Canada's Report on HIV/AIDS 2003

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Increasing Canadian Involvement, Participation and Partnership in the HIV/AIDS Response

Involvement, participation and partnership are cornerstones of the pan-Canadian response to HIV/AIDS and vital to the success of the CSHA. Efforts to prevent the spread of HIV, find a cure for AIDS and achieve other goals of the CSHA require strengthened policies and innovative approaches that can only be realized through better partnerships between governments, NGOs, community-based organizations, people living with HIV/AIDS, researchers, the private sector and others. There is growing activism in some sectors to mitigate the physical, societal, psychological and economic damage caused by the disease.

Partnering to Improve Information Resources

CATIE continues to work in partnership with diverse community organizations to determine needs and enhance accessibility to treatment information. For example, in collaboration with Asian Community AIDS Services (ACAS), CATIE made its series of Plain and Simple Fact Sheets available in Chinese, Tagalog and Vietnamese. CATIE is currently exploring the potential for translating this series into other languages for use by African, South Asian and other communities. CATIE also helped the group Africans in Partnership Against AIDS launch its website during 2002-2003.

Similarly, the Canadian HIV/AIDS Information Centre (CPHA), regularly surveys community-based AIDS organizations to determine what information resources are needed and how the resources can be made meaningful for the organizations and their clients. An example of a resource developed by the Centre in response to demand from the community is the "Safer Injecting" postcard, a harm reduction resource for injection drug users that illustrates safe and unsafe injection areas on the body. The Centre also looks for resources that were originally produced at the provincial or local level that might be useful for national distribution. In this regard, the Centre sought permission to update and translate the Safer Sex Menu, a document produced several years ago by a Toronto-based HIV/AIDS group. The Safer Sex Menu, which uses street language to explain different types of sexual activities and the level of risk of HIV infection associated with each activity, has become a popular resource that is now being distributed across Canada.

Through the publication of Epi Notes, CIDPC continued to work with CAS to produce epidemiological information that is more understandable to the general public and the media. Work was also initiated to develop a series of Epi Notes aimed specifically at Aboriginal populations. Epidemiological information provides communities with data on how the epidemic is evolving and helps inform their policy and program responses.

Increasing the Involvement of People Living with HIV/AIDS and People at Risk

As the HIV/AIDS epidemic in Canada continues to evolve, innovative ways are being sought to ensure that people living with the disease are fully involved in the response.

For example, people living with HIV/AIDS are actively participating in the Canadian Working Group on HIV and Rehabilitation (CWGHR), a national, multi-sectoral, not-for-profit group of stakeholders that promotes innovation and excellence in rehabilitation in the context of HIV disease. The CWGHR also includes representatives of community-based HIV and other disability organizations, as well as national associations representing health professionals, government departments, the private sector and employment-related agencies.

In March 2003, the CWGHR jointly sponsored a workshop with Health Canada and Human Resources Development Canada (HRDC) that brought together people living with HIV/AIDS and government and ASO representatives to develop a common definition of rehabilitation as it relates to HIV/AIDS, to explore various perspectives on rehabilitation and to identify barriers and gaps in rehabilitation programs and services. Workshop participants suggested ways that health care providers can better address the episodic nature of HIV and improve the coordination of HIV rehabilitation programs and services. The CWGHR also collaborated with CAS to submit a brief, entitled HIV As An Episodic Illness: Revising the CPP (D) Program, and to participate in a round table discussion held by the Parliamentary Subcommittee on the Status of Persons with Disabilities to consider the need for changes to the disability policies of the Canada Pension Plan.

CAS continued efforts to more fully engage HIV-positive youth and other young Canadians in the response by sponsoring the Youth Institute, part of the 4th Canadian HIV/AIDS Skills Building Symposium. The only national event of its kind that brings together youth and youth workers to build skills and share experiences related to HIV/AIDS, the Youth Institute aims to help young people confront HIV/AIDS in their own communities and on their own terms. Youth from each of CAS's five regions sat on the National Youth Advisory Committee that guided planning for the Youth Institute.

As well, for the first time, CAS actively recruited HIV-positive youth to participate in its annual People Living with HIV/AIDS Forum, which provides the opportunity for people living with HIV/AIDS, community-based workers and volunteers to network, build skills, elect regional directors to the CAS board and pass resolutions that influence CAS policy directions. Full scholarships were made available to allow four youth to attend the Forum, held in conjunction with the CAS annual general meeting in Montréal in June 2003.

Users of injection drugs were involved in all aspects of planning and implementation of the First National Harm Reduction Conference, sponsored by the Street Health Nursing Foundation and held in Toronto in November 2002. The conference was jointly funded by the HIV/AIDS Policy, Coordination and Programs Division, the Hepatitis C Division, the Drug Strategy and Controlled Substances Programme and FNIHB. The lead-up to the conference included a peer-led project in which users of injection drugs were trained to visit local communities, talk about drug-related issues and encourage participation at the conference. Current injection drug users and those who had experience with IDU constituted half of the 350 participants, while the remainder were front-line service providers and professionals from the health and social services sectors. More than 100 scholarships were provided to enable injection drug users and others to attend the conference, which identified a need for similar events in the future to bring the IDU community together.

