1 —06 6 8 A BCPW Dedication To all members, past and present, who have contributed extraordinary amounts of time and energy in the struggle to improve the lives of all persons with HIV/AIDS. This documented history is in honour of your immense contributions. A 20 year history of The British Columbia Persons With AIDS Society 1986–2006 2 Acknowledgements —06 6 8 A Original Concept Development BCPW Katharine McEachern, Manager, Executive Operations Jackie Haywood, Director of Support Services Editorial Board Terry Howard, 2006 Prison Outreach Coordinator Melissa Davis, Suzan Krieger, Director of Communications and Education Advocate Wayne Campbell, Michael Lawrence, BCPWA Board of Directors Financial Coordinator Glyn Townson, Elgin Lim, BCPWA Board of Directors Director of Prevention 2001 Stephen Macdonald, Wayne Campbell, Manager of Human Resources BCPWA Board of Directors Alexandra Regier, Jackie Haywood, Office Manager Director of Support Services Teresa Stancioff, Glen Hillson, Volunteer Services Coordinator Chair, BCPWA Board of Directors Jane Talbot, Major Contributors Director of Treatment Information and Advocacy 2001 - 2006 Glyn Townson, Alexandra Cubitt BCPWA Board of Directors 1986 - 2001 Zoran Stjepanovic, Janice Duddy • Rana Hakami • Chunyee Li Treatment Services Coordinator 2001 Volunteer and Staff Contributors Jeff Anderson, 2006 BCPWA Board of Directors Wayne Campbell, Board of Directors Pierre Beaulne, past Director of Communications Cheryl Colborne, Advocate Paula Braitstein, Melissa Davis, Director of Treatment Information Director of Communications and Education Naomi Brunemeyer, Dena Ellery, Director of Communications and Marketing Director of Development Melissa Davis, Ross Harvey, Director of Development Executive Director A 20 year history of The British Columbia Persons With AIDS Society 1986–2006 Acknowledgements 3 —06 6 8 A BCPW Howard Engle Gil Ferguson Ross Harvey, Executive Director Jackie Haywood, Director of Support Services Glen Hillson, BCPWA Board of Directors Michael Lawrence, Financial Coordinator Michael Linhart, past Prison Outreach Coordinator Quita Longmore Jessica K. John Kozachenko Special Thanks: Tom McAulay to Human Resources Development Canada (HRDC)/ Service Canada for providing funding for the May McQueen researching and writing of this project in 2001 and 2006. Tom Mountford Tarel Quandt, © 2006 British Columbia Persons With AIDS Society. All rights reserved. No part of this publication may be Director of Advocacy reproduced, transmitted, transcribed, stored in a retrieval Dr. Michael Rekart system, or translated into any language in any form by any means without written permission. Stephen Macdonald, Manager of Human Resources First edition: August 15, 2002 Second edition: December 1, 2006 Arn Schilder British Columbia Persons With AIDS Society Stephen Smith, 1107 Seymour Street, 2nd floor PARC Librarian Vancouver, BC Canada V6B 5S8 Kassandra Van Keith Phone: 604.893.2200 Email: [email protected] Rick Waines Web site: www.bcpwa.org Dr. Brian Willoughby Photographs: John Kozachenko and Britt Permien Layout: Britt Permien A 20 year history of The British Columbia Persons With AIDS Society 1986–2006 4 The British Columbia Persons WithThe British AIDS Columbia Persons Society 1986–2006 historyA 20year of BCPWA 86—06 Acronyms 5 —06 6 8 A ACAP ••••••AIDS Community Action Program ACT ••••••••Access to Careers and Training Centre BCPW ARC ••••••••AIDS Related Complex ASO••••••••AIDS Service Organization AV ••••••••AIDS Vancouver BCCfE••••••British Columbia Centre for Excellence in HIV/AIDS BCCPD ••••British Columbia Coalition of People with Disabilities BCPWA ••••British Columbia Persons With AIDS Society BIA ••••••••Bioelectric Impedance Analysis CAAN ••••••Canadian Aboriginal AIDS Network CAM ••••••Complementary and Alternative Medicines CAS ••••••••Canadian AIDS Society CHALN ••••Canadian HIV/AIDS Legal Network CHF••••••••Complementary Health Fund CHRC ••••••Canadian Human Rights Commission CPP ••••••••Canadian Pension Plan CTAC ••••••Canadian Treatment Advocates Council (re-named: Canadian Treatment Action Council) CUPE ••••••Canadian Union of Public Employees CWGHR ••••Canadian Working Group on HIV and Rehabilitation DEYAS ••••Downtown Eastside Youth Activities Society DTES ••••••Downtown Eastside EDRP ••••••Emergency Drug Release Program HAART ••••Highly Active Antiretroviral Therapy (also ART: Antiretroviral Therapy) HIV ••••••••Human Immunodeficiency Virus HPB ••••••••Health Protection Branch IDUs ••••••Injection Drug Users MLA••••••••Member of the Legislative Assembly MNSB ••••••Monthly Nutritional Supplement Benefit MP ••••••••Member of Parliament NAC••••••••St. Paul’s Hospital Neighbourhood Advisory Committee NAS ••••••••National AIDS Strategy NAS II ••••••National