Wednesday, March 19, 2008

Autistic Politics

Autism is a real disease. Its prevalence in the United States and other Western nations is increasing. It causes suffering for many parents and children each year. I do not intend in this post to downgrade the significance of autism in society today. I wish to use autism as an example of the wrong way health policy is made in our country.

In reviewing the candidates' health care plans, I noticed that two of them make specific prominent mention of one disease: Autism. McCain says on his website,
As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential.
He also has an entire policy platform built on autism which you can read here. I noticed that autism is the only disease he specifically mentions in his health platform. Basically he argues that federal money needs to be spent on learning about and combating autism. Pretty harmless, right? I'll get back to McCain in a minute. Obama has also pledged support of autism research. He says he will:
Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.
I like this statement better. Instead of just spending money on research, he recognizes that the autism epidemic can be attributed to "broadened diagnostic criteria." Rather than to promise cures and treatments, he suggests "we can do more to help autistic Americans and their families understand and live with autism." Oh yeah, he also supports spending a billion dollars on autism research.

I couldn't find Clinton's position in her health policy material, but I bet she supports autism research...

Why is this physician scientist concerned about political leaders' pledges to fund research for a specific disease like autism? The physician in me sees hundreds of other disease that aren't adequately studies that cause pain and suffering to millions of people. The scientist in me imagines thousands of questions about the natural world (answers to which invariably contribute to tomorrow's medicines) that remain unanswered. There is only a limited pool of cash that researchers draw from every year. Why does autism get such a big chunk???

The answer is (drum roll pleas...) patient advocacy groups. Using the most sophisticated research tools available to me (Dr. Google), I found the Autism Society of America, Autism Speaks, Unlocking Autism, the National Autism Association, and many more. Almost all of these sites pledge to support research, make a difference in Washington and provide information about vaccines. And this is where McCain comes back into the picture. At the end of February, McCain's response to a question from a mother of a boy with autism was,
"It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines." He added that there’s "divided scientific opinion" on the matter, with "many on the other side that are credible scientists that are saying that’s not the cause of it."
What's wrong with this? Plenty of other people will tell you what's wrong with this. The upshot is that he is using language of the controversy to lend scientific credibility to an idea that is not scientific. It is therefore ironic that McCain wants to
dedicate federal research on the basis of sound science resulting in greater focus on care and cure of chronic disease.
Sound science. That's a good name for a nerd rock band.

So why is the autism lobby bad for health care policy in America? The first reason is that it puts contingencies on basic science funding. The second is that American health policy is so inept at keeping Americans healthy that we cannot even treat diseases we know how to cure. Your best chance at staying healthy is to be rich. While autism is a disease that affects many social and economic classes, its the rich parents that are driving the emphasis on a national autism program. I believe that disease advocacy groups should focus their resources on identifying worthwhile recipients for research funding. The Feds have much bigger fish to fry if the United States is to develop a health care system that affords access to all Americans.

In the end, autism is an important disease that should have access to national resources. But what I hear is "Vaccines cause autism" (which is not a scientific claim) and "We need more money for scientific research on autism." Autism advocates can't have it both ways.

Do you want to vote for health in 2008? Read my other posts about presidential health policy.


Wrong Planet said...

Hillary's Autism plan is almost as bad as Mccain's. She refers to Autism as an epidemic which is not only demeaning to those of us with Autism, but is also inaccurate from a scientific and anthropological standpoint.

Judith said...

Thanks for shedding light on such an important topic. I attended my first meeting of the Interagency Autism Coordinating Committee last week. (They are a group of individuals representating both the federal government as well as members from the public...) This committee is charged with directing autism research funding as provided by the Combating Autism Act.

So far they're off to an extremely shakey start.... I suppose I shouldn't be surprised. :(

Anonymous said...

Granted, I've done exactly no research into the candidates' proposed Autism policy, but the McCain and Obama statements as given don't seem to be that altogether different at first glance. Both support research for improved treatment and both pledge support to Autistic individuals (both focus on children). Perhaps I'm missing something. I'll be the first to admit it if so.

To be sure, McCain should not be insinuating that vaccines are linked to the increase in Autism without conclusive evidence. How irresponsible. Obama goes into much more detail and seems to have a familiarity with the disease; he surely comes off as being more sympathetic. What I consider the most interesting and thought-provoking aspect of the original post, is the potential reason for the focus on Autism in the first place. The skeptic in me figures that both parties are guilty. Not to minimize Autism in any way, shape, or form, but what about everyone else who is unfortunate enough to not have an advocate...or four.

Anonymous said...

I bet when polio was an epidemic, somebody said “but there are other causes that aren’t getting attention, so why are we giving polio such special attention?” As the parent of a child with Autism, I can assure you that much more can be done to help the children and the families of children of Autism. Unlike a medical condition like cancer or diabetes, Autism cannot be cured with medical therapy or managed with insulin pumps. Despite the fact that the rate of diagnosis for ASD exceeds child cancer and is nearly the same as juvenile diabetes, public awareness and funding for treatment and research is much less than either of these conditions. The financial and emotional burden of a child with ASD is difficult to understand until you live this life. The long term impact to our school and welfare systems will also feel the impact as we do little to help these children be more self-sufficient toward adult life. Of all the ways our government miss-manages spending, I find it hard to believe that you are actually using Autism as a platform for attacking candidates pledges to do something about this problem affecting to many people. By the way, I agree that there is not sufficient scientific data to prove that vaccines have a direct correlation to Autism, but there is not sufficient data to prove that it does not, either. If 40 years ago, you believed that lead in paint, or asbestos in buildings was dangerous and somebody told you that there was not any scientific evidence to prove it was dangerous, would that answer dispel your concerns?