THE POLICY IMPLICATIONS OF THE HANNAH POLING DECISION
Editor's Note: Margaret Dunkle is Hannah Poling’s great aunt and an early intervention specialist. She wrote the following memo to her colleagues at the “Early Identification and Intervention Collaborative for Los Angeles County” and has given her permission to Age of Autism to reprint it in full.
To: Early Identification and Intervention Collaborative for Los Angeles County
From: Margaret Dunkle
Date: March 17, 2008
What Are the Policy Implications of the Hannah Poling Decision
for Screening, Intervention and Treatment?
Most of you have heard that the federal government has conceded that:
“…the vaccinations Hannah [Poling, an Athens, GA, girl who is now nine years old] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism and manifested as a regressive encephalopathy with features of autism spectrum disorder.” *
Additionally:
“Having reviewed this additional evidence, [medical personnel at the Division of Vaccine Injury Compensation, Department of Health and Human Services (DVIC)] now recommends compensation for Hannah’s seizure disorder as sequela of her vaccine-injury….” **
What are the policy implications of this decision? What questions need to be asked – and answered – by people who care about both:
• Public health and a safe and effective immunization program for major diseases, and
• The health and future of individual children like Hannah Poling?
This discussion is especially appropriate since, as most of you know, Hannah Poling is the reason I began to work on issues concerning early identification and intervention issues in the first place. Without Hannah Poling, there would be no EII Collaborative!
The policy questions we will discuss at Thursday’s meeting will focus on early screening and intervention:
1. How can we quickly find ways to screen for and identify the subset of children like Hannah for whom vaccines can cause or exacerbate mitochondrial damage and lead to symptoms of autism?
2. In the meantime, how can children such as Hannah*– be they few or many – be identified at the earliest possible moment and sped into intense intervention (i.e., the Part C, Early Start IDEA program for children ages 0-36 months or the Preschool Special Education IDEA program for children ages 3-5)?
3. What would it take to start screening siblings of children with autism to see if they have biomedical markers that could lead to screening tests or treatment for children who, like Hannah Poling, have a mitochondrial dysfunction?
Thinking about national policy, other important questions the Hannah Poling Decision raises are:
1. Should the number, ages administered, and frequency of childhood vaccinations be reviewed – and perhaps changed – to minimize damage to susceptible children, such as Hannah Poling?
Interestingly, just last Friday, March 14, the federal Advisory Committee on Immunization Practices (ACIP) updated it’s recommendations regarding a combo vaccine (for measles, mumps, rubella and varicella – MMRV). Specifically, ACIP changed its recommendation from “preferring” this combo vaccine to having “no preference” for the combo over separate injections of equivalent component vaccines.
ACIP did this because the Vaccine Safety Datalink monitoring system found that children receiving the new combo (4-vaccine) shots had a statistically significant greater risk of seizures than children who received the MMR and varicella vaccine administered separately at the same visit.
For details, see: MMWR, March 14, 2008
(http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5710a3.htm ) and MedPage Today, March 14, 2008 (http://www.medpagetoday.com/InfectiousDisease/Vaccines/dh/8755)
2. How do we find out how many Hannah Polings there are? Right now, no one knows, since mitochondrial dysfunction in children is almost never measured and, as yet, there is no screening available to detect these problems.
3. Should the federal government revamp the way it approves vaccines and monitors their safety, or even set up an independent agency (separate from the Centers for Disease Control, which also runs the National Immunization Program) to research, approve, and monitor the safety and effectiveness of vaccines?
4. Should the vaccine compensation act be tweaked to give parents longer than three years to file, especially given the newly identified “mitochondrial dysfunction” implications of the Hannah Poling decision and because we want parents and families to devote 100% of their energy to early intervention as soon as they learn their child has a problem?
5. What will it take to quickly and effectively research these mitochondrial issues to get to the bottom of what is going on with children such as Hannah, and to come up with effective screening and treatment?
• Was Hannah Poling born with a mitochondrial dysfunction or did she somehow acquire it after birth?
• What exactly was it about the vaccines Hannah Poling received that triggered her regression – something about the vaccines themselves? the number of vaccines? the timing of the vaccines? preservatives in the vaccines? the combination of vaccines she received on the same day? or something else?
If you are interested in these issues, please be sure to read the two items I sent out last week – a piece I wrote on Autism, Vaccines and Early Intervention (The Hannah Poling Case), and the Letter from Jon Poling, MD, PhD, to Steven Novella, MD.
My best wishes to you,
Margaret
Margaret Dunkle
Director, Early Identification & Intervention Collaborative for Los Angeles County, and
Senior Fellow, Center for Health Services Research & Policy, George Washington University
Autism is, well … autism. Here is a different approach to the problem of autism. Consider that one fifth of autistic children have high levels of uric acid. Gout is not for children, it is diagnosed in older overweight men and women after menopause. Children shouldn’t be diagnosed with uric aid, but they are. It is not likely that genetics or evolution are the cause of change, but the environment could be.
In addition to unusual uric acid levels, autistic children have problems with sleeping, ear infections, diarrhea, reflux, cognition and more. Breast feeding advocates point out that bottle feeding is a risk for many of the biological ailments in regressive autism. (Also - early weaning -- infantile autism.) Once there is a risk, all that is needed is a trigger. In my opinion mandated DpT and MMR are triggers, but while sinusitis, rhinitis and other natural upper respiratory viral infections might also supply the trigger, none of them is mandated.
I am not a doctor. More can be found by Googling …sleepnet “more regressive autism”…., select the second return. (Quotes marks are critical as they are.)
