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Strengthening the Pillars of Treatment Access in Canada 2013 Conference Program and Annual General Report


Design & layout: www.pulpandpixel.ca Translation: Christopher Ellis Copy editor: Yvan Brière

www.ctac.ca


Joint Letter from the Chair and the ED A message from Terry and Derek

As the year comes to a close, we are proud to report that CTAC realized a number of successes over the course of 2012-2013. At last year’s AGM, CTAC’s Board and Council jointly developed a roadmap to guide our policy work. As a result, throughout the course of the year, CTAC achieved a number of its programmatic and policy goals. For example, in consultation with a national expert advisory committee, we substantially increased awareness of HIV/HCV co-infection through an innovative webinar series, facilitated by people with lived experience. Through the Tools for Access project, we developed curricula on treatment access barriers designed for specific communities of people living with HIV and hepatitis C, in the process deepening our understanding of potential policy and program interventions to increase treatment access. Using a Community Facilitator Training model, CTAC built capacity among a new group of people living with HIV to hold workshops and information sessions in communities across Canada. And in collaboration with a group of nationally prominent research scientists, CTAC initiated development of a treatment access research agenda. Finally, in Two Standards of Care: toward treatment equity for people living with HIV/HCV co-infection, a recently published position paper, CTAC described (for the first time) the exclusion of HIV/HCV co-infected people from clinical trials of novel HCV therapies, which has resulted in significant delays for this population in accessing promising treatments. Looking forward, it’s clear that in Canada, we’ve reached a turning point for treatment access. As many HIV medications go off patent, treatment costs may become lower, thereby improving access, but it’s critical not to lose sight of the fact that we still need better treatments – with simpler dosing requirements and fewer long-term adverse events. A flurry of drug development advances has raised the prospect of a well-tolerated, functional cure for hepatitis C by the end of the decade, but profound access barriers are likely to pose challenges for those most in need.

Terry Pigeon

Chair, Board of Directors

Shockingly, for a country as advanced as Canada, treatment access remains poor for the most marginalized individuals, especially people with HIV who are homeless or precariously housed, indigenous people, women, transgender people involved in commercial sex, and newcomers to Canada. Furthermore, addressing the future of HIV and hepatitis C treatment access must always go hand-in-hand with support for HIV cure research. As Canada’s leading civil society organization addressing access to treatment, care and support for people living with HIV and HCV, CTAC will continue to engage in a wide spectrum of challenges in the coming year, including: • Government austerity measures that are set to limit treatment access through the patient-unfriendly PanCanadian Purchasing Alliance, as well as cuts to primary health care; • Policies, programs and services must increase access to treatment and health services in communities and settings with disproportionate barriers, guided by input from people with lived experience; • Innovative treatment access programs such as adherence support groups and peer navigation programs must be rolled out more widely across the country • Realizing the promise of a functional HCV cure, soon to be medically available, will require a significant scale-up in public funding; • Our health system must support HIV cure research and begin planning to meet medical delivery challenges as we prepare for HIV eradication instead of HIV treatment. As we end the current, and begin a new year, CTAC’s members, Council, Board of Directors and staff are energized, enthusiastic and committed to pursuing an agenda that is driven by people living with HIV and hepatitis C every step of the way. Please join us!

Derek Hodel

Interim Executive Director

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September 16, 2013

Strengthening the Pillars of Treatment Access in Canada Eaton Chelsea Hotel • Toronto, Canada September 16-17, 2013

Treatment 8:00-9:00 9:00-9:15

Breakfast and Registration

9:15-10:00

Seven Ways to Speed Up the Pipeline

10:00-10:15

Opening Remarks and Presentation of the Treatment Access Bill of Rights

10:15-10:30 10:30-11:30

Break

11:30-11:50 11:50-12:50 12:50-13:50

Plenary Discussion – Panel Q & A

13:50-14:10 14:10-14:25 14:25-15:25

Plenary Discussion – Panel Q & A

15:25-15:45 15:45-16:00 16:00-17:00

Plenary Discussion – Panel Q & A

17:00-17:30

Plenary Discussion – Panel Q & A

17:30-17:45

Adjournment

Welcome from CTAC Welcome: Terry Pigeon, CTAC Chair Territorial Acknowledgement and Prayer: Claudette Cardinal, CTAC Board Keynote Speaker: Mark Harrington, Treatment Action Group, New York Derek Hodel, CTAC, Toronto

