annual report 2014–2015
learn. Pronunciation: /ləːn
VERB (past and past participle learned /ləːnt, ləːnd/) Gain or acquire knowledge of or skill in (something) by study, experience, or being taught
grow. Pronunciation: /ɡrəʊ /
VERB (past grew /ɡruː/; past participle grown /ɡrəʊn/) To become better or improved in some way : To become more developed, mature, etc.
share. Pronunciation: /ʃɛː /
VERB To tell (as thoughts, feelings, or experiences) to others
lead. Pronunciation: /liːd /
VERB (past and past participle led /lεd/) To guide someone or something along a way
Table of Contents Joint Letter from the Chair and the ED
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Who We Are
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Our Projects and Programs
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Events and Activities
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2014–2015 by the Numbers
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Financial Statements
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2014–2015 Funders and Partners
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CTAC ANNUAL REPORT 2014–2015
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Joint Letter from the Chair and the ED
Dear friends: In 2014-2015, CTAC continued to grow steadily and make a positive difference. So we’ve decided to again honour last year’s theme of learning, growing, sharing and leading. These four notions continued to animate our work and reflect the passion that motivates us. CTAC’s growth is apparent in the stability we have achieved in the last year, with a team that works incredibly well together and the development of further processes and procedures that support the work we do. The year also saw the organization embark on a strategic planning process that will guide our work beginning in January of 2016. This report provides a recap of our activities throughout the year, as well as a glimpse of what you can expect in the year to come. In the first year of our three-year funding agreement with the Public Health Agency of Canada, we focused on building solid evidence-based and experience-informed foundations for our projects. We scanned the peer research and grey literature, conducted needs assessments, talked to key informants, and formed project working groups with representatives from throughout Canada. We also travelled throughout Canada delivering presentations at local, regional and national gatherings, and used technology to engage people living with HIV and the hepatitis C virus (HCV) in drug approval and marketing regulatory processes. The core of our work 2014-2015 focused on researching needs and developing tools to promote equitable access to treatment for people in Canada living with HIV and with HIV/HCV co-infection. We have continued with our commitment to addressing at a national level those issues of greatest importance to communities. We started work on newcomer treatment access, the sexual transmission of HCV, and the development of a Canadian consensus statement on treatment and prevention. We began the process of engaging service providers and community members to develop, at the national level policy positions, resources and tools that will meet the needs of front-line workers and their clients.
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We also continued to play a vital role in the Canadian drug approval and marketing process through the Patient Input Reports we submitted to the Common Drug Review. Our monitoring of the pipeline of novel direct acting antiviral drugs for treating chronic HCV infection, and new HIV antiretrovirals, continues to strengthening our role as a leading treatment monitor and patient voice on behalf of people living with HIV and HIV/HCV co-infection. In addition to our ongoing face-to-face knowledge exchange activities, we increased our digital presence this past year by producing four new CTAC TALKS videos. These videos are not only engaging, they are more accessible and reflect the changing ways in which the people we serve prefer to access information. The CTAC Board and staff are looking forward to the year ahead, and beyond. We will continue to work to ensure equitable, affordable and timely access to treatments for HIV, HCV and related co-morbidities for all people living in Canada by collaborating with community, industry and non-profit partners. In the coming year we will develop our new strategic directions along with an implementation plan, positioning CTAC and our members to learn, grow, share and, most importantly, provide effective leadership on HIV and HCV treatment access issues throughout Canada.
