From Community Response to National Responsibility Craig Mcclure Dr

2010 1995 1990 2005 2000

CATIE@20 From Community Response to National Responsibility Craig McClure Dr. Alan Li Treatment Information Services Coordinator, Physician, CATIE, 1993-1997 Regent Park Community Health Centre Executive Director, International AIDS Society, Co-Chair, 2004-2009 Committee for Accessible AIDS Treatment Robert Newman Tim McCaskell CATIE@20 PHA Peer Support Advocate, Founding member, AIDS ACTION NOW! From Community Response to National Responsibility AIDS Committee of London Writer, educator, activist Don Short Ken Monteith Russell Armstrong Member, CATIE Board, 2009-2010 Publisher: Laurie Edmiston Executive Director, Coalition des organismes Member, Treatment Information Case Worker, communautaires québécois de lutte contre Editor-in-Chief: Jim Pollock AIDS Committee of Durham Region Exchange Committee le sida (COCQ-SIDA) Editors: Véronique Destrubé Member, CATIE Board, 1991-1992 Gordon Waselnuk Stéphanie Lemyre Member, Treatment Information Program, Devan Nambiar Maggie Atkinson Treatment Information Counsellor and Educator, Darien Taylor Lawyer, Borden and Elliot, 1990-1993 BCPWA Certified Practitioner, Thai Yoga Massage CATIE, 1996-2008 Creative Design: Jonathan Kitchen, AIDS activist (retired) Education Coordinator, JAK Creative Catherine Baylis People Providing Quotes Rainbow Health Ontario Client Services Coordinator, latterly Executive Fanta Ongoiba Production of this publication has been made possible Lin Ai Director, Positive Living North, 1999-2008 Treatment Information Counsellor, CATIE, through funding from the Public Health Agency of Manager, Information Technology, 2004-2008 Canada and the Ontario Ministry of Health and Long- Harlon Davey Manager, Information Technology, ACCES 1996-1997 Term Care and an “in-kind” contribution from Executive Director, Member, CATIE Board, 2008-2010 Employment St. Joseph Communications. Africans in Partnership Against AIDS Bob Gardner Margaret Akan © 2010, CATIE. Brent Patterson Co-chair, CATIE Board, 1997-2000 Chief Executive Officer, Volunteer Coordinator and Harm Reduction Director, Healthcare Reform and Policy, All Nations Hope AIDS Network CATIE Ordering Centre Catalogue Number: Member, CATIE, 1991-1999 ATI-90124 Wellesley Institute Ken Clement Executive Director, Terry Pigeon Linda Gardner CONTRIBUTORS Canadian Aboriginal AIDS Network Chair, CATIE Board, 2006-2009 Co-chair, CATIE Board, 1994-1997 Two Decades Coordinator, Diversity and Community Access, Dr. Evan Collins RonniLyn Pustil Women’s College Hospital Member, CATIE Board, 2000-2004 Editor, The Positive Side, 2001-2005 Darien Taylor North American NGO Delegate, UNAIDS Feminist, reproductive rights Co-chair, AAN!, 1992-1994 Programme Coordinating Board Dr. Greg Robinson Director, Program Delivery, CATIE and HIV/AIDS activist PHA and AIDS activist with Harlon Davey AIDS ACTION NOW! Sean Hosein Member, CATIE Board, 2008-2010 Physician with specialty in Pubic Health History Writers Science & Medicine Writer, CATIE, and Epidemiology Glen Brown 1990-present Brenda Done Director, Programs & Services, CATIE, Nurse, Infectious Diseases Care Program, Dr. Steffanie Strathdee Brian Huskins 1996-1998 St. Joseph’s Health Care, London, Ontario Member, Treatment Information Manager, Stakeholder Relations, CATIE, President, CANAC, 2002-2004 Acting General Manager, CATIE, 1998-1999 Exchange Committee 2002-2006 Lorne Fox Associate Dean, Global Health Sciences, Laurie Edmiston Principle Associate, Associate Director, External Affairs & Executive Director, CATIE, 2003 - present University of California San Diego School Huskins and Associates Consulting, Inc. Community Relations, ViiV Healthcare ULC of Medicine Eric Mykhalovskiy Doreen Littlejohn Dr. John Gill Coordinator, CATIE, 1990-1991 Trevor Stratton Coordinator, Positive Outlook Program, Medical Director, S. Alberta HIV Clinic, Associate Professor, Sociology, York University APHA Advocate, Canadian Aboriginal AIDS Vancouver Native Health Society Sheldon M. Chumir Health Centre, Calgary Network (CAAN) and Mississauga Ojibwe Reminiscence Writers Carol Major Debra Jakubec Consultant, Niagara Region Executive Director, HIV Edmonton Member, CATIE Board, 2009-present Viola Antoine Head, HIV Laboratory, MOHLTC, 1985-2002 Nurse, Positive Outlook Program, Expert Advisor, Ontario HIV Treatment Laurette Lévy Nicole White Vancouver Native Health Society Network, 2002-2010 Member, CATIE Board, 1994-1997 Executive Coordinator, AIDS Saskatoon Two Decades ...... 2

THE EARLY YEARS: A bare space on College and an immense task ahead...... 3 Driving to Buffalo for Pentamidine...... 5 Haven of Hope...... 7 Inside Always the Big Picture...... 9 Remembering George Smith...... 11 CATIE@20 THE MIDDLE YEARS: HAART and the Evolution of Therapies...... 12 Transforming Health...... 13 Hitting the Ground, Running...... 15 Increasing the Uptake of Viral Load Testing...... 16 Life-Saving Intervention...... 19

Remembering Chester Myers...... 21

THE RECENT YEARS: An expanded, national mandate...... 22 Prairie Snow Storm...... 23 Tom – 21, Healthy & Undetectable...... 28

Remembering Alan Cornwall...... 29

Back Pages: From The Positive Side files...... 30 Sharing Stories...... 31 Forging Friendships and Learning...... 33 CATIE Treatment Datelines...... 34 The Great Disparity...... 35 All I Want...... 37 Board Members and Staff through the Years ...... 38 Two decades wenty years ago, the Canadian AIDS Treatment Information Exchange (CATIE) was incorporated with the visionary mandate to share information about HIV/AIDS treatment. By 1990, CATIE had evolved from its origins T as the TIE (Treatment Information Exchange) Committee of the activist organization AIDS ACTION NOW! to a staff of two and a us pause to remember the contributions of all who aligned sharing. We had the good fortune of being able to connect cadre of volunteers in Toronto’s Little Italy. This dedicated themselves with this fundamentally community-based ven- with a number of those people and we were overwhelmed by group, unable to accept institutional inaction on AIDS, worked ture to conquer HIV through treatment. their generosity in writing reminiscences. The commentar- in the midst of unrelenting illness, fear, death and grief to real- ies provided by our contributors (listed on the inside front HIV has dealt a crushing blow to global health and to the ize a community vision of a centralized location where PHAs cover) speak eloquently of their passion and dedication. health of Canadians. CATIE’s role in the HIV epidemic and those who supported them could pool the emerging scraps through the years has, nonetheless, demonstrated the fore- We also thank those who offered us images for our use and of information about possible therapies – most ‘anecdotal’ and sight and the inestimable force that can be brought to bear consideration, notably Joe Average (for his illustration), Glen outside the realm of ‘proof of efficacy’ – that might slow the against adversity once deemed unstoppable. Certainly this Brown, Henry Chan, Bob and Linda Gardner, Brian Huskins, seemingly inexorable progression to death. is reason to celebrate. Bruno Lemay, Terry Maurice, Susan Massarella, Donald W. CATIE’s 20th anniversary is a bittersweet occasion. So We thank the many people who have contributed so gener- McLeod of the Canadian Lesbian and Gay Archives, Fanta many of the people who created and provided CATIE’s ously to the production of this book. CATIE@20 is really Ongoiba, Jake Peters, Jeff Potts, Trevor Stratton and Ralph 2 services, and so many more who looked to these services all about the voices of so many who were there to build our Carl Wushke. And for all those who have helped us through as a lifeline, are no longer with us. Our anniversary gives organization and influence the course of HIV information the years, we cannot thank you enough. THE EARLY YEARS BY ERIC MYKHALOVSKIY

A bare space on College and an immense task ahead don’t remember the exact date, but sometime in January, 1990 I opened the door into an empty two-room office at 517 College Street in Toronto (now a condominium building) and the work of laying the organizational foundations Iof what would become CATIE had begun. I had been hired as the co-ordinator of AIDS ACTION lenge. But our current situation pales in comparison to the neglect. HIV-related stigma was rampant, and people living NOW!’s Treatment Information Exchange Project, an initia- crisis we faced back in 1990. At that time, HIV/AIDS was, with HIV – the vast majority of whom were gay men – rou- tive born out of a desperate need for information about this for many, very close to a death sentence. AZT was the only tinely fell ill with opportunistic infections and died. mysterious virus that was killing our friends and lovers. widely available medical treatment to combat the virus in Canada. Institutional mechanisms to test and make experi- Of course, the flip side was that the urgency we faced helped After two decades and despite many advances in HIV treat- mental treatments available to PHAs were not yet in place. fuel a period of incredible political activism centered on ment and prevention, HIV is still a major public health chal- Government response to HIV/AIDS bordered on complete HIV/AIDS. This was a time before the AIDS response

3 1981 The US Centers for Disease Control Reports on the first U.S. cases Disease is initially called Gay- Reports on AIDS begin to appear Cases of the disease reported (CDC) in Atlanta receives reports are published in the medical and Related Immune Deficiency in The Body Politic, Toronto’s among injection drug users of unusually high rates of the rare popular press – 20 gay men in the (GRID) because it is thought major gay newspaper diseases Pneumocystis carinii New York area, six in Los Angeles it only affects gay men pneumonia (PCP) and Kaposi’s sarcoma (KS) in young gay men the neglect of PHAs’ treatment needs. By the late 1980s, the Early clinical trials information from CATIE group decided that a new kind of community-based AIDS or- was paramount for survival and health ganization was needed, one that focused exclusively on health for many PHAS. It meant access to drugs, and treatment information. After much effort, a success- clinicians and timely blood test results. ful grant application from the Ontario Trillium Foundation, – Devan Nambiar which funded my position, helped make that vision possible.

in Canada had become crystallized into a network of AIDS So while the Treatment Information Exchange (TIE) Proj- service organizations, when grassroots activism was in its ect office may have been physically empty in January,1990, heyday. It was a time when the identity of a “person living it was full of the vision of an organization that would ex- with HIV/AIDS” emerged as a vibrant political, cultural and change treatment information in order to enhance the health social reality. It was also a time when structures of power of PHAs. But what that would look like, and how to make The Body Politic, June, 1984 that created problems for PHAs, from science to government it happen, were wide-open questions. Luckily, I had a lot of to the health professions, were contested and transformed. help, particularly from an advisory committee formed of AAN! members and others. In Canada, AIDS ACTION NOW! (AAN!) led the way. The group, which drew largely on gay liberation politics and I would like to say that we approached our work in a ration- feminist health activism, followed a strategy of “documents al and step-wise manner. But that’s not exactly how it hap- and demonstrations,” a term coined by George Smith, one pened. Of course, we weren’t completely slapdash. In the of CATIE’s founders. That strategy involved publishing cri- early months we commissioned an assessment of treatment tiques and analyses of key issues supported by creative street information needs among PHAs and ASOs, conducted by actions and demonstrations, with the goal of making effec- Ron Foley. It showed us the extent to which our communi- tive treatments widely available to PHAs. ties wanted and needed clear and up-to-date information on treating HIV infection. But much of what we ended up doing AAN! used these approaches to criticize how the response seemed to arise out of circumstances of exigency and crisis.

AIDS ACTION NOW! members. to HIV/AIDS – including the activities of early community- We didn’t always have the luxury of careful planning; we Back row: Bob Gardner, Glen Brown, [unknown]. Front row: Linda Gardner, Brian Finch, Sean Hosein and Brent Patterson based AIDS organizations – emphasized HIV prevention to often had to jump in and think on our feet.

