Managing Editor's Note: Ginger Taylor gave us permission to reprint her post on the AAP, autism and her notes from a conversation she overheard at the DAN! conference between pediatricians. Please mark her blog Adventures in Autism in your favorites. Thank you, Ginger.
By Ginger Taylor
On Wednesday, JB Handley wrote a piece for Age of Autism called AAP’s Errol R. Alden, MD: The Worst CEO in America, Looking to Target “Vaccine Opponents” and “Celebrities”. In it, he chastened the leadership of the American Academy of Pediatrics for their vaccine/autism stance and focusing in on the AAP CEO Dr. Errol Alden.
In the comments section of the post, Paul Robinson, Alden's brother in law, responded to Handley, disclosing that he has a child with ASD, and claiming that Handley and Jenny McCarthy's group, Generation Rescue, had sabotaged the relationship between AAP and DAN!, that was burgeoning in 2008, by criticizing AAP too harshly. Handley responded with another post the following day called, "Dr. Errol Alden, CEO of the AAP, has a Nephew with Autism", in which he addresses Robinson's comments.
Handley expresses a sentiment, which I share, that references the difficulty of the idea that victims of malpractice should be deferential to those who have caused life long damage to children, because those public health officials are too sensitive to be criticized for their malpractice.
He then points Robinson back to the actual problem, which is that the American Academy of Pediatrics, under Alden's leadership, is encouraging physicians to commit widespread malpractice, and away from the fake smokescreen problem that the AAP is trying to distract the world with, the fact that parents and minority physicians are complaining about the actual problem.
So now that this is being put out in the open, I think it is appropriate to ask, what happened in 2008? As I am witness to a small piece of the puzzle, I will share what I know here.
I was in attendance at the April 2008 DAN conference in Cherry Hill. The month before, the Polings had announced that Hannah had been paid for her vaccine induced autism, Julie Gerberding had been forced to admit on CNN that vaccines can cause autism in children with mitochondrial dysfunction, Jenny McCarthy had announced the "Green our Vaccines" rally, the AAP had announced that it was going to work with ARI/DAN in treating autism, and Jenny McCarthy went head to head with the AAP on Larry King in an explosive interview.
Two days later, the DAN! conference started. It was jammed with people. During the conference, Misty Hiatt, a mother from Florida, stood up and told the crowd that her daughter Madison had also been paid by the VICP for her vaccine induced encephalopathy/autism. And the AAP had sent a group, lead by Dr. Louis Cooper, one of the inventors of the Rubella vaccine.
It was a charged weekend to say the least. On the last day, I sat in the back of the ballroom and somewhere in the middle of Sid Baker's speech, the fact that what had been done to my child, had been done to my child, washed over me and I started crying. I just sat in the back and cried quietly for an hour or so... happy to be in the back at a table next to the sound board by myself.
As the conference ended, I stayed put and watched Dr. Cooper talk with a woman at the front of the room and Stan Kurtz and a few others, waiting to see if Stan would be alone. I had been introduced to him once and hoped that he would give me a little bit of information on Cooper and the AAP's reaction to the conference. While was waiting, Dr. Cooper walked to the back of the room and took a seat about ten or fifteen feet away from me and waited. After a minute, Dr. Jerry Kartzinel, DAN doc and Jenny McCarthy's co-author, pulled a chair around to face Cooper, sat down and asked what he thought.
As you might imagine, I stayed put, closed the blog post that I had begun writing on my impressions of the conference, opened a clean document and began taking notes on the conversation.
About five minutes later, Stan Kurtz joined them and the three talked openly as the room cleared until it was just the four of us.
Cooper lead most of the conversation, he was on the enthusiastic side about what he had seen and heard. Not ecstatic, but I was encouraged an that he seemed much more into it than I would have expected. I would expect that he would have played it more cool and close to the vest. On the contrary, he seemed to be very honest and speaking freely from the heart.
Kartzinel and Kurtz did more listening than talking. They were both very gentile with him, asked good questions that got to the point of the matter with out being aggressive at all.