Terry Pigeon Chair, Board of Directors
Shane Patey Executive Director
CTAC ANNUAL REPORT 2014–2015
The Board of Directors Terry Pigeon Chair and Québec Region Director
Enrico Mandarino At Large Director
Mikiki Vice-Chair and At Large Director
Maggie McGinn Western Region Director
Arthur ‘Dave’ Miller Treasurer and Atlantic Region Director
Jonathan Postnikoff Pacific Region Director
Shannon Kelley Secretary and At Large Director
Lynn Thompson At Large Director
Who We Are
Christian Hui Ontario Region Director
The Team Shane Patey Executive Director
Anna Li Research Assistant
Kimberly Bennett Communications Coordinator
Barbara Santosuosso Policy Researcher
Adam Cook Policy Researcher
Shraddha Shah Manager, Finance & Administration
Rounak Faizi Khan Stakeholder Engagement & Special Projects
CTAC ANNUAL REPORT 2014–2015
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Our Projects and Programs
HIV Treatment and Prevention – Building a Canadian consensus statement CTAC, in partnership with CATIE and Positivelite.com, Canada’s online HIV magazine, is developing a Canadian consensus statement on the health and prevention benefits of HIV treatment. HIV antiretroviral medication has significantly reduced illness and death among people living with HIV. The medications have also shown themselves to be highly effective at stopping the transmission of HIV between individuals, which translates into benefits at the population level. The Consensus statement will clearly set out the benefits of HIV antiretroviral treatment for people living with and at risk of HIV that can result from informed decisions based on the latest scientific evidence. Firmly grounded in a human rights-based approach, this progressive statement will help build community consensus around access to HIV testing, the decision to start and get access to HIV antiretroviral treatment, and the use of pre- and postexposure prophylaxis (PrEP and PEP).
Positive Sex – More than just a workshop CTAC continued to present the highly rated Positive Sex workshop at regional events for people living with HIV. HIV disclosure is a complex personal and social issue, especially in Canada where this complexity is often overshadowed by the overly broad use of the criminal law and misconceptions about HIV. This day-long interactive workshop provides a safe, non-judgemental and respectful environment where people living with HIV are able to rehearse disclosure, discuss uncertainties, and develop a heightened level of comfort in making informed decisions about disclosure. During 2014-2015, we relied on social media engagement driven by the HIV Disclosure Project based out of Montreal, not only to promote Positive Sex, but to stimulate a larger and ongoing discussion about HIV disclosure and HIV-related stigma.
POS I T I VE+ SEX AN INNOVATIVE APPROACH TO DISCLOSURE IN PRACTICE AND IN CONSEQUENCE FACILITATOR’S WORKSHOP GUIDE
Starting in 2015-2016, CATIE will be the new organizational home for the Positive Sex workshop, and will offer the workshop throughout Canada as part of their program delivery. This speaks volumes about the success of this unique workshop and the enduring need for Positive Sex workshops across Canada. “At ACCM, we see the Positive Sex workshop as an investment in a longer term conversation with our membership. As a tool, it is flexible enough that we can dialogue not just about individual sex practices, but help participants uncover the impact of the rejection that they have experienced in their lives. This dialogue continues beyond the workshop, and we see this as an introduction to talking about the shame and blame many have taken to heart- it begins a healing process of restructuring these perceptions of self and self-valuation essential to leading a whole and healthy life with HIV.” - Zachary Grant, Coordinator of Group Services, AIDS Community Care Montreal
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CTAC ANNUAL REPORT 2014–2015
Mental Health Services – Improving access to treatment for those living with HIV/AIDS Research has demonstrated the many connections between HIV and mental health. Yet access to mental health treatment, care and support in Canada is both complex and challenging. CTAC’s mental health project is identifying gaps in knowledge and capacity of people living with HIV and service providers. Through collaboration and collective engagement with various stakeholders, CTAC is developing knowledge exchange tools that will identify and address barriers to access, and provide strategies to ameliorate systemic issues affecting mental health treatment access.
