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To Members of the Standing Committee on Health:

Re: Hearing on Synthetic Insulin - April 9, 2003

I am attaching a written statement with a request to address the committee orally at the hearing scheduled for April 9, 2003.

In February of this year members of the Society for Diabetic Rights presented you with a great deal of information and history about synthetic insulin and the problems it has, and is, creating for diabetics. I would like to add to their presentation by speaking to you about the impact this drug has had on myself and my family. On June 17, 1996, my son Chris died from what has been coined "dead in bed" syndrome. We had a normal dinner the evening before, he showered, had his late night snack, went to bed at 11:00 p.m. and died approximately 2 hours later according to the autopsy report. The autopsy report claims (a) Immediate Cause of Death - Acute Heart Failure; (b) Due to - Seizure Disorder; (c) Other Significant Medical Causes Contributing to Death - Diabetes.

I look forward to sharing some of Chris' story with you and thank you for your attention to this matter.

Sincerely,

Kathy Ferguson

Submission to the Standing Committee on Health

on the Effects of Synthetic Insulins - April 2003

My name is Kathy Ferguson and I am a member of the Society for Diabetic Rights. I appeared on CBC Marketplace with Colleen Fuller in February 2001. Between us, and at our own expense, we set up a toll free line for diabetics to call us after they had seen the program. For months we were overwhelmed with phone calls from diabetics and family members of diabetics from across Canada. Everyone told variations of the same story on what was happening to them or their family member, and what the drug company, the Canadian Diabetes Association and their physicians said to them. They were not managing their disease properly, there was nothing wrong with this insulin, the effects happening to them were happening to them alone, no one else had reported anything like this."

This was a very painful process for me, sitting alone every night quietly listening to horror stories that mirrored what had happened to my son. It soon became overwhelmingly clear that all the evidence that I had looked at and studied prior to the Marketplace program was affecting a large population of the diabetic community. It also became clear for the first time what had happened to my son. I had spent the first four years after his death blaming myself, not understanding why a perfectly healthy young man had started to deteriorate from a disease that we had managed perfectly since he was a baby. Not a day went by where I didn't ask myself what more could I have done, how could I have let one of my children die? Knowing why he died has not relieved the pain of his death but it has at least given me some answers.

Chris became a diabetic at age 3 1/2, December 1982. I sat by his crib in the hospital, him laying there sleeping, an intravenous tube in the middle of his forehead, and I with my face buried in my hands weeping. I heard this little voice, "What's the problem Mom?" That was Chris. He remained that sweet little boy all throughout his short life. On June 17, 1996, 10 days after his 17th birthday he died. He was originally on animal insulin and was a very stable diabetic. His 6 month check ups were perfect, his control excellent. Doctors at the diabetic clinic at Children's Hospital switched him from beef to beef/pork insulin, telling us it was a better product, then again to humulin insulin, also stating it was a better product, not even telling us it was a synthetic insulin. There was none of this nonsense about monitoring the change from one insulin to another that the doctors are now telling diabetics when they try to go back to the animal insulin - they just changed it and sent us home.

It wasn't until they switched him to humulin insulin that he started to have unexpected and inexplicable low blood sugars, and as years passed the black outs, memory loss, seizures, severe mood swings, and uncontrollable low blood sugars began. He would wake in the morning with a sore tongue. It wasn't until he started having seizures during the day that we realized he was seizing in his sleep and biting his tongue. Our family physician scheduled an EKG months before he died but their were no findings of epilepsy or anything else that could cause seizures. Unfortunately these symptoms came on slowly and I never dreamt that they were caused by the insulin. He spent the last year of his life terrified. One time I found him sobbing into his hands, he looked up and asked "what is wrong with me?" We had no idea. He told his friends that he was going to die - what a way for a 16 year old to live the last year of his life.

On the morning of June 17, 1996 I woke, made a cup of coffee and sat out on the deck enjoying the warm morning sun. I got up and went downstairs to start the morning ritual of getting a teenager up for school. Chris and I had spent the past winter going through our old house changing the light switches to dimmers. As I slowly started dimming the light on and calling quietly out to him I noticed that he was lying half off the bed. I ran across the room yelling his name out loudly. He had obviously had a seizure in his sleep as he was pitched half off the bed. His face was bleeding where he had skidded on the carpet. His body was ice cold and his back was purple and mottled from the blood that had pooled down. The side of his face he had landed on was distorted and stayed frozen like that from rigormortis when I rolled him over. This image of his purple distorted face fills my days and my nightmares. I was sure he was dead but I called 911 anyways, "I think my son is dead." The house filled with firemen, paramedics and police. They took me from the room but I heard one man immediately say "he's gone." I sat in a state of shock while they questioned me trying to figure out what had gone wrong. Then I had to pick up the phone and call his dad and his sister to tell them our boy was dead. His sister, only 18 months older than him, was his best friend. She had adored and fussed over him from the moment he was brought home from the hospital. People commented all throughout their lives how well they got along and how much they liked each other. She has lost her only sibling.

I want to ensure that no other parent or family member has to bury their child for a reason that could be so easily prevented. My heart aches all the time, I miss him so much, his big lovely smile and easy going manner. I know that this pain will always be with me, but a big part of me hopes that recognition by Health Canada and the Standing Committee on Health of the problems with synthetic insulin and the changes that need to be implemented, will give me some relief - no one else need die or have their lives completely devastated. An immediate public warning needs to be issued so that diabetics in Canada will know what is wrong with them. I keep wondering how many did not see the Marketplace program, how many new diabetics have been diagnosed in the past couple of years and at this moment their bodies are being deteriorated by this horrible drug. Diabetics now don't know that they can actually live normal lives because on this drug they can't. When Chris was young he didn't even think he had a disease because it was so manageable it wasn't a big issue. He took his one shot in the morning, ate at the right times and carried on doing everything a child wanted to do.

Diabetics have a right to the true information about the drugs they are taking. In spite of the financial limitations we have and no communication machine, diabetics and their family members from across Canada are still finding out about the Society for Diabetic Rights. They know something is wrong and they are contacting us. Many have gone on to animal insulins and we've heard back time and time again, "thank you, you've saved my life, I am now living the way I used to be able to." An advisory warning needs to go out immediately. Every time a diabetic who is suffering from adverse effects of synthetic insulin goes to bed they have a good chance of not waking up in the morning.

There are three things that I am asking the Standing Committee on Health for:

It is critical that information on the adverse effects of synthetic insulin immediately be given to physicians and pharmacists, who are totally in the dark because the only information they receive is from the pharmaceutical companies;

that not only a public advisory notice written by Health Canada be produced and widely circulated but also public hearings be held that reach out to all diabetics in Canada to discuss their experiences with synthetic insulin and so they can learn about the options they have a right to exercise; and

that Canadian diabetics be assured that a domestically-produced, accessible source of natural animal insulin will always be available to them.

Thank you for opportunity to submit this presentation.

Kathy Ferguson