Panel: Toward a Treatment Access Program of Research Chair: Paul Sutton, CTAC Panelists: • Alex McClelland, Concordia University, Montreal • Dr. M-J Milloy, BC Centre for Excellence, Vancouver • Dr. Marilou Gagnon, University of Ottawa, Ottawa

Lunch Panel: Two Standards of Care: toward treatment equity for people with HIV/HCV co-infection Chair: Mikiki, CTAC Board Panelists: • Dr. Josée Brisebois, Gilead Sciences, Mississauga • Dr. David Wong, Toronto Western Hospital, Toronto • Paul Sutton, CTAC, Toronto

Break Challenges in HIV Clinical Care Chair: Jolene Donatelli, CTAC Panelists: • Dr. Roxana Alexa, Health Canada, Ottawa • Rosemarie Clarke, Toronto General Hospital, Toronto • Dr. Jacqueline Gahagan, Dalhousie University, Halifax • Dr. Margaret Dykeman, University of New Brunswick, Fredericton

Break Panel: New Treatments, Less Access? Chair: Barbara Santosuosso, CTAC Panelists: • Karen Lee, Canadian Agency for Drugs and Technologies in Health, Ottawa • Dr. Ahmed Bayoumi, St. Michael’s Hospital, Toronto • Sean Hosein, CATIE, Toronto

17:20-17:30 Introduction to the Treatment Access Map

Conference Sponsored by:

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Strengthening the Pillars of Treatment Access in Canada: 2013 Conference Program and Annual General Report

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September 17, 2013

Strengthening the Pillars of Treatment Access in Canada Eaton Chelsea Hotel • Toronto, Canada September 16-17, 2013

Access 8:00-9:00 9:00-9:40

Breakfast Is Treatment as Prevention Increasing Treatment Access? Part 1: Data Keynote Speaker: Dr. Bodhan Nosyk, Simon Fraser University, Burnaby

9:40-10:25

Panel: Is Treatment as Prevention Increasing Treatment Access? Part 2: Interventions Chair: Paul Kerston, CTAC Panelists: • Charles Osborne, Positive Living Society of British Columbia, Vancouver • Shannon Froehlich, Positive Living North, Prince George • Dr. Adrian Guta, Carleton University, Ottawa

10:25-10:45

Plenary Discussion – Panel Q & A

10:45-11:00 11:00-12:00

Break

12:00-12:15 12:15-13:15 13:15-14:00

Plenary Discussion – Q&A

14:00-14:20

Concluding Remarks

14:20-14:30 14:30-15:00

Adjournment

(including Dr. Bodhan Nosyk)

Linking Immigration and Refugee Policy to Treatment Access Chair: Paul Sutton, CTAC Panelists: • John Norquay, HIV/AIDS Legal Clinic of Ontario, Toronto • Maureen Owino, Committee for Accessible AIDS Treatment, Toronto • Dr. Paul Caulford, Scaborough Community Volunteer Clinic, Toronto

Lunch Call to Action: Furthering the Access Agenda Chair: Derek Hodel, CTAC Panelists: • Richard Elliott, Canadian HIV/AIDS Legal Network, Toronto • Ken Chan, Cystic Fibrosis Canada, Toronto • Shannon MacDonald, Research-Based Pharmaceutical Companies (Rx&D), Ottawa Keynote Speaker: Dr. Gail Beck, Canadian Medical Association, Ottawa

Break

15:00-16:30 Annual General Meeting Conference sponsored by:

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Speakers Roxana Alexa, PhD Health Canada

Dr. Alexa is Acting Manager in the Office of Clinical Trials, Therapeutic Products Directorate, Health Products and Food Branch at Health Canada. She has extensive clinical experience and therapeutic product regulatory review experience with regard to clinical trial applications in various disease settings. She actively contributed to departmental initiatives to update and develop new guidance documents to support sound scientific research and the development of new therapeutic products.