HIV/HCV Integration Treatment Access Map (TxMAP) – Finally a tool to navigate public drug plans in Canada Access to treatment is critical for the best possible health outcomes of people living with HIV and chronic hepatitis C virus (HCV). There are 19 different public drug plans in Canada, with roughly 40 percent of the population relying on these programs to access essential medicines. As it stands, there is no single source of information about public drug plans in Canada—what drugs are available, who is eligible to receive them, under what conditions, and according to what procedure. A first of its kind, the Treatment Access Map (TxMAP) is a comprehensive online tool that will be hosted on the CTAC website. The Treatment Access Map will allow community members, service providers, and policy researchers to access information about the HIV and HCV treatments available through the provincial and territorial drug programs, as well as those covered under the six federal public drug plans. The map offer a list of cross-jurisdictional relocation-related legislation and processes linked to treatment access and links to individual and community resources to ease transition when moving between jurisdictions. The Treatment Access Map will change the ways people are able to access information on drug availability nationwide; strengthen avenues for access to treatment, care and support for people affected by HIV and HCV; and empower and equip people to better navigate structural barriers. “We get quite a few hotline calls from individuals who are planning a move elsewhere and know that all the provinces are different in regards to coverage. This will be a great tool to give to people as it will cover the majority of questions I field all the time.” - Katy Booth, RSW, Case Manager – HIV Support Services, HIV Community Link, Calgary, AB.
“I think CTAC’s treatment access map will go a long way toward making freedom of treatment information a reality for all PHAs across Canada, and help people find the very best care.” – Heidi Exner, Manager- Health Promotion and Community Development, AIDS Vancouver Island
Reframing HIV as HIV/HCV Co-Infection – Creating awareness in priority settings Over the past decade a small but growing body of scientific literature has pointed to sexual transmission of the hepatitis C virus (HCV). The phenomenon has been observed primarily among gay men and other men who have sex with men, often in large urban settings. The sex that puts gay and other men who have sex with men at risk of HCV also carries risk for HIV transmission. Although curable for those people who can access medications, HCV infection can have serious health consequences, especially for men living with HIV. To date, very few community or service provider resources on HIV/HCV co-infection have been developed—in Canada or elsewhere. CTAC has been working on a project that will draw on expertise and resources from the HIV and STI prevention and gay men’s health movements. Through a smallscale, sex-positive, stigma-combating social media and marketing campaign, this project will raise awareness among gay and other men who have sex with men, and people who provide services to these men, about the sexual transmission of HCV.
CTAC ANNUAL REPORT 2014–2015
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Pakistani and Ethiopian Newcomers – Understanding priority issues to improve treatment access Anecdotal evidence indicates that an increasing proportion of immigrants and refugees living with HIV and hepatitis C in Canada are experiencing barriers to treatment access. After an initial environmental scan, CTAC decided to focus this project on Pakistani newcomers living with hepatitis C and Ethiopian newcomers living with HIV. Both communities are in need of additional treatment access supports, which CTAC will develop based on an in-depth understanding of priority issues affecting newcomers’ treatment access. Through the project we will seek advice and guidance from two working groups, reflective of the different regions of Canada, as well as a diversity of community members, service providers and researchers who have expertise working with Pakistani and Ethiopian newcomer communities. The results will be used to inform the development of culturally competent toolkits, including all-important resources that Pakistanis with HCV, Ethiopians living with HIV, and those providing services to them, can rely upon on a day-to-day basis to increase their access to HIV and HCV treatments.
HIV and Co-Morbidities – Getting a clearer picture of the realities and access needs An increasing number of people in Canada living with HIV are also living with other serious medical conditions, often referred to as “co-morbidities.” For some, these co-morbid conditions predate their HIV diagnosis. For an increasing number of people living with HIV, the chance of developing co-morbidities is associated with living long-term with HIV, and taking HIV antiretroviral and other medications. Treating common co-morbid conditions such as cardiovascular disease, type 2 diabetes, and liver and kidney disease, can make the medical management of HIV more challenging, and vice versa. CTAC has been working to identify the most common co-morbidities experienced by people living with HIV, the most common, safest and most effective medications used to treat these conditions, and to track their cost and drug coverage across provincial, territorial and federal prescription drug programs. All of this essential information will be included in CTAC’s Treatment Access Map.
