Dedicated to the Health of All Children… Is the American Academy of Pediatrics losing credibility with parents and pediatricians? (Note, this piece was originally run in Mothering Magazine. The author allowed us to reprint it given the timely nature of the topic of AAP and our children.)
By Bobbie Manning
As the battle lines continue to be drawn between parents and professionals in the debate over the use of mercury in children's vaccines, a new level of activism emerged on October 8th, as parents descended on Washington DC to appeal directly to the prestigious American Academy of Pediatrics (AAP). Following a day of marching and meetings with lawmakers on Capitol Hill, parents turned their attention to the DC Convention Center, where the AAP was holding its 75th Annual Convention.
Inside the Convention center, Generation Rescue (GR), a parent organization providing information that suggests autism and other developmental disorders are often misdiagnoses for mercury poisoning, welcomed both interested and skeptical pediatricians into their exhibit booth.
Under a 20-foot banner that read "Autism is Treatable and Preventable", a team of dedicated parents explained how children were recovering, losing autism diagnoses after receiving medical interventions targeted towards their biomedical abnormalities.
Armed with the latest research, including before and after videos of autistic children who have undergone treatment for medical symptoms, the GR "Rescue Angels" were encouraged by the response of many pediatricians who patiently and often enthusiastically reviewed the materials available at the booth.
"Our objective was to reach out to pediatricians and show them that autism is not a hopeless neurological condition," said Kevin Barry, founder of Generation Rescue, "but really a treatable medical condition resulting from a variety of factors, but primarily exposure to mercury-containing vaccines. It was encouraging to see how many pediatricians really wanted to see the material and how often they agreed with what we were showing them."
While the Generation Rescue team was receiving an encouraging response from pediatricians inside the Convention Center, the same could not be said about the reception being extended by AAP convention organizers to parents gathered outside the exhibit hall.
Several days before the convention, GR received word that seven of their representatives would not be issued exhibit hall badges due to their participation in the Power of Parents Rally on Capitol Hill the day before the conference. Learning of the AAP objections, the targeted representatives decided it was more important to speak to the physicians than to speak at the rally and appealed to AAP officials to allow them to work at the GR booth.
Prior to discussing the situation with the group, Cynthia Airhart, AAP Director of Division of Convention and Meeting Services, ordered the removal of two press-approved documentary film crews covering the conference activities. With security guards standing by, the parent group, including a physician, a nurse, and an 11-year-old boy previously diagnosed autistic but later found to have suffered from mercury toxicity, were prohibited from entering the hall. In justifying the ouster, the AAP cited violation of rules for disseminating material outside the conference hall and for participating in the Power of Parents rally.
When reminded that the group had been singled out in an email and banned five days earlier, and that only one parent had passed out information, Ms. Airhart refused to discuss the situation further or allow the group to speak to a superior AAP official. She instructed security to remove the group and also rejected a request to allow the 11-year-old child to stay to help hand out information and speak with the pediatricians at the GR booth.
“We have Freedom of Speech, but not the Freedom to be heard”, said parent Scott Bono after being removed from the building.
“We came here today asking for help for our sick and injured children. We brought with us relevant new research and information that the AAP denied its members access to. Why?” asked Wendy Fournier, President of the National Autism Association.
Heavy-handed tactics did not end with the removal of this group. Outside, in a torrential downpour, clutching signs pleading for pediatricians to study and treat their children in one hand, umbrellas in the other, parents were monitored by convention security guards. Having been told she couldn't come into the building to buy coffee without first concealing the message on her t-shirt, "Childhood Stolen by Thimerosal," one mother donned a purple rain poncho and continued to be tailed by security once inside. When asked by a coffee kiosk employee what was on her shirt, the parent was instructed by the guard to "cover-up and get going."
As parents held signs that read "Our Children Need Your Help", some physicians passing by appeared annoyed, shouting back that mercury was no longer in vaccines. But a number of doctors offered a thumbs-up sign or whispered encouragement, and several suggested that the group become "more vocal".
Back inside, Generation Rescue booth volunteer Rita Shreffler was questioned and then accused of taking another representative’s badge so that she could get into the exhibit hall. Even after supplying identification to confirm her identity, Shreffler noticed security guards continuing to follow her throughout the day.
"Pediatricians are interested in our information," said Shreffler, "but the AAP leadership acts as if we are some kind of threat to them. It begs the question: Why is the AAP so hell-bent on preventing pediatricians from reading and making their own decisions on thimerosal research? This organization's intimidation tactics should be a wake-up call to their rank and file."
Parents weren't the only ones feeling intimidated. A pediatrician that had offered encouragement to the demonstrators outside the building later agreed to comment on the information available at the GR booth but didn't want to disclose his name.
