By Kathryn G. Menu
As a pediatrician who has served the East End for decades, Dr. Gail Schonfeld said the release of a 1998 case study in the medical journal The Lancet suggesting there could be a link between autism and gastrointestinal problems in autistic children and the measles, mumps and rubella immunization had an alarming and far-reaching impact on her patients.
Many began to fear if they inoculated their children they could be leading them towards disability, even as other scientists refuted the study, including a number of the authors who published the report alongside the surgeon and medical researcher Dr. Andrew Wakefield, who led the 1998 study.
Last year, following an investigation into the study, the British General Medical Council (GMC) concluded that the research was flawed and dishonest and shortly thereafter The Lancet retracted the case study. In May of 2010, Wakefield was stripped of his license to practice medicine in the UK.
In an investigative report released earlier this month in the British Medical Journal, reporter Brian Deer called Wakefield’s study “an elaborate fraud,” stating he falsified medical records to achieve his results. In a follow-up article this week, Wakefield’s financial motivation was also called into question, with Deer reporting that the doctor had allegedly been paid by a group of attorneys to help build a case against vaccine manufacturers and was also looking to develop alternative vaccines to replace the MMR inoculation and diagnostic testing kits for autism. According to Deer’s report, Wakefield and his partners stood to make tens of millions of dollars from the kits alone.
Despite these findings, Dr. Schonfeld this week said she does not expect the new revelations to have a reverse impact resulting in more parents willing to vaccinate their children against measles, mumps and rubella, or other infectious diseases like pertussis and polio.
“It isn’t going to change because it’s viewed as a conspiracy between doctors, the government and the pharmaceutical industry — that we are somehow working together to harm children to turn a profit,” she said. “And you if you believe that, there is nothing I can say to change your mind, but I do try.”
“There are people that are paralyzed with fear. It has been a long time that we have been vaccinating children, and I think it was different for people who have experienced these diseases,” she added. “Because they are less prevalent, people don’t feel the threat of them like they used to.”
For Dr. Schonfeld there is no question that Dr. Wakefield’s work and celebrity has caused “huge amounts of harm,” including being directly responsible for large declines in the number of inoculated children, with the Center for Disease Control in 2008 reporting the largest number of measles cases in the United States since 1997.
“And all of this was based on misinformation,” said Dr. Schonfeld.
Parents remain divided on the issue, those with autistic children as well as those whose children are not autistic, but who are in the midst of deciding whether or not to immunize their children.
Noyac resident Julie Penny, whose grandchild, like the 12 children studied in Wakefield’s report, has both autism and suffers gastrointestinal problems, feels the British Medical Journal article is a “witch hunt.” More importantly, she said Wakefield called for further research into the connection between MMR and autism, not specifically concluding that the two were intrinsically linked.
Penny believes the connection is there, and cited studies she has collected that support Wakefield’s concerns over the safety of vaccinations from numerous universities.
“There is absolutely nothing showing the current schedule and the amount of vaccines given in the United States is safe,” said Penny. “What the media is trying to do is to make a false equivalent. Being concerned about vaccines does not automatically translate into synonymous support of Dr. Wakefield. The accumulating evidence coming from all over is speaking for itself.”
Penny said she would like to see independent testing, performed outside of the pharmaceutical industry and those who benefit from their financing, and thinks the vaccination schedule for children in the United States should be reduced and spaced out.
Another Sag Harbor parent, who asked her name not be used in this article, was aware of developmental delays in her daughter before she was ever offered the MMR vaccination. Her daughter, now eight, has Asperger’s Syndrome, an autism spectrum disorder.
“There were signs,” she said. “She wasn’t speaking when it was time for her to get the MMR vaccine, and there were other concerns, she couldn’t point to her belly, things like that.”
Her pediatrician, noting the signs, suggested they hold off on the vaccination while they explored the cause of the developmental delays, although she has since been inoculated. She also plans on immunizing her young son, when the time comes.
However, even though this mother does not believe her daughter’s syndrome was caused by vaccinations, she does recognize that the vaccination is often given at the age when these issues begin to shine through.
“There are tens of thousands of mothers who say they watched their children change after immunizations,” she said. “And I don’t believe they have nothing better to do than make this up.”
She also questioned how Wakefield’s research has not been duplicated in a peer reviewed medical journal despite numerous attempts since 1998. However, the sharp rise in autism rates — one in every 100 children — has yet to be explained, she said, leaving a lot of parents wondering whether environmental factors like the foods we eat, toxins in the air and water, or immunizations are to blame.
Mare Dianora, a Sag Harbor mother, has chosen a delayed vaccination schedule for her son and she and her husband select which vaccinations he will receive based on the Danish vaccination schedule, which recommends less than the traditional United States model.
Dianora said the Danish medical industry is not-for-profit, and suggests children get just a third of the 36 vaccinations children receive in the United States.
“My personal concern is they are getting so bombarded in this country,” she said, adding it is difficult to find reliable information on the safety of vaccines.
Dianora said she is also concerned with some of the ingredients found in vaccinations, including aluminum, formaldehyde and animal byproducts.
