Thursday, December 12, 1996
Andre Picard
YOU couldn't help but look when Ed Kubin entered a room, what with the
trademark black cowboy hat, plaid shirt and that aw-shucks grin. And you
couldn't help but listen as he rolled the wheelchair over and started to
talk. He had no shortage of engaging tales, and many, many opinions, most of
them stated in colourful, salty terms.
In recent years, Mr. Kubin's conversation was dominated by talk of the
tainted blood tragedy that will kill more than 3,000 Canadians. (Including
him, his younger brother Barry, and countless friends.) As a severe
hemophiliac, Mr. Kubin used massive quantities of Factor 8, a clotting
substance derived from blood. Blood saved his life, but caused him much
suffering. Over the years, Ed contracted not only the human immunodeficiency
virus, but hepatitis B, hepatitis C and cytomegalovirus from blood.
"HIV, HBV, HCV, CMV -- I've got more letters after my name than all those
smart doctors who told us the products were safe," Mr. Kubin would quip.
In fact, over the years, he earned a PhD in rabble-rousing. Those who
dismissed him as a loud-mouth came to regret it because, more often than
not, he was right.
In early 1983, more than two years before Canadian hemophiliacs were
provided with Factor 8 that was heat-treated, Mr. Kubin tried to warn others
of the danger. "Each time a hemophiliac receives a treatment, he wonders if
the infusion will give him AIDS," he wrote to the authorities. That same
year, he demanded a public inquiry, an investigation that would not come
until a decade later.
When it became clear that more than half the country's hemophiliacs were
infected, Mr. Kubin was on the front lines demanding compensation. And in
1991, long before officials were charged in France, Germany and Japan, Mr.
Kubin approached the RCMP and demanded that charges be laid against
administrators of the Canadian blood system.
Days before his death, he was on the phone to journalists, complaining about
delays in the inquiry process, cursing the health ministers for
spinelessness and demanding that the courts start sending people off to
prison.
Yet, there was a dark side to Mr. Kubin's life. He overcame terrible
adversity to become a carefree, jovial man, but the HIV diagnosis
transformed him into a bitter, angry one. His marriage of 25 years
collapsed, and he grew distant from his children, Shannon, Stacey, Shelley
and Todd.
Mr. Kubin moved to a trailer in Lorette,
Manitoba. He became too sick to
maintain his job as a financial controller and, his finances in ruin, he
turned to pursuits such as chinchilla farming.
The depression was so profound at times that he could not lift himself out
of bed. After the amputation of a leg, Mr. Kubin, an avid hunter, was
reduced to shooting gophers from his truck. He carried a bullet in his pants
pocket at all times, and thought often of "taking a walk in the woods and
ending the pain."
At public hearings of the Commission of Inquiry on the Blood System in
Canada, his estranged wife, Lynn Kubin, gave heart-wrenching testimony about
the impact of tainted blood on families. "AIDS destroyed our love, it
destroyed our home and, if nothing is done, this virus will destroy our
children and grandchildren," she said.
Mercifully, before he died Mr. Kubin had reconciled with his family. He
turned the suicide bullet over to his daughter Shelley and vowed to spend
the time he had left with his four grandchildren.
When Ed Kubin was born, only one in 10 hemophiliacs lived past adolescence.
Most were confined to bed to avoid "bleeds" (the real danger was internal
bleeding), but his parents wanted him to live a normal life.
When his joints became too swollen to walk, Ed's father, an instrument
technician named Charles Kubin, would drag him around on a padded cart. When
the boys needed blood -- and even a small bruise could require the
transfusion of more than a gallon -- the father would round up the
neighbours to donate.
At age 11, Ed learned to skate. One day, he sneaked out to play hockey at
the rink in St. Vital, a fleeting bid for normalcy that almost cost him his
life. More than anything, that story embodies the way Ed Kubin lived.
Bleeders weren't supposed to skate, let alone play a rough-and-tumble game.
Their lot in life was supposed to be quiet resignation.
Ed was rarely quiet, and he brooked no resignation. He lived life the way
his hero, Gordie Howe, played hockey -- elbows up, ever-ready to go into the
corners and bent on long-term survival.
André Picard is the author of The Gift of Death: Confronting Canada's
Tainted Blood Tragedy (HarperCollins, 1995).