Ahmed Bayoumi, MD, MSc

Centre for Research on Inner City Health Dr. Ahmed Bayoumi is a Scientist at the Centre for Research on Inner City Health and a General Internist at St. Michael’s Hospital. He is an Associate Professor at the University of Toronto and holds a CIHR / Ontario Ministry of Health & Long Term Care Applied Chair in Health Services and Policy Research focusing on equity and resource allocation. Dr. Bayoumi’s research interests include economic evaluation and the delivery of health services, particularly to marginalized populations. He has worked with large observational databases. His interests also include decision analysis and health status measurement, predominantly related to HIV infection and illicit drug use.

Gail Beck, MD

Canadian Medical Association Dr. Gail Beck is the Director of Youth Inpatient Psychiatry at the Royal Ottawa Mental Health Centre. She has been working in children’s mental health throughout her 27 year career. Recently, Dr. Beck was named to the Order of Ontario. Dr. Beck also serves on the boards of the Canadian Medical Association, the Ontario Medical Association, and the Foundation of the National Museum of Science and Technology. She is also a past president of the Ottawa Chapter of Bereaved Family of Ontario.

Josée Brisebois, PhD

Gilead Sciences Canada Incorporated Dr. Josée Brisebois, Medical Director at Gilead Sciences Canada Inc., has been actively involved in antiviral research for nearly 20 years. After completing her doctorate in Microbiology-Immunology and post-doctoral training at Boehringer-Ingelheim, Dr. Brisebois joined the Clinical Research group at Merck Canada. Through her leadership roles in Clinical Research and Medical Affairs, and more recently at Gilead Sciences, she developed a keen interest in Public Health and Ethics issues as they relate to drug development and access. While she has extensive experience across several therapeutic areas including vaccines, oncology, and respiratory, she has maintained a strong focus on HIV and HCV.

Paul Caulford, MD

Scarborough Community Volunteer Clinic Dr. Caulford is the Medical Director of the Scarborough Community Volunteer Clinic and the Canadian Centre for Refugee and Immigrant Healthcare. Dr. Caulford received his medical degree from the University of Toronto in 1978. Prior to that he completed his Master’s degree in clinical research at Toronto’s Hospital for Sick Children. Since graduation he has practiced community-based family medicine in Scarborough, one of Canada’s most ethno-racially diverse communities. His primary clinical and research focuses are vulnerable populations within Canada’s healthcare system. He has a primary focus on refugee and immigrant healthcare.

Ken Chan

Cystic Fibrosis Canada Ken Chan joined Cystic Fibrosis Canada in December 2011 where he is Vice President for Advocacy, Research and Healthcare. Mr. Chan has held various senior positions with the Ontario Government, including Chief of Staff to the Minister of Natural Resources and Director of Policy and Legislative Affairs in the Office of the Deputy Premier and Minister of Health. His experience also spans internationally where he was an Assistant Director with the British Government’s Better Regulation Executive, part of the UK Department for Business, and an advisor in the Mayor’s Office in London, UK.

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Rosemarie Clarke, BScN, RN, CCRP, MHM Toronto General Hospital

Rosemarie Clarke works in the Immunodeficiency Clinic at the Toronto General Hospital, where she is currently the Research Nurse Manager in the HIV Research department. Ms. Clarke received her BScN with honours from Ryerson University and is currently working on her master’s degree in Health Management at McMaster University. Ms. Clarke has been working as a nurse at TGH for over 25 years and has worked specifically in HIV Research for the past 14 years. She believes that understanding the patient’s perspective and true customer service are key components of patient care. Her approach to care is patient partnership in care.

Margaret Dykeman, PhD University of New Brunswick

Dr. Margaret Dykeman is a retired professor from the Faculty of Nursing, University of New Brunswick (UNB), Fredericton. Dr. Dykeman currently holds the position of Honorary Research Professor. She has extensive experience in the clinical fields of HIV, HCV, and addictions that spans over 20 years as a nurse practitioner. In addition to her clinical experience, she has been involved with a number of community based research projects in both the United States and Canada. She currently is a Co-PI on a number of HIV, HCV and addiction research projects in Atlantic Canada and Alberta that have been funded provincially and through grants from CIHR.