For North Haven mother Karen Jones, when she was pregnant with her first child, a son, she grew increasingly concerned about the link between autism and vaccines, in part, because of Wakefield’s research.
“My initial knee-jerk reaction was that it had to be linked, but I spent a few hours the night before my son’s check-up and impending MMR jab and was surprised to find that Wakefield’s landmark study had a very small sample size and was largely anecdotal,” she said.
That, coupled with the knowledge that measles is a deadly disease, led Jones to give her son the immunization and she said she has no regrets.
“He was no different after that, nor has he changed after his MMR booster,” she said.
Jones said she believes that many more people have a level of autism than previously believed, and that it could be linked to environmental factors like chemicals and toxins in food, water and air.
She said when compared to the medical climate in developing countries, it almost feels like a luxury to decide not to vaccinate, with children in poor countries suffering the effects of measles and other deadly diseases without their parents having the option to vaccinate at their fingertips.
Another Southampton parent of a child with autism said, “The fact that the now-debunked study by Andrew Wakefield was based on only 12 children, and that some children were subjected to invasive procedures, shows how desperate parents can be to find answers to the mystery of autism. I think we all know that there is no magic bullet but, for some, having something to blame maybe helps make sense of something over which we have little or no control. The bottom line is we all want to help our children but we need to be diligent in our understanding of proposed causes and possible interventions. That is no small task given the mountains of information, erroneous and not, that is out there regarding autism.”
For another Sag Harbor parent whose son has autism and who has met Dr. Wakefield, she concretely believes the United States needs to rethink its vaccination program, and believes the combination of antibiotics and vaccines given to her son as an infant directly caused his disorder.
“If you think about it, when in your life would your body be asked to mount an immune system to fight three different diseases in the same day,” she said of the MMR vaccine.
She said a misconception about Wakefield is that he is anti-vaccine, which she said he is not. Similar to other doctors in the Defeat Autism Now (DAN) network, this mother said Wakefield and his colleagues are supportive of a vaccine schedule that is delayed, and separates out each disease into a single vaccination, with months between each inoculation.
Her son followed the traditional schedule, although she did wait until he was four months old before beginning the vaccinations. At that point, she said, he had already received antibiotics as an infant, which she said destroyed his gut lining. By nine months, he was not meeting his developmental milestones.
While she believes it was the accumulation of vaccines and antibiotics in her son’s body that led to his disorder, she also has met scores of parents who testify to witnessing developmental delays directly after their children received the MMR vaccination. And she doesn’t think this latest development will change the groundswell of parents questioning the current vaccination schedule.
“It is too much of an epidemic to ignore,” she said. “Everyone knows a child these days who is autistic.”
She added that in addition to vaccinations and antibiotics, the toxins in the environment are also to blame.
“I wish people would come together in the middle and say we don’t want to go back to terrible diseases, but why can’t this be done in a responsible manner,” she said. “Let’s start with one disease, one vial for each child, spread it months apart and start them much later. It doesn’t seem to be heard that there is this middle ground.”
This mother has worked with North Haven physician Dr. Sidney Baker, a preventive medicine specialist who specializes in autism treatment.
A colleague of Wakefield’s, Dr. Baker said he supports Wakefield’s work and that the medical and scientific community have a long history of fighting change, particularly when it affects the pocketbooks of the industry.
Dr. Baker said Wakefield’s initial report was “cautious” in its findings, suggesting more research.
“When you see a gracious and honest man, and brilliant scientists subjected to public flogging and execution, one has to wonder if the intent is beyond taking his license away,” said Dr. Baker. “I see this as a not very brilliant gesture on the part of critics to make sure no one ventures into this field of research.”
Dr. Baker said no one in his corner of the field believes children should not be immunized, but that vaccine safety research needs to be done, and that the total number of immunizations in a short period of time needs to be reduced.
As for the cause of autism, he said the picture he sees emerging is one that faults not just vaccines, but toxins like mercury, air pollution and the foods we eat. All these have an impact on the way the human body manifests itself in autism in young children and Alzheimer’s disease and Parkinson’s disease in the elderly.
On Tuesday, in a written statement from the national organization Autism Speaks, Chief Science Officer Geraldine Dawson, said numerous large scale studies have not supported a link between the MMR vaccine or thimerosal — a mercury-based preservative used until 2001 in vaccinations — and the rise in autism rates.
Dawson said, “the present state of the science indicates that the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism,” adding that certain genetic factors could lead to an adverse response in specific cases. Dawson said Autism Speaks is conducting research to determine if certain individuals might have an increased risk of developing autism symptoms following vaccination.”
“It is important to make a sustained investment in monitoring and optimizing vaccine safety relating to variations in manufacture, new vaccines, and new combinations of vaccines,” she said.
For Dr. Schonfeld, though, watching increases in the number of preventable infectious disease outbreaks is hard to take as a medical professional.
“Nothing in life is 100 percent safe,” she said. “You have to balance the risk of the disease and the risk of vaccine side effects. Except for small pox, which was eradicated through vaccinations, these diseases are real and a plane ride or a car away, and as we saw with SARS (severe acute respiratory syndrome) sometimes it doesn’t even take a week to spread.”