March 12th, 2007 at 8:43 pm
This happens to be post #1000. Woohoo!
On March 6 Senate Bill 98 was introduced in the Ohio General Assembly. The measure would take $500,000 from fiscal year 2008 and $300,000 from fiscal year 2009 of the General Revenue Fund and establish a pilot program in the Ohio Department of Health for education, standards promotion, and coordination of services “to facilitate the effective, timely treatment of children diagnosed with autism spectrum disorders.”
U.S. Senate Resolution 78, currently on the legislative calendar, would designate April 2007 as National Autism Awareness Month and supports increased federal funding for aggressive research. On December 19 President Bush signed the Combating Autism Act of 2006, with an initial cost estimate of $860 million.
The emergence of autism as a public health care concern is somewhat fascinating. Several states have passed laws making it illegal for insurance companies to discriminate against autism-related service requests, such as listening therapies, occupational and speech therapies, Applied Behavior Analysis, and supplements. New Jersey’s activist judges didn’t wait around, legislating from the bench.
With 1.5 million the newest estimate of potential autism patients in the United States, a question comes up with regards to funding and legislation: Do we break the insurance companies, or do we break the government? State governments can be broken; the federal government will simply print money until yours is worthless.
Sure, I’m a dad with a daughter diagnosed with ASD, but I am also a citizen of the state of Ohio and of the United States of America. In the secular realm we do not break civilian responsibility to meet our responsibility as parents. Even if your child is starving, you do not murder someone else to feed your child. You would also not sell off your kid to pay your taxes (more heinous examples I can think of involve children ratting out their parents to Nazi or Soviet governments). We have to meet the conditions of both of our areas of responsibility.
Without federal aid Thomas Edison experimented with thousands of filaments for his light bulb, and his light bulb research also gave birth to the parallel circuit, safety fuses, light switches, and voltage regulators. The discoveries made him rich and famous. Asked to name a rich and famous inventor today, you would be lucky if Dean Kamen came to your mind. The unnatural abundance of research dollars spreads research all over the place without much thought of commercialization. Research is done at public universities who then get lucky when a patent becomes marketable. This broad spending leads to wacky and wasteful research. Let’s pump mice full of saccharin and see if they get cancer. Let’s bet the farm on hydrogen cars and ethanol research, and then turn around and raise farm subsidies because feeding pigs just got more expensive. Oh, and did we decide whether or not eggs are bad for us yet?
I am curious how much federal research would have been spent in pursuit of the light bulb. Perhaps we’d be running direct current today.
Research within the private sector pits greedy capable people against each other to see who can come up with the best solutions and make the most money. Research within the public sector places the government in competition with nobody. We get pronouncements that materials are “safe” for mandatory consumption until proven otherwise, as in the case of vaccines.
We are increasingly conditioned to think that federal research is the best way to solve problems, without harnessing the imagination and competition found in the private sector. What medical company wouldn’t bend over backwards to gain 1.5 million customers with an autism treatment? Did Merck came up with an HPV vaccine at the behest of the government? What about Pfizer and Viagra? Merck and Pfizer are rich because they perceived demand and met it. Federal dollars for research actually increases the risk that private industry won’t make money on the research dollars they spend. That’s a powerful disincentive.
Today in the private sector my family is trying out multiple things with our daughter: several dietary supplements, chelation to remove mercury from a potentially hypersensitive physiology, organic foods that are low in gluten or casein, and glutathione which removes metabolic waste. This is in addition to speech therapy and occupational therapy. Would all this be done if we waited for the federal government to research and find the answer for us? No.
Should all of this stuff be as expensive as it is, so much so that we have yet to afford Applied Behavioral Analysis therapy? This may sound crazy, but probably! We need to observe the effects of these treatments on our daughter and see which are verifiably good for her. If everything were cheap we would have the natural inclination to throw everything at her. We have already rejected one treatment that really made her moods swing (DMG). Money is tight, and maybe we need to back some of this stuff off so that we can afford ABA. ABA has been documented to show results, even if participants are said to be “robotic.”
In addition to the federal subsidies for research, lawmakers are now looking at forcing insurance companies to cover autism treatments. This seems weird, because insurance is a guard against risk. Insurance companies turn down all sorts of requests because of preexisting conditions. If you buy insurance that covers cancer treatments, you run a financial risk if you don’t get cancer. If you had cancer and bought insurance that covers these treatments, the insurance company runs a huge risk unless you’re in complete remission. When it comes to ASD or most disorders, the insurance company runs a 100% risk because few people with ASD are going to turn down ASD treatments. The insurance company has two options: raise premiums for everyone to pay for the treatments, or go out of business. Operating at a loss is only an option for the federal government.
Even though it seems my family would directly benefit from federal and state dollars going to autism research and from the forcing of insurance companies to cover ASD therapies, our advocacy of such things cannot be a slam dunk. The consequences can be quite the opposite of what was originally intended. We have to be very careful about what we want our government, paid for by us, to be doing.

March 13th, 2007 at 4:00 pm
At least you practice what you preach! I was interested to see where you were going with this.
March 14th, 2007 at 2:28 pm
The reason autism is being legislated is the discrimination factor not the “fair market” factor. If your child is diagnosed with leukemia, you know your insurance company will pay for the chemotherapy. If your child has a heart condition, you know your insurance company will pay for her surgery or treatment. Your child gets diagnosed with autism - the medical insurance says oh sorry it is a psychological condition we can’t pay and then your mental health benefits say oh sorry it is a medical condition with psychological symptoms your medical insurance needs to pay. And then you go through an appeal process with even more people and you find out that nobody covers it because it has both medical and psychological components, so nobody really wants to cover it.
But really the biggest issue is that is expensive. No more expensive than heart surgery or leukemia treatment except that your kid is going to live and continue to need treatment and maybe they can stop paying for the other kids that die of the heart issues and the leukemia. So do the bills need to be introduced absolutely - the bill that says if insurance is covering your kids leukemia than by golly they can cover my kids disease (autism) too. I paid the same premiums that the leukemia patient’s parents did.
And you know what else is part of the fairness factor - the share of the research dollars. NIH has a budget (now you can believe that the private sector might be a better place for research, but the NIH is going to have research money). The most current breakdown is as follows:
HOW DOES FUNDING FOR AUTISM COMPARE TO OTHER CHILDHOOD DISORDERS & DISEASES?
* a. Leukemia 1 in 25,000 Funding: $300 million
* b. Muscular Dystrophy 1 in 20,000 Funding: $160 million
* c. Cystic Fibrosis 1 in 5000 Funding: $75 million
* d. Juvenile Diabetes 1 in 500 Funding: $140 million
* e. Autism 1 in 166 Funding: $15 million
And now they have raised the autism numbers to 1 in 150, so the ratio is that much worse.
March 14th, 2007 at 4:58 pm
The runaround we get with mental vs. medical insurance is a distraction by the insurance companies from the real question: when we entered into a contract to purchase insurance, were they agreeing to cover autism? If not, then we are forcing contract changes across the board, and we are subjecting the free contract of two consenting parties to tyranny. If they did agree, then the insurance company is in breach. Depending on the legislation that is being worked on, our flip-flopping insurance issues may not even be fixed then.
Fairness issues can be argued: should we be paying with our tax dollars for leukemia, MD, CF, and juvenile diabetes research that we don’t benefit from? Maybe we want to take our share of those tax dollars and put it into ASD, but we don’t get that choice. Do we want to force people suffering from those conditions to pay for autism?
Also, should we not instead be able to give that money directly to people researching the issues instead of letting the government get its cut first? Charities have a much better record than government in making sure the money they receive is well spent.