These are the notes I took as they talked:
My notes on a conversation overheard between Dr. Jerry Kartzinel DAN! doctor, Dr. Louis Cooper representing the American Academy of Pediatrics and Stan Kurtz, immediately following the DAN! Conference on April 6, 2008
All information is directly from Dr. Louis Z. Cooper unless otherwise noted.
Dr. Cooper came into this when Stan Kurtz called Cooper and Jenny was “raising hell”. It was time to “learn about DAN!… and now the current academy leadership and I are here at DAN!.”
Cooper noted with some surprise that “the doctors in the room are our doctors”, meaning AAP doctors. He expressed concern (for several years now) for the loss of trust from parents. He posed the question, “How do we move this forward and get rid of the appearance of combativeness?”
Dr. Cooper mentioned his Rubella and HIV experience a lot. He was quite rooted in those experiences and might/maybe using that model a little too much.
On his role in the 1964 Rubella epidemic:
He took lab from Belleview with him (to Cold Creek? I am not sure where.)
When he was working on HIV, Jim Olestine called him and said, “We’ve got these kids… we need a pediatrician to look at this.”
Cooper said, “That was the second crisis in my life as far as disease epidemic. This is the third.”
Kartzinel asked Cooper what his recommendations for approaching this should be.
Cooper said, “We need to quickly pull together and have a task force and committee.”
Diagnostic tests, definitions, clear treatment protocols were what worked for Rubella.
“This is a multi system disease, a multisystem syndrome. You guys know that. It also has ethical issues, mental health issues, GI issues, public health issues, epidemiological issues, financial issues, insurance issues…”
Cooper says he will recommend that the AAP make a task force for this.
"What I want to include that’s different is…". (could not hear the end of the sentence)
Drug companies have taken over health and there has been hope that health consumers would take that back. “This group represents the best of that”.
He wants to assemble a group place for exchange of ideas and beliefs that would include academy education programs.
“The tool kit is a great start, but that let’s take it to the next step.”
Kartzinel: “What is that step?” Jerry suggests that, ‘If the leaders in each field say, this is a problem, then it becomes real.’ “If the leaders in the GI field say, “we recognize this as a problem”, that would go so far. Then docs would be free to explore the GI track.”
In reference to the pediatrician who stood up in her community and was ostracized, investigated and left the AAP, and who broke down in tears with Stan, Cooper said that that sort of thing should not be happening. He spoke with compassion toward her.
Kartzinel mentioned the Boston ’06 GI meeting that AS sponsored. It was a very distinguished group. What AAP did was provide AS with (could not hear this part) … “But there was no AAP logo” and no official sanction.
In discussing how to get DAN! theory and practice accepted, Cooper said: “Rubella advancement was accepted because”:
1. Two years after diagnostic test
2. “I was at a prestigious institution”
3. “We had the backing of world leaders”
People who were movers and shakers elite and fashion and entertainment industries opened doors for them, and from them he learned a lot about making things happen.
The term “Developmental Disabilities” was coined by congress because of the efforts of a few powerful men. Harvey Firestone had a child with CP and President of ABC and Kennedy’s sister – they talked congress into the Developmental Disabilities Services Act.
“These were accidents of politics that have impact. HIV had a different story. You have a different story.”
“I’m concerned about immunization policy and how you protect immunization.”
“I chaired a CDC blue ribbon panel for Julie Gerberding. We wrote at report and that report got buried. And then Jenny and the Polings came along, God bless them, they have raised so much hell.”
“You are helping me and what I need to do. It has engaged me at a level that I would not have been engaged in.”
Kartzinel: “How do we move forward?”
Cooper: “You have a body of work that will provide receptors with the academy.”
Jerry then shared the problems they have had with submitting research and told about his rejection from one publication. He explained that they returned it with strange objections, “They said, ‘You had no control group.’ Of course I had no control group, it was a case series, it was written write there.”
Cooper: Did you send to pediatrics?
Kartzinel said no, that he didn’t even try.
Cooper: Send it to pediatrics.
