17/18. Annual Report. Canada s voice for treatment access. Listening to and led by people with HIV and HCV
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1 Annual Report 17/18 Canada s voice for treatment access Listening to and led by people with HIV and HCV CTAC Annual Report 2018.indd 1
2 1 Joint Letter from the Chair and the ED A message from Terry and Shelina As we reflect upon , we are proud to report that CTAC continued to realize successes at a time of great turbulence both within the organization and within the federal government s response to HIV/AIDS and viral hepatitis health sector funding. April 1, 2017 saw the start of CTAC s final year of funding from the Public Health Agency of Canada as part of their transition year funding. This was a year of introspection and consolidation to ensure CTAC s continued contributions to the HIV and hepatitis C sectors. We made a concerted effort to reduce administrative costs and channelled our resources into projects and programs that furthered the mission of the organization. Through a strategic visioning exercise conducted by Rick Kennedy Consulting, we reclaimed our position within the sector and reaffirmed CTAC s commitment to remaining Canada s leading civil society organization addressing access to treatment, care and support for people living with HIV and HIV/hepatitis C. The core of our project activities in continued to focus on uncovering barriers to treatment access and equity, and communicating with patient groups and policymakers. On World AIDS Day 2017, we launched a report highlighting pan-canadian issues and gaps in access to HIV and hepatitis C treatment, care and support entitled Creating a Comprehensive Care Cascade: Increasing Access to HIV and hepatitis C Care Treatment and Support. While breakthrough treatments are now available, access to these treatments continues to be an issue for many, many people across Canada. CTAC s projects and programs continued to support Canada s commitment to the UNAIDS targets and the WHO commitment to eliminate hepatitis C as a public health threat. We remained vigilant about uncovering policy and structural barriers to treatment access that, if addressed, will help Canada achieve its commitments to UNAIDS by 2020 and WHO by In closing, we would be remiss not to mention the immeasurable time and effort CTAC staff, volunteers and board members have devoted to cultivating new relationships with partners and potential sponsors. We remain enthusiastic and hopeful that changes in our funding model will allow us to continue the unwavering advocacy work that we do and, most of all, to advocate even harder for people living with HIV and hepatitis C in Canada. Terry Pigeon Chair, Board of Directors Shelina Karmali Executive Director CTAC Annual Report 2018.indd 2
3 Highlights from our Programs and Projects 2 CTAC worked diligently towards facilitating knowledge exchange, consulting with stakeholders/patients, promoting awareness and increasing capacity in addressing HIV, HIV/hepatitis C co-infections. Highlights included: CTAC s Treatment Access Dialogue: The Fight s Not Over Yet: CTAC conducted a one day conference entitled The Fight Is Not Over Yet on November 1, The conference was attended by 80 individuals and received 3,000 twitter impressions. Community panels helped policy-makers appreciate the lived challenges in accessing treatment care and support for HIV and hepatitis C. Advocacy Campaign: The time has come to eliminate hepatitis C in Canada In early 2018, CTAC launched a campaign to eliminate hepatitis C in Canada. We called on the federal and provincial/territorial governments to meet our seven calls to action in a paper titled The Time Has Come to Eliminate Hepatitis C in Canada. Upon the release of the paper and through sustained action by hep C organizations across Canada, nearly all the provinces, territories, and federal drug plans removed restrictive eligibility requirements enabling anyone with a positive hep C test to be treated. That was a great win for all Canadians. التهاب الكبد الفريويس ج مرض عاملي Leakages in the HIV Care Cascade Through literature reviews and in speaking with people with lived experiences as well as service providers, CTAC aimed to uncover leakages in the HIV treatment care cascade in Ontario. The project aimed to identify policy and structural barriers as well as potential solutions and best practices for addressing: a) people who test positive for HIV who are lost to care; and b) people who are linked to care but are not retained in care. The final report will be published in the fall of Better Health for Newcomers/Refugees/Non-Status Individuals This project aimed to build the capacity of service organizations working with newcomer populations in the province of Ontario in the area of HIV and Hep C testing and treatment access policies and barriers. Eight workshops for settlement workers and eight workshops to newcomers were conducted. The participatory nature of workshops opened up a muchneeded space for dialogue and sharing of experiences. Resources in Urdu, Swahili, Chinese and Urdu helped people from endemic countries gain a better understanding of how to access treatment and care in Ontario. Much more work needs to be done to support people during a vulnerable time in their transition to make Canada their home. PrEP Workshop and Presentations CTAC updated the PrEP Regulatory fact sheet and Community Voices in PrEP fact sheet with information on availability of generic PrEP. Nine workshops were conducted, both locally and national, about policy barriers and ways to support broader access to PrEP in Canada. Access to PrEP on public formularies across Canada remains inconsistent. CTAC Annual Report 2018.indd 3