Richard Elliott, LLB

Canadian HIV/AIDS Legal Network Richard Elliott is a lawyer and the executive director of the Canadian HIV/AIDS Legal Network, which advances the human rights of people living with and communities particularly affected by HIV and AIDS. Mr. Elliott joined the Legal Network staff in 1999 and became its Executive Director in 2007. He was a member of the Ministerial Council on HIV/AIDS, the advisory body to Canada’s Minister of Health, and in 2010–2011 he served as a member of the Technical Advisory Group of the Global Commission on HIV and the Law. He is also a member of the International Advisory Committee of the International Centre for Human Rights and Drug Policy. Mr. Elliott is a founding member of the Global Treatment Access Group (GTAG), a coalition of Canadian civil society organizations advocating for access to medicines and other aspects of the right to health in developing countries. In 2012, he received a Queen Elizabeth II Diamond Jubilee Medal for his contributions to the advancement of human rights related to HIV.

Shannon Froehlich

Positive Living North Society Shannon Froehlich is a Cree Métis woman who grew up in the central interior of British Columbia. At the age of 24 she began working with the Aboriginal people of Northern British Columbia. This work eventually led her to her current position as Support Services Manager at Positive Living North Society, the only ASO in Northern BC. She advocates for better care and support for those living with HIV, AIDS and HCV in Northern BC. In her work, Ms. Froehlich strives to ensure that people are treated equally, without judgement or stigma, and that a person’s life is respected and honored.

Marilou Gagnon, RN, ACRN, PhD University of Ottawa

Dr. Gagnon is an Associate Professor at the School of Nursing, Faculty of Health Sciences, University of Ottawa and Director of its Unit for Critical Research in Health. Her work is underpinned by critical and sociopolitical approaches. As a member of the University Chair in Forensic Nursing, she is working on projects on HIV criminalization, HIV-related stigma and discrimination in health care settings, and human rights. She served on the Board of Directors of the Canadian Association of Nurses in AIDS Care (CANAC) and has twice consecutively been elected as its Quebec representative (2009-2013). She currently serves as an Expert Advisor on Policy, Research, and Advocacy for CANAC and as Vice-Chair of the Canadian HIV/ AIDS Legal Network’s Board of Directors. She also sits on the Board of Directors of the Bureau régional d’action sida (BRAS) in Gatineau where she is an active member and volunteer.

Jacqueline Gahagan, PhD Dalhousie University

Dr. Jacqueline Gahagan is Professor of Health Promotion and Head of the Health Promotion Division at Dalhousie University and is also Director of its Gender and Health Promotion Studies Unit which focuses on health promotion research and policy analyses related to the intersectionality of gender and other key determinants of health on health outcomes. Dr. Gahagan holds cross appointments in Community Health and Epidemiology, International Development Studies, Gender Studies, Occupational Therapy, Nursing and is an Affiliate Member of the European Union Centre for Excellence and the Health Law Institute at Dalhousie University. Dr. Gahagan has been involved in the field of HIV/AIDS since the late 1980s.

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Adrian Guta, MSW, RSW, PhD Carleton University

Dr. Adrian Guta MSW, RSW, PhD holds a doctorate in Public Health Sciences and Bioethics from the University of Toronto. His research examines various aspects of HIV treatment and prevention, including the role of biomedical technologies, health policy, and community engagement strategies, through a critical public health and critical bioethics lens. Dr. Guta is currently supported by a CIHR Postdoctoral Fellowship in Health Services/Population Health HIV/AIDS Research and a CIHR-STIHR fellowship in Health Care, Technology, and Place (HCTP).

Mark Harrington

Treatment Action Group Mark Harrington joined ACT UP in 1988, five years after receiving his bachelor’s degree from Harvard University. In 1992, Mark and 20 other AIDS activists cofounded the Treatment Action Group (TAG). TAG’s groundbreaking AIDS Research at the NIH: A Critical Review (1992), led to federal legislation restructuring the NIH AIDS research effort and strengthening the NIH Office of AIDS Research, signed into law by President Bill Clinton in June 1993. Mr. Harrington received a MacArthur Foundation Fellowship in 1997, and that same year he became TAG’s senior policy director. Executive Director of TAG since 2002, he served on the U.S. Department of Health and Human Services (DHHS) Panel on Antiretroviral Guidelines for Adults and Adolescents from 1996 to 2008 and is a member of the WHO advisory groups for tuberculosis (TB) and for HIV, and of the Stop TB Partnership’s Global TB/HIV Working Group and its Multidrug Resistant (MDR)-TB Working Group. Mr. Harrington has coauthored papers published in the Lancet, PloS Medicine, and Science.

