Commentary – March 2011
Tex Med. 2011;107(3):35-36.
By Steve Levine
Vice President, TMA Communications
In nearly 14 years as publisher of this fine magazine, I've avoided the temptation to use it as a soapbox for my personal opinions. After all, Texas Medicine belongs to the physicians of Texas. As they say here in the TMA building, we're just the ranch hands.
But the Andrew Wakefield controversy lies at the intersection of my personal and professional lives. The latest chapter finally pulled me over the edge.
As the leader of TMA's Communication Division, my responsibilities include promoting the fact that physicians rely on science – good, hard, peer-reviewed science – to make medical decisions. As well, my group is responsible for the Be Wise-ImmunizeSM program. We endorse immunizations as safe and effective public health tools that save lives. We publicize the repeated scientific findings that find no relationship between immunizations and autism.
Like other medical organizations around the world, TMA has spent far too much time and effort combating Dr. Wakefield's fraudulent "research findings." His well-publicized but poorly documented study linked the measles-mumps-rubella (MMR) vaccine to a new pathology he called "autistic enterocolitis."
Frightened that "the triple jab" would impose the horrors of autism on their normal toddlers, parents first in Britain, then around the globe, began refusing the MMR vaccine. Then all childhood vaccinations became circumspect. As Associate Editor Crystal Conde explains in this month's issue of Texas Medicine, the result has been a resurgence of infectious diseases we once had on the run. Polio is back in Asia, and we have an epidemic of pertussis here in the Austin metropolitan area.
This irrational response to irrational fear is not the only public health victim of Dr. Wakefield's study. The scientific research community, including many government-funded studies, has spent millions of dollars trying to replicate or repudiate his findings. Those millions could have been much better spent on finding new therapies or on furthering the promising research into other causes of autism. How many thousands of children could have been spared if scientists hadn't been forced to follow Dr. Wakefield down his deceptive rabbit hole?
That's my professional role. As a father, I have a very different perspective. My three children include a 21-year-old son with severe autism. Thankfully, he has a very good job. But he never learned to speak, and his disability will significantly limit him for the rest of his life.
Like most other parents of people with autism, I desperately want someone or something to blame for what's happened to my son. I think "desperately" is the operative word.
Autism has no cure. There is little that medical or behavioral science can offer other than intensive, individualized education. That works, but it's hard work. We've run an applied behavior analysis (ABA) program for our son for 15 years. He's made tremendous progress (did I say he has a job?), but he still has autism.
For some parents, that prognosis is just too much to accept. They are desperate for a miracle. They desperately want a villain to blame.
As King Claudius said to Rosencrantz in Hamlet, "Diseases desperate grown, by desperate appliance are relieved, or not at all."
And that's the real tragedy of what the British Medical Journal called Dr. Wakefield's "deliberate fraud." It added a layer of "did I do this to my own kid by giving him that shot" paranoia to parents already ridden with guilt. And it opened the door for desperate parents to seek those desperate appliances.
Since my son was diagnosed with autism, I've seen and heard about so many desperate interventions for the disease. I've seen the rise and fall of facilitated communication, which claimed to unlock autistic brains through the power of the keyboard. I've seen Irlen lenses, which claim to rearrange incoming visual signals through the use of rose-colored glasses. I've seen the Electronic Auditory Stimulation Effect, I've seen severely restrictive diets, and I've seen dozens of biomedical cures that supposedly detoxify the blood of people with autism.
In a few cases, I've become very angry at physicians who traded on these parents' desperation by prescribing very expensive quack cures like secretin injections. And so many parents I know have spent thousands having their sons and daughters' hair and blood analyzed for so-called microtoxins and rare minerals imbalances.
Assuming that most of these interventions – with the exception of chelation therapy – cause no damage, you might ask, "Where's the harm?" Just look at the time and money – the children's precious time and the parents' hard-earned money – down the rat hole.
Every month wasted on these unproven, or disproven, treatments is a month of delayed ABA or other structured intervention. Every dollar wasted on these unproven treatments is a dollar that could have been spent on teachers or speech therapists who could help turn these children's lives around.
I've met and spoken with Dr. Andy Wakefield. He's a personable, charismatic man. I can see how desperate parents would fall easily for this pied piper. I'd like to think he didn't intentionally cause so much damage.
Like so many others with autism, my son has a hard time discerning intent. But he can see consequences. So can I.