4 1982 1983 First reports of AIDS cases in The Montreal medical Disease renamed Acquired First cases of AIDS Discovery that women can Canada reach the Laboratory community forms the Comité Immune Deficiency Syndrome reported in Africa become infected through Centre for Disease Control SIDA du Québec, the first AIDS (AIDS); it is realized infection can heterosexual sex (LCDC) in Ottawa organization in Canada be sexually transmitted and cases are reported in hæmophiliacs and blood transfusion recipients REMINISCENCE BY RUSSELL ARMSTRONG Driving To Buffalo For Pentamidine

The early days of AIDS ACTION NOW! and When I reflect on those days of activism, I realize they changed my thanks. I hope that I have lived up to the expectations of everyone the beginning of CATIE seem to come life. Sometimes, I think of myself sitting in a room of empty chairs – from that incredible time. My memory is alive for all of you; my sad- from another lifetime. I remember spaces where friends, colleagues, lovers, once sat. I can’t work out ness is always with me for everyone who can’t share this moment George and Sean and Eric. I also re- why AIDS took all of them and skipped me. After trying to ‘retire’ of reflection with us. member Max Allen and working with from HIV work a few times, I am back in the thick of it, working at him to write the original funding ap- the epicenter with a new family of activists around me. My style is Molimo, aku boloke bakhotsi baka. [Sethoso language: ‘God bless my plication. We could choose either three changed, though. Rather than motivate people with megaphones friends and keep them safe from harm.’] years or five years in the proposal. We chose and clever slogans, I work more three, thinking that AIDS would be all over by then, that the cure closely with individuals, trying to in- Bill Greenway using aerolized pentamidine was only around the corner. I believed (as I still believe) that if we spire vision, trying to build courage (left) and Michael Lynch taking naltrexone at AAN! media conference on Parliament Hill worked and fought hard enough it would all really end. In 2011- that things can still be different. (photo: Philip Hannan) 2012, we start the third decade of the HIV era. Who could have imagined in the 1980s all that it would become? I have seen what I could never have imagined in those days in Toronto I occasionally share some of my early experiences with my col- about what HIV could do. While the leagues here in Africa. I tell them about driving to Buffalo to buy vi- price I have paid is an inconsolable als of pentamidine. I can still see the brown paper bags on the seat sadness, I don’t anymore wish that I beside me. Who even remembers that whole process now with the had chosen a different path. HIV has portable aerosolizers? And what about the early days of AZT and revealed so many things to me, to all the fancy pill boxes with the electronic alarms? It was before all of of us. It has brought us closer to the us had cell phones even. I still have a photo from the big visit to Ot- complexity and, ultimately, the mys- tawa where people took their different drugs that weren’t available tery of who we are, and what we are in Canada. I am in a far corner of the photo with a megaphone. about. So, I am grown old and wise Was that really me? All of the ‘panelists’ who are sitting at a table now. The ‘lessons’ through time of in front of the Centennial Flame with the Peace Tower looming be- witnessing the devastation of HIV hind are dead now. The feeling of breaking out with open resistance are now my strength. To you, and was so intoxicating. There was such hope, then, that we could turn to all the others, who drew me into this disaster around... activism around HIV, I can only say

Doctors in France islolate a virus (lymphadenopathy- The Canadian Red Cross follows the American Red AIDS Vancouver founded, the first AIDS associated virus) they believe causes AIDS Cross in adopting recommendations concerning blood service organization (ASO) in Canada donations. Press widely report “high-risk groups” as homosexuals and Haitians, employing terms such as “gay blood ban.” Gay spokespersons criticize media and the Red Cross action, and the Haitian Consul-General in Toronto accuses the Canadian Red Cross of ‘racism.’ One of the first things we did after we opened the office was take over the publishing of TreatmentUpdate. Sean Hosein As an HIV researcher who ‘grew up’ in the had been writing TreatmentUpdate for some time. Issue early stages of the AIDS epidemic, CATIE gave 12 was the first published out of the TIE office. I created me purpose and held researchers like me accountable to PLWHAs in everything we did. a subscription database on an old WordPerfect program, CATIE played a critical role in bridging the divide learned how to desktop, started to help with co-ordinating between activism and evidence, and gave a valid, the French translation, trained a group of volunteers, and in respected voice to the HIV-affected community. no time we were stuffing envelopes and distributing the pub- – Steffanie Strathdee lication across Canada and beyond. It was some time before Sean was hired as a CATIE staff member, but he had already laid the foundation for establishing TreatmentUpdate team of volunteers rescued me. They began assembling files Protesting AAN! members Tim McCaskell (on mic) and Glen Brown (megaphone) as CATIE’s flagship publication. of treatment information for me to use when answering telephone requests. I learned about HIV treatment as fast as I At about the same time, PHAs, frontline workers and oth- could, advertised specific times for people to call, and the ers began calling the TIE Project office telephone inquiry service was born. with questions about HIV treatments. We hadn’t formally planned to start up a treat- It was a good thing, too, because the treatment information “hotline,” but as a new ment hotline was the main way that the organization committed to exchanging TIE Project had direct contact with PHAs. HIV-related health information we need- Over months of taking calls, I not only ed to be able to respond to people’s ques- learned about HIV treatments, but about tions. At first, we thought about estab- how complex people’s needs were and lishing treatment-information “buddies” how their questions about treatments were by adapting the model of the successful embedded in broader health and life con- Casey House buddy program to treatment cerns. Soon it became clear that we needed information but, for liability reasons, we to think of ourselves not simply as provid-

AAN! calls for government support for National AIDS Strategy decided against it. In the end, a small ing discrete answers to discrete questions,

6 1983 National Ad Hoc Task Force The first Canadian AIDS After its inaugural public World Health Organization (WHO) Cases of AIDS reported in on AIDS, established by case from outside a known meeting in April, AIDS begins global surveillance of AIDS Canada, 15 European countries, Health and Welfare Canada, ‘risk group’ – a 42-year-old Committee of Toronto (ACT) Haiti, Zaire, seven Latin America meets for the first time heterosexual dockworker in is formally established, the countries and Australia Nova Scotia – is reported first ASO in Ontario REMINISCENCE BY GORDON WASELNUK but as providing a more holistic and sustained form of information and advice that Haven Of Hope addressed HIV, treatment and health in broad terms. As one of the founding members of lishment and there was a lot of mistrust, primarily because our the Treatment Information Program friends and lovers were dying and nothing seemed to be work- One immediate response at BCPWA in Vancouver almost 20 ing. The early established medical therapies did more harm years ago, I recall the early years than good. Sean Hosein was one of our lifelines and we were to that insight was the es- of HIV as ‘the dark ages’ because calling him regularly for information and also to share ideas. tablishment of The Positive there was very little in terms of ther- He was always very supportive and encouraging in the midst Side. Created by a group of apy and support. of this darkness. He had his finger on what was going on and CATIE volunteers in 1991, was very patient and caring. Sean was one of our trusted allies. The idea of working with your doctor, being at the table mak- the publication responded We did not have much in terms of good therapies but we were ing decisions and being heard, was still a distant dream. We determined to survive. Sean Hosein and CATIE were a lifeline to a demand for information were a bunch of frightened gay men trying to come together for us and a haven of hope in a dark time. AAN! launches the TIE (Treatment about complementary and Information Exchange) Project, and trying to survive. We felt alienated from the medical estab- precursor to CATIE alternative therapies that expressed the real-life experiences of PHAs, at a time when there were few medical options and little information about the use of complementary therapies in the context of HIV.

The depth and breadth of treatment information and materials that CATIE has available for people living with HIV and the organizations that serve them is amazing. Your work makes our work locally much easier. – Debra Jakubec Sean Hosein

7 1984 Canada forms national task force on AIDS Montreal AIDS Resource Committee/ Comité Sida Aide Montréal (CSAM) is Heterosexual AIDS epidemic Association des Ressources formed from a group from MARC/ARMS reported in Africa Montréalaises contre le Sida (MARC/ ARMS), the first community AIDS resource in Canada, is formed One of my proudest moments at CATIE was securing a grant that helped put the vision of a more holistic approach to treatment information into place by providing funds to create the first version of Managing Your Health. The application went to the AIDS Prevention Program of the City of Toronto Department of Public Health in early 1991. By that time, it was clear that AAN! needed to remain at arms length from government funding, so the TIE Project became incorporated as a distinct organization with a new name: the CATIE staff and community partners with new publication, Managing Your Health, Community AIDS Treatment Information Exchange. 1993; MYH, 2010

In the past, the AIDS Prevention Program had only funded HIV prevention projects. To get around that problem, we I left my position as co-ordinator of CATIE toward the end argued that secondary prevention – preventing the progres- of 1991 but remained involved with the organization and sion of HIV to AIDS – was part of the Public Health De- joined the board in 1993. I remember the years that followed partment’s mandate. Long before funders began to require as a period of major transition for the organization. Shortly research evidence to support funding requests, we cited after the TIE Project had been established, George Smith research that showed that the most common reason for not and other AAN! members began to lobby the federal govern- AIDS Update, Sean Hosein’s news sheet, becomes TreatmentUpdate, January, 1989 testing for HIV amongst urban gay and bisexual men was ment to establish a national treatment registry for HIV. After the belief that there was no effective treatment. We argued national consultations held in 1992, the federal government that the HIV Health Handbook, as we called it then, would committed to establishing a national AIDS Treatment Infor- For ten years, the Federal government failed encourage voluntary HIV testing by describing health- mation Service (ATIS) as part of its National AIDS Strategy miserably in setting up its national AIDS treatment management strategies for PHAs. The funding we received (Phase II). The vision was of a service that would provide registry. Finally (and thankfully) it gave the job helped us hire CATIE’s second staff person, Brent Patterson, reliable, up-to-date treatment information for PHAs and ser- to an activist-created Toronto group, CATIE. to oversee the creation of the publication. In 1993, Managing vice providers across the country. ATIS was plagued with a – Tim McCaskell Your Health was published. series of false starts and mishaps, including a rather public scandal over a failed attempt to establish it at the University

8 1984 1985 The discovery of HTLV III (later First AIDS Awareness Week held First Canadian Conference First International Conference Canadian Red Cross begins named HIV) is formally announced in Toronto, and the first in Canada on AIDS held in Montreal on AIDS held in Georgia, USA testing all blood products and is seen as the probable cause declared by a public official for HIV of AIDS. A test is soon established (Toronto Mayor Art Eggleton) to detect antibodies to the virus REMINISCENCE BY LINDA GARDNER Always the Big Picture Banner showing the early logo for the Community AIDS Treatment Information Exchange We always saw CATIE as part of a big- people as possible, including the most marginalized. And this of Toronto. I remember how those of us at CATIE were anger picture -- as part of the radical, empowerment became a vital principle of the overall move- gry at the failure of established, well-resourced institutions progressive HIV/AIDS movement. ment. Mobilizing around treatment highlighted the desperate CATIE arose out of PHAs’ need to need for better research and treatment. to launch ATIS. We convinced ourselves we could do a bet- understand and manage available ter job and under the leadership of Wayne Hellard, CATIE’s treatments in a very desperate pe- Out of AIDS ACTION NOW! and other groups and affiliations, executive director at the time, we submitted a successful bid. riod: there were few treatments and we joined together to build a broad movement not just for bet- Things were never the same. so many were dying. ter treatment, but for all the other social and policy changes needed to address the crisis. CATIE was dedicated to serve Collecting and mobilizing information on treatment was vital and support the health and empowerment of PHAs, and in its There were the obvious changes and challenges: new hir- to enabling people to win some control over their health and support for policy change, it was also, always, deeply political. ings, a technological ramp-up, expanded French-language lives. From the start, CATIE worked to be accessible to as many capabilities, and planning out what ATIS, which was

Grown out of a grassroots movement of affected communities striving for an informed and empowered response to choose and access HIV treatment, CATIE has matured into an important resource to many diverse community efforts throughout the country, including the Toronto Ethnoracial Treatment Support Network. Congratulations and thanks! – Dr. Alan Li

9 1986 First commercial blood test for Discovery that HIV can be Rock Hudson becomes the first Canadian AIDS Society The Toronto PWA Coalition HIV is licensed by the US Food passed from mother to child major public figure to die of AIDS (CAS) established formed and Drug Administration (FDA) through breast-feeding eventually absorbed into the newly named Canadian AIDS Treatment Information Exchange, would look like. But the The need for a publication like Managing Your Health based both on medical knowledge and the most vexing issue I recall was about governance. CATIE personal experiences of people with HIV seems had long been directed by a hands-on local board of PHAs, obvious, but no one before its publication had and community members intimately involved in the day- collected and written down all this information. We to-day running of the organization. With the transition to a wanted people with HIV to know that there were national organization, that approach came into question. I things they could do in order to live longer and remember endless discussions into the wee evening hours healthier lives. We may take this for granted today at board meetings where we debated different governance Wayne Hellard submitted a successful bid for federal funding to manage a but it was an important message when Managing national treatment information service for people living with HIV/AIDS. models. In the end, it became clear that a policy model of Your Health was first published in the early 1990s. board governance with national representation would be – Brent Patterson required and that we could no longer imagine or relate to CATIE as a small, local, community-based organization. ed mandate. CATIE staff and volunteers are still thinking That January day in 1990 when I walked into that bare of- creatively about how to link experiential knowledge with fice space on College Street, I had no idea how much CATIE scientific information, and about how to present HIV as a would accomplish and how much it would define the trajec- chronic, manageable infection without erasing the reality tory of my own work life. When I look back at the early years of illness. They are still working through questions about of CATIE, I am amazed at how much we were able to do the relationship between HIV prevention and treatment and with so little. Many of the initiatives that we worked on about how to respond to the broad social context of people’s in the early 1990s – TreatmentUpdate, the telephone inquiry health and treatment information needs. I’ve learned and service, Managing Your Health, and The Positive Side – have benefitted from these discussions tremendously. I hope that continued in one form or another to this day. they continue to unfold, to raise new challenges, topics, and Left: The first magazine-style issue of The Positive Side, Fall/Winter, 2001; questions as CATIE changes and develops in the years to The Positive Side has a long tradition of putting a face to HIV in Canada, It seems to me that many of the key debates we had as part of come. Congratulations on 20 fine years. n with articles written by and for PHAs. Shown here: Editor David McLay establishing these initiatives continue to be explored even as and long-time contributor and former editor RonniLyn Pustil. CATIE moves forward with new challenges and an expand-

10 1986 1987 First Canadian AIDS Research CPHA first funded to do education Canada’s first AIDS Walk Ontario AIDS Network FDA approves first anti- Conference held in Toronto and awareness work and the organized by the Vancouver (OAN) is formed retroviral drug, AZT National AIDS Clearinghouse PWA Coalition on the is established in April Stanley Park Seawall REMEMBERING George Smith May 7, 1935 – Nov. 6, 1994

