Friday, January 27, 2012

Who Among Us is Worthy?

As the sister in law of a 50ish year old man with autism, I have to say something about a recent event.  A little background first.

I know someone who, when a boy, was helped tremendously by Children's Hospital of Philadelphia (CHOP).  He had an illness that stumped doctors in this area.  His health failing, he was brought to CHOP and they were able to diagnose his illness.  He received treatment.  He recovered.

He was worthy.  Our medical system worked for him.  He is an adult today.

And then, there is the case of little Amelia Rivera, who was recently refused a kidney transplant by CHOP because...well, she suffered from Wolf-Hirschhorn Syndrome, a genetic disorder that causes many difficulties for those with it, including intellectual disability.  Finding a donor was not a problem (as it is in too many cases of kidney transplant.)  CHOP refused to do the transplant because she was

After the mother went public on a support site, the story went viral.  In all fairness, we probably do not know the whole story.  But, in reading some articles, and comments, and lurking around on CHOP's Facebook page, it would appear that this kind of medical decision is not an isolated instance.  From what I can tell, CHOP is rethinking their processes, and are continuing dialog with little Mia's family.

Not that long ago I blogged about nostalgia not being all it's cracked up to be.  My father had epilepsy due to a brain injury he suffered in his service during World War II.  There was little nostalgia associated with the prejudice he suffered when he came back home.  In fact, in some states, I would not have been born because he might have been subject to involuntary sterilization. our modern day and age people with disabilities are still being denied medical care. Their lives just aren't as valuable as yours or mine.

So what will happen when my brother in law needs medical treatment? Thank heavens that day has not yet come. But will he be deemed worthy?  Until recently, insurance discrimination against people with autism was very much a problem, and it is only slowly being addressed by state laws prohibiting such discrimination.  Do we need legislation to prevent medical discrimination in care, too?

Some have written a lot more elegantly than me on the issue of the worthiness of Amelia to get this transplant.  I invite you, in particular, to read this.

If we say we value life, it has to be all life-not just the lives of the smart, the lives of the wealthy, the lives of the beautiful.  Our medical system is broken, for this and other reasons.  We all have stories to tell from our own experience. Medical bills we can't afford, insurance that won't pay, not having insurance and suffering the consequences.  And now....we'd better not be disabled, either.

We must fix it, for many reasons, including the most selfish reason of all.  One day that person being denied care may be - you.  Or me.

May Amelia's case have a good resolution.

1 comment:

  1. Thank you for blogging about this!! We've been studying in American history about our shameful past in this area. The value of life is such a controversy when it should be an inalienable right!

    My heart breaks over stories like this but I continue to pray (and exercise my rights as a citizen to voice my opinions) that we will become a country that values ALL life.

    Thanks again.


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