Posted by: Joe Herr | April 03, 2008 at 06:38 PM
Bernard,Enayati,Binstock,Roger, Redwood, McGinnis were so ahead of their time. They knew that mercury, thimerosal were capable of cascading effects besides acute poisoning. Look at what they found and reported in 2000 via "Autism, A Unique Type of Merury Poisoning- It is a bible in my home--My deep appreciation for all the excellent and pertinent research that they reported.
"Mitochondria: Disturbances of brain energy metabolism have prompted autism to be hypothesized as a mitochondrial disorder (Lombard, 1998). There is a frequent association of lactic acidosis and carnitine deficiency in autistic patients, which suggests excessive nitric oxide production in mitochondria (Lombard, 1998; Chugani et al, 1999), and again, mercury may be a participant. Methylmercury accumulates in mitochondria, where it inhibits several mitochondrial enzymes, reduces ATP production and Ca2+ buffering capacity, and disrupts mitochondrial respiration and oxidative phosphorylation (Atchison & Hare, 1994; Rajanna and Hobson, 1985; Faro et al, 1998). Neurons have increased numbers of mitochondria (Fuchs et al, 1997), and since Hg accumulates in neurons of the CNS, an Hg effect upon neuronal mitochondria function seems likely - especially in children having substandard mercury detoxification."
Posted by: Teresa Conrick | March 31, 2008 at 04:29 PM
Michelle,
Here's another story for you ... back in the late '60s, or early '70s, my daughter's preschool teacher had her daughter, then a toddler, vaccinated against measles. I'm pretty sure it was just measles--this was before the MMR, I think. But anyway, Sylvia's daughter came down with a high fever and personality changes right away. When the personality changes persisted, Sylvia took her daughter to a counselor. And do you want to know what he told her? "It's all your fault. You're just not a good mother." The refrigerator mother theory, alive and well, it seems!
And this, of course, all took place well before my twins were vaccinated with MMR at 12 months. One changed right away. She has classic autism, and possibly a mitochondrial disorder as well.
Posted by: Mary | March 31, 2008 at 03:36 PM
How autism is a mystery. Of course, it is tied to the MMR virus. My twins, had the shot at 18 months old, this was 1998. I remember the doctor asking if I wanted the Live virus or the dead virus. They advised the live virus and said they would have mild symptoms of Mumps, Measles and Rubella. I agreed to the live - big mistake the next 3 days were nightmares. One of the girls had a 104 degree fever and the other a 106 degree fever. I took them to the emergency room, and the doctor gave them moltrin and tylenol and told me this is a common occurrence with toddlers and the MMR shot. They told me just watch them and if the fever persists in 24 hours to come back. Well I stayed up all night taking care of them we made 2 more trips to the Emergency room, just to be sent back home.
The one with the 106 degree fever, there were noticeable changes in personality after this point. She has uncontrollable bouts of anger, as well as shaking of her head and arms. I have spent many years working with her to control her temper tantrums and shaking. The symptoms were minor compared to others, so I did not seek help. She is now a teenager and seems to have turn the corner, even though I know it is still there if she gets stressed or upset.
The MMR vaccine is the problem....this is where they need to start looking and tracking data....it is funny all the issues - I have read about for kids with Autism have started around 18 months....how come no one has said the MMR vaccine is the culprit.
Posted by: Michelle Griffin | March 31, 2008 at 03:24 PM
"2. How do we find out how many Hannah Polings there are? Right now, no one knows, since mitochondrial dysfunction in children is almost never measured and, as yet, there is no screening available to detect these problems."
Actually, this part is incorrect. Its only the CDC and the AAP (and the pediatricians) that claim that there is no way to measure and screen for mito problems. See here, this paper below by Rossignol and Bradstreet:
http://www.scipub.org/fulltext/ajbb/ajbb42208-217.pdf
Go to the right hand column on the top of page 210 for "Biomarkers of classical mitochondrial disease and MtD in autism."
In fact, the other study referenced there by Filipek et al of a 100 children - "found evidence of MtD that was expressed by significantly reduced levels of free and total carnitine and increased ammonia, alanine, and lactate blood levels[64]" is available here:
http://www.vitalitywellness.com/education/pdfs/CarnitineFilipek.pdf
In other words, there is NO excuse or justification for the claim that these kids cannot be screened. That's pure bunk put out for fodder for mainstream media that seems to have its head up "you know where."
Posted by: Largesse | March 31, 2008 at 10:47 AM
I am stunned to read this letter.
THIS right HERE, is what the head of the CDC should have done IMMEDIATELY on hearing of the Hannah Poling news coverage (nevermind for a moment what ought to have been done years ago).
THIS is what a responsible, ethical, moral, head of an institution such as the CDC would have done, having been confronted with news of enormous magnitude like the Hannah Poling case.
THIS is what is due to the American public, and is the message that all doctors/ pediatricians/ health officials should have received IMMEDIATELY from the CDC.
THIS is what would have told the American public that yes, indeed, there is a public health agency out there that is interested in its welfare, and is doing all it can to aspire reaching towards that goal.
I hope the CDC, the AAP, and their vile extensions in the media realize, that THIS is exactly why we are up in arms over the issue. That the CDC is extremely wanting in just about every aspect of this enormous epidemic disaster - from the begining to the present and unfortunately, on-going. Margaret Dunkle, is there any way we can appoint you as the next head of the CDC?
Posted by: About Time | March 31, 2008 at 08:35 AM