“This is so important. Most pediatricians don’t know this because we are given deceitful information about the mercury in vaccines. This is a very big problem.” he said. “Doctors are afraid to talk about this, and the misinformation is so bad that I no longer believe the pharmaceutical industry or their data anymore. There is starting to be a real erosion of confidence in the response of our Academy.” When asked if he had spoken with the AAP leadership about his concerns the doctor shook his head, “They won’t listen…there is too much money involved. And the mercury causes more health problems than just autism.”
The AAP has been an intimate "player' in the thimerosal/autism debate for many years. In 1999, public health officials, including AAP leadership, exchanged "confidential" emails and held "urgent" conference calls trying to figure out how to respond to the thimerosal crisis. At the time, Dr. Ruth Etzel, a pediatrician and epidemiologist who worked for the Center for Disease Control and Prevention (CDC) and is the founding Editor of the American Academy of Pediatrics (AAP) manual, Pediatric Environmental Health, offered a suggestion to some of her AAP colleagues.
“The AAP should be dedicated to promptly providing truthful information about this situation to pediatricians. We must follow the three basic rules:
(1) Act quickly to inform pediatricians that the products have more mercury than we realized
(2) Be open with consumers about why we didn’t catch this earlier
(3) Show contrition
As you know, the Public Health Service informed us yesterday that they were planning to conduct business as usual, and would probably indicate no preference for either product. While the Public Health Service may think that their "product" is immunizations, I think their "product" is their recommendations. If the public loses faith in the PHS recommendations, then the immunization battle will falter. To keep faith, we must be open and honest now and move forward quickly to replace these products. Short term shortages occur.
AAP should assure pediatricians that we are committed to making sure that all children will be vaccinated, although some may be delayed due to shortages. This is what American parents want to hear from their pediatricians. Anything less may cause them to lose faith in our recommendations."
Five days later, having rejected Dr. Ertzel's advice, the AAP and the Public Health Service issued a joint statement acknowledging that some children may have been exposed to cumulative levels of mercury from vaccines in the first six months of life that exceeded one of the federal guidelines for methyl mercury. The statement read, "because any potential risk is of concern, the Public Health Service, the American Academy of Pediatrics, and vaccine manufacturers agree that thimerosal-containing vaccines should be removed as soon as possible. The US Public Health Service and the American Academy of Pediatrics are working collaboratively to assure that the replacement of thimerosal-containing vaccines takes place as expeditiously as possible."
For several years following the AAP/PHS statement, over the objection of some public health officials and vaccines manufacturers, AAP officials continued to raise "red flags' regarding the wisdom of using mercury in vaccines.
In July 2001, the prestigious Academy published a paper in The Journal of Pediatrics titled Technical Report: Mercury in the Environment; Implications for Pediatricians. “Mercury in all of its forms is toxic to the fetus and children, and efforts should be made to reduce exposure to the extent possible to pregnant women and children as well as the general population.” Again, Dr. Etzel was one of the authors of the report.
That same month, Dr. Neal Halsey, Chairman of the American Academy of Pediatrics from 1993 through 1999, offered the following testimony before the Institute of Medicine Immunization Safety Review Committee meeting on thimerosal-containing vaccines and neurodevelopmental outcomes.
“I was going to tell the committee that Thimerosal was neurotoxic, but six other people have already done that, so I don’t think I need to do that. Causality has been established with regard to the potential for causing it.”
In what might be the most puzzling about-face in its history, the AAP has apparently reversed course, abandoned the ‘precautionary principle’ and appears to no longer be concerned about mercury-containing vaccines. In Action Alerts to their membership and newspaper editorials, the AAP has engaged in an aggressive campaign to rehabilitate thimerosal, going so far as to endorse its continued use in vaccines. Earlier this year, the AAP encouraged its membership to write LETTERS OF OPPOSITION to the Governor of New York and officials in other states considering legislation to limit thimerosal use in vaccines given to infants, children, and pregnant women.
Despite dismissals from many in the medical community regarding thimerosal’s link to rising neurological disorders among America’s children, it is clear that this debate is only intensifying. The good news for parents and children is that organizations such as Generation Rescue have entered the arena, encouraging pediatricians to read for themselves the relevant information. To the surprise of all the Rescue Angels at the AAP convention, many pediatricians were willing to sign a petition at the Generation Rescue booth urging the removal of thimerosal from vaccines.
Perhaps the time has come for the American Academy of Pediatrics to evaluate potential erosion of confidence among its members and to reconsider Dr. Ruth Etzel’s 1999 email. An institution with a motto proclaiming it is “dedicated to the health of all children” might realize its handling of the thimerosal crisis has its reputation hanging in the balance.
This article originally ran in Mothering Magazine.