Thursday, April 13, 2006

Responses From Around the Country

From the Schafer Autism Report

"Because It's Too Expensive"
By Mary Tiesenga

When I read recently about an insurance industry lobbyist in South Carolina stating, as the rationale for denying behavioral therapy coverage for autism, "because it's too expensive", I was simply stunned.

The arguments that insurance companies have been using forever and a day to deny coverage are, alternatively, that behavioral therapy is "educational" in nature, "provided by law by public school systems", or "experimental". But expensive? Since when has that been a valid reason for denying coverage of an efficacious treatment for a severe medical issue?

Every major medical condition is expensive to treat! Every one. Cancer, AIDs, diabetes, MS, autoimmune disorders, heart disease, Alzheimer's, trauma care, multiple organ failure--you name it.

Last year, my physician-father fell on the ice walking into a hospital where he was to perform surgery. He broke his hip and elbow-badly-and ended up in surgery himself, with complications, and then more complications. He ended up in intensive care for an extended period of time, and then in a rehab hospital for another lengthy stint. In two months my father's care managed to gobble up the same amount of money that it cost our family for over 3 years of intensive 1:1 ABA therapy for my now previously-autistic son.

Who paid for my father's care? I did. You did. And both you and I pay for every major medical problem through our taxes and health insurance premiums. We pay for cousin Julia's breast cancer surgery and chemo, Aunt Elsie's kidney transplant, our neighbor's trauma surgery after the head-on collision, and the endless succession of new pharmaceutical agents used to treat nearly every malady known to man-many with Mercedes class price tags and/or of limited efficacy.

A beautiful little girl in our town was diagnosed with an aggressive, late stage cancer a few years back. She was not taken to just one world-class cancer center, but three, with the whole town cheering her on.

She was given a grim prognosis, but we all prayed for a miracle anyway, and everyone in our town paid for her care (again, through their medical insurance premiums and tax dollars)--gladly, I might add, with no one questioning for a second how "expensive" it was.

Ahhh, and who paid for my son's care? Did we all help with that too?
Nope. That was all on us -- and inexplicably so. The science behind ABA is now so old and so solid, and both the partial and complete rates of response so impressive, that my drug-developer husband informs me that, if a drug, it would surely be among the greatest "blockbusters" of all time, with reimbursement assured. It is a sad commentary, that in the absence of pharma lobbyists to get the job done, the medical professional organizations such as the AAP and AMA, along with our public health establishment, have not managed to convince the appropriate authorities and organizations to provide coverage for this care.

The result has been beyond tragic, and is multi-dimensional. Families have no choice but to go it alone and are gutted financially. Most don't even come close to providing their child with the amount and quality of therapy associated with good outcomes. The appropriate government and educational infrastructures around training and funding the therapy fail to develop or develop dysfunctionally, resulting in a vast undersupply of therapists, in turn driving prices up and quality down. The physical and emotional stress associated with both running and funding effective programming is crushing and unrelenting. Virtually everyone runs out of money at some point, divorce is rampant, and, most tragically, many children who could have gotten better don't.

What the expense argument is really all about is the effective rationing of healthcare in this country, based on cost. If we've come to the point of needing to ration medical care, fine, let's have an honest discussion about it, because using virtually any criteria upon which to limit care, ABA would land at near the top of the heap of things to cover, not deny. Behavioral therapy is astonishingly effective, and even more astonishingly cost effective. My son, the one they told me to put in an institution, who is now in a regular kindergarten, is living proof. And please, don't tell me he wasn't worth it.


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