They talked about Wakefield.
Cooper: He came out with speculation about splitting the vaccine with no data, and then his failure to disclose poisoned the well.
“My colleagues have a self righteousness.”
No one does controlled measures when they are making observations.
Kartzinel: Is a fully vaccinated group of children at age 4 as healthy as an unvaccinated group of 4 year olds?
(Up until this point in the conversation, Cooper has been outgoing and engaged. When Kartzinel ask this question, Cooper starts to draw into himself a bit.)
Kartzinel: You can’t start out doing a study of vaccinated v. unvaccinarted children because of the ethical problems, but you can do it in primates.
Jerry then tells him about the vaxed v. unvaxed primate study about to begin.
Cooper: “Is there any reason to give Hep B vaccine at birth”? (said as if he is seriously questioning why we are doing it.)
Kartzinel: University of Pittsburgh veterinarian, phase two will be done in Seattle.
Here Cooper raised some question which Kartzinel takes to mean that he is worried about cost, and said that the study is already fully funded and that people are already in place for the study.
Kartzinel didn’t outright invite him to be a part of the study, but left the door open for Cooper to say he wanted AAP involvement. Cooper didn’t bite and was trying to get away from the study idea. Obviously hit a nerve and was outside of his comfort zone.
Cooper: “The public trust has been my major preoccupation in the last few years”. (Cold Spring outlined the problem and made some recommendations?)
One was to work on communication strategies – for pediatricians not be demeaning. Another was a large investment in the safety of vaccines, “not trying to cover up”.
Stan: what do we do from here… what are the objectives?
Cooper: “I want to reflect on in it. I will try to make this attractive to a cross disciplinary task force.”
No single individual should represent the academy.
“That’s how I won rubella. I learned pediatrics.”
Stan: “Parents here have learned pediatrics.”
Amazing to know this conversation took place, isn’t it?
At this point, hotel staff came in and began stacking the chairs so we all moved out of the ballroom. Kurtz, Kartzinel and Cooper walked off together and I hopped into a cab to the train station. On the way home I wrote this cautiously optimistic post: The American Academy of Pediatrics Shows Up in Autism Treatment
I wrote that “it was my understanding that AAP thought…” and never hinted at all that I had heard, because I didn’t want to carpet bomb the delicate process that was underway between AAP and DAN/Team Jenny. What I did do was offer AAP guidelines on how they could use this window of opportunity to end the madness and the war with parents, by eating a little crow, apologizing for the bad behavior and partnering with parents.
I noted that those parents were going to be showing up in DC in just two months, and if AAP was not on board by the time of the Green Our Vaccines rally, then their actions would be seen as empty gestures and public relations maneuvers; and that window would begin to slam shut pretty quickly.
And sadly, that is what happened. AAP did not show up, they merely sent TACA their ‘autism took kit’, which of course is a joke, because TACA is itself an ‘autism encyclopedia’ and should be writing AAP’s literature for them. They again treated us like the red headed step child, the divide between our community and AAP got wider and for all their money and power, AAP has continued to loose the “autism war” to a bunch of broke, stressed out, “Justamoms”, who daily, fearlessly, continue to speak truth to power.
But AAP still does not get that they are in the wrong, and are still under the delusion that if they just find someone with perkier boobs than Jenny McCarthy to become a vaccine cheerleader, then they can turn this thing around. Their tactics keep failing, yet they keep trying the same failing tactics over and over… “this time it’ll work”, they must be saying to each other in their offices… “..because this time we will have FOCUS GROUPS!”
They do not get it.
Rather than stopping the runaway train, they have just increased their speed as they head toward the edge of the cliff… unalarmed by the increasing numbers of parents and physicians quietly disembarking the crazy train.
There is none so blind as those that will not see.
So this brings up a lot of questions.
First off… if AAP was earnest, why would they send the man who invented the Rubella vaccine to present an evaluation on whether or not “his baby” was now giving children brain damage? It was clear when vaccine issues came up that Cooper became uncomfortable, but to his credit, he seemed genuinely impressed with biomed treatment and that he wanted to move forward on it. Did AAP expect him to dismiss all of DAN?
