The Positive Side

Winter 2010 

Tribute: Builder of a Better, Fairer World

Friend and colleague John Plater reflects on the life and legacy of James Kreppner, one of Canada’s first AIDS activists.

WITH THE PASSING OF JAMES KREPPNER on May 14, 2009, Canada lost a powerful voice for AIDS activism. Though James’ life was cut short at age 47 as a result of complications from HIV and hepatitis C infection, his work as one of Canada’s first AIDS (and hepatitis C) activists will live on. His legacy is one of advocating for access to treatment, ensuring a safe and secure blood supply system, and protecting and promoting human rights.

At a small family memorial, James’ older brother John related a story that sums up much of James’ life. He recalled that when James was six years old he went to his older brothers and announced that he knew what he wanted to be when he grew up. “What do you want to be?” they prodded. “A fireman, an astronaut? Tell us. What?”

“A lawyer,” exclaimed James.

“Why on earth a lawyer?”

“Because I want to help people,” he earnestly replied.

“Why not a doctor? They help people.”

“Because I‘ve spent enough time in hospital.”

James had been born with severe factor VIII hemophilia. He was the second of two boys with the condition in a family of six children. Born in 1962 in the Toronto area, James spent much of his childhood in and out of hospital receiving care. Sometime during a visit for a blood transfusion in the early to mid-1980s, James was infected with HIV and hepatitis C. It wasn’t until 1987 that James, then a successful student specializing in Soviet Union studies in the political science program at York University, learned of his HIV status.

Healthy and unwilling to be deterred from his childhood ambition, James transferred at the earliest opportunity to Osgoode Hall Law School. Upon graduation in 1989, he articled with the federal Department of Justice, embarking on what he was expecting to be a long and distinguished career as a litigator. But James’ health caught up with him as he was finishing his studies; he was experiencing extreme fatigue and had to call on his deepest reserves to write the Bar admission exams.

As he donned his formal barrister’s robes and received the call to the Bar, James began a life of close health calls and permanent disability. At a low point he had a meagre 88 pounds on his 6-foot-tall frame. He developed an auto-immune disorder that was a dangerous mix with hemophilia because it could lead to extreme blood loss — and it did on more than one occasion. One crazy night in a downtown Toronto hospital emergency ward, he lost a third of his blood volume through gastrointestinal bleeding. Another time, his wife, Antonia “Smudge” Swann, returned to their apartment to find it covered in red. Most people would immediately dial 911 to report a violent assault. Instead, Antonia called the hospital to find James admitted with a lung ailment.

HEALTH CHALLENGES DIDN’T STOP JAMES from advocating for a better world. In the early 1990s, he became involved in the AIDS activist movement in Toronto. He was on the board of the Toronto People with AIDS Foundation (TPWAF) and was a founding member of the Canadian Treatment Action Council (CTAC) and the HIV/AIDS Legal Clinic of Ontario (HALCO).

During that time, James was invited to participate in the Canadian Hemophilia Society’s campaign for compensation for people infected with HIV through the blood supply system. He played a key role in advocating for — and ultimately securing in September 1993 — compensation from the Ontario government for people infected with HIV through blood transfusions (the Multi-Provincial / Territorial Assistance Plan). He subsequently became a lead plaintiff in the class action lawsuit that in 1999 led to the 1986–1990 Hepatitis C Settlement Agreement, which offered compensation to people infected with hepatitis C through blood transfusions but only during a five-year period in the late 1980s. After, James continued to advocate publicly and politically for broader hepatitis C compensation at the provincial and national levels.

Not satisfied with simply securing recompense for past mistakes, James also insisted on assurances that the Canadian blood supply be protected against future catastrophes. Acting as an advisor to local, provincial and national levels of the Hemophilia Society, he was a key figure in the push for and involvement in the Commission of Inquiry on the Blood System in Canada (the “Krever Inquiry”), testifying before the inquiry on two occasions. Recommendations from the inquiry ultimately led to the creation of Canadian Blood Services (CBS) and Héma-Québec in 1998. The CBS would become a large part of James’ life, and he, part of its. James’ depth of knowledge and insight led to his appointment to the agency’s board of directors in 2002, where he served right up until his passing.