If I could put it all into a sentence, Canada’s first AIDS activist group – AIDS ACTION NOW! In addition to all of this work, somehow George found time I would say that George Smith was Their demonstrations, street theatre and guerilla press con- to be my mentor, tutoring me on a wide range of subjects one of the most brilliant people that I have ever met and that ferences were always successful in garnering sympathetic from the principles of adult education to politics, media he was always a supporter of the oppressed. But even that media attention and, ultimately, public support. analysis, mathematics and philosophy. He would always sentence could not do justice to George’s massive legacy, not be interested in making sense of the research papers that I just to the struggle against AIDS but to human dignity. Next, George, together with other activists such as Mc- brought home almost every night from my foraging in the Caskell and University of Toronto professor Michael Lynch, University’s Science library. He described this work as “Go- George graduated with distinction from McGill University pressured the Federal bureaucracy into allowing promising ing to medical school at night.” Our medical allies nodded and he was encouraged to apply to Harvard University and in mirth and wonder. experimental HIV therapies into Canada so that doctors to McGill’s medical school by his professors. Instead, he could treat their patients. George helped to draft policy pa- chose a life of political and sociological enquiry. He used My partner George passed away in November 1994, before pers that would contest and rewrite the rules for conducting his training as an ethnographer to make visible the hidden HAART was available. But thanks to the nutritional exper- clinical trials with HIV-positive people in Canada, making world of agencies that controlled people’s lives. George put tise of Chester Myers, PhD, the Traditional Chinese Medi- them fairer by discouraging the use of placebos. his skills and findings in the service of despised minorities cine of Dr. David Bray, the experimental therapies made – initially these were gay men in the late 1970s and early available by Doug MacFadden, MD, PhD, and the knowl- Being an ethnographer allowed him to penetrate the inner 1980s, later to be followed by HIV-positive people. edge that I had accumulated over the years, we were able to sanctum of bureaucracies, medical associations, universi- preserve his intellectual functions and give him good qual- ties and corporations. He was able to take advantage of their In the mid-1980s as the AIDS epidemic blossomed across ity of life until the very end. competing interests to make them serve the treatment needs Canada, governments of the day were largely indifferent to the suffering. If they paid any attention to what was called of PHAs. We have lost so many gracious, talented, brilliant and 11 ‘the gay plague,’ it was to make sure that HIV did not break beautiful souls to AIDS. They would be proud of what has out of its initial ‘risk groups’ and infect the ‘innocent.’ One of George’s legacies is CATIE, which together with been achieved and accomplished. The memory of their lawyer Alan Cornwall, he co-founded to help meet the com- struggle in the face of so much adversity is a testament to To shift the focus to helping people with HIV, George used plex and changing information requirements of HIV-posi- the resiliency of the human spirit. It inspires me to this day. his training and knowledge to form a remedial and grand tive people. George did all of this work while doing the re- – Sean R. Hosein strategy. He brought diverse activists together and, with search necessary for two PhDs at the University of Toronto. community activist and intellectual Tim McCaskell, formed We can only marvel at such drive and vision. THE MIDDLE YEARS BY GLEN BROWN

HAART and the Evolution of Therapies 996 was, to put it mildly, an interesting year to launch a national HIV treatment information service. I came on board as CATIE’s Director of Programs and Services at the beginning of 1996. By that point, most of the hard slogging 1had been done to get the national service ready to launch. The national consultations had been done and the results analyzed. Infra- Progress had been tracked with marathon weekly team ment Information Network (as it was then called, one of many structure – phones, computers, desks, a photocopier the size meetings with board and staff involvement (one of my first nomenclatures through the years) was open for business. of a freight train – was in place. An information manage- managerial decisions was to abolish those meetings; many ment system had been meticulously designed and developed, were grateful!). Phone call volume was at first slower than we had antici- along with state-of-the art information technology. Staffing pated, but it grew steadily. At the same time we increased was mostly in place, and the Treatment Information Coun- By the beginning of February, we were as ready as we were our print resources, especially fact sheets, to respond to the sellors (TICs) had gone through a rigorous training program. ever going to be. We threw the switch. The HIV/AIDS Treat- most common inquiries coming in on the phone lines.

12 1987 Activist Kevin Brown, founder WHO develops first global Toronto People with AIDS (PWA) AIDS becomes first disease Diana, Princess of Wales, is of the B.C. Persons with AIDS strategy on AIDS Foundation is incorporated ever to be debated at the photographed touching a Society (BCPWA), lobbies federal UN General Assembly person with AIDS, creating government for access to AZT a media frenzy REMINISCENCE BY BOB GARDNER Back in 1990 when I was diagnosed with HIV, it was reassuring and heartening to know that CATIE, incorporated in the same year, was there Transforming Health as a kind of ‘lifeline.’ CATIE was one of the very few entities I was aware of that made me feel Beyond its immense and immediate These transformations have made an impact far beyond HIV/ remotely connected to the living world. When contribution to keeping people alive, AIDS, and that is a huge legacy about which CATIE and other CATIE has been part of two lasting AIDS activists can be justly proud. we dared to hope, CATIE was there to answer changes to health and healthcare. our questions and share our experiences. By being part of – Trevor Stratton a movement de- manding research to find treatment when Then came Vancouver. In the summer of 1996, the Interna- there was none, we transformed the nature of research. No longer were research priori- tional AIDS Conference changed the game. Fragments of ties defined solely by financial or intellectual hope over previous months (each reported by Treatment-Up- concerns – no longer defined by profession- date) reached the tipping point at the conference. Highly Ac- als in white coats and isolated labs. People tive Antiretroviral Therapy (HAART) was working far bet- living with the condition became part of driving the research agenda. ter than previously thought. People with HIV were retaining their health. More miraculously, people with AIDS were PHAs and AIDS activists also redefined regaining their health. Could the elusive goal of a chronic healthcare: building on the legacy of the women’s health and other movements, manageable illness be in sight? Could a cure be in sight? PHAs mobilized to empower themselves individually and collectively, with the lat- The shift that began with Vancouver would have implica- est knowledge to be able to negotiate and tions for CATIE and for treatment information for the manage their own care. This totally transformed the relationship between provider months and years to come. Treatment information was no and the person needing care. It also made longer about extending lives; it was about saving them. At the idea of the passive patient and the om- CATIE, this was not just about the people who used our ser- niscient doctor an outmoded notion. vices. It was about us. People living with HIV on staff,

13 1988 AIDS Community Care Montreal First AIDS Candlelight Memorial AIDS ACTION NOW! founded World Summit of health Federal Minister of Health and (ACCM)/ Sida bénévoles is organized in Vancouver in Toronto; publishes Pride Day ministers from 148 countries Welfare Jake Epp is burned in Montréal is formed by members broadsheet on possible treatments held in London, England to effigy in an AAN! demonstration, of the English Services develop an AIDS Strategy held during a national conference Committee of CSAM and is on AIDS, protesting treatment incorporated in February issues and a lack of overall policy commitment on AIDS The other game-changer surrounding the Vancouver con- Congratulations, CATIE, for 20 years of ference was political. Earlier that year, the ruling Liberal commitment, growth and vision. The Aboriginal government had announced that the National AIDS Strat- AIDS movement acknowledges the respectful egy would not be renewed when it expired in March of 1997. manner in which you include Aboriginal people living with HIV/AIDS, understanding Instead, HIV/AIDS would be folded into Health Canada’s and supporting Aboriginal ways, knowledge, “population health” strategy. The government would make traditions and culture. CATIE brings hope no commitments for dedicated AIDS funding beyond the to the people and is a strong foundation coming year. in the HIV and hepatitis C movement. – Margaret Akan The Vancouver conference became a magnet for activists’ response to this decision. Activists across the country – ini- tiated by AIDS ACTION NOW! - rounded up funding and on our Board, our advisory committees, and among our per- signatures for a full-page ad in The Globe and Mail on the sonal friends and families were facing a future far different opening day of the conference condemning the government’s than that imagined just a year before. abandonment of the fight against AIDS. Prime Minister

With every new addition to the treatment arsenal, the complexity of information increased exponentially. Callers and I immigrated to Canada in 1990, but it was web visitors now wanted to know which combinations were only after I joined CATIE seven years later that most effective at which stages, what side effects were in- I started to feel that Canada was my second volved, what sequencing possibilities were available, what home. While working at CATIE for 11 years, I was coming next in the pipeline, and many other challeng- not only improved my understanding of Western ing questions. culture, but also, more importantly, I came to understand a true Canadian value – that everyone And, at least temporarily, the focus of treatment information has the responsibility to care for the community. would be located almost exclusively within the medical and – Lin Ai AAN! poster pharmaceutical model.

14 1988 1989 The National Coalition of People Casey House hospice WHO announces that December AAN! publishes first issue of AIDS activists seize centre stage Living with HIV is formed in Toronto opens 1 will be the first World AIDS Day AIDS Update (later renamed at the International AIDS TreatmentUpdate) by Sean Hosein Conference in Montreal: AAN! calls for the federal government to establish a national treatment registry REMINISCENCE BY DON SHORT CATIE’s move to include a broader range of services as a national Knowledge Exchange Broker, including addressing hepatitis C information, was a Hitting the Ground, Running natural one. CATIE has always been in the forefront of change, quickly adapting to meet new needs. Now that I’ve been living with the HIV virus for five years, – Terry Pigeon I look back at the journey and can see that I hit the

ground running. Getting ©iStockphoto.com/JPecha Jean Chrétien declined to attend the conference, so activists educated was a personal vented their anger at Health Minister David Dingwall. When quest, and that propelled Dingwall rose to speak, all of us on the main floor of the con- me to get involved with my lo- vention centre turned our backs on him and chanted “shame.” cal AIDS Service Organization, which in turn offered opportunities to connect with CATIE in their delivery of capacity-building workshops, ‘train the trainer’ It was not a well-kept secret that I and other CATIE staff programs, and body mapping facilitator training. attending the conference (on Health Canada’s dime) played The information delivered was trustworthy and reli- key roles in supporting the activism at the conference. I, able – and relevant to my own experience living with along with a brilliant colleague from AIDS Vancouver, fa- HIV. I took advantage of these opportunities which cilitated daily activist meetings, produced leaflets and me- became integral to my growing knowledge and un- dia materials, and provided other logistical support. Several derstanding of the viral replication cycle, HAART medications and, most important, managing my illness. other CATIE staff participated in daily activist strategy ses- The accessibility of CATIE’s services and resources to sions, helped organize demonstrations and took on other their membership has benefited the PHA community roles as needed. in Canada and beyond its borders. Through CATIE, I have networked with amazing individuals from across the country. I now view CATIE as a reliable friend… The advocacy campaign eventually resulted in the govern- an organization I can turn to for information, support ment reversing its decision (just prior to the 1997 election) and a gentle push to accept new challenges and take and launching consultations to determine the shape of the advantage of the opportunities that lie ahead. new Canadian Strategy on HIV/AIDS (CSHA). That

15 1990 Ottawa announces compensation Emergency Drug Release Program Federal government announces Canadian HIV Trials Canadian Association for for people who contracted HIV (EDRP) opens to allow access its National AIDS Strategy, Network established HIV Research founded from tainted blood products to unapproved treatments for including the establishment of AIDS-related conditions a national treatment registry and a clinical trials network REMINISCENCE BY CAROL MAJOR Increasing the Uptake of Viral Load Testing

In the early days of the Viral Load Testing One of the highlights was taking the Viral Program, there were concerns about Load Brochure to a national level. This oc- testing uptake. After the first six curred long after I retired from the public months of testing, the number of PHAs health unit and began working at the Ontario getting a viral load test was only about HIV Treatment Network, but was still involved half of what had been expected. The Vi- in national HIV issues. Based on the success ral Load Evaluation Committee called on of improving uptake in Ontario, the Canadian CATIE to help. Association of Clinical HIV Laboratories Spe- cialists (CACHLS) invited CATIE to modify the Quickly and very collaboratively, the CATIE staff developed a client- Ontario brochure so it could be used in all friendly brochure that described the test and its benefits for HIV provinces. This was the beginning of care. It was included with all HIV positive test results. We also a new relationship developed a travelling road show for community organizations to for CATIE, one that promote viral load testing for those living with HIV. I recall several continues and en- occasions when Craig McClure and I would do our presentations sures that diagnostic and then do Q&As for community members. It was a great way and monitoring infor- to get out and meet the very people who we hoped would access mation reaches those the service. who need it in a user- friendly format. Slowly but surely, the message spread, so that the number of PHAs accessing testing was closer to 80 per cent of the eligible population. This was a great success and showed that increasing PHA awareness of services could increase uptake of testing. It was a real pleasure to work with the CATIE staff, whether developing educational material, sharing a presentation or celebrating our successes.

16 1990 1991 AAN! establishes the The TIE Project separates Canadian HIV Trials Network Red ribbon becomes international First Canadian AIDS Treatment Information from AIDS ACTION establishes a Community Advisory symbol of AIDS awareness Awareness Week launched Exchange (TIE) Project, precursor NOW! and becomes the Committee to vet all its trials to CATIE, and Health Minister Community AIDS Treatment Perrin Beatty announces funding Information Exchange (CATIE) for a national treatment registry as part of the National AIDS Strategy

C CATIE In the HIV and AIDS movement in Canada, CATIE has established itself as an integral and invaluable national partner with CAAN. Through its support for the aspirations of Aboriginal AIDS service organizations, and efforts in establishing meaningful engagement, the voices of Aboriginal people are better heard cross-culturally, bridging the divide. – Ken Clement

Strategy guided the federal response to HIV until 2004 (when it was succeeded by the “Federal Initiative on HIV/AIDS”). CATIE played a central role in those consultations – the first phase in CATIE’s ongoing role as a “national partner.” All national partners – organizations or networks with a national mandate related to HIV/AIDS – have continued to meet regu- Sean Hosein, CATIE’s Science and Medicine Editor and editor of Treatment- Update, provided information to frontline workers larly and provide a collective voice to the government.

