By Dr. W. Gifford Jones
November 5, 2000
Can you imagine suffering a painful disease day after day?Knowing there was a treatment available to ease the agony, but denied relief due to the cost? This week, the story of four peoplewith different diseases, but who all face the same problem,"debilitating spasm". Technology could ease their suffering.
John's life at age 20 changed in a split second. One moment he was mobile, the next paralysed, and destined to spend his life ina wheelchair. All because he jumped off a railing into three feet of snow breaking his neck.
Being paralysed was one problem. But he also developed severe spasms. On his first day back at school a contraction was so severe it threw him out of his wheelchair.
Henry, a 24 year old, had lived with cerebral palsy from childhood. Initially leg stiffness made it difficult to change his diapers. But over the years rigidity increased affecting his arms,as well.
At three years of age he began the first of 14 annual operations. These surgeries were done to relieve muscle contractures caused by spasticity.
Surgery brought little relief. He could still do little for himself. Each morning he had to sit for 20 minutes on the bed to allow his muscles to loosen up. But it required another hour and half to get dressed, even with the help of parents.
Julie developed multiple sclerosis at age 34. In her case spasticity caused the most trouble. Sometimes when sitting her legs would automatically straighten out in front of her. And the seepisodes of spasticity could last for days.
Another patient, George, sustained severe brain injury when his car struck a tree. It left him with uncontrollable spasms.Often while bathing, spasms caused his foot to kick up gnashing his toes on the faucet. Or a contracture would toss him off the toilet.
In the past patients such as these have been given a variety of oral anti-spasmatic medications. But these drugs often caused drowsiness, confusion and hallucinations.
Now the spasms of many of these patients can be controlled by the Metronic Implantable Drug Pump.
Surgeons insert the pump under the abdominal skin. It's then connected to a thin, flexible catheter that delivers medicationdirectly to the intrathecal space. This is the area surrounding the spinal cord.
Since the drug is delivered intrathecally a smaller dose is required causing fewer side effects. The pump is refilled by a nurse every four to six weeks.
Relieved of spasm, patients can lead a more normal life. Some can walk without a cane. Others can drive a car and socialize with friends. And getting dressed only takes five minutes.
But there's a problem both in Canada and the U.S. In the U.S.many insurance companies will not pay for the $8,000 pump. In Canada, the pump and its medication have been approved by the Health Protection Branch. But due to decreased hospital budgets few pumps can be purchased.
In fact, the Canadian Health Care System is so asinine that even wealthy patients are prohibited from buying their own pumps.Why? Because Canada insists on universal health care!
There's another aspect that doesn't make sense. Those suffering from spasticity are high maintenance patients. Many are in chronic care facilities, each one costing up to $100,000 a year.An $,8,000 pump can often return these people to a productive life.And when you consider the implantable life of the pump the device costs less than $1,500 a year!
So what can be done to correct this problem? It's the old story that the squeaky wheel gets the grease. So I believe it's the duty of this columnist and others to bring this matter to the attention of corporations and governments. To educate the publicand bureaucrats on cost effective technology available today butfoolishly prohibited.
Talking about the future is fine. We hear frequently about thewonderful things science will bring to mankind years from now. Butit's the present that counts if you suffer from the agony ofspastic contractures. This new technology must not be allowed tocollect dust.
In the meantime what a valuable project for service clubs andother organizations. What a wonderful gift to hand the victims of spasticity. To watch their suffering end and see them return to a more meaningful and productive life. You couldn't come up with a better Christmas present.
W. Gifford-Jones M.D is the pen name of Dr. Ken Walker graduate of Harvard. Dr. Walker's website is: Docgiff.com
My book, �90 + How I Got There� can be obtained by sending $19.95 to:
Giff Holdings, 525 Balliol St, Unit # 6,Toronto, Ontario, M4S 1E1
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