CTAC is a national non-governmental organization run by and for people living with HIV/AIDS, including those who are co-infected. CTAC promotes informed public policy and builds awareness on issues that impede access to treatment and health care for people living with HIV/AIDS. Treatment is a broad concept, which includes western, traditional, complementary and alternative medicine.OUR MANDATE
To secure and ensure access to therapies, treatments and care for people living with HIV/AIDS, including those who are co-infected, by working with the public, private and not-for-profit sectors.
CTAC ...
- Informs research and public policy, and promotes public awareness
- Provides mentoring to, and skills building on, access to treatment, therapies and care to people living with HIV/AIDS, including those who are co-infected
- Encourages and facilitates the exchange of access to treatment related information to stakeholders
- Builds and works in coalition to address broader health care issues impacting access to treatment, therapies and care
OUR HISTORY
CTAC was created in 1996 to inform public policy, in response to the complexity of issues arising from the introduction of combination anti-HIV therapies. CTAC was also designed to provide an ongoing structured relationship between pharmaceutical companies and the HIV/AIDS community. CTAC maintains the role of a community advisory body today, providing not only policy and research related to treatment access issues directed at both pharmaceutical companies and government, but also related skills building activities targeting CTAC members and people living with HIV/AIDS across Canada.
OUR VALUES
CTAC values...
The Canada Health Act
- Protection of the spirit and principles of the Canada Health Act – public administration, comprehensiveness, universality, portability and accessibility.
Access to treatment
- Equitable, affordable and timely access to all HIV/AIDS treatment, care and support for all Canadians.
- Ethical standards in all HIV/AIDS treatment and research.
Individuals and communities
- The diversity of our communities, recognizing the influence and impact of the needs, challenges and strengths of all individuals and their respective communities.
- The voices of people living with HIV/AIDS, including those who are co-infected.
- The right of people living with HIV/AIDS, including those who are co-infected, to access the information and support necessary to make their own informed treatment choices and decisions.
- The development of treatment advocacy skills by and for people living with HIV/AIDS, including those who are co-infected.
- The contribution made by all individuals to the advancement of treatment related HIV/AIDS issues.
CTAC
- Openness, honesty, respect, autonomy and freedom of speech and action within all our relationships internally between Board, staff, Council and our members; and externally with government, industry, coalitions, community and other stakeholders.
- Transparency and accountability to our members, our partners, and above all, to people living with HIV/AIDS, including those who are co-infected.
- The work of its staff, Board, Council and other volunteers who take an active role managing CTAC and implementing its programs and services.
OUR STRUCTURE
CTAC is a not-for-profit organization, incorporated federally. CTAC operates in both official languages.
THE MEMBERSHIP
Membership in CTAC is free, and is open to persons, groups, organizations or projects interested in furthering the objects of the Corporation, upon approval of the Board of Directors of the Corporation.
There are two categories of membership in the organization: Full and Associate
Full Membership is reserved for:-Persons living with HIV/AIDS
-Groups, organizations or projects with a substantial HIV/AIDS mandate
Associate Membership is open to:
-Any individual, group, organization or project who support CTAC's mandate and objectives
THE COUNCIL
-The Council of CTAC is comprised of representatives of a specified group of organizations and of each province/territory. Of the twenty-seven positions on Council, eleven represent people living with HIV/AIDS in the provinces and territories (the Territories currently share one seat on the Council). Currently, the other seats are filled by representatives of the two largest urban centre HIV/AIDS consumers organizations in Canada (British Columbia Persons with AIDS Foundation); representatives of national and regional community-based HIV/AIDS organizations that do considerable treatment advocacy work (AIDS ACTION NOW!, the Coalition des organismes communautaires québecois de lutte contre le sida, the Canadian Aboriginal AIDS Network [CAAN], the Canadian HIV/AIDS Legal Network and the Canadian Hemophilia Society); a representative of Black Canadian, African and Caribbean Communities, a representative of current and former substance users, a representative of prisoners/ex-prisoners, a youth representative, an aboriginal representative and a representative of women living with HIV/AIDS.
-The Council advises the Board on issues related to mandate, policies and directions of the organization, guided by the input of the membership throughout the year and at the AGM.
THE BOARD OF DIRECTORS
The Board of Directors manages the affairs of CTAC. The officers of the corporation (Chair, Vice-Chair, Secretary and Treasurer) make up the Board's Executive Committee. The Board is elected by the membership.
THE STAFF
CTAC employs a number of full and part-time people who provide administrative and program support.
PROVINCIAL/TERRITORIAL NETWORK
CTAC has established, or linked with existing, provincial-territorial networks of individuals working on and interested in treatment access issues for people with HIV/AIDS. The role of the provincial networks includes:
-educating and training members on treatment access issues
-providing a forum for members to exchange relevant information
-identifying provincial issues
-implementing national awareness campaigns at a grass-roots level
-feeding into the CTAC national agenda
-electing representatives to the council body
-addressing respective provincial-territorial treatment access issues
OUR GOALS
-Improved access to treatment, traditional medicines, and complementary and alternative medicine for all persons in need
-Simplified access to medically necessary therapies for HIV
-Equitable and timely access to treatment
-Increased access to clinical trial across Canada for drugs, biologics, medical devices, microbicides, and vaccines
-Increased access to expanded and compassionate access programs
-Effective and efficient ethics reviews of all clinical trials
-More Phase IV trials
-Effective consumer-centred Post Approval Surveillance System
-Streamlined, transparent, inclusive, accountable, and meaningful drug review processes
-Preservation and strengthening of Canada's drug pricing regulations
-Continued ban on cross-border Internet pharmacies
-Continued ban on Direct-to-Consumer Advertising
-Preservation of the intention and spirit of the Canada Health Act
-CTAC also promotes informed public policy and awareness on other issues of concern to people infected and affected by HIV/AIDS, including national standards and guidelines on rapid point-of-care HIV testing; access to treatments and harm reduction in prisons; violence against women; the testing of immigrants for HIV; and informed consent.