Another phenomenon was unfolding around the same time. CATIE’s comprehensive peer HIV training The Community AIDS Treatment Information Exchange launches provided me with the skills to deliver This passing fad called the Internet (the “information super- its phone inquiry service, with Internet access in its sites accurate treatment information on the CATIE highway”) was beginning to look like it might be around phone lines and later, through Africans in for awhile. Fortunately, CATIE was blessed by a number of ing the platform that was to make CATIE a world leader in Partnership Against AIDS, to deliver HIV prescient staff and Board members who recognized the po- Internet-based HIV service provision. services to African communities in Toronto. tential this emerging format could have for information de- – Fanta Ongoiba livery and information sharing. CATIE’s head IT guy at the Over the months and years that followed, CATIE experi- time, Paul Merriam, deserves particular mention for build- enced major successes but also faced growing pains

17 1992 CATIE trains people (peers, CATIE Forums (information sessions Era of desperate experimentation in drug FDA approves first successful volunteers) on how to answer phone conducted by Sean Hosein and combinations, with numerous but only combination of drugs to treat AIDS inquiries about treatment regimes doctors that proved popular into the modestly effective drugs coming on the mid-90s) launched at The 519 Community scene, including AZT, ddI, d4T, 3TC and ddC Centre, Toronto [519 Church Street] CATIE played an important role in identifying that harm reduction had to be integrated into HIV treatment and care. Work was also done to understand the needs of HIV-positive drug users and to help increase their access to healthcare and HIV treatment. Collective action on the part of a number of associations and individuals was required, and what we learned from users was shared with other health care providers and used to demand government services. – Brent Patterson

and challenges. We expanded our range of print and Internet resources and engaged more with health care professions. We were lauded for the quantity and quality of our French language materials. Our web site traffic hit levels we could not have predicted – both in Canada and internationally.

One significant debate was what we meant by the- “Ex change” in CATIE’s title. What role does lived experience play in providing “evidence-based” reliable information? E-learning modules featuring characters Mico and Tallah are one of the more recent If lived experience is evidence, how does an information online learning tools developed by CATIE. Early on, CATIE championed the use of the Internet for information exchange management system reflect that? As CATIE became better known for its skills in assembling and translating scientific data, would PHAs also look to CATIE to facilitate exchange CATIE Fact Sheets, a long-standing key print resource, addressed the with their peers? questions first asked by those calling into the confidential phone service

18 1992 Antioxidants emerge along with other CDC revises list of AIDS-defining Canadian HIV/AIDS Legal Ontario Ministry of Health establishes complementary drugs; in the next 2-3 illnesses to include some that primarily Network established anonymous testing sites years, combinations of antioxidants will be affect women and drug users taken in an attempt to treat opportunistic infections arising from HIV such as PCP, Toxoplasmosis, anal and genital herpes, vaginal and oral fungi and KS tumours

C CATIE REMINISCENCE BY CATHERINE BAYLIS Life-Saving Intervention

This story is about an Aboriginal woman help Brenda. The person (a male) I spoke who lived with HIV for many years before with was very thorough in listening to passing away some years ago. I don’t me; he was researching while we spoke recall the exact date that this story took and he was consulting someone else at place but I think it was four or five years CATIE. I felt so supported and when the ago, perhaps even earlier. It was around person at CATIE said that he was very the time when Abacavir was new on the sure she was having an allergic reaction ©iStockphoto.com/twilightproductions scene. Brenda Loyie had just started a new to Abacavir, I believed him. He was ada- treatment regime which included Abacavir. Her local family physician mant that I needed to stop Brenda from was/is one of the doctors in Prince George that we know we can taking her next dose, telling me that the rely on. He is a strong advocate for Aboriginal people, for injection next dose may prove fatal for her, given drug users, for people living with HIV/HCV, and for the population we what was already happening. worked with. He goes above and beyond for patients. He even visited Brenda at her home. I immediately went to her place and spoke with her partner. There was a lot When she began the treatment with Abacavir, it was pretty much her of fear in not taking her next dose – that last regime to try; she had been on the HIV/AIDS rollercoaster for many it would jeopardize this possible last years. In and out of the hospital, she was now at home, and if I recall treatment option. It was a very difficult correctly, it was a Friday, late afternoon. She had been getting progres- decision to make but in the end, she did sively weaker, very tired and listless but adamant that she didn’t want not take the next dose of Abacavir, and to go back to the hospital. Brenda figured she just needed to be on we got her to the hospital. Her doctor her new meds long enough for them to make some headway. I can- later told me that she very likely would not recall whether or not I had a conversation with her doctor at that have died if she had taken the Abacavir. point. What I will never forget, though, is the conversation I had with Her blood pressure had dropped to an extremely dangerous level she passed away a year or so after this incident. The fact that she someone at the other end of the phone when I called CATIE. and other body functions were being impacted. lived through the Abacavir experience is due to the knowledge, the skill, the availability and the compassion of folks at CATIE, and we I called CATIE because, for whatever reason, things weren’t being Brenda did end up taking a different combination of meds that did are all grateful for the service and the people who provide it. figured out here in PG and I was trying whatever means I could to not include Abacavir. She continued to fight for her health up until

19 1993 CATIE launches a publication CATIE publishes first edition Ontario AIDS Network HIV spreading rapidly in Krever Commission is established focused on holistic medicine of Managing Your Health, (OAN) is incorporated Asia and the Pacific to investigate HIV in the – a precursor to The Positive Side in partnership with the Toronto Canadian blood supply People with AIDS Foundation. MYH was a groundbreaking book for empowering people living with HIV to take control of their health and well-being Indeed, during my era we suspended the peer counselling tion and supervision that phone line staff required to provide professionals rather than community-based models. I won- program because we didn’t have the right tools to ensure excellent service was not viable for part-time volunteers. I der whether the increasing effects of aging with HIV and quality control. The intensive training, continuing educa- think CATIE has developed some good responses to this with side effects may shift this dynamic once again. As challenge – in part by supporting local ASOs where peer PHAs encounter a wider range of medical specialists who exchange is more feasible, and in part by creating greater are unfamiliar with HIV, community supports may be in- emphasis on personal narrative in The Positive Side. creasingly attractive.

As HAART became more successful (and more complex), We struggled with how to provide information on comple- we were at times challenged by a less-than expected demand mentary therapies. Given the scarcity of “scientific” data on for the phone service, despite various attempts at marketing efficacy (both because the research is rarely funded and be- campaigns. I suspect that as HIV treatment came to be un- cause some therapies could not be studied with western medi- derstood more exclusively within a medical context, PHAs cal models of research) what does information look like? were increasingly seeking their information from medical What do PHAs want and deserve from CATIE? I think CAT- IE has done a fine job recently of navigating through those tensions with its current range of publications and services.

When I found out in 2002 that I had end-stage In my era, I was probably seen as resistant to expanding cirrhosis due to HIV drugs, I was sure my life information on complementary therapy information, and was over. CATIE was the first organization to indeed I regret not listening more attentively to those who listen to my situation, realize that other PHAs advocated for it. Part of my resistance lay in a philosophi- would soon be similarly affected, and to begin gathering treatment information on HIV and cal debate we never really engaged in explicitly: Is CATIE transplantation. Their encouragement gave me about empowerment or health promotion? Have we met our the support to approach other stakeholders mandate when people are well informed, or when people go like the OHTN and CTAC, all who have worked on therapy (pharmaceutical, complementary or otherwise)? consistently and tirelessly on this issue. I was nervous that some efforts to provide information about – Greg Robinson complementary therapies would be seen as attempts to pro- Through the years, CATIE addressed questions concerning complementary therapies in addition to those about HIV drugs in clinical trials and side effects mote those therapies.

20 1994 1995 The Greater Involvement of Research shows AZT reduces Plan formulated to replace CDC announces that AIDS has FDA approves a new family People Living with HIV (GIPA) risk of vertical transmission of WHO’s Global Programme on become the leading cause of anti-retroviral drugs Principle formalized at Paris AIDS HIV from mother to child during AIDS with the United Nations of death among Americans called protease inhibitors Summit, with 42 countries signing pregnancy by two-thirds Programme on AIDS (UNAIDS) aged 25-44 years on to “stimulate the creation of supportive political, legal and social environments” for PHAs

C CATIE REMEMBERING The Canadian Association of Nurses in AIDS Care (CANAC) has enjoyed a long and mutually beneficial relationship with CATIE. From providing valuable insights at our conferences, to showing leadership and collaborating with us in developing Chester Myers a ‘go-to’ site for nurses seeking HIV information, and inviting our nurses to participate on advisory Nov. 24, 1945 – Aug. 16, 1999 committees or review panels, CATIE has proven to be so much more than an organization that Chester Myers had a PhD in Chester was CATIE’s scientific advisor and his support houses great HIV information. It is great people biophysics. It sounds like a field and ability to attract volunteers catapulted CATIE into a who are knowledgeable, approachable and who of research out of a sci-fi movie, but what it really signi- centre for information on complementary therapies and obviously care about helping us improve the fied were two things: he was a very smart scientist and nutrition in HIV infection. Chester’s hard work laid the lives and care of our patients living with HIV. he had a deep knowledge of how the invisible cellular foundation for advocacy for the creation of the Natural – Brenda Done machinery that powers the body works. And Chester Health Products Directorate so that the government willingly put his special knowledge and skills in the would take natural health products seriously, regulating service of HIV-positive people across Canada. them for the safety of Canadians. As HIV treatment becomes more conclusively effective, and as “treatment as prevention” becomes more widely accepted To anyone who has come of age in the era of HAART, it Another legacy of Chester’s, together with former CATIE as a viable strategy, I suspect CATIE will continue to have seems hard to imagine what life was like without it. In board member Laurette Lévy, was the creation of The Pos- that philosophical discussion about the distinction between those days, the accelerated aging that came with AIDS itive Side magazine. In the early 1990s, the magazine was information and promotion. took hold swiftly. For some people, the knowledge that focused mostly on complementary therapies and the lived Chester gave about antioxidants, nutrition and comple- experiences of PHAs. It was printed on newsprint and I’m very proud to have played a role in the formative years mentary therapies was all that was available to slow the published erratically. Now, The Positive Side has morphed of CATIE as a national entity. I am impressed with how decline of the immune system. into a Canadian, full-colour magazine that speaks to the far CATIE has come and I’m optimistic about CATIE’s many needs of PHAs in both English and French. future. n Chester would give talks across Canada to HIV-positive people, teaching them about nutrition, how to get enough Chester was from Atlantic Canada and once a month protein – a particularly important task in a disease that he, several volunteers and I would have a lobster din- 21 caused wasting – and which supplements to use. He cre- ner. He used this opportunity to gossip and also teach ated brochures on key supplements with amusing graph- us about fundamental biochemistry, so Chester was CATIE named a partner in the Canadian AIDS Strategy on HIV/AIDS, funded by Health Canada, ics. As treatments for HIV became available, he began to both a friend and tutor. He passed away in 1999 from and assumes direction for the national treatment registry focus on ways of reducing their toxicity. His ideas in the complications due to lymphoma. If Chester were around late 1990s about preventing some of the complications today, he would be proud of how much of an impact that now seem commonplace – cardiovascular disease, his legacy has had and how much CATIE has evolved. diabetes, kidney dysfunction – are still relevant today. – Sean R. Hosein THE RECENT YEARS BY LAURIE EDMISTON

An expanded, national mandate hen I started as Executive Director at CATIE in 2003, I was excited by the opportunity to work nationally. I had worked in HIV since 1987, initially with street youth at Youthlink – Inner City in Toronto (before Wtreatments were available), and, immediately prior to arriving at CATIE, at the Toronto People with AIDS Foundation (PWA) where ment information staff when needing treatment information With the launch of the national treatment information ser- we were fortunate to have a full-time staff dedicated to pro- to share with a client – but I was acutely aware that the vast vice, CATIE quickly grew from a staff of two to more than viding treatment information to PHAs. I had a lot to learn majority of PHAs did not have the benefit of accessing treat- 30. Talented and enthusiastic staff were hired and systems and hoped that my front-line experiences providing practical ment information face-to-face. developed to support the increased activity and deliverables. services to positive adults and marginalized youth would be Unfortunately, this challenging task coincided with tensions useful at CATIE. At PWA, CATIE’s website, resources and CATIE’s first decade was marked by profound change. The between CATIE and the funders at Health Canada. phoneline services were a first reference point for our treat- last decade has been no exception.

22 1995 1996 WHO estimates that about Pacific AIDS Network AIDS Coalition of Nova Scotia UNAIDS created (made up of CATIE begins full-time 18 million adults and 1.5 (PAN) begins as a project of (ACNS) is incorporated the AIDS programs of the UN phone inquiry service, with million children have been AIDS Vancouver Island Development Programme, paid staff to help train others infected with HIV since the World Bank, UN Population in on-the-phone counselling beginning of the pandemic Fund, UNICEF and UNESCO)

C CATIE REMINISCENCE BY BRIAN HUSKINS Prairie Snow Storm

Eighteen years ago, when I was President So, with my car fully loaded, I set out on my trek – one that would up at CATIE on time. And I worked at a job I loved for three and a of the Canadian AIDS Society, I recall be fraught with blinding snow, freezing temperatures, endless rural half years before moving on to start a consultancy business once CATIE starting to find its way onto the roadside cafes and near misses with the inevitable transport trucks. again. scene. My respect for its work, and The ‘highlight’ of the trip was the day outside of Wawa, Ontario interest in watching it evolve from a when the OPP ordered me off the road and back to the town to Beyond CATIE being there for the information I have needed over community-based organization to its wait out the snowstorm. The snow was so deep that even the large the years, it was an instrumental element of my move east and my starting a new life. For that, I will always be thankful. The good emergence as a national supplier of HIV/ trucks were having problems, let alone my U-Haul. work continues and beyond my personal story, I know without a AIDS information, has never waned. In fact, CATIE played an im- What a dilemma! It was a Sunday morning and I had to start my doubt that CATIE continues to change the lives of many people and portant role in shaping my professional and personal life. new job on Monday morning in Toronto! As it turns out, I did show communities.

My history with CATIE really started one January day in 2002 – one ©iStockphoto.com/Casarsa that will always stand out in my memory. It was one of those crazy prairie winter days where the snow was piling up on the streets in front of my house, it was -20c and there was no end in sight. Parked by the curb was my Jetta with the largest U-Haul trailer that they could legally attach to it; packed with my most treasured earthly belongings, ready for my 2,700-kilometer cross-country trek to Toronto!

