you are not following these guidelines, we will not hesitate to ask you to leave the conference.

AutismNewsBeat asked AutismOne for details on why Mr. Ullberg was removed from the conference, but he has yet to receive a response.

I find the wording and possible intent of this sentence rather odd: ” Autism One grants no permission to you or your crew to report on this conference or its attendees”. If an attendee chose to be interviewed, would that not be OK? The conference appears to be speaking for its attendees.

In addition, a public health official was in attendance for this year’s AutismOne conference. This person also was asked to leave. According to AutismNewsBeat:

A staff member of a western state department of public health was reportedly attending a session on vaccines and parental rights. According to one source, the speaker was advising parents how to apply for and receive vaccine exemptions. The session was interrupted by an AutismOne organizer who commandeered a microphone to announce that a state health department staff member was present, so parents should be careful about what was discussed.

A short time later four Westin O’Hare security guards entered the room, identified the staffer, and directed her to leave the conference facility.

Perhaps in the case of the journalist, AutismOne was afraid of bad press. But haven’t parent groups been asking for some time for people to listen to them? A public health official attends the conference in order to listen and is expelled.

Generation Rescue and Autism One appear to be working in a very defensive, entrenched mode. Internet chatter is mentioning closed sessions where Andrew Wakefield spoke. Closed sessions? Expelling journalists? Refusing permission for journalists to report on what attendees have to say–even if the journalist clearly identifies himself? Asking public health officials to leave for no apparent reason? Again, this comes across to me as an entrenched, defensive mindset.