Canadian Common Drug Review – Supporting patient input into publicly funded drug plans In 2015, CTAC was recognized by the Canadian Agency for Drugs and Technologies in Health (CADTH) for excellence in providing Patient Group Input to the Common Drug Review (CDR). This year, CTAC provided seven Patient Group Input reports to CADTH and three responses to Therapeutic Reviews on new drugs. CTAC is proud of our long-standing representation of patient interests, and continues to be motivated to improve and enhance how we engage people living with HIV and hepatitis C in the Canadian drug regulatory process. The CDR is a health technology assessment (HTA) body that reviews drugs and treatments for safety, efficacy, and inclusion on our public drug plans. As part of that process, the CDR solicits patients’ and patient groups’ opinions and attitudes about treatments under review. CTAC has used webinars to standardize the process by which we exchange knowledge about new and emerging treatments. Our webinar-survey model for Patient Input has been emulated by other patient groups and CTAC is committed to continuing to engage in this process with excellence.
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CTAC ANNUAL REPORT 2014–2015
No More Silos – Sharing successful service integration models In early 2014, CTAC published its good practices guide No More Silos, an informative document for organizations considering or implementing integrated HIV/HCV services. Motivated by scheduled integration of the Public Health Agency of Canada’s (PHAC) HIV, HCV and sexually transmitted infection funding programs, No More Silos (NMS) was designed in consultation with community stakeholders to help groups navigate and manage program integration. NMS details successful change management strategies, highlights successful integration programming, and raises important questions for agencies to keep in mind while they introduce new programming to their organizational mandates and clients. One of the principal findings of NMS was that many organizations were already offering HIV/HCV integrated services, but very few identified them as integrated. There was (and continues to be) many questions about integrating services and – for those already integrating without naming it as integration – how to identify and promote successful programming. In the spring of 2015, CTAC held workshops throughout the country in the spring of 2015 to increase the capacity of community-based organizations to design and implement HIV/HCV integrated services. Over 50 frontline staff, program managers, and executive directors from 15 different agencies participated in these workshops and presentations. Stakeholders provided valuable feedback on NMS workshops, and resoundingly evaluated the workshops successful. CTAC will continue to lead the discussion on successful service integration practices.
CTAC TALKS! – Informing and educating through videos CTAC continues to produce informative videos—to educate, inform and motivate allies and stakeholders—around contemporary issues in HIV and HCV treatment access. This year CTAC staff developed and produced four videos: Hepatitis C in Canada: Prevalence, Treatment, and Access to Drugs; The Language of Risk; The Treatment Access Map; and Understanding Approval and Public Listing of Drugs in Canada. Each has been viewed hundreds of times, and all have been shared by agencies across the country. We continue to enjoy positive and enthusiastic response, and will continue to engage and inform using this medium.
CTAC ANNUAL REPORT 2014–2015
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Events and Activities CTAC board and staff are continuously engaging with our ever-expanding networks of service-providers, and regional and national partners. We are regularly invited to local, regional and national events—workshops, research conferences, annual general meetings-- to share information on HIV and HCV treatment and access issues. We keep abreast of developments in treatment access and to identify innovative HIV and HCV programs and services that promote access.