What precipitated this move? Two weeks before I had interviewed for a job with CATIE and had been offered the position. Toronto was a long way from Calgary but I just knew this was an opportunity that I had to grab. I was determined to make my first day of work no matter what obstacles might be thrown up in front of me.

I looked forward to the opportunity that lay ahead. Working for CATIE as the Outreach and Partnership Coordinator in a new city was going to be a welcome change of both geography and focus.

CATIE launches its web site and CATIE-News launched FDA approves new class of anti- Attendees at the International AIDS travels to various regions, teaching retroviral drugs (non-nucleoside reverse Conference in Vancouver learn people how to access and use the Internet transcriptase inhibitors, or NNRTIs) of success of Highly Active Anti- Retroviral Treatment (HAART) Between Glen Brown’s departure as executive director in 1999 and my arrival in 2003, Anne Swarbrick was at the helm When CATIE was founded, the needs were very of CATIE. I was fortunate to arrive after she had implement- different from today, with few if any effective drugs, limited access to them, and too much ed the majority of the Health Canada-mandated “corrective unbalanced, ill-informed and biased information actions,’ and relations with our primary funder were on more circulating in the community. CATIE has adapted stable ground. Additionally, Anne had completed the restruc- well to change and its hallmark over the years has turing of CATIE’s board to reflect its national mandate and been scientific integrity and balanced information membership base. The board adopted its regional representa- on contentious issues, along with an obvious tion structure that continues to this day to ensure that CATIE compassion in providing advice to clients. is responsive to, and representative of, all regions of Canada. – Dr. John Gill

I continued my predecessor’s task of managing change. It was clear that in the last decade AIDS Service Organiza- William Naumovich, Anne Swarbrick and Bob Gardner tions (ASOs) were having difficulty staying on top of evolv- ing treatment information and increasingly referring their clients directly to CATIE for their treatment questions. Al- though we willingly respond to PHAs’ treatment questions over the phone and through e-mail, we are also aware that

As someone who successfully completed hepatitis C treatment before CATIE started its work, I know there was little support in those early days. CATIE has since provided knowledge and hope: two very powerful tools. – Harlon Davey Darien Taylor Shamim ShambeMiradam and Bruno Lemay

24 1996 1997 Highly Active Antiretroviral Therapy (HAART) becomes Canadian Treatment Action US reports the number of AIDS- UNAIDS estimates the number standard treatment for HIV infection: beneficial response to Council (CTAC) established related deaths has dropped of people living with HIV is treatment realized, with some showing remarkable progress substantially for the first time 30 million, much more than (the so-called Lazarus Effect of people ‘back from the dead’); previously thought; one in 100 some doctors erroneously consider HAART a cure for HIV, and people wordwide are infected, advocate a “Hit Hard, Hit Early” approach with the drug with only one in 10 of those knowing they are infected

C CATIE CATIE sets the national (and increasingly international) standard for comprehensive, credible, up-to-date plain-language treatment education resources for PHAs in electronic and print formats. ViiV Healthcare-Shire Canada remains committed to our long-standing partnership support of CATIE’s mission to help PHAs improve their quality of life through optimal management of their disease. – Lorne Fox

PHAs prefer to seek their treatment information support locally. With this in mind, we established dedicated regional

Educators who spend much of their time in their designated Melisa Dickie, Executive Director Laurie Edmiston and Jeff Reinhart region, training and building capacity in treatment informa- at the International AIDS Conference in Vienna, 2010 tion in ASOs to better serve their clients and their region. Intensifying our relationship with the regions in this way has also led to partnering with the existing HIV regional networks, supporting the development of regional networks in the Atlantic and Western regions, and holding Regional Educational conferences. In this way, we are able to reach significantly more individuals and focus specifically on regional concerns and priorities.

The most significant change in my seven-year-and-counting tenure at CATIE began in October 2007 when CATIE Tim Rogers, Melisa Dickie and Ed Jackson

25 1998 Canadian Aboriginal AIDS Outbreak of HIV occurs among Doctors start to notice the first Post-exposure prophylaxis (PEP) In 1997-98 period, Network (CAAN) established injection drug users in Vancouver drug-resistant strains of HIV pioneered in San Francisco CATIE has a clinical trials counsellor on staff As someone who works internationally, I have always been impressed with how well known CATIE is outside Canada. Especially in Francophone Africa, CATIE’s website is a precious resource. – Dr. Evan Collins

became the National HIV Knowledge Exchange Broker for prevention, care, treatment and support information. We are now responsible for the brokering of HIV prevention in- NOT JUST formation with a significantly wider audience including all frontline agencies working with at-risk populations. Addi- NEEDLES. tionally, we were mandated to create a national information Ordering Centre from the Canadian Public Health Associa- EVERYTHING NEW tion’s HIV clearinghouse service. EVERY TIME. Another enhancement to CATIE’s mandate has been the integration of hepatitis C prevention and treatment infor- PREVENT HEP C. mation, thanks to Ontario’s HCV Secretariat and the Com- munity Acquired Infectious Disease division of the Public Health Agency of Canada. In addition to developing HCV resources and providing HCV training, we’ve established a separate HCV website which includes information from all www.hepcinfo.ca 63>/B7B 7A regions on treatment access and support. 1-800-263-1638 ,OPXJOHIFMQT 1

In 2007, CATIE became the national HIV knowledge exchange broker for prevention, care, Over its 20 years, CATIE has evolved with the HIV epidem- CATIE enhanced its mandate in 2009 to include hepatitis C. treatment and support information, with a mandate A new hep C website was launched and, in 2010, 6{>/B7bS to launch a national Information Ordering Centre ic. The founding Treatment Information Exchange Project a new CATIE logo (top) reflected the expanded role 1041_CATIE_hepc_postcard6.indd 1 4BWPJS mBBJEF 16/6/08 2:20:55 PM 26 1998 1999 Canadian Working Group WHO announces that HIV/AIDS is CATIE renamed the CATIE web site surpasses Discovery that a single dose on HIV and Rehabilitation the fourth largest killer worldwide Canadian AIDS Treatment the one-million-hit of nevirapine is effective in (CWGHR) is formed Information Exchange and threshold and continues to grow reducing mother-to-child becomes a partner in the National transmission during pregnancy AIDS Strategy; CATIE structures a national board of directors

C CATIE Bravo CATIE! For 20 years you have been able to not only offer quality services in French, but also successfully establish partnerships with AIDS service organizations in Quebec! – Laurette Lévy committee of AIDS ACTION NOW! developed the Com- munity AIDS Treatment Information Exchange which finally became the Canadian AIDS Treatment Information Ex- change. We cherish our history and continue to mourn the loss of our founders and the many individuals who fought for treatment access and organized efforts to establish CAT- IE and other important HIV organizations.

2010 CATIE Staff. Back row: Michael Brito; Rachel Landauer; Anamaria Tivadar; Debbie Koenig; Lauren Plews; Mara Brotman; Zak Knowles; Christine Unfortunately, there is still much work to do. The continued Johnston; Heather Ann Kaldeway Row 2: Tim Rogers; Melissa Egan; Barry Plant; Flora Lee; Marites Credo; Jacqueline Holder; Stéphanie Lemyre; David McLay; Melisa Dickie; Sean Hosein; Dapeng Qi Row 3: Darien Taylor; Véronique Destrubé; Jeff Reinhart; Laurie Edmiston; Dave McKay; Ed Jackson Row 4: James infection rates among gay men, the fact that young people to- Wilton; Don Bapst; Shamim ShambeMiradam; Jim Pollock Not pictured: Michael Bailey; Laurel Challacombe; Albin Lopez; Tricia Smith and Joseph van Veen. day are less informed about HIV than they were 15 years ago, and that harm reduction has to be fought for in the face of overwhelming evidence of its efficaciousness, are just a few examples that the HIV sector cannot be complacent, and that as a movement must be sustained and strengthened. CATIE will continue to exercise leadership with our many partners n in the years to come. 2009-2010 CATIE Board Back Row: Yves Brunet; Lyle Watling; Ken King; Martino Larue; Laura M. Bisaillon; Harlon Davey; Ken Bristow; Daryle Roberts Front Row: Trevor Stratton; Noel Carney; Lydia Thompson; Don Short; Bill Downer; Peter Coleridge. Not pictured: David Swan.

27 2000 2001 G8 leaders endorse International Health Canada study of HIV treatment UN General Assembly holds groundbreaking The Greater Involvement of People Living Development Targets for HIV/AIDS, emphasizes the importance of Special Session on HIV/AIDS (UNGASS) with HIV (GIPA) Principle is endorsed by Tuberculosis and Malaria, and United Nations working with AIDS Service Organizations during which the Global Strategy 189 United Nations member countries as creates a Global Fund to fight these viruses (ASOs) and other frontline workers; CATIE Framework on HIV/AIDS is created part of the Declaration of Commitment on begins to develop capacity-building HIV/AIDS programs for regional organizations REMINISCENCE BY ROBERT NEWMAN Tom – 21, Healthy & Undetectable

My son Tom has been HIV-positive since Tom remained on Fuzeon for three years and maintained the unde- Today, Tom is 21, healthy, undetectable and on his way to Johan- birth and for many years went without tectable viral load until more and easier meds could be introduced. nesburg South Africa to work at an HIV/AIDS orphanage. the need for meds; sadly, his brother ©iStockphoto.com/acilo who was just one year older, never had that luxury and died at the age of seven. The ‘good’ drugs were not out yet and what little was available for paediatrics was not enough. He had been diagnosed at the age of two with zero T-cells.

When Tom started to take meds – that would have been in 1997 – he was about nine. The ‘wonder meds’ (combination therapy) were out in full force and Tom was one of the first children on them. Compliance was never one of my strong suits and, sadly, I blindly allowed my son to follow suit. By 2004, Tom had done all the meds that were available and built up resistance to the new meds that were coming out. Panicked, we made a last-ditch effort with a drug called Delavirdine; and it almost killed him.

Our HIV doc was unfazed by Tom’s near-death experience and wanted to try that same drug again. I was not having any of that and pulled Tom out of that clinic and called CATIE. I can’t remember whom I spoke to, but in one phone call I found out I could self-refer my son to Sick Kids Hospital in Toronto and also that the Pediatric clinic there was working with children and ‘salvage’ medications. Tom was welcomed into the clinic and put on Fuzeon and within three months, and for the first time in his 15 years of life, he had an undetectable viral load.

28 2001 UNAIDS reports more than 40 million First magazine-style issue of CATIE launches Plain & National Aboriginal Council on people are living with HIV/AIDS, half being The Positive Side launches Simple Fact Sheets HIV/AIDS established women, and 24.8 million people have died

C CATIE REMEMBERING Alan Cornwall October 4, 1961 – July 25, 1995

Alan Cornwall was an intelligent, he got involved in AIDS activism. I met and became friends Whatever the occasion and whatever the task, Alan had that ambitious, hardworking, gener- with Alan at Borden & Elliot when I joined the firm in 1990. gift to lighten the mood and make everyone laugh. He al- ous and caring man with a zeal for social justice. Born and It was when we ran into one another at Chuck Grochmal’s ways had time for his friends and family. He and Paul hosted raised in Windsor, Ontario, he attended Upper Canada Col- memorial at The 519 Community Centre in Toronto that we friends both at small parties and large, wonderful affairs. lege in Toronto and later received a Bachelor of Arts degree discovered we had much in common. We were both HIV from McGill University in Economics and Labour Relations. positive, both involved in the HIV community yet closeted He and I both left the firm in 1993 to go on long-term dis- about our serostatus at work. Alan had the added burden of ability with AIDS. Sadly, his partner Paul died shortly there- His passion for justice was expressed early on in a rigorous being gay in the relatively homophobic legal profession. He after. Borden & Elliot was extremely supportive of us, and and successful legal career. Completing the joint LL.B/ J.D. invited me to my first AIDS ACTION NOW! Steering Com- a few members of the firm helped out with CATIE’s Board program at the Universities of Windsor and Detroit where he mittee meeting, and we held the first meeting of what was to because of Alan. B&E held a gala fundraiser in our honour studied both Canadian and American law, he articled with become the HIV/AIDS Legal Clinic of Ontario (HALCO) in 1995, to which Alan took his new partner, Charles Roy. Borden & Elliot, a large Toronto law firm, where he was later in his home which he shared with his partner Paul Meagher. hired in Corporate and Commercial Law when he was called Alan continued his work in the HIV community as long as his to the Bar in 1988. While working full time, he also passed Alan and I were under a lot of stress working full-time as health permitted, including his position as co-chair of CAT- the prestigious Bar exams of New York State and Massachu- lawyers during a period of financial instability and layoffs, IE. He and Charles hosted a last party at their home after Gay setts. Alan was also a member of numerous bar associations, afraid that we might be fired if the firm found out we were Pride Day in 1995 but Alan was so ill that he had to sit up in including the Canadian Bar Association and L’Association HIV positive and devoting much of our free time to AIDS bed with an oxygen mask on to visit with his friends. He died des Juristes d’Expression Française de L’Ontario. activism. I remember, for example, working late at night at a month later on July 25, 1995, leaving an important legacy the firm, together with Bob and Linda Gardner, revising a to his friends, family and the AIDS movement in Canada. Alan was far more than an academic. His interests were brief to a provincial standing committee for the next day. – Maggie Atkinson 29 wide-ranging and they were pursued with equal passion. He was, among other things, an accomplished gymnast and pia- As a member of the Steering Committee of AIDS ACTION nist. He also had a love for languages, speaking and writing NOW!, Alan was a founding member and co-chair of HAL- French, Russian and some German. CO and CATIE. He was a representative on numerous government and professional advisory bodies on insurance, public It was during the time when he was seconded to be in-house health and HIV testing, and before various legislative com- counsel at the Registered Insurance Brokers of Ontario that mittees. He was also a member of the Board of Fife House. BACK PAGES

