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Tech Helps Healthcare Fail a Sick Child

This article is more than 10 years old.

We're a culture in love with technology. We've got tech in every nook of out lives -- in fact, we even have Nooks in the nooks of our lives.

And there's one area, in particular, where technology has caused huge change: Medicine ... but not for the better. According to the Hastings Center "Bioethics Briefing Book"

Health care costs are increasing at an annual rate of 7% a year ... New or increased use of medical technology contributes 40–50% to annual cost increases, and controlling this technology is the most important factor in reducing them.

One of the results of medicine's technology-driven cost inflation is the huge increase in health insurance premiums as I'm sure you know well from personal experience. A Time magazine article quantified the increasing costs:

Over the last 10 years, family premiums have risen by 113%—exponentially faster than workers’ wages and inflation.

Not surprisingly as a consequence of these vastly increased medical costs, many people go bankrupt when they get sick. According to a study published in The American Journal of Medicine:

Using a conservative definition, 62.1% of all bankruptcies in 2007 were medical; 92% of these medical debtors had medical debts over $5000, or 10% of pretax family income. The rest met criteria for medical bankruptcy because they had lost significant income due to illness or mortgaged a home to pay medical bills. Most medical debtors were well educated, owned homes, and had middle-class occupations. Three quarters had health insurance. Using identical definitions in 2001 and 2007, the share of bankruptcies attributable to medical problems rose by 49.6%. In logistic regression analysis controlling for demographic factors, the odds that a bankruptcy had a medical cause was 2.38-fold higher in 2007 than in 2001.

Given these conditions, it's not surprising that many Americans are deferring medical procedures, not buying prescribed medications or taking lower doses to stretch out costs, or simply foregoing health insurance altogether. And every year, some 45,000 Americans die from lack of health insurance.

You might, if you're hard up, defer your own healthcare but what are you going to do if your child should have a serious health crisis and you're not a member of the 1%?

Even with insurance it's bad enough having to deal with the enormous costs of things like broken legs and concussions but when your child has medical issues that don't fit the insurance companies' criteria or, for that matter, don't fit the pigeon holes of medical practitioners, it turns a crisis into a nightmare .

This is what happened to my friend, Bobbie Shufani. Her daughter, Gaberila, has suffered from epilepsy since she was a teenager (she's now 23). While there are drug regimens for this condition it turns out that Gaberila is, unfortunately, a one-in-a-million patient who has a bad reaction to anti-epilepsy drugs.

Actually, "bad reaction" is a huge understatement. The drugs actually made Gaberila psychotic and, shockingly, the medical establishment was apparently not interested in getting to grips with her case:

[The doctors] had conferred and decided that Gaberila was suffering from psychosis with no known cause. They further decided that they would start the finger pointing. Dr. [X] deferred to Neurology regarding the possibility that the antiepilepsy drugs could be responsible. Dr. [Y] decided that based on one clean 30 minute EEG that Gaberila did not have intractable epilepsy and he would therefore not take her on as a client. So, we had come to the hospital where the neurologist, Dr. [Y]’s partner, had assured me that they would work hand in hand with psychiatry to determine if the medication was the cause of Gaberila's psychosis yet they completely dismissed themselves from her case within the first 48 hours, and a single 30 minute EEG. This, despite my efforts to get a new neurologist to help, left Gaberila to be treated only as a behavioral health case.

The quote above is from a book that Bobbie is writing about their ordeal as they ricocheted from one crisis to another with the very real possibility that Gaberila could wind up homeless or even dead.

There was a brief period of respite last year when Gaberila went on a low carbohydrate diet which, interestingly, has been a traditional treatment for epilepsy in children. This diet worked so well  the seizures had apparently stopped and Gaberila was not only off medication, she was even starting to lead a normal life.

Unfortunately Gaberila started eating carbs again and the seizures returned with a vengence so, in October last year, Gaberila was put on an emergency dose of anti-epilepsy drugs. Once agin, she had a bad reaction but this time it was a complete psychotic break. Gaberila was put on her first mandatory psych hold and she has since wound up at the Sanctuary Psychiatric Centers of Santa Barbara.

Their ordeal is by no means over yet because while Bobbie has found what she hopes will be a workable therapy plan for Gaberila --  it involves the modified Atkins diet with minimal medication and should allow Gaberila to eventually lead a normal life -- their insurance company, surprise, won't cover most of the costs which will exceed $100,000 over the next year. In fact, Bobbie's bill currently stands at around $65,000 and her first check from the insurance company arrived in February ... for $142.50.

Needless to say, as a single parent and working mother, Bobbie hasn't got that kind of money and, sadly, the ordeal so far has wiped her out financially.

When Bobbie finishes her book, you'll be able to read about something no parent ever wants to experience and, if you or a loved one is going through anything similar, Bobbie's experiences and research into epilepsy treatments and dealing with the medical world and insurance companies will be invaluable.

In the meantime, Bobbie's still struggling with a medical system that has, in the main, failed both her and Gaberila miserably. While it may take some time to fix the attitude of some doctors when it comes to patients who don't fit their pigeonholes, fixing the healthcare cost problems has an obvious solution ... if there was ever an argument for single payer healthcare, this is a great example.

If you'd like to help the Shufanis financially, a fund-raising campaign has been started on Indiegogo and your donations will be gratefully received.

You can also call Bobbie Shufani on (805) 320-7939 or email her at bobbieshufani@gibbs.com.