4 3 Highlights from our Programs and Projects TxMAP Workshops CTAC engaged in broad dissemination of the TxMAP to targeted audiences in the health care sector. Those dissemination activities were aimed at influencing prescriber practices, i.e., making the TxMAP their go-to source of information regarding the availability of publicly funded HIV and hepatitis C treatments. This was achieved through the formation of new relationships with: The Canadian Association of Nurses in HIV/AIDS Care (CANAC). The editor-in-chief of the Public Health Agency of Canada s Canadian Communicable Disease Report (CCDR) publication. The Canadian HIV and Viral Hepatitis Pharmacists Network (CHAP). Pharmacists Manitoba. English and French spacer notices were published in the Sept. 7, 2017 issue of the CCDR. An advertorial for the TxMAP was published in CHAP s Spring 2017 Newsletter. In addition to ongoing auditing, maintenance and updates, enhancements were made to improve the functionality and ease of navigation of the TxMAP. Patient Input Submissions CTAC continued to hold national consultation webinars to present clinical trial data to patient groups on new HIV and HCV medications under review for submission to the Canadian Agency for Drugs and Technologies in Health under the Common Drug Review process. It is critical for CTAC to sustain this activity in the future so that the provinces and territories are able to consider the voices of people taking the medications in making listing decisions for their public drug programs. We also developed a guide to preparing patient input submissions to help build the capacity of patient groups across all therapeutic areas. CTAC conducted ongoing HIV/HCV submissions to CADTH as follows: Glecaprevir Pibrentasvir: drug for HCV infection. Sofosbuvir Velpatasvir Voxilaprevir: drug for HCV infection. Dolutegravir Rilpivirine: drug for HIV infection. Darunavir/Cobicistat/Emtricitibine/Tenofovir Alafenamide: drug for HIV infection. Survey: Patient Engagement CTAC conducted a survey to understand the best ways in which to engage people with lived experiences and/or the people they work with who have treatment experience. The respondents indicated that they needed greater provincial support and that there was a need for building more relationships with under-represented communities. Additionally, they asked for more workshops and information sessions. The respondents also suggested that there was a need for more stories of treatment and access issues to be collected and shared. Another way of encouraging engagement would be to acknowledge the volunteer time of respondents by providing monetary incentives to participants. Lending Expert Opinion CTAC staff participated in the following coalitions and studies aligned with the organization s mission to share knowledge and provide expert opinion: Action Hepatitis Canada Best Medicines Coalition Correctional Coalition of Ontario CanPrEP Working Group OHTN Drug Coverage Study Advisory Committee CTAC Annual Report 2018.indd 4
5 4 Media Presense CTAC was featured in an article in MacLean s: Best Way to Prevent Spread of Infectious Disease by Dr. Vivien Brown; Pg , Vol. 130, No. 12, January CTAC launched a new website and increased their social media presence on Twitter and YouTube. We used workshops, conferences, social media, and webinars to disseminate our learning and work with people and organizations across Canada: CTAC Talks: CTAC produced and presented 12 videos as follows Eliminating hepatitis C in Canada PrEP: A game changer for HIV prevention in Canada? (FR) International Targets: Reaching and eliminating HCV (FR) Treating the sickest first: Exploring Hepatitis C treatment in Canada (FR) U=U: The Undetectable = Untransmittable campaign. (FR) Access to healthcare and treatment for newcomers living with HIV in Canada CTAC Patient Group Input Consultation: Glecaprevir Pibrentasvir PrEP access in Canada (FR) PrEP access in Canada (Update) Hepatitis C: a treatment revolution? (FR) Over criminalization of HIV in Canada: the impact on treatment access HIV Treatment Access: The Way Forward CTAC Annual Report 2018.indd 5
6 Finances 5 Revenue Expenses Excess (deficiency) of revenue over expense Fund Balance (Beginning of year) Fund Balance (End of year) 2018 $692,451 $692,346 $105 $221,311 $221, $716,528 $716,300 $228 $221,083 $221,311 REVENUE $692, Other $25,439 (3.6%) Industry Funding $75,917 (11.0%) 03 Public Health Agency of Canada $591,095 (85.4%) Administration & other $30,128 (4.4%) Rent, telephone & utilities $77,779 (11.2%) HIV & HCV programs $584,439 (84.4%) EXPENSES $692,346 *Please note that some expenses have been reassigned between categories to more accurately reflect organizational spending. CTAC Annual Report 2018.indd 6
7 Board Members & Staff 6 Board Members Arthur Dave Miller Vice-Chair, Treasurer and Regional Representative Atlantic Region Maggie McGinn Regional Representative Western Region Jasmine Cotnam Regional Representative - Ontario Region Patience Magagula Regional Representative Pacific Region Roger Tam Secretary and At-Large Director Terry Pigeon Chair, and Regional Representative Québec Region Staff Adam Cook Interim Program Manager Amanda Fletcher Barbara Santosuosso Program Manager (on leave) Divya Chakshu Finance & Office Administrator Gordon Shallard-Brown Communications Consultant Jack Mohr Jaspreet Soor David Aaron Antu Hossein Ngozi Iroanyah Rounak Faizi Khan Stakeholder Engagement and Special Projects Terry Santoni Research and Program Support / Communications Specialist Shelina Karmali Executive Director Thank you to our funders CTAC Annual Report 2018.indd 7
8 Annual Report /ctac_can Suite 612 /CTACtalks 555 Richmond St. West Toronto, Ontario M5V 3B1 (This address has changed, please refer to the website) CTAC Annual Report 2018.indd 8
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