From The Positive Side Files

People wouldn’t look down on you and you would have a lit- ON HIV & WOMEN’S ISSUES ON HARM REDUCTION tle bit more self-esteem so you might make that change to go At times when things feel like [Injection drug users] Carla and over to the other side of the room, to recovery. – from “Out they’re spiraling out of control, I Wayne, like many others, would of Harm’s Way” by Elaine Brière, The Positive Side, Spring/ take myself back to remembering both like to see more safe injection Summer, 2006 the areas where I am exercising con- sites as well as market control and trol. So, I make sure that I’m taking regulation of the drugs they use. ON YOUTH my meds, doing my exercise and “Crime would decrease,” Wayne [Alex McClelland, 28]: “[When I eating and sleeping in a healthy way. says. “Death would decrease. A lot tested positive] all I wanted was The other thing I do is push through. A therapist once said to of people would get their humanity back, their self-respect… someone my age, a peer with the me: ‘Sometimes you have to fake it until you can really feel same experiences to share, to help it.’ And that’s what I do. I remind myself of the things over me understand how to live through which I’m still exercising control, and then I fake feeling The Positive Side magazine puts out helpful, the trauma of the whole experience,” good. It sounds strange, but I carry on as if I’m feeling fine, practical information for people living he says. “Instead, I spent a lot of time and then it actually becomes the reality, and I push through with HIV and, equally important, puts feeling uncomfortable and out of place. I had quite a few bad and push forward again. – Louise Binder from “The Divine a human face on HIV in Canada. experiences.… “All I wanted was support but instead I was Secrets of the Sisterhood” by Lark Lands, The Positive Side, – RonniLyn Pustil thrust into a leadership role,” he says. “I was often asked Spring, 2003 to take part in workshops and presentations as a speaker. I

30 2002 HIV becomes the leading CATIE introduces the The Global Fund to fight CATIE-News reports on the possible sexual transmission cause of death worldwide first edition of The HIV/AIDS is created of hepatitis C virus (HCV) among men who have sex with in people aged 15-59 Practical Guide to HAART men (MSM). This controversial and initially discounted mode of transmission is now well-established. In-depth factsheets on HCV co-infection and treatments for HCV are produced

C CATIE REMINISCENCE BY DOREEN LITTLEJOHN AND VIOLA ANTOINE The opportunity of co-hosting the 2010 Western Educational Conference with CATIE was well- timed. We were able to get Sharing Stories current information out to PHAs, ASOs and community partners just as Saskatchewan’s Doreen: I often think how serendipi- current HIV epidemic was making the news. tous it was to attend the CAHR conference in April 2007. On the last – Nicole White day of the conference, I fortunately came across the body mapping display which the CATIE staff had done in Africa. think I was way too young and vulnerable to be doing it. I I initially was attracted by the size was exploited so social workers and others could learn ‘how of the maps and the very colour- to work with youth’.” The problem is that the very organiza- ful artwork, however as I went tions that are trying to help often unwittingly compound the around the room and read the problem. – from “The Truth about Youth” by Colleen Pat- stories, I found myself profoundly emotionally affected; tears were run- terson, The Positive Side, Summer, 2007 ning down my face. I was struck by the incredible courage and resilience of those who shared their stories and journeys of ON AGING living with HIV/AIDS. Getting older is already a chal- I immediately thought we need to do body mapping at Vancou- found that they opened up and were ready to share with one lenge in our culture, and to see HIV ver Native Health Society (VNHS) for our people to share their another. They all were successful in meeting their goals. playing a major role in it distresses stories. This led to a discussion between us resulting in CATIE I was fortunate to be asked to return to Toronto and present funding a Body Mapping Workshop at the VNHS, a highly suc- people even more,” says {Joanne] at the AGM and talk about the success of our body mapping cessful event steered by CATIE’s educator Tricia Smith. Cyr [psychologist with Immunodefi- workshop. And I have just finished a six-week women’s group ciency Clinic, Montreal]. Especially Body Mapping Elder and Facilitator Viola Antoine: Following a aimed at medication compliance, using the body mapping process as an art medium. I found this to be a highly effective way in a society where facilities specific Body Mapping Workshop in Toronto in October, 2007, VNHS’s of engaging and teaching marginalized women. to PHAs with diminished autonomy are scarce. Brian, who Positive Outlook Program ran one in 2008 with six participants, all of whom found it very helpful in their day-to-day living. I lives in Toronto, knows that being in a big city is an

31 2003 Canadian Working Group WHO announces the “3 by 5” World Trade Organization CATIE introduces The LIPO-ACTION! forms in Quebec on HIV and Rehabilitation Initiative to bring treatment to (WTO) grants developing Practical Guide to HIV (CWGHR) is incorporated 3 million people worldwide by countries the right to buy generic Drug Side Effects and pre*fix: 2005; the target was not met, but life-saving medications Harm Reduction for + Users the initiative demonstrated the efficacy of bringing drugs to Africa advantage. He says he is not worried because “if one day I be- ‘This is me. This is my story’.” – from “Path to Healing: Full health and social services. – from “Trans Canada” by Nora come dependent, I can call Casey House. Services are good Circle on the Prairies” by Kim McKay-McNabb, The Positive Underwood, The Positive Side, Spring, 2008 in a big city. I have had the same doctors for many years and Side, Winter, 2010 I can talk with them. I feel secure.” That is unfortunately not ON GAY MEN’S the case for all PHAs. … New rural facilities need to be cre- ON TRANS ISSUES ated so that PHAs in rural areas can also have access to living For many reasons, a substantial SEXUAL HEALTH environments where they can receive the kind of care they number of trans women turn to sex If being HIV positive raises a mil- require. – from “Growing Old Gracefully” by Laurette Lévy, work. For some, it’s a way to make lion questions, being poz and sexu- The Positive Side, Summer 2007 money to live or to put toward sur- ally active raises a million more.… gery. For others, it’s a way of getting Does having an undetectable viral ON ABORIGINAL HEALING off the street at night. Still others load mean you’re no longer infec- In order to get her life back on track, choose sex work because they find tious? How do sexually transmitted Krista developed ties with a few it empowering. “It’s incredibly powerful when you’ve been infections affect people with HIV? community agencies in Regina. She called a freak your whole life to then find yourself being de- How do you initiate sex if you think your prospective part- found a place to stay and got back sired,” explains Rebecca Hammond, a researcher currently ner may be poz-phobic? HIV-positive gay men may find in touch with her children. “I prayed working on TransPULSE, a large community-based pro- these questions especially pressing. Gay culture can put a to God the Creator to help get me jectexamining the challenges trans people face in accessing lot of value (and pressure) on having sex. How can a poz gay through this. I just kept thinking of man feel healthy and horny when sex seems so fraught with my kids. I slowly started doing the work to maintain my re- potential landmines? First, you can begin by acknowledging covery.” And she succeeded – her children came home in From its beginnings as a local treatment that just as your life didn’t end when you were diagnosed 2008 and 2009. “I reached out for help. The more I tried to information organization to its current national with HIV, your sex life doesn’t have to end either. Sexual move forward, the more help I received. … [Through an All mandate, CATIE is well known as a reliable health is an important part of your overall health; it means Nations Hope AIDS Network retreat] Krista was put in con- source of information on all aspects of HIV taking care of yourself as well as your partner’s well-being tact with another Aboriginal PHA. “He really soothed me and more, and an excellent collaborator — physical, mental and emotional — while still getting hot inside. It diminished the shame, the pain. I wasn’t alone. He in English and French across Canada. and heavy. – from “Sex and The Poz Gay Man” by Derek n lit a fire inside me and I felt that I needed to find a space – Ken Monteith Thaczuk. The Positive Side, Spring/Summer, 2010 within the circle. I started to stand up for myself and say,

32 2003 2004 2005 InSite, North America’s first UNAIDS launches the Global Health Canada approves a rapid CATIE launches the first The 150th issue of supervised injection site, opens Coalition on Women and HIV antibody test for sale to phase of its Capacity CATIE’s TreatmentUpdate for drug users in Vancouver’s AIDS to raise the visibility of health professionals in Canada, Building Project, designed is published. Downtown Eastside the impact of HIV/AIDS on enabling point-of-care testing to help ASOs integrate HIV women and girls worldwide that can provide accurate treatment information into test results in two minutes their client services

C CATIE REMINISCENCE BY HARLON DAVEY Forging Friendships and Learning ©iStockphoto.com/caracterdesign I was diagnosed with HIV in 1987. I was 23 and things were different then. I won’t go into details but you can imagine what it was like to be told that you no longer had a future. I spent the next 19 years coping, not coping, living, loving, losing and always learning.

Up until 2006, I didn’t even know what an ASO was (AIDS Service Organization). I was doing fine on my own. But things changed for me in 2006, again, and I needed support and I needed knowledge.

I have always been fascinated in bridging the gap between science and the humanities. I also think that as a patient, the best tools that I have to manage my chronic illness are a healthy state of mind and knowledge about my virus and about treatment. That’s what CATIE does so well as an organization – to help empower people living with HIV to manage their health and, in general, to foster a spirit of cooperation amongst the various And above all, being involved with CATIE has been about tapping My journey is, well, who would expect it to be anything but un- organizations that serve PHAs and the various communities that into my sense of purpose. usual? Yet somehow it has never felt insurmountable and having an have been effected by it. organization like CATIE around for 20 years has certainly made the I’m at the point in my life where I am moving forward in new and steps along the path enlightening and enriching. From the time when I was on treatment for hepatitis C, feeling exciting directions and I will be less involved in the HIV community quite overwhelmed in the middle of AIDS 2006 in Toronto, CATIE and more just living my life as a person with dreams and desires. has remained a catalyst for me. I have been a volunteer, served on its Board of Directors and been contracted on a project. For me, I have no doubt that CATIE will be there with me every step of CATIE is about working with dedicated, smart and kind people. It’s the way of this new path. Whether it’s looking for information or about forging friendships, about learning and sharing information. spending time with the friends I made there.

33 2006 CATIE creates The Learning Institute, an innovative The theme of treatment as a possible means of CATIE launches its international Body Mapping program, C e-learning initiative to enable participants to C prevention emerged at the 16th International C an arts-based methodology developed in Africa, to help maximize their time at the 16th annual International AIDS Conference in Toronto. CATIE began to develop PHAs learn more about their health and treatment options AIDS Conference in Toronto in August tools for prevention such as “Beyond the Banana” about the epidemiology and transmission of HIV 1993-2010

CATIE Treatment Datelines

Results from a pilot study of warts, seizures and Kaposi’s sarcoma. She has not been able ing AIDS or dying fall by 50% compared to PHAs receiving DNCB in HIV infection to locate the fourth subject. One of her subjects took 20 times double therapy. This study confirms the benefit doctors have DNCB is a chemical used to develop col- the normal dose and developed nerve damage. seen in some of their patients who use protease inhibitors. 1993 or film. It has also been used in air condi- tioning and refrigeration equipment. A small amount of 10% A cocktail of 5 anti-HIV drugs HIV still in the picture, but DNCB solution was put on a 25-millimetre patch of skin Researchers used six subjects who had be- treatments could last for years “usually on the forearm.” Over the next three days swelling 1996 come infected within the past six months. Although these findings tend to disprove and redness at this site should have occurred. If this did not Subjects received standard doses of AZT, ddC, ddI and in- 1997 hopeful theories of HIV eradication put happen subjects “repeated this dose at weekly intervals until terferon-alpha with or without 3TC. In some subjects, the forth last year at the Vancouver international AIDS confer- sensitization [redness, swelling, itching] occurred.” use of combination anti-HIV therapy caused a dramatic de- ence, they arrive in the company of encouraging news as crease in the amount of HIV detected in their blood. well. The researchers have found that by driving HIV levels QHS-Chinese herb for PCP? down as low as possible and virtually arresting viral replica- When questioned at the conference about Indinavir and 2 nukes — the big study tion, the threat of drug resistance is greatly minimized. In 1995 long-term results from her original group Doctors recruited over 1,000 PHAs for this fact, each of these studies reports that the trace virus found of 13 patients, Ms Paul said that four subjects no longer use 1997 study to compare the effects of triple thera- in resting CD4+ cells had not developed resistance to the the herb. One subject developed dementia and is dying; an- py -- indinavir with AZT (or d4T) and 3TC -- against double therapy in use. This implies that many patients may continue other developed the life-threatening brain infection ‘crypto’ therapy with a combination of two nukes -- AZT (or d4T) and to live healthily for years, provided they comply faithfully (Cryptococcal meningitis); a third developed severe rectal 3TC. PHAs receiving triple therapy had their risk of develop- with their treatment regimen.

