Letter from Michael Cox

I am writing this brief outline of my medical ordeal as very few people seem to truly understand the difficulties and hardships caused by this horrific blood disorder. I was diagnosed at age two and was not expected to live past the age of five. I have been seen by numerous general practitioners, interns, surgeons, dermatologists, immunologists, hematologists, dentists and denturists. Fever, infections, pain and discomfort are an every day part of my life. Infections so severe they would have to be operated on, ear infection after ear infection resulting in a mastoidotomy operation. Bleeding, sore and swollen infected gums eventually led to the removal of all of my teeth. Denture rub causes discomfort and leads to bacterial and fungal infection which causes difficulties eating which leads to dangerous weight loss. Major skin infections can result from paper cuts. These infections can lead to blood poisoning which, in itself, has numerous complications. Breathing is life threatening because of airborne viruses.

During school years, sick days were many and the frequency of illness increased due to the increase in human contact and exposure. I was unable to complete secondary school because of frequent lengthy illnesses and not having the energy or ability to keep up. Warm weather caused sweating and led to infections. Cold led to pneumonia or pleurisy which caused massive scarring on both of my lungs. Pneumonia occurred as frequently as twelve episodes in a year. Painful mouth sores developed one to ten at a time. Infections can develop at blood test sites. My entire body is scarred by boils and skin infections. My spleen is frequently enlarged and is a source of pain and constant discomfort. I have endured testing, experimentation and operations including the removal of a gangrenous bowel. I live life day to day with dread and fear of what will happen next. I had resigned myself to the fact that I would never live free of pain, that I will always have a severe potential for numerous hospital admissions and frequent life threatening, overwhelming infections, and to the fact that things will only get worse. My condition has been reviewed throughout my life by various doctors and up to now no treatment has been of value.

Stress is tremendous as each day I survive is truly miraculous. Any jobs I did manage to obtain were also a source of stress and resentment as I was either let go because of some drummed up excuse or was constantly passed by for promotion. Up until July 1992, I had been unemployed for more than a two and a half year stretch, at which time the only route to ensure permanent employment and a modest income before taxes was to purchase my father's business.

We rely heavily on family and mostly on my father (who has just been diagnosed with cancer) to be available any day to run the shop for stretches for sometimes weeks at a time while I am sick. If my father can no longer be available at any time to aid me when I am ill and I do not receive financial assistance for the drug Neupogen, I will, without a doubt, lose my business and be forced to consider uprooting my wife and children and moving to a province where the drug is covered for my sons and I and where I can obtain gainful employment to support my family.

Affected individuals can lead productive lives and cost analysis studies have shown that such therapy is appropriate not only from the emotional and medical point of view but also from a financial point of view as well.

This illness has caused myself and my family great tragedy, sadness and sorrow beyond explanation. I look forward to a relatively healthy lifestyle, one that most people take for granted. Neupogen is a life saving drug for my sons and I and a few other Canadians who have to endure Neutropenia and all the hardships, pain and suffering that it brings with it. Please make Neupogen financially available for those of us who so desperately need it.

The good news - Michael Cox received the "go ahead" on coverage for treatment. This treatment commenced on the first week of March 1993.