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Saturday May 16, 2009

Blood activist used his legal skills to help others

He is described as the conscience of the Canadian Blood Services board

James Kreppner's life changed in the mid-1980s.

Before then, he had a medical condition - he suffered from a severe form of hemophilia-A, a genetic disorder that makes it difficult for blood to clot. He had to be prudent about the scrapes, bruises and cuts which most of us ignore after a yelp and a demand for a bandage, and he often had to be treated with transfusions and blood products for more serious bleeds.

But, given the medical treatments and system of the day, he was able to live a reasonably normal life with the anticipation of a slighter shorter than average lifespan.

Those expectations were truncated when he became infected around 1985 with HIV and hepatitis C, two potentially life threatening diseases, through tainted blood products supplied by a blood system that we all trusted.

We now know that the system was more interested in cutting costs and saving money than in protecting people whose lives depended on blood products. Globe and Mail journalist André Picard, author of The Gift of Death: Confronting Canada's Tainted Blood Tragedy, called the infection of thousands of people between 1980 and 1985 our "worst-ever preventable public health disaster."

There were about 2,200 hemophiliacs in Canada in the 1980s, according to Mike McCarthy, a former vice-president of the Canadian Hemophilia Society. About 80 per cent of them became infected with HIV or hepatitis C or, in Mr. Kreppner's case, with both. By this year, half of them had died.

Mr. Kreppner was 25 and halfway through a law degree when he learned officially that he was a victim of the tainted blood scandal. Instead of collapsing from the enormity of the burden, he completed his studies, graduating with an LLB in 1989 and did his articles with the Toronto branch of the federal Department of Justice.

The lurking double whammy knocked him flat with AIDS-related pneumonia in August, 1991. He recovered, but he wasn't ever well enough again to work the treadmill hours of a newly qualified lawyer. Instead, he used his legal training and skills as an activist for people who had been harmed in the blood scandal, first within the Ontario and Canadian Hemophiliac Societies, and then as a representative on broader committees and associations.

He was a key strategist and lobbyist for a public inquiry, which led to the Krever Commission, before which he testified twice, and which resulted in myriad recommendations, in November, 1997, for overhauling the blood delivery system.

That wasn't the end of Mr. Kreppner's activism, however.

Despite increasing health problems - he almost died three times in the 1990s - he fought for expanded treatment opportunities on behalf of all people suffering from HIV and hepatitis C, no matter how they had contracted the diseases. His profession became his vocation as he honed his legal skills on the fight for social justice.

"I clicked with him right away. He was very calm, very dignified and very professional, no matter how upset or angry or wound up he felt," says activist Janet Connors, who contracted HIV through her late husband Randy, an infected hemophiliac. She and Mr. Kreppner met in the early 1990s when they were both on the board of directors of the Canadian Hemophiliac Society.

"I'm sure he had moments where he wished this had never happened - we all did - but he wanted to ensure it never happened again and he wanted to ensure that all people living with AIDS, not just within the blood community, had the best care that was available and everything that we would need in order to be able to live well."

Mr. Kreppner was one of her heroes. "I never expected that James of all people would die," she said. //"He was such a magnificent fighter in every aspect of his life. He had such dignity and passion and I think what we will all remember about him is that right up to the last moment he never gave up and he never stopped."

It was a measure of Mr. Kreppner's integrity and his effectiveness that he also served for the last several years on the board of the Canadian Blood Services, the not-for-profit organization that took over the blood and blood products system for Canadians from the Red Cross. "He was a key element in the trust that we have established between the CBS and its stakeholders," said Verna Skanes, chair of the board of CBS.

"In a lot of ways he was the conscience of our board. He was a pretty eloquent reminder of what we are all there for, not just because of what had happened to him, but because he had a personality that allowed him to communicate what we were there for, and to remind us of Mr. Justice Krever's recommendations."

He was a hero to Ms. Skanes, for "the extraordinary grace and courage" with which he lived his life, a life that had been horribly compromised by the tainted blood products. As a gesture of respect, the CBS has lowered all of its flags across the country to half-mast.

James Kreppner was born in the Toronto-area in the expansive, optimistic 1960s, in a family that included several brothers and a sister. For a while, his father, who was originally from Germany, operated a small resort in the Haliburton area of Ontario, but by the time James was a teenager, the Kreppners lived in Aurora, Ont. That's where he went to high school at Dr. G.W. Williams School.

In his final year he became friendly with Antonia Swann and invited her to the high school prom. She remembers him telling her casually on the way to the dance that he was a hemophiliac, and that he was very matter of fact about his condition.

They both went to York University, where he lived in the Norman Bethune residence and she commuted from Aurora.

Then she was in an accident that totalled her car and so she needed a place to stay. He offered to share his minuscule room with her and slept on the floor for three months so that she could have the bed.

Gradually their friendship turned into a romance, a mutually supportive and loving relationship that lasted for the rest of his life. In an interview with The Toronto Star in August, 2006, he credited Ms. Swann with keeping him alive with her love and her daily insistence that he eat. Only two weeks ago she successfully defended her PhD thesis in economics.

"He was fighting until the last minute," she said yesterday, describing how in the hospital on Wednesday afternoon she and Mr. Kreppner, who was suffering from advanced liver disease, were looking at transplant lists in Canada and abroad to try to prolong his life. "But this time it was too much and he finally said to me, 'I'm tired, I don't want to be intubated,' " she said.

Paraphrasing her partner's final message, she said he was passionate about protecting the blood system, even if that meant restricting high risk donors, not because he wanted to discriminate against people, but because he was fearful of future and as yet unknown pathogens. "He wanted us to put safety above all else," she said.

JAMES KREPPNER

James Kreppner was born in Toronto on March 6, 1962. He died early in the morning of May 14, 2009 at Toronto Western Hospital of complications from organ failure. He was 47. Mr. Kreppner is survived by his partner Antonia (Smudge) Swann and his extended family.

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