34 2007 2008 WHO and UNAIDS recommend With support from CATIE, the first CATIE becomes the national 20th anniversary of 17th International AIDS that “male circumcision meeting of the Regional Atlantic HIV Knowledge Exchange World AIDS Day Conference in Mexico City should always be considered AIDS Network (RAAN) is held Broker for prevention, care, focuses on prevention as part of a comprehensive treatment and support information interventions and the Global HIV prevention package” HIV Prevention Network launches the report Behaviour Change and HIV Prevention: (Re)Considerations for the 21st Century

C CATIE REMINISCENCE BY CRAIG McCLURE Viral load - how low is best? As the technology for measuring viral 1998 load has improved, the lower limit of The Great Disparity detection has fallen from 10,000 copies a few years ago to the more recent 50-copy limit with the Chiron 3 and similar When I started working at CATIE in ply because they had no access to the life-saving medicines tests. According to their calculations, viral load ought to be 1993, there were no effective treat- available to us. ments and people living with HIV kept at a level of less than one copy. Sounds like science fic- and AIDS were trying everything While there continued (and continues) to be challenges to face tion? Maybe not; in a few years, test kits which achieve such to stay alive – complementary in Canada, I wanted to take what I had learned here and try sensitivity may become licensed for clinical use. therapies, radical diets, experimen- to adapt it to work at the global level to reduce the disparity tal drug trials, you name it. CATIE, a in access between rich and poor countries. In the past decade, the same tools of information exchange and focused advocacy Discontinuing PCP prophylaxis under HAART tiny NGO at the time, was trying to provide clear information about all of these approaches and oth- that were pioneered by CATIE have been used throughout the Many people with HIV take several medi- ers, and to support people living with HIV to make informed world with powerful results. Over five million people in poor 1999 cations to prevent the onset or recurrence decisions about their health care. countries now have access to HAART. Communities are more informed and engaged in the response to HIV than ever before. of diseases such as CMV-retinitis, MAC, herpes and PCP. I was proud to be involved in CATIE’s early peer education ac- While so much still needs to be done, much has been achieved. Given the considerable pill burden of many patients taking tivities, its signature publication Managing Your Health - A Guide for People Living with HIV/AIDS, its phone and later web-based HAART, it is easy to understand why the possibility of stop- Brent Patterson, Doug Weatherbee and Craig McClure ping prophylaxis is attractive. Hence the appeal of recent information services, and its advocacy work with communities, governments and industry to intensify research and accelerate news from the Netherlands, where doctors report that pa- drug access. tients taking HAART are able to discontinue PCP prophy- CATIE was one of a very small number of pioneers around the laxis without developing PCP. world developing these services. When Highly Active Antiret- roviral Therapy (HAART) was shown in 1996 to be effective at Lipid-lowering drugs and changes reducing viral load and limiting disease progression, HIV was to diet can make a difference transformed from a death sentence to a chronic and (relatively) manageable infection – in the rich world. But while we jus- Readers should note that it may be more tifiably celebrated in Canada and other rich countries after a 2001 difficult to reduce lipid levels in people decade of massive loss, millions of people in poor countries using HAART than in HIV negative people not tak- continued to get sick and die, in ever-increasing numbers, sim-

35 2009 CATIE officially expands With support from CATIE, CATIE launches hepatitis C UNAIDS calls for the CATIE launches The the scope of its services the first meeting of the website and toolkit implementation of programs Power of One, an as the HIV Knowledge Exchange Manitoba Saskatchewan resources for Ontario in December to work toward the virtual educational display illustrating Broker for prevention, care, Network (ManSask) is held elimination of mother-to-child the HIV epidemic in Canada, treatment and support transmission of HIV by 2015 using grains of rice ing HAART. Other interventions such as eating fish that is Ontario study finds key information may Clinical trial generates tantalizing rich in omega-3 fatty acids — cod, haddock, herring, tuna, be missing from PHA medical charts hope for a future HIV vaccine, but salmon and sardines — as well as the use of supplements The study team was troubled by the find- much research lies ahead such as L-carnitine and antioxidants need to be tested in 2005 ing that 25% of participants used a large The big hope for this vaccine is that it could HAART-users with high lipid levels in their blood. number of therapies—between 21 and 39 different drugs. 2009 be used in combination with other preven- Depending on the PHA, between eight and 19 of these were tion methods, such as safer sex, in order to make a difference in Is hepatitis C virus going to prescribed medications, yet physicians were apparently the total rate of HIV transmission among large populations at become a major STD? aware of only some of the drugs used by their patients. risk. This is a relatively new idea in vaccine research—a vaccine that doesn’t provide much protection for an individual, yet Rates of unsafe sex and, not surprisingly, can make a big difference to the global spread of HIV. 2002 sexually transmitted diseases (STDs) The HAART era: AIDS deaths fall are increasing in Western Europe and North America. Brit- but new complications emerge PrEP – hope and excitement greet ish researchers have done a preliminary study that suggests Given the changes in the causes of death first successful microbicide hepatitis C virus (HCV) infection may be increasingly 2006 since HAART, more research is needed Pre-exposure prophylaxis (PrEP) is a term transmitted sexually in HIV-positive people. on helping PHAs survive the many complications that are 2010 given to any therapy that can be taken increasingly a threat to their health. prior to exposure to HIV in the hope that it will protect the Delaying therapy - the pendulum swings back user from HIV infection. …In the CAPRISA Trial 004, re- Once the benefit of HAART became ap- New evidence changes guidelines searchers tested a vaginal gel containing 1% tenofovir vs. parent, doctors were initially aggressive about when to start treatment 2002 another gel containing placebo. Over two and a half years in prescribing it, even for their patients who had relatively In the past year, HIV treatment guide- the tenofovir-containing gel reduced the risk of infection by high CD4+ T-cell counts. With the passage of time, however, 2009 lines from high-income countries and re- 39%. This is a major advance in the field of HIV prevention, it has become clear that HAART has limitations. As a result, gions such as the United States, United Kingdom and West- given the dismal track record of microbicide testing. Readers doctors and their patients are increasingly delaying therapy ern Europe have changed. Generally, these guidelines now should note that these findings do not mean that a tenofovir- and treatment guidelines have been revised. Yet the impor- recommend that HIV positive people begin HAART when containing microbicide is ready for sale or distribution. There tant question “When is the best time to start therapy?” has their CD4+ count has fallen below 350. This is a major shift are issues related to Trial 004 that need to be resolved. The not been answered and is something with which doctors and from the beginning of this century, when treatment was usu- trial results should be viewed as a good first step. n people with HIV/AIDS (PHAs) struggle. ally delayed until CD4+ counts fell below the 200-cell mark.

36 2009 2010 CATIE expands its hepatitis CATIE launches a series CATIE’s new logo reflects CATIE launches Prevention CATIE launches C program to provide of Regional Educational its expanded mandate in Focus, an e-magazine Programming Connection, information services nationally Conferences in October as Canada’s source for HIV designed to highlight prevention an online resource for and hepatitis C information research and foster the integration frontline workers to share of research-based knowledge innovations in program into program development development and delivery.

C CATIE The weight of our loss is great. We remember the very dark times and the many who did not survive them. Yet even then, the faint promise of a better day pulled us along. However uncertainly. And so it does today.

The great news, of course, is that times have changed. Since CATIE’s beginnings, 37 treatment advances have transformed people’s prospects. We do not live in the same world of 20 years ago and we are emboldened by that. And we will continue, with our many community partners, to digest and share the information that will enable this country’s people living with HIV and hepatitis C to face – and surmount – the new challenges.

Wayne Hellard (Executive Director, Wayne Stump David Coop Marites Credo Eva Maria Sans de la Torre DelarmeeMichael Beverly Deutsch Melisa Dickie Eric Doyon Émilie Duguay Nancy Duncan Laurie Edmiston (Executive Director, Melissa Egan Bill Ekins Finch Brian Ron Foley Graber Elizabeth Natasha Gricken Huskins Brian InksterDana JacksonEd Heather Ann Kaldeway (Director, Kenney Paul Operations, Debbie Koenig Kwaczek Eva LadellDaniel Rachel Landauer LeeFlora Lemay Bruno Karen Luttrell Lyons Lori Robert MacKay-Melrose Deirdre MacLean Dave McKay David McLay Lisa McShane Paul Merriam Pamela Murphy Mykhalovskiy Eric Devan Nambiar O’DonnellPaul Laura O’Grady OngoïbaFanta David Ontonovich PattersonBrent PercyLeah Barry Plant Lauren Plews RonniLyn Pustil QiDapeng David Snoddy Patrick Soje Taylor Darien ThaczukDerek Brook Thorndycraft Bertrand Toulouse Laetitia Uwineza Wagner Mark Ralph Wushke Dino Zuccarini Véronique DestrubéVéronique Greg Garrison Greg Oct., – Sept., / Directeur 1992 1995 Guy Laporte Geoff Lawrence Germaine Marcotte Oct. 2003 1999 – May, / Directrice Connie Cole Christine Johnston McClure Craig Carrie Pounder ThomsonCarale général, octobre - 1992 générale, oct. 1999 – mai 2003) Sameer Dhawan Sean Hosein Sylvie Lemay Stéphanie Lemyre Susan MacLean Susan Massarella Shamim ShambeMiradam Sugandhi Wickremarachchi septembre 1995) septembre Albin LopezAlbin Andrew MacDonald Anne McLaughlin-Rich Annika Ollner Andrée Savard Shane Adam (Executive Director, Swarbrick Anne TivadarAnamaria Allan Wands Zak Knowles John Guenther John Holder Jacqueline John Kennedy Jane Oliver Judy Pike PollockJim Jeff Potts Jeff Reinhart Rodriguez Jacobo Jane Strickland (Wallis) Judy Tracey Veen van Joseph Jessica Venters James Wilton Tony Hamill Tony MacDonald Tamara Tim Rogers Smith Tricia Tiffany Veinot WattTsitsi Ying Guo Ying LeBlancYolande 2003 – present / Directrice générale, aujourd’hui) – 2003 1995 – 1998 / Directeur, – 1998 1995 Opérations, 1995 – 1998)

g Bill Bradley Bill Clement Ken Coleridge Peter Patrick Cupido (Chair / Président) DavenportMichael Bill Downer Barbara Gibson Kevin Hatt Johnson Kim Laurette Lévy Robert MacKay Maggie McGinn Peetanacoot Nenakawekapo Daryle Roberts Ed Steele Bradley Bill Bristow Ken Clement Ken Coleridge Peter Cupido Patrick Bill Downer Laurette Lévy Robert MacKay Peetanacoot Nenakawekapo Daryle Roberts David Swan Boutcher Michelle Bradley Bill Bristow Ken Coleridge Peter Bill Downer Laurette Lévy Robert MacKay Daryle Roberts David Swan Thompson Lydia Watling Lyle Laura M. Bisaillon Boutcher Michelle Bristow Ken Noel Carney Coleridge Peter Harlon Davey Bill Downer Daryle Roberts David Swan Thompson Lydia Watling Lyle Laura M. Bisaillon Bristow Ken Noel Carney Président) / (Chair Coleridge Peter Harlon Davey Bill Downer Ken King Martino Larue Daryle Roberts ShortDon David Swan Thompson Lydia Watlin Lyle Lin Ai Bailey Michael Don Bapst Lara Barker Lisa Betel Denyse Boxell BritoMichael Robert Brosius Brotman Mara services, et Programmes Directeur, Pam Casey Laurel Challacombe Mary Cho Matthew Church Glen BrownGlen (Director, Programs General / Manager, 1998-1999 Personnel de CATIE CATIE de Personnel through the Years / Years the through Charlene Catchpole Charlene Catchpole Charlene Catchpole Charlene CATIE, Chef 1996-1998, par intérim, 1998-1999) CATIE, Chabot Clement général, – juillet janvier 1992) 1991 personnes vivant avec VIH le ou l’hépatite C, les communautés pour réduire la transmission et améliorer la qualité de vie. au fil années fil des au Numéro d’enregistrement à titre d’organisme Sandy Lambert Sandy Lambert téléc: 416-203-8284 2005 – 2006 2006- 2007 2007 – 2008 2008-2009 2009 – 2010 à risqué, les fournisseurs de soins de santé et les organisms impartiaux sur VIH le et l’hépatite C. Nous mettons en relation les [email protected] infoHepatiteC.ca Angela Mackinnon Director, (Executive Berry Alex Alain Boutilier Boxer Andrew CATIE StaffCATIE Members 555 rue Richmond Ouest, bureau 505 de bienfaisance 132258740 RR0001 Jan. 1991 – July, 1992 / Directeur – July, 1992 Jan. 1991 & Services, Acting 1996-1998, communautaires avec de l’information, des resources et l’expertise CATIE est la source canadienne de renseignements à jour et Canada www.catie.ca Terry Pigeon Terry Président) / (Chair Pigeon Terry Président) / (Chair Pigeon Terry Président) / (Chair Pigeon Terry Stratton Trevor Barber Tracey Yves BrunetYves BrunetYves BrunetYves BrunetYves Toronto, ON M5V ON 3B1 Toronto, TreatHIVGlobally.ca VisionPositive.ca ViePositive.ca 1-800-263-1638

William Naumovich (Co-Chair / William Naumovich (Co-Chair / Mina Mohamed Brian Robinson Robert Throop Bast Miriam BraitsteinPaula Evan Collins Cupido Patrick Bob Gardner (Co-Chair / LevesqueDaniel Robert MacKay Mina Mohamed Morin Michel Reynolds Kate Brian Robinson Robert Throop Tucker Ruthann Bradley Bill Evan Collins Patrick Cupido (Co-Chair / Jones Beverly Levac Daniel Lundrigan Philip Robert MacKay Maggie McGinn Morin Michel Daryle Roberts Brian Robinson Bradley Bill Patrick Cupido (Co-Chair / Barbara Findlay Haley Flaro Randy Hamilton Hickey Barney Lundrigan Philip Maggie McGinn Morin Michel Peetanacoot Nenakawekapo derRon Van Meer Bradley Bill Patrick Cupido (Chair / Président) DavenportMichael Barbara Findlay Haley Flaro Llewellyn Goddard Randy Hamilton Hickey Barney Dominic Levesque Maggie McGinn Morin Michel Peetanacoot Nenakawekapo Bradley Bill Patrick Cupido (Chair / Président) DavenportMichael Barbara Findlay Haley Flaro Llewellyn Goddard Randy Hamilton Kevin Hatt Hickey Barney Dominic Levesque Maggie McGinn Peetanacoot Nenakawekapo Bradley Bill Patrick Cupido (Chair / Président) DavenportMichael Bill Downer Barbara Findlay Haley Flaro Randy Hamilton Kevin Hatt Laurette Lévy Maggie McGinn Peetanacoot Nenakawekapo Dwayne Norris Daryle Roberts Isabelle Raymond Grace GettyGrace SchellenbergGlen GettyGrace Quinn Wade Quinn Wade Co-président) Co-président) Co-président) Co-président) Co-président) Co-président) Co-président) Stacey Daub Stacey TimmsShelly Sheri Quinn 2000 – 2001 – 2000 2001 – 2002 2002 – 2003 2003 – 2004 2004 – 2005 Alex Campbell Fayant Arlo Yuzicapi Arlo Yuzicapi Fayant (Co-Chair / Arlo Yuzicapi Fayant (Co-Chair / Todd ArmstrongTodd ArmstrongTodd Pigeon Terry ArmstrongTodd Pigeon Terry Kaighin Todd Pigeon Terry Kaighin Todd Pigeon Terry 1999 – 2000