CTAC ALSO...
-provides mentoring and skills training for CTAC members and people living with HIV/AIDS at CTAC Council and Board meetings, and at selected HIV/AIDS conferences and events
-liaises with pharmaceutical companies through CTAC's Pharmaceutical Liaison Program to obtain and provide up-to-date information and advice
-participates in the development of pharmaceutical programs including clinical trials, compassionate or expanded access, educational forums and written materials
-sends members to scientific and HIV/AIDS conferences to improve their knowledge of treatment access issues and to share this knowledge with other CTAC members and the community
-produces a newsletter that is widely disseminated
OUR ACCOMPLISHMENTS The following are just a few examples of CTAC's accomplishments since it was established in 1996:
CTAC has been active in bringing about changes to Canada's drug review process by:
-preparing Timeliness and Transparency: Assessing the Review Process for HIV Drugs and Improving Our Health: The Need to Enhance the Post-Approval Surveillance System for HIV/AIDS Drugs in Canada
-making a presentation on the problems with the new drug review process to the Canadian Pharmaceutical Industry Conference;
-hosting Prescription for Performance: A National Summit on Improving the Health of Canada's Drug System, an international conference of representatives of various organizations to discuss the drug review process;
-taking a leading role in a working group established to recommend reforms to the drug review process; and
-participating actively on an advisory panel established to oversee the implementation of the recommendations that emanated from the working group.
-CTAC has established, or linked with, provincial-territorial HIV/AIDS treatment networks in most provinces of Canada
-CTAC partnered with CAS, CATIE, and CAAN to organize the National Conference on Women and HIV/AIDS in 2000, and collaboration is underway for a second conference in 2004
-CTAC developed a protocol for a pilot study on consumer-driven reporting processes regarding the effects of treatments, post-approval and with Contract Investigator Dr. Mark Tyndall conducted the pilot study in 2002/2003.
-CTAC has also produced a Discussion Paper entitle, "Improving our Health: The Need to Enhance the Post-Approval Surveillance System for HIV/AIDS Drugs in Canada"
-CTAC has produced a position paper on direct-to-consumer advertising of prescription drugs
-CTAC has worked with governments and industry to provide Compassionate and Expanded Access to drugs in development to people most in need.
-CTAC has worked at both the provincial and national levels on Drug pricing. CTAC has produced a policy paper titled, "Making Treatments Accessible: Determining Appropriate Pricing for Brand-name Pharmaceutical Treatments for HIV/AIDS in Canada
-CTAC has worked with other stakeholders to address treatment access issues at the provincial formulary levels. CTAC has participated in consultations with the Canadian Coordinating Office of Health Technology Assessment (CCOHTA).
-CTAC has been very active in the debate over health care reform and several CTAC members presented to the Royal Commission on the Future of Health Care in Canada (Romanow Commission).
-CTAC was a partner on the organizing committee of NATAF, the National AIDS Treatment Activists Forum in Vancouver in December, 2001.
-CTAC organized, in collaboration with other community organizations, a series of community Fora on HIV/HEPATITIS C Co-infection in 2003.
OVERVIEW
CTAC works both collaboratively and critically, in a manner consistent with its mandate, values and work plan, to support better access to treatments and healthcare for people living with HIV/AIDS, and for effective related research and public policy. CTAC has worked to develop principled relationships with all stakeholders, including government, researchers, regulators and the pharmaceutical industry. CTAC receives financial support from a number of sources, both public and private, including the pharmaceutical industry. CTAC uses this support to carry out its programs. CTAC will make public, at least annually, statements regarding financial support received from all funders.
FUNDRAISING POLICY
-CTAC may solicit and/or accept donations for operation of its core programs and also for the implementation of specific CTAC projects or events.
-Donations received from public or private sources shall be subject to the terms of the financial agreement with the funder.
-CTAC may solicit and/or accept donations for specific projects or events which are co-managed by other organizations.
-Unless otherwise expressly agreed to in writing, CTAC will exercise its right to autonomy and will not permit any funder to influence any aspect of the organization's operation. This includes but is not limited to:
-the development of CTAC's strategic plan(s) or work plan(s);
-the development of CTAC's by-laws, terms of reference, policies, guidelines or other structural documentation;
-the identification, prioritization and implementation of issues, projects and activities of CTAC;
-the content of any CTAC publication, either in paper or in electronic format;
-the development, promotion and dissemination of CTAC positions;
-CTAC decisions on partnerships and collaborations;
-attendance at, participation in, or agenda of any CTAC event(s) (eg. Board/Council meetings, Skills Building events, workshops);
-any aspect of the operation of CTAC's provincial/territorial networks;
-selection of CTAC committee members or operation of CTAC committees; and/or
-the solicitation of funds by CTAC from other sources.