Sean Hosein

Canadian AIDS Treatment Information Exchange (CATIE) Sean Hosein is the Science & Medicine Editor at CATIE—Canada’s agency for information about the prevention and treatment of HIV and hepatitis C and associated infections. He is one of the founders of CATIE, established in 1990. He has been an advisor to the CIHR’s Institute of Infection and Immunity for most of the past decade. In 2009 Mr. Hosein received a citizenship engagement award from CIHR recognizing his life-long contribution in the fight against HIV and other infections.

Karen Lee, MSc

Canadian Agency for Drugs and Technologies in Health (CADTH) Karen Lee is the Director of Health Economics at CADTH, where she has worked for almost 10 years, with experience in health economics that spans across 15 years. Her work has focused on the evaluation of pharmaceuticals through the development and assessment of dynamic epidemiologic models. Ms. Lee also works with academia and is a lecturer with the University of Ottawa’s Masters of Epidemiology program.

Shannon MacDonald

Canada’s Research-Based Pharmaceutical Companies (Rx&D) Shannon MacDonald joined Rx&D as Vice President of Public Affairs and Partnerships in 2011. Ms. MacDonald has been a public affairs professional serving public, private and non-profit sector clients for more than 20 years. Within the health sector, she  has worked across a number of therapeutic areas  serving health  charities, patient advocacy groups and research organizations. Ms. MacDonald has worked most extensively within Canada’s neurological community where she established the Neurological Health Charities Canada (NHCC) coalition and led the coordinated patient advocacy effort to establish brain conditions as a public policy priority in Canada. She co-authored the NHCC’s framework for a national brain strategy and co-chaired Canada’s first-ever National Population Study of Neurological Conditions in Canada, working in collaboration with the Government of Canada’s health portfolio.

Alex McClelland

Concordia University Alex McClelland is a doctoral student in the Interdisciplinary Centre on Culture and Society at Concordia University. His work focuses on sociology, critical law studies and the intersections of criminal law and sexually transmitted infections and diseases. Mr. McClelland is the recipient of the 2013-2016 CIHR Doctoral Award in HIV/AIDS Community Based Research, is an alumnus of the UWW Fellowship from the CIHR Centre for REACH in HIV/AIDS (2009), and the 2008 recipient of the OAN Leadership Award. A CTAC board member, steering committee member for AIDS ACTION NOW!, and a board member of PASAN, Mr. McClelland has been living with HIV for the last 15 years.

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M-J Milloy, PhD

British Columbia Centre for Excellence in HIV/AIDS Dr. Milloy is a researcher at the British Columbia Centre for Excellence in HIV/AIDS and a post-doctoral fellow in the Faculty of Medicine at the University of British Columbia. He coordinates the AIDS Care Cohort to evaluate Exposure to Survival Services (ACCESS), an ongoing study involving people living with HIV/AIDS who use illicit drugs in Vancouver’s Downtown Eastside. His research focuses on the structural barriers and facilitators of HIV treatment and care for members of marginalized populations, such as those in the criminal justice system. His work is supported by the CIHR and the Michael Smith Foundation for Health Research.

John Norquay, LLB

HIV & AIDS Legal Clinic of Ontario (HALCO) John Norquay is the Staff Immigration Lawyer at the HALCO, the specialty legal aid clinic serving people living with HIV throughout Ontario. At HALCO he represents refugees and other immigrants living with HIV in a wide variety of immigration proceedings, and makes appearances at all divisions of the Immigration and Refugee Board and Federal Court. Mr. Norquay is widely consulted by the immigration bar regarding HIV and other medical issues and is involved in a number of law reform activities affecting refugees and immigrants with health concerns.

Bohdan Nosyk, PhD Simon Fraser University

Dr. Nosyk was appointed as Associate Professor and Endowed Chair, Economics of HIV/AIDS at the Faculty of Health Sciences in February 2013. Dr. Nosyk holds a Master’s degree in Economics and a doctorate in public health, with a concentration in health economics, both from the University of British Columbia. He previously served as a postdoctoral fellow at the University of California, Los Angeles and remains a Research Scientist at the BC Centre for Excellence in HIV/AIDS and Adjunct Scientist at the UCLA Integrated Substance Abuse Programs. He currently holds a Michael Smith Foundation for Health Research Scholar Award.