IE (TreatmentIE Information Réseau communautaire Réseau hepCinfo.ca / Exchange) Committee Information Exchange / Wayne Hellard Wayne Hellard William Naumovich William Naumovich (Co-Chair / Mary Louise Adams ArmstrongRussell Beverly Deutsch Linda Gardner Don MacAulay Lewis Racicot Michael Smith ArmstrongRussell Beverly Deutsch Linda Gardner Danny Jellis Lewis Racicot Linda Gardner Linda Gardner Mykhalovskiy Eric Robert Duesen Van Président) Gardner Bob Linda Gardner Laurette Lévy Mykhalovskiy Eric Taylor Darien Robert Ertel Gardner Bob Linda Gardner Laurette Lévy Robert Trow R. Awde Robert Ertel Gardner Bob Linda Gardner (Co-Chair / Laurette Lévy Mina Mohamed Mykhalovskiy Eric Brian Robinson D. Perry Robert Trow Doug Weatherbee Brophy Paul Bob Gardner (Co-Chair / P. Ham Pieter Huisman Mina Mohamed Brian Robinson Bast Miriam Cupido Patrick Bob Gardner (Co-Chair / Charitable Registration Number about HIV and hepatitis connect C. We people living with HIV [email protected] or hepatitis C, at-risk communities, healthcare providers and expertise to reduce transmission and improve quality life. of 555 Richmond Street West Comité du Projet TIE Community AIDS Treatment Fax: 416-203-8284 PositiveSide.ca LivePositive.ca De CATIE, 1991-2010 De CATIE, George Smith George Smith George Smith George Gerry Hunt Smith George Gerry Oxford Smith George Gerry Oxford Gerry Oxford Gerry Oxford Greg Robinson Suite 505 community organizations with the knowledge, resources and Chris Bearchell Chris Bearchell Chris Bearchell Co-présidente) Co-présidente) Charles Gillis Co-président) Charles Gillis Co-président) Co-président) d’info-traitements sida CATIE is source Canada’s for up-to-date, unbiased information Canada www.catie.ca Sean Hosein ForerSarah ForerSarah ForerSarah MacDonald Stephen MacDonald Stephen Alan Cornwall Alan Cornwall Alan Cornwall Alan Cornwall Alan Cornwall (President / Leonardi Di Agnes Leonardi Di Agnes Agnes Di Leonardi (Co-Chair / Alex Campbell Alex Campbell CATIE BoardCATIE Members, D’administration Conseil Toronto, ON M5V ON 3B1 Toronto, TreatHIVGlobally.ca 132258740 RR0001 132258740 T Hammond John 1-800-263-1638 1991 - 1992 1992 - 1993 1993 - 1994 1994 - 1995 1995-1996 1996 – 1997 1997 – 1998 1999 – 1998 1991-2010 / Membres Du 1991-2010 1991-2010 Du /Membres 1997 – 1998 – 1997 1997 – 1996 1995-1996 1995 - 1994 1994 - 1993 1993 - 1992 1992 - 1991 1998 – 1999 T John Hammond Conseil D’administration Members, CATIE Board Alan Cornwall Alan Cornwall Alan Cornwall Alan Alex Campbell Alex Campbell Alex / (Co-Chair Leonardi Di Agnes Agnes Di Leonardi Agnes Di Leonardi / (President Cornwall Alan Cornwall Alan Sarah Forer Hosein Sean Stephen MacDonald Stephen MacDonald Sarah Forer Sarah Forer d’info-traitements sida d’info-traitements Chris Bearchell Chris Co-président) Co-président) Gillis Charles Co-président) Gillis Charles Co-présidente) Co-présidente) Bearchell Chris Bearchell Chris George Smith Greg Robinson Greg Oxford Gerry Oxford Gerry Oxford Gerry George Smith Oxford Gerry George Smith Hunt Gerry George Smith George Smith De CATIE,De 1991-2010 Community AIDS Treatment Treatment AIDS Community TIE Projet du Comité D. Perry D. Robinson Brian Eric Mykhalovskiy Mohamed Mina Lévy Laurette / (Co-Chair Gardner Linda Bob Gardner Ertel Robert Awde R. Trow Robert Lévy Laurette Gardner Linda Bob Gardner Ertel Robert Darien Taylor Eric Mykhalovskiy Lévy Laurette Gardner Linda Bob Gardner Président) Van Duesen Robert Eric Mykhalovskiy Gardner Linda Gardner Linda Lewis Racicot Jellis Danny Gardner Linda Deutsch Beverly Russell Armstrong Smith Michael Lewis Racicot MacAulay Don Gardner Linda Deutsch Beverly Russell Armstrong Adams Louise Mary Bob Gardner (Co-Chair / / (Co-Chair Gardner Bob Patrick Cupido Miriam Bast Robinson Brian Mohamed Mina HuismanPieter Ham P. / (Co-Chair Gardner Bob Paul Brophy Weatherbee Doug Trow Robert William Naumovich William Hellard Wayne Hellard Wayne William Naumovich (Co-Chair / / (Co-Chair Naumovich William Information Exchange / / Exchange Information Exchange) CommitteeExchange) / Réseau communautaire IE (Treatment Information Information IE (Treatment

Records were gleaned as carefully as possible and CATIE regrets any errors or omissions that may have been made. been have may that omissions or errors any regrets CATIE and possible as carefully as gleaned were Records

Nous avons effectué une recherche approfondie de nos dossier et regrettons toute erreur ou omission éventuelle. omission ou erreur toute regrettons et dossier nos de approfondie recherche une effectué avons Nous

1999 –2000 1999 Terry Pigeon Todd Kaighin Terry Pigeon Todd Armstrong Terry Pigeon Todd Armstrong Todd Armstrong Terry Pigeon Todd Kaighin Arlo YuzicapiArlo Fayant Campbell Alex Arlo Yuzicapi Fayant (Co-Chair / / (Co-Chair Fayant Yuzicapi Arlo Arlo Yuzicapi Fayant (Co-Chair / / (Co-Chair Fayant Yuzicapi Arlo 2002 –2003 2002 –2002 2001 2000 – 2001 2004 –2005 2004 –2004 2003 Shelly Timms Stacey Daub Sheri Quinn Sheri Co-président) Co-président) Co-président) Co-président) Co-président) Co-président) Co-président) Glen Schellenberg Grace Getty Grace Getty Quinn Wade Quinn Wade Quinn Isabelle Raymond Isabelle Brian Robinson Brian Mohamed Mina Barney Hickey Hamilton Randy Goddard Llewellyn Flaro Haley FindlayBarbara Michael Davenport /Président) (Chair Cupido Patrick Bill Bradley Meer VanRon der NenakawekapoPeetanacoot Michel Morin McGinn Maggie Philip Lundrigan Barney Hickey Hamilton Randy Flaro Haley FindlayBarbara / (Co-Chair Cupido Patrick Bill Bradley Robinson Brian Roberts Daryle Michel Morin McGinn Maggie MacKay Robert Philip Lundrigan Daniel Levac Beverly Jones / (Co-Chair Cupido Patrick Collins Evan Bill Bradley Ruthann Tucker Throop Robert Robinson Brian Kate Reynolds Michel Morin Mohamed Mina MacKay Robert Daniel Levesque / (Co-Chair Gardner Bob Patrick Cupido Collins Evan Paula Braitstein Miriam Bast Throop Robert Peetanacoot NenakawekapoPeetanacoot McGinn Maggie Levesque Dominic Barney Hickey Hatt Kevin Hamilton Randy Goddard Llewellyn Flaro Haley FindlayBarbara Michael Davenport /Président) (Chair Cupido Patrick Bill Bradley NenakawekapoPeetanacoot Michel Morin McGinn Maggie Levesque Dominic Daryle Roberts Daryle Norris Dwayne NenakawekapoPeetanacoot McGinn Maggie Lévy Laurette Hatt Kevin Hamilton Randy Flaro Haley FindlayBarbara Bill Downer Michael Davenport /Président) (Chair Cupido Patrick Bill Bradley William Naumovich (Co-Chair / / (Co-Chair Naumovich William William Naumovich (Co-Chair / / (Co-Chair Naumovich William

Yves Brunet Yves Brunet Yves Brunet Yves Brunet Terry Pigeon Terry Pigeon (Chair / Président) Terry Pigeon (Chair / Président) Terry Pigeon (Chair / Président) Tracey Barber Trevor Stratton & Services, 1996-1998, Acting 1996-1998, Acting & Services, Jan. 1991 – July, 1992 / Directeur 1991Jan. 1992 –July, /Directeur CATIE Staff Members Members CATIE Staff Angela Mackinnon Angela Andrew Boxer Boutilier Alain Alex Berry (Executive Director, 2005 –2006 2005 2008-2009 –2008 2007 2007 2006- 2009 –2010 2009 Sandy Lambert Sandy Lambert Sandy au fildes années général, janvier 1991 1992) janvier –juillet général, Charlene Catchpole Charlene Catchpole Charlene Catchpole Clement Chabot CATIE, 1998-1999) intérim, par 1996-1998, Chef CATIE, through the Years / Personnel de CATIE General Manager, 1998-1999 Manager, / General Programs (Director, Glen Brown Ed Steele Ed Roberts Daryle NenakawekapoPeetanacoot McGinn Maggie MacKay Robert Lévy Laurette Kim Johnson Hatt Kevin Gibson Barbara Bill Downer Michael Davenport /Président) (Chair Cupido Patrick Peter Coleridge Ken Clement Bill Bradley Daryle Roberts Daryle Bill Downer Davey Harlon Peter Coleridge Carney Noel Ken Bristow Michelle Boutcher Bisaillon M. Laura Lyle Watling Lydia Thompson SwanDavid Roberts Daryle MacKay Robert Lévy Laurette Bill Downer Peter Coleridge Ken Bristow Bill Bradley Michelle Boutcher SwanDavid Roberts Daryle NenakawekapoPeetanacoot MacKay Robert Lévy Laurette Bill Downer Patrick Cupido Peter Coleridge Ken Clement Ken Bristow Bill Bradley Laurel Challacombe Laurel Casey Pam Directeur, Programmes et services, Mara Brotman Brosius Robert Michael Brito Boxell Denyse Betel Lisa Barker Lara Bapst Don Michael Bailey Ai Lin Lyle Watlin Lydia Thompson SwanDavid Don Short Roberts Daryle Larue Martino King Ken Bill Downer Davey Harlon Peter Coleridge (Chair / Président) Carney Noel Ken Bristow Bisaillon M. Laura Lyle Watling Lydia Thompson SwanDavid Matthew Church Matthew Cho Mary g

1995 – 1998) – 1995 Opérations, 1995 –1998 /Directeur, 2003 – aujourd’hui) générale, /Directrice –present 2003 Yolande LeBlanc Ying Guo Tamara MacDonald Tony Hamill Tsitsi Watt Veinot Tiffany Tricia Smith Rogers Tim John Kennedy John Jacqueline Holder John Guenther James Wilton James Venters Jessica Joseph van Veen TraceyJudy (Wallis) Strickland Jane Jacobo Rodriguez Reinhart Jeff Potts Jeff Jim Pollock Pike Judy Oliver Jane Zak Knowles Zak Anne McLaughlin-Rich Anne MacDonaldAndrew Albin Lopez Allan Wands Allan Anamaria Tivadar Anne Swarbrick Director, (Executive Adam Shane Savard Andrée Ollner Annika septembre 1995) Sameer Dhawan Sameer Susan Massarella Susan MacLean Susan Lemyre Stéphanie Lemay Sylvie Hosein Sean Sugandhi Wickremarachchi Sugandhi Shamim ShambeMiradam général, octobre 1992 - octobre général, générale, oct. 1999 – mai 2003) –mai 1999 oct. générale, Connie Cole Connie Craig McClure Johnston Christine Carale Thomson Pounder Carrie Germaine Marcotte Germaine Lawrence Geoff Laporte Guy 1995 1992 /Directeur –Sept., Oct., Greg Garrison Oct. 1999 – May, 2003 / Directrice /Directrice –May, 1999 2003 Oct. Véronique Destrubé Bill Ekins Egan Melissa Director, (Executive Edmiston Laurie Duncan Nancy Duguay Émilie Doyon Eric Dickie Melisa Deutsch Beverly Michael Delarmee laTorre de Sans Maria Eva Credo Marites Coop David Dave McKay MacLean Deirdre MacKay-Melrose Robert Lori Lyons Luttrell Karen Bruno Lemay Flora Lee Landauer Rachel Daniel Ladell Eva Kwaczek KoenigDebbie Operations, Paul Kenney (Director, Kaldeway Ann Heather Ed Jackson Dana Inkster Brian Huskins Gricken Natasha Elizabeth Graber Foley Ron Brian Finch Mark Wagner Uwineza Laetitia ToulouseBertrand Thorndycraft Brook Derek Thaczuk Darien Taylor Soje Patrick Snoddy David Dapeng Qi Pustil RonniLyn Plews Lauren Plant Barry Leah Percy Brent Patterson Ontonovich David Fanta Ongoïba O’GradyLaura Paul O’Donnell Nambiar Devan Eric Mykhalovskiy Murphy Pamela Merriam Paul McShane Lisa McLay David Dino Zuccarini Dino WushkeRalph Wayne Hellard (Executive Director, (Executive Hellard Wayne Wayne Stump Wayne