I am convinced that Cooper was earnest in what he said to Kurtz and Kartzinel. Did he make the recommendation to set up a task force to AAP? My BS meter had been pretty finely tuned at that point, and when he talked about treatment, he was sincere as far as I could tell. Unless he is one of those guys that really means it at the time, but really believes something else when he is with a crowd of another persuasion? So if he made these recommendations to the AAP, what happened? Did AAP blow them off? Did Tayloe and Alden put the kibosh on it?
What happened to, “Diagnostic tests, definitions, clear treatment protocols”?
Cooper said, “disease epidemic”. Why won’t AAP say it?
Cooper said that AAP wanted people weaning off Pharma and being good health consumers. And that we represented the best of that. So why are we being demonized? Did doctors want that, until they got it, and then discovered they didn’t like being challenged?
Didn’t AAP want to see the results of the primate study? Or did they use this as a heads up to bury it?
Here’s a biggie: WHAT WAS THE BLUE RIBBON PANEL THAT COOPER CHAIRED FOR GERBERDING, WHOSE RESULTS GOT BURIED? WHY DID HE NOT UNBURY THEM AND USE THEM?
Here is an easy one, “How do we move this forward and get rid of the appearance of combativeness?” I don’t know… stop being combative? Seems like its worth a try.
What were the other reports from the other docs who visited the conference?
And here is the most obvious one. If public trust is so important to the AAP, why are they lying to the public? Why are they crapping on their customers? What exactly do they think will happen if they treat parents with dismissals, insults and really bad PR?
Paul Robinson wrote this:
“Things were proceeding quite well when suddenly Stan had to leave DAN and then he joined G.R. Jenny's continual national attacks brought so much heat on Errol from the AAP's constituency that he had to back away from the whole process. G.R.'s belligerence ruined a very likely alliance and who suffers? the kids! Nice work G.R.!”
If AAP was working with DAN/ARI, then why didn't they just continue working with DAN/ARI? Who the hell cares what Jenny McCarthy was doing? If Stan ran naked through an AAP meeting and Jenny threatened to burn down Chicago just to spite the AAP, who the @#&$% cares!? Either these treatments heal our children or they don’t! Robinson’s argument seems to be that it is OK for physicians to throw children under a bus (and that phrase is only BARELY used figuratively here) if they are offended by a shock/comic actress and a guy who owns a preschool?
I don’t want to completely trash Robinson here, because he seems like he has come part of the way on this (although JB is right, IMHO he should have, and still should, throw down the gauntlet with his brother in law), but Robinson does not seem to understand that he is making the case for us on how corrupt the AAP is. If they don’t like how a few people act, they are allowed to commit malpractice on yours, mine and every child with autism in this country? And say that Generation Rescue made them do it!
And the AAP is shocked when parents are pissed at them? (It takes all my self control not to continue on in a stream of expletives at this point.)
Jerry Kartzinel could not be a nicer, more professional doctor, and he is very widely respected. If they didn’t like Stan any more, they couldn’t call Jerry? Or Lyn Redwood who was on the IACC? Or Jane Johnson at ARI? Or anyone one of the hundreds of really boring, zero drama, non-comic actresses that daily serve children with autism?
Exactly what is the mean age of an AAP member? 15?
If Generation Rescue insults Pakistan, does that mean they are then allowed to nuke India? I need to get a read on just how far the McCarthy defense goes.
I will end the way I have been ending these posts for years. By asking AAP/CDC et. al. WHAT IS YOUR PLAN? How long are you going to drag this out? How far do vaccine rates have to drop, how bad does your reputation have to get? What is “bottom” for you? What is your plan here?
Wise pediatricians… rise up and take back your profession. If not you… then who? If not now, then when? How man thousands of sick children are you willing to watch fall just to keep your job or your seat at the table or your invite to the party?
You are the grown ups… take back the steering wheel.
Ginger Taylor runs Adventures in Autism.