Presented Innovative Approaches to Strengthening Patient Input Submissions, presented at the Canadian Agency for Drugs and Technologies in Health (CADTH) Symposium on Health Technology Assessment
Positive Sex Workshops
April 7 and 8, 2014, Gatineau, QC
• Rainbow Youth Centre
• Nova Scotia HIV-STBBI Knowledge Exchange Forum May 28, Halifax, NS
• Pacific AIDS Network Fall Conference October 22, 2014, Vancouver, BC February 9, 2015, Regina, SK
2014 HCV Treatment Development Pipeline, panel discussion and workshop, Nova Scotia HIV-STBBI Knowledge Exchange Forum May 30 and 31, Halifax, NS
Current issues being faced in the Canadian context , Viiv Annual Canadian Team meeting April 7, 2014, Quebec, QC
• Alliance for South Asian AIDS Prevention and Asian Community AIDS Services February 12, 2015, Toronto, ON
HIV/HCV Integration and No More Silos workshops took place between February 2015 and April 2015 • AIDS Vancouver Island Victoria, BC
• HIV Edmonton Edmonton, AB
Toward a National Strategy on Hepatitis C in Canada, presented at 4th Canadian Symposium on HCV
• All Nations Hope
February 27 and 28, 2015, Banff, AB
• AIDS Committee of Toronto
Regina, SK Toronto, ON
Strengthening the Pillars of Treatment Access, workshop at 23rd Annual Canadian Conference on HIV/AIDS Research May 1-4, 2014, St. John’s, NL
HIV/HCV Co-infection, workshop at AIDS Committee of Toronto
• AIDS Community Care Montreal Montreal, PQ
• AIDS Coalition of Nova Scotia Halifax, NS
• National Partners in Canada’s HIV Response (webinar)
July 3, 2014, Toronto, ON
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CTAC ANNUAL REPORT 2014–2015
Attended AASLD (American Association for Studies of Liver Disease) Special Conference on Hepatitis C
Advisory Boards and Working Groups
September 12 and 13, 2014, New York, NY
• AbbVie Community Advisory Board
CATIE’s Deliberative Dialogue on HIV/HCV Service Integration February 11 and 12, 2014, Toronto, ON
International AIDS Society Conference on HIV Pathogenesis, Treatment & Prevention July 20 to 25, 2014, Melbourne, Australia
CTAC information Booth, Vancouver Pride
• Action Hepatitis Canada Steering Committee • CTN’s Selection Committee for the Community Advisory Committee (CAC) • Ethno Specific Treatment Support Network (ETSN) • Janssen Community Advisory Board • National Coordinating Committee on HIV and Aging • ViiV Community Advisory Board
August 3, 2014, Vancouver, BC
Abbvie Treatment Support Programs Consultation May 2014, St. John’s, NFLD
CTAC ANNUAL REPORT 2014–2015
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CTAC ANNUAL REPORT 2014–2015
2015
2014
Revenue
$707,161
$725,261
Expenses
$680,332
$722,502
Excess (deficiency) of revenue over expense
$26,829
$2,759
Fund balances beginning of year
$203,069
$200,310
Fund balances end of year
$229,898
$203,069
Financial Statements The following is a summary of selected financial information from CTAC’s audited financial statements for the year ending March 31, 2015. Full statements are available upon request, through the CTAC office.
Revenue
$707,161
Public Health Agency of Canada
$560,051
(79%)
Industry Funding
$112,800
(16%)
$30,000
(4%)
$4,310
(1%)
Program Sponsorship Other
Expenses* HIV & HCV Programs
$582,384
(86%)
Rent, telephone and utilities
$62,690
(5%)
Administration and Other
$35,258
(9%)
$680,332
* Please note that some expenses have been reassigned between categories to more accurately reflect organizational spending.
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2014–2015 Funders and Partners We would like to acknowledge the leadership, guidance and support provided by so many partners, community members, experts and other stakeholders whom we’ve had the pleasure to work with this past year. Your support allows us to continue to identify, develop and implement policy and program solutions promoting treatment access and the health and human rights of people living in Canada living with HIV and HCV.
Advancing Therapeutics. Improving Lives.
National Partners
Other Key Partners
Canadian Aboriginal AIDS Network
Best Medicines Coalition
Canadian AIDS Society
Action Hepatitis Canada
Canadian HIV/AIDS Legal Network Canadian Institutes of Health Research Canadian Public Health Association Canadian Working Group on HIV and Rehabilitation CATIE Interagency Coalition on AIDS and Development © 2014–2015 Canadian Treatment Action Council (CTAC) Visit us: www.ctac.ca
Interagency Coalition on AIDS and Development
Translation: Jean Dussault, Nota Bene communication notabene@globetrotter.net
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CTAC ANNUAL REPORT 2014–2015