Charles Osborne Positive Living BC

After being diagnosed with HIV in 2002, Mr. Osborne became a volunteer with Positive Living BC doing outreach work, treatment presentation, and working with newly diagnosed and treatment naive individuals. Mr. Osborne has also been involved in a community based peer research study on food security and is presently working as a research associate on the Engage Study at the BC Centre for Excellence. Mr. Osborne has completed the PAN/OAN Leadership course and also assists the Positive Living Holistic Services as a Reiki practitioner. Mr. Osborne is a board member of The Keys: Housing and Health Solutions in Surrey, the Pacific AIDS Network and a member of the Community Advisory Committee of the Canadian HIV Trials Network.

Maureen Owino

Committee for Accessible AIDS Treatment (CAAT) Maureen Owino is the Director of the CAAT, an organization committed to promoting the health and wellbeing of people living with HIV/AIDS who are facing access barriers related to their status. Originally from Kenya, she migrated to Canada seven years ago. Since then, she has focused on advocacy for LGBTQ people, women, immigrants and people living with HIV. Ms. Owino serves on the Board of Directors for the Global Network of People Living with HIV- North America and the Black Coalition for AIDS Prevention. She also serves as a steering committee member for the Toronto HIV Network and as an active volunteer with the African and Caribbean Council on HIV/AIDS in Ontario.

Paul Sutton

Canadian Treatment Action Council (CTAC) Paul Sutton has been a Policy Researcher at CTAC since October 2011, with work focusing on the organization’s hepatitis C and HIV/HCV co-infection portfolios, patient group submissions on new medications and research program. He holds Master of Arts degrees from York University in English Literature (2007) and from McGill in Communication Studies and Gender and Women’s Studies (2009). At McGill, his research focused on intersections between health promotion messaging and neoliberal economic policy, with a specific focus on how substance use has been regulated through state power in Canada since 1984. Prior to joining CTAC, he worked in gay men’s health at Regional HIV/AIDS Connection in his hometown of London, Ontario.

David Wong, MD

Toronto Western Hospital Dr. David Wong is a Hepatologist at the University of Toronto with an interest in viral hepatitis and liver disease in people living with HIV. He works at the Toronto General Hospital Immunodeficiency Clinic, the St. Michael’s Positive Care Clinic and the Toronto Western Hospital Francis Family Liver Clinic. In addition to clinical training in Gastroenterology at McMaster, Dr. Wong’s training includes a post-doctoral fellowship at Harvard working on the immune responses to hepatitis C.

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2013 Annual General Report


Who we are: The names behind CTAC Council:

Board of Directors:

John Baker

Newfoundland and Labrador Representative

Terry Pigeon

Willie Blackmore

Chair

Positive Living Society of British Columbia

Alex McClelland

Vice-Chair

Michael Sangster Treasurer

Lisungu Chieza Secretary

Claudette Cardinal Paul Kerston Mikiki

Staff:

Derek Hodel

Karen Dennis

Representative of current and former substance users

Richard Elliott

Canadian HIV/AIDS Legal Network

Walter Ewing

Jim Kane

Interim Executive Director

Jolene Donatelli

Programs Manager

Paul Sutton

Ontario Representative Canadian AIDS Society

Michel Long

Policy Researcher

Canadian Hemophilia Society

Barbara Santosuosso

Ken Monteith

Policy Researcher

COCQ-Sida

Kimberly Bennett

Marvelous Muchenje

Communications Coordinator

Shraddha Shah

Finance Officer

CATIE

Charles Osborne

British Columbia Representative

Toronto People with AIDS Foundation

Shane Patey

Ron Rosenes

AIDS ACTION NOW!

Michael Sangster

Nova Scotia Representative

Strengthening the Pillars of Treatment Access The core of CTAC’s work is Strengthening the Pillars of Treatment Access. To that end and to inform our work, CTAC is currently focusing on four pillars: • • • •

GIPA and individual control over the determinants of health for personal empowerment Holistic Treatment and the entire spectrum of therapeutic care including: complimentary, alternative and biomedical treatments The Cascade of Care (including diagnosis, treatment initiation, treatment retention as well as care and support) to improve people’s experience living with HIV and HCV Social change, including system reforms

Our collective goal is to strengthen the pillars of treatment access. Together, we will drive change and end treatment access barriers for all people living with HIV and HCV in Canada.

