“Rubella virus is associated with autism and the combined measles, mumps, and rubella vaccine, (rather than the monovalent measles vaccine), has also been implicated.” With that sentence in the discussion section of his paper, “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children,” in The Lancet5, Andrew Wakefield and his 11 co-authors set off a furor over vaccination that has yet to abate.
The study purported to be a case series which established a link between the gastrointestinal difficulties and cognitive and behavioral deficits of a series of 12 children in the UK. According to the article, “Onset of behavioural symptoms was associated, by the parents, with measles, mumps, and rubella vaccination in eight of the 12 children, with measles infection in one child, and with otitis media in another… In these eight children [in whom the combination MMR vaccine was implicated] the average onset from exposure to first behavioural symptoms was 6.3 days (range 1-14).”5
Seth Mnookin describes the scene at the London news conference where Wakefield first appeared to discuss his paper. “Knowing that the paper’s findings would be controversial from the beginning, the five experts who addressed the media had agreed beforehand that regardless of their individual interpretations, they’d deliver one overarching message: Further research needed to be done before any conclusions could be drawn, and in the meantime, children should continue to receive the MMR vaccine. Once the tape recorders began to roll, however, Wakefield went dramatically off script. ‘With the debate that has been started, I cannot continue to support the continued use of the three vaccines together… My concerns are that one more case of this is too many and that we put children at no greater risk if we dissociated those vaccines into three…’ ”6
The study was immediately and widely criticized, and within months, epidemiological studies were published that failed to find a link between MMR vaccine and autism, some of them in the pages of The Lancet.14,15 Eventually, investigative reports by journalist Brian Deer in The Times (of London) in 2004 looking at Wakefield’s conflicts of interest in the 1998 paper led to a retraction by 10 of the 12 co-authors of the paper. According to the retraction, “no causal link was established between MMR vaccine and autism as the data were insufficient.” 16
Deer’s work in 2004 as well as in three subsequent investigative articles in the British Medical Journal 17 showed that:
Eventually the UK’s General Medical Council (GMC) engaged in an unprecedented 217-day hearing between July 2007 and May 2010 on Wakefield’s fitness to practice. On May 24, 2010, they concluded, “Dr. Wakefield’s misconduct not only collectively amounts to serious professional misconduct, over a time frame from 1996 to 1999, but also, when considered individually, constitutes multiple separate instances of serious professional misconduct. Accordingly the Panel finds Dr. Wakefield guilty of serious professional misconduct,”18 and Wakefield had his license to practice medicine in the UK revoked.
Three months earlier, on February 2, 2010, The Lancet had quietly retracted Wakefield’s 1998 paper. 19
Case closed. One would think. But if anything, Wakefield’s decredentialing by the scientific and medical communities has turned him into a martyr, someone who is willing to give up everything for what he knows is right, a loner who refuses to be destroyed by those in power. Soon after the censures by the GMC, J. B. Handley, co-founder of Generation Rescue, a group that disputes vaccine safety, said, “To our community, Andrew Wakefield is Nelson Mandela and Jesus Christ rolled up into one… He’s a symbol of how all of us feel.”20
How did this happen, and why has the medical community let it happen?
In the fall of 2009 as the CDC and the World Health Organization were warning of a pandemic caused by a new H1N1 flu strain, physicians were being asked, not just by patients but by the media, for their advice about vaccinating children. Unfortunately, in early news reports this new flu strain had been referred to as Swine Flu, and the rapid production of an H1N1 vaccine brought back uncomfortable associations with Gerald Ford’s ill-starred vaccination effort of 1976. The media sought out physicians to discuss the pros and cons of vaccination. In St. Louis, a weekly paper called the Ladue News interviewed a local pediatrician for his opinion on vaccination. He was quoted as saying, “I tell parents that there is absolutely no data to support [a vaccine-autism link, and failure to vaccinate children is] foolish and dangerous. Immunization is safe and effective with minimal minor side effects. There is a small but real chance of complications, including fatal complications, with both the chicken pox vaccine, which can lead to pneumonia, encephalitis and hepatitis, and the influenza vaccine, which can develop into pneumonia or other secondary bacterial infections.”21
And Dr. Paul Offit, an infectious disease specialist at the Children’s Hospital of Philadelphia, and one of the developers of a rotavirus vaccine, begins his book Deadly Choices: How the Anti-Vaccine Movement Threatens Us All with, “There’s a war going on out there… On one side are parents… On the other side are doctors… Caught in the middle are children.” 22
On the other hand, Wakefield says, “What happens to me doesn’t matter. What happens to these children does matter.”20 And Jenny McCarthy, actress, anti-vaccination stalwart, and president of Generation Rescue, writes on their website’s home page, “In profound solidarity with all the families still struggling, I decided to speak up. I wanted to give voice to options too often unspoken, and share hope for victories within reach. My family was given gifts that I wanted to share. Whether you’re in need at 3:00 p.m. or 3:00 a.m., you have come to the right place. We are here for you, together resolving our heartaches and celebrating our victories.”23
We in the medical community must acknowledge that, for parents, the idea of allowing their child to be injected with an agent that might cause harm and will definitely cause pain is, at the very least, unsettling to even the most educated, most rational parent. The genius of the anti-vaccine forces is that they are passionately empathetic toward parents who want only to protect their kids – and they are not shy about the sacrifices that they have personally made in standing up to uncaring physicians and greedy pharmaceutical companies.
And how do we respond? Often with a well-reasoned, evidence-based argument that dismisses vaccination concerns as unfounded and uninformed. If we do express emotion about vaccination, it often comes across as either as anger at parents who just do not care enough to do what is best for their children or annoyance on our part for having to waste our time with such nonsense.
As physicians, we do have our own stories and narratives, and we can use them to counter the fear mongering of the vaccine deniers. We can tell of the sweat on our brow as we intubated a kid just seconds before her windpipe was sealed shut by hemophilus infection, or of the dread in our heart as we saw milky spinal fluid drip out of a lumbar puncture needle in a baby with pneumococcal infection, or of the mother who said she would never forgive herself if her child did not live because she listened to her chiropractor and did not have her baby immunized.
The science is clearly, unequivocally, powerfully on our side when it comes to the safety and effectiveness of vaccination, and we must share this information which is at the core of our efforts to prevent disease in children. But we have to remember that parents make decisions about their kids, not from the head, but from the heart.
In 1710 Jonathan Swift wrote “Falsehood flies and the truth comes limping after; so that when men come to be undeceived, it is too late: the jest is over and the tale has had its effect.”
As such, we cannot be reticent to use our stories to let parents know that we do this work, that we vaccinate children because, as Andrew Wakefield himself said, “one more case of this is too many.” But in our case, “this” refers not to a self-serving fiction, but to pertussis, epiglottitis, and meningitis, to kids being devastated or killed by diseases that are completely preventable, to parents facing their fears with us beside them to give their children a better future.
Healing is about more than prescribing and instructing. It is also about listening, about saying that physicians were wrong to blame parents when we had no other explanation for autism, and sometimes just sitting in silence as we let parents know that it is okay if they are afraid and that we will walk through that fear with them.
As they were getting ready to go home from the hospital after five sleepless, nerve-wracking nights, the mother of the three-month-old girl with pertussis told the clinic med attending that, if he wanted to tell people about how sick her daughter was and what she and their entire family went through to help convince other parents to vaccinate their kids on time, it might give some meaning to their ordeal.
“Dr. Haller,” she said, “I don’t ever want any other family to have to suffer what we went through.”