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.