Strengthening the Pillars of Treatment Access in Canada: 2013 Conference Program and Annual General Report

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CTAC Programs 2012-2013 CTAC’s overall program ensures that our interventions: • • • •

Create interdisciplinary research on health access Develop and implement policy alternatives Promote good practices in expanding access to health services Increase public awareness and consciousness by addressing stigma

Treatment Access Bill of Rights

Policy Interventions Treatment Access Bill of Rights Following the 2012 Board and Council AGM meeting, CTAC prepared a policy paper and hosted two policy roundtables (April and August 2013) to support the work of community members, researchers, policy makers and service providers in producing a Treatment Access Bill of Rights in Canada. This is especially relevant for people living with HIV, because as it becomes increasingly possible to treat HIV as a chronic, manageable disease, it will be imperative for health systems to eliminate barriers and maximize health outcomes. Two Standards of Care: toward treatment equaity for people living with HIV/HCV co-infection Emphasizing CTAC’s co-infection mandate and underscoring the unprecedented number of drugs to treat hepatitis C in the development pipeline, CTAC published a policy paper (July 2013) addressing the gap between standards of care for people who are mono-infected with HCV versus those who are co-infected with HIV and HCV. These treatment access delays stem from clinical trial designs, and persist through the Common Drug Review (CDR) and public formulary decision-making processes.

Two Standards of Care: toward treatment equality for people living with HIV/HCV co-infection

GIPA

GIPA The main areas of focus that emerged from a policy roundtable (Nov 2012) on the practical, organizational implementation of GIPA were ‘diversity’ and ‘integration’. This guided a literature review that will provide the foundation for an upcoming position statement and preliminary recommendations. To ensure the practical implementation of GIPA theory, CTAC also designed and delivered a GIPA workshop to community members, frontline service providers and researchers (Oct 2012 and March 2013).

Tools for Access

Tools for Access From July to December 2012, CTAC developed a series of practical curricula and fact sheets for addressing population-specific treatment access barriers among: Women • People who use drugs • Aboriginal Peoples • Newcomers to Canada • Young people • HIV/HCV co-infection • Incarcerated people

The curricula represent a synthesis of surveillance data, peer-reviewed academic literature, grey literature and narrative accounts, and were vetted in consultation with service providers and people living with HIV and HCV. Each curriculum includes: • • • • •

a population-specific overview a detailed account of structural, social and personal treatment access barriers the impacts of HIV stigma and discrimination on treatment, care and support a summary of the major barriers to holistic treatment access actions that can be taken to improve treatment access barriers through tools, solutions and alternatives

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PROJECTS Capacity Building for Community Leaders To provide action-oriented resources for community members to identify, explore and address issues related to access to treatment and health care, CTAC developed a skills building program (March 2013) for working among communities of people living with HIV and HCV, including a facilitator workbook, a toolkit and a 3-day in-person Train the Trainer session. The program was developed in consultation with frontline service providers and people living with HIV and HCV. CTAC Talks CTAC produced four CTAC Talks! webisodes to highlight treatment access issues and solutions for Canadians living with HIV and hepatitis C. These videos summarize key conference learnings and offer take away messages based on new evidence, emerging trends and developments in the HIV and HCV sectors, as well as good programming practices. Catch webisodes 1 – 4 on our YouTube channel*. Positive Sex This innovative, day-long workshop provides people living with HIV and HCV the opportunity to negotiate disclosure for sex via roleplay of various disclosure scenarios. By exploring disclosure in practice and in consequence, the workshop helps participants develop disclosure confidence and discover ways of externalizing negative responses in order to equip people to have better disclosure experiences. To encourage the national dissemination of Positive Sex workshops, CTAC developed a facilitator’s guide, and has undertaken a literature review that will contribute to the evidence-base on HIV disclosure, stigma and positive prevention theory. Common Drug Review Patient Input Submissions As a patient interest group, CTAC plays a key role in ensuring that the voices of patients and other health consumers are heard in the process of bringing drugs to market. Through its involvement in Health Technology Assessments, CTAC attempts to ensure that issues of importance to people living with HIV and HCV (including tolerability, cost, health and social equity, among other considerations) are considered in the context of cost-effectiveness analyses. This year, CTAC implemented a 20-day lifecycle for its patient group CDR submissions, ensuring the systematic solicitation and delivery of patient feedback into the drug approval process. Interactive Treatment Access Map CTAC is in the process of developing a comprehensive, online Treatment Access Map, to allow people living with HIV and HCV to interactively access information on medication treatment options currently available in Canada (through provincial formularies and federal plans), as well as medications and new discoveries presently under development. This simplified information tool will benefit service providers as well and will offer links to forms required to apply for special access medications.