James was a champion of patient rights and access to HIV treatment issues. He was a community advisor to the Canadian HIV Trials Network, where he poured over countless research proposals and ethics reviews, demonstrating an uncanny ability to challenge the best and brightest scientific minds. At the same time he had a wonderful ability to distil the true value (and sometimes lack thereof) from the most dense scientific literature and transform it into understandable advice for the reader of a newsletter or a companion in a hospital waiting room. People living with HIV and/or hepatitis C share stories of seeing their doctor about treatment options and then contacting James for an explanation that often amounted to a second opinion.

FOR THOSE WHO KNEW HIM WELL, James was never just a treatment egghead. He was a true renaissance man. A dinner conversation following a day of meetings would range from the latest in treatment options to the politics of the Middle East, from quantum physics to the deeper meaning of an episode of Buffy the Vampire Slayer. For any topic, James was prepared to champion a position no matter what the prevailing general consensus might be. Yet, regardless of how vehemently one might oppose his views, no one had anything but the deepest respect and admiration for his devotion to the truth, his personal integrity and his passion for justice.

James’ deep sense of fairness meant that he never wanted to distinguish between so-called “innocent victims” of tainted blood and other people living with HIV. Once when James was in the hospital with an AIDS-related illness, a nurse commented, “Why didn’t you tell us you were a hemophiliac? We would have treated you much better.” James told this story again and again to different groups in order to educate people about what he saw as blatant discrimination against the gay community.

While his HIV and HCV infections advanced, James battled on. In recent years, he directed his waning energy into calling for a liver transplant program for HIV/HCV co-infected individuals in Ontario, fighting the creep of HIV criminalization and defending strong screening criteria and safety measures for blood donations in Canada. Early in 2009, James decided that he would have to retire from the CBS board due to advanced cirrhosis from hepatitis C and increasingly frail health. This decision was very difficult for James because he was so passionate about his fight to keep the Canadian blood system safe from future pathogens. He was also well aware that his physical presence helped to serve as an ongoing reminder to his colleagues across the table of the price of tainted blood.

It is remarkable that James came to Ottawa as recently as late April 2009 for a CBS meeting, just weeks before he passed away. Remarkable because medical tests had revealed fluid build-up (ascites) from end-stage liver disease, and fluid from his gut was starting to migrate down to his feet, making it difficult to walk. Nonetheless, James co-chaired a good part of the full-day meeting and listened thoughtfully to each and every speaker and group, making notes and keeping the meeting running. It turned out to be his last CBS meeting.

 James was proudly one of the rare “outliers” in terms of his HIV infection. He lived with the virus for more than 20 years, becoming the last remaining long-term survivor of his longtime family doctor. James used to say he somehow managed to survive with next to no CD4+ cells for more than 15 years. At low points, when his count dropped to 2, he and Antonia sometimes jokingly referred to his CD4+ cells as Huey and Dewey — Donald Duck’s nephews.

Antonia stood side by side with James through all the years and all the battles, and she continues to advocate for the goals he fought for. Of particular pleasure for James was to see her successfully defend her PhD thesis in economics the month before he passed away. The CBS board members would later tell Antonia that James always proudly told them the details of her activities while rarely discussing his own serious health problems.

As I reflect on the life of my friend James Kreppner, I hear a call to arms for all AIDS and health-care activists. His rich legacy of words and actions calls us to keep on challenging ourselves, and our neighbours, to build a better, fairer world.

John Plater is a lawyer and hobby farmer in Heathcote, Ontario. He has deep roots in the Ontario HIV and hepatitis C communities.

Photograph: Antonia Swann