AIDS Strategy, Phase II NDP••••••••New Democratic Party PAN ••••••••Pacific AIDS Network PARC ••••••Pacific AIDS Resource Centre PMPRB ••••Patent Medicines Prices Review Board PIs ••••••••Protease Inhibitors POP••••••••Prison Outreach Program PSAs ••••••Public Service Announcements PWA••••••••Persons with AIDS PWN ••••••Positive Women’s Network SAP ••••••••Special Access Program TIP ••••••••Treatment Information Program UBC••••••••University of British Columbia UI ••••••••••Unemployment Insurance (re-named: Employment Insurance (EI)) A 20 year history of The British Columbia Persons With AIDS Society 1986–2006 6 —06 6 8 A BCPW History of BCPWA “First and foremost, the concept that has shaped the PWA Coalition is empowerment taking charge of your life. If you see your- self as a victim, that’s a short-cut to death.” Kevin Brown In 1982, rumours of a gay plague in New York, San With increasing demands for its services, AIDS Francisco, and Los Angeles were emerging and, by Vancouver inevitably grew and received federal the following year, evidence of this new disease funding. As a condition of this funding, however, was starting to appear in Vancouver. As members of the organization was obliged to adhere to an agree- the community became ill, there was an urgent ment with the federal government to refrain from need to gather and distribute information on this any form of political action and/or the promotion new disease. of alternative medicines. This agreement included prohibitions against providing treatment information In the fall of 1983, AIDS Vancouver (AV) was and lobbying to demand access to experimental formed and provided initial support services to drugs. In essence, the agreement between AIDS persons with AIDS (PWAs) in Vancouver. It became Vancouver and the federal government restricted one of the first community-based AIDS organizations forms of action that were necessary to advance the in Canada. Under the auspices of AIDS Vancouver, needs and rights of PWAs. It became apparent that self-help groups for PWAs were formed. Many of if PWAs were to have the freedom to take actions these early meetings took place informally in they deemed necessary, there would need to be people’s homes. Eventually, the meetings were an alternate AIDS organization run by PWAs, for moved to St. Paul’s Hospital where they became PWAs. As Michael Welch, former AIDS Vancouver more structured and formalized. counselor said, “The truth of the matter is that Late in 1985, a local doctor applied to the Federal between 1982 and 1986, AIDS grew to be such an Health Protection Branch for the release of experi- incredibly vast social issue that one group couldn’t mental AIDS drugs on compassionate grounds. His handle all the issues and problems and support application was denied on the basis that there was needs of PWAs.”1 no viral testing lab in British Columbia. In response to this rejected application, the first Canadian demonstration by AIDS activists was organized in Victoria in March of 1986. PWAs picketed the British Columbia Legislature in Victoria to demand a viral testing laboratory in Vancouver. This became the first of many political actions led by local PWAs and established an organizational history firmly rooted in both collective and individual advocacy. A 20 year history of The British Columbia Persons With AIDS Society 1986–2006 1986 7 —06 6 8 A was in April 1986 that the differences with AIDS He realized that different people make ItVancouver’s policies, objectives, and tactics different decisions as to which treatments BCPW became irresolvable and the groundwork was laid they use, and he was supportive even when for the formation of a new organization. The emerging he might not agree with them. Kevin Brown organization’s first acts of business involved opening taught us what the Coalition is all about a separate bank account and installing a telephone supporting each other, even when we do line. A volunteer office manager joined the organization not see eye to eye. Compromising with one to coordinate correspondence and contributions; another, in order that we might achieve the this quickly became a paid position when funds best results for all of us.2 became available. The Vancouver Persons With AIDS Coalition was the chosen name for the The Vancouver PWA Coalition became the first self- new organization. help, self-care organization in Canada, entirely run The initial goal of the Vancouver PWA Coalition was for and by PWAs. In the beginning, the fight for to provide a forum for PWAs to advocate for their rights medical care, housing, research for treatments, and and their health issues. “Take back the power” was funding for community-based organizations were one of the key rallying cries. As more people joined the