Where Is the Evidence for Autism Patient Care?

Paul Corby

I have been seeing posts around the blogosphere recently about Paul Corby, a young man with a congenital and deadly heart defect, who has been denied a heart transplant. There is a short list of reasons for denial, and number 2 on the list is ... Autism (link to story).

Quite frankly, I don't understand this. Why would Autism be considered a medical reason to deny a life-saving procedure? The rejection letter (that has been posted) provides absolutely no details or references scientific evidence why Autism is a contraindication for a major organ transplant.

A contraindication, by the way, is a condition or factor that may increase the risks of a medical procedure. Contraindications are absolute (as with proven dangerous results) or relative (where the results of the procedure are usually too complicated by said condition to be truly effective). I can't find a definition of all this quickly, by the way, I had too look through dictionary websites and a quick Google search with "Autism as a Contraindication" filter.

The closest thing I could find in my quickie online search was that some medicines used to treat anxiety and aggression are contraindicated in Autism patients with heart conditions (link to source).

So, without knowing all the facts, and being Jane Public (mom of a child on the spectrum), I am left with the impression that the doctors really don't know how Mr. Corby's Autism would impact the effectiveness of a heart transplant. They list instead complications of the complex procedures (which, I am pretty certain all heart transplant patients face) and "unknown and unpredicatable effects" of steroids on Mr. Corby.  Well, not being able to pump 80% of your heat's blood back out into your body is kind of a huge complication already and it predictably leads to reduced quality of life and a very short life span.

It sounds to me as though they'd rather not deal with all those unknown issues and complications.

It reminds me of hearing about how doctors initially recommended hospice instead of surgery for my grandmother, who at age 80, had a pretty advanced case of colon cancer. Part of their recommendation was tied to her age, and their experience that older patients in her stage either did not survive the operation or did not live long after.  They did, however, listen to her family and agree to try the surgery. Well, by day 2, that lady was walking the floor with her IV pole, doing laps. She had contests with her adult grandchildren to see who could blow her balls higher in her Mediciser and joking with the nurses. The surgeons later told the family she changed their perception of elder care and surgery recommendations.

It reminds me of how I've had to advocate for my son several times in a medical environment - precisely because (1) there is so little evidence out there on how to diagnose and treat patient on the Autism Spectrum and (2) Autism presents so uniquely.

We don't know much about Autism -- it's causes and effects on our lives. Many of us have had incomplete or incorrect medical recommendations for ourselves or loved ones. The only way to prepare our medical communities for the coming wave of diagnosed adults on the Autism spectrum is to start creating Evidence-Based Medical Practices and Guidelines for Autism patients NOW.

If you want to do more, there is an online petition being circulated online to Penn Cardiac Care at Radnor to put Mr. Corby on their transplant list -- please review and sign if you support this cause.

If you are an Autism parent -- keep advocating! Get second opinions. Support each other and help our communities to, in turn, support our kids on the spectrum. My thoughts and prayers are with Paul Corby and his family. I can only imagine the frustration and stress they must be going through. It is my hope that he and his family receive the services needed at either the Mayo Clinic, where they are seeking a second opinion, or Penn Cardiac Care.

(Thanks to Shelley at unlocking doors for her informative post on this.)

Who Really Pays?

I read this online article,entitled HMO Autism Services Drive Up Costs, and while the author raises some good questions and things to ponder, I have problems with his thinking.

My biggest sticking point is that no one knows what is causing autism, or why the number of children diagnosed has raised so drastically over just a few short years. Until this cause has been identified, how can anyone presume to know the methods for treating it effectively or preventing its cause?

From reading the article, I get the impression that the author is telling people that HMOs already cover any medical issues related to autism, and that "extensive educational and behavioral services for autistic children" should continue to not be covered because they are not medically related. How can he say this if we truly don't know the cause for autism, let alone effective ways to cope with it? And from personal experience, I can say that my HMO does not cover all medical costs associated with autism; I also resent reading the sentence "Families of autistic children will find ways to get covered by HMOs." No, they won't. Especially if they are already overwhelmed with trying to keep their families afloat with one (or more) less jobs and rising tax rates.

What if the cause for some cases of autism are the result of reactions to something in the environment, like asbestos or second-hand smoke? What if we stopped HMO coverage for cancer? And why does this person assume that one policy fits all for everyone affected by autism, because if there's one thing I've learned it's that autism affects everyone differently.

I understand the cause for concern. As the parent of a child on the spectrum, I know how high costs can quickly add up for services such as Occupational Therapy, Speech & Language, and Developmental Services. I have seen other families struggle with pure medical costs and additional health issues. Just imagine those costs going "cha-ching" every 20 seconds (the rate a child is diagnosed with autism) to an HMO CFO.

Mr Enthoven is concerned that "these burdens will not be spread evenly in California." Very true. How about we all try working together instead of pointing the finger at someone else and say "No, you pay for it"?

I think were all pretty hurting from our current and future economic outlook, especially here in California. I think working families are being made to bail out plenty corporations and bad planning from their governments. Speaking as a working class mom with a special needs child, I think we need some help for our children who are affected by something that is still being figured out. This is not only our future, it is our childrens' as well. Please don't make them pay for our bad behaviour and unwillingness to work together.