Interactive Treatment Access Map

* http://youtube.com/ctactalks

Common Drug Review Patient Input Submissions

CTAC Talks Capacity Building for Community Leaders

Positive Sex

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Presentations and Conferences 2012-2013 July 23-27, 2012

International AIDS Conference Washington, DC

CTAC booth in Global Village

Oct 17-18, 2012

CATIE’s National Deliberative Dialogue Toronto, ON

Facilitation: Breakout Session

Oct 31-Nov 1, 2012

BC Gay Men’s Health Summit Vancouver, BC

Presentation: Treatment Access at the Intersections

Nov 4-6, 2012

CATIE’s Educational Conference for Manitoba and Saskatchewan

Nov 11 – 13, 2012

Ontario HIV Treatment Network Research Conference

Winnipeg, MB Toronto, ON

Facilitation: Research Café and Challenge Panel: HCV Treatment Poster: National Co-infection Program

Jan 14 – 15, 2013

International Workshop on HIV & Women

March 4, 2012

Canadian Symposium on the Hepatitis C Virus

March 15-17, 2013

Alberta Positive Voices Conference

Toronto, ON Victoria, BC

Nordegg, AB

Presentation: The Impact of Stigma on the Emotional Wellbeing of Women and Introduction to the Positive Sex Workshop

March 25-26, 2013

International Conference on Viral Hepatitis

April 10-14, 2013

Canadian Association for HIV Research

New York, NY

Vancouver, BC

Poster: Putting Co-infection on the Map and Am I Included?

May 9-10, 2013

Gay Men’s Sexual Health Alliance

May 24-25, 2013

Rethinking Drug Coverage

May 30, 2013

AIDS Committee of Toronto Research Day

June 6, 2013

CMA’s Transformation of the Health Care System

Toronto, ON Ottawa, ON

Toronto, ON Toronto, ON

Presentation: Healthcare as a key issue for the next federal election

June 13, 2013

Legal Network’s Symposium on HIV, Law and Human Rights Toronto, ON

Presentation: Judged wanting: next steps after the Supreme Court rulings on HIV criminalization

CWGHR’s International Forum on HIV and Rehabilitation Toronto, ON

June 14, 2013

FDA’s Patient-Centric Drug Development Consultation

June 15, 2013

CAS’s People Living with HIV Forum

Bethesda, MD (webinar) Ottawa, ON

Presentation: Introduction to the Positive Sex Workshop

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Financial Statements The following is a summary of selected financial information from CTAC’s audited financial statements for the year ending March 31, 2013. Full statements are available upon request, through the CTAC office.

2012 2013

6%

Revenue

Expenses

Excess (deficiency) of revenue over expenses

Fund balances, beginning of year

Fund balances, end of year

$673,756

$605,669

$68,087

$183,231

$251,318

$585,068

$636,076

-$51,008

$251,318

$200,310

2013 Revenue: $585,068

10% 84%

2013 Expenses: $636,076

Public Health Agency of Canada

$493, 595

Industry funding

$32,000

11%

8%

76%

PROGRAMS: Policy research, community engagement, knowledge exchange

5%

Other

$59,473

$484,765

Treatment access advocacy

$32,000

Rent, telephone and utilities

$71,193

Administration and other

$48,118

CTAC 2012-2013 Funders

Strengthening the Pillars of Treatment Access in Canada: 2013 Conference Program and Annual General Report

www.ctac.ca 13


Strengthening the Pillars of Treatment Access in Canada: 2013 Conference Program and AGR  

Prepared for the Canadian Treatment Action Council (CTAC) - 2013 The core of CTAC’s work is Strengthening the Pillars of Treatment Access....