CTAC opened up its membership in 2002-2003 to all interested parties and individuals, resulting in a jump in membership from about 20 to more than 200. Many of CTAC's members and volunteers are people living with HIV/AIDS. CTAC also worked with the Canadian Hemophilia Society, the Hepatitis C Society of Canada and the Toronto Primary Care Physicians Group to ensure that drugs needed by people with HIV/AIDS are listed on the Ontario formulary.

The Canadian HIV/AIDS Legal Network launched a new initiative to champion the inclusion of drug users and other marginalized populations in all of the Network's activities and to encourage other organizations to do the same. A special workshop was held at the Legal Network's annual general meeting in Montréal in September 2002 to allow people who have had success in this regard to share their experiences with others and to encourage greater action to implement the greater involvement of people living with HIV/AIDS principle, known as GIPA.

The CTN also endeavours to ensure that the voices of people living with HIV/AIDS are heard in the development and design of HIV/AIDS clinical trials. People living with HIV/AIDS participate on every committee established by the CTN to advise on new clinical trials, and the network hosted several community workshops in 2002-2003 aimed at providing information to and dialoguing with people living with HIV/AIDS.

CAAN, through the Aboriginal Persons Living with HIV/AIDS Coordination Program, is guided by the advice and direction of the National Aboriginal PHA Advisory Committee, which meets four times annually. The Advisory Committee receives direction from the Aboriginal People Living with HIV/AIDS Caucus, which meets during CAAN's annual general meeting.

CSC launched the Special Inmates Initiatives Program, which enables inmates to become directly involved in developing programs that will improve HIV/AIDS awareness and education in institutional settings. To this end, inmates are invited to suggest ideas for projects to be funded by the program. In 2002-2003, funding was provided to inmates at three institutions to develop materials and make presentations on HIV/AIDS. For example, inmates at Warkworth Institution in Campbellford, Ontario, conducted a one-day symposium on HIV/AIDS and hepatitis C entitled "Let's Talk . Let's Listen." Speakers and participants included members of NGOs and external health practitioners.

Improved Interdepartmental and Intergovernmental Collaboration

The federal government is striving to increase collaboration and partnership among departments and agencies that have programs or responsibilities directly or indirectly related to HIV/AIDS, as called for in the five-year review of the federal role in the CSHA and by the Standing Committee on Health. Health Canada is also working to further engage non-traditional partners at the federal level, including HRDC, the Department of Justice, Indian and Northern Affairs Canada and Citizenship and Immigration Canada.

Another example of interdepartmental teamwork is the Global Health Research Initiative (GHRI), a partnership between CIHR, Health Canada, CIDA and the International Development Research Centre. The GHRI is a cooperative arrangement aimed at coordinating and building upon Canada's global health research activities. The initiative provides a framework that allows the four partners to operate more effectively when addressing areas of mutual interest.

CIDPC continued to foster partnership and collaboration with provincial/territorial HIV/AIDS laboratories. A consensus meeting held in Vancouver in June 2003 brought together management and technical support staff from CIDPC and provincial/territorial laboratories to discuss issues of common concern and new ways of doing business, thus fostering a team approach and strengthening federal, provincial, territorial relations.

CIDPC also hosted a National HIV/AIDS/STI surveillance meeting in Victoria in March 2003. The meeting brought together federal, provincial and territorial counterparts responsible for HIV/AIDS and STI data collection, management and analysis. Members of the community and specific interest groups, many of whom are partners in disease surveillance, also attended the meeting, as did users of surveillance data who guide policy and programming. The meeting was an opportunity to discuss priority data needs to improve the monitoring of HIV/AIDS, to share new initiatives and provide updates on key activities at the national and regional levels, and to determine national goals and priority activities for 2003-2004.

Working with Canada's Global Partners

The UNGASS Declaration of Commitment on HIV/AIDS has become an important guidepost for the policy and programming activities of CSHA partners. Since UNGASS, for example, there has been greater coordination among CIDA, DFAIT and Health Canada on Canada's international response to HIV/AIDS. NGOs see the Declaration of Commitment, with its measurable outcomes, as a powerful tool for influencing the policy agenda and reminding governments of the need to fulfill their commitments to fight HIV/AIDS at both the national and international levels. To this end, ICAD and its members have developed training materials to strengthen the capacity of the HIV/AIDS community to use the Declaration to develop and monitor their core programming.

The Government of Canada's second annual report on the implementation of the UNGASS Declaration of Commitment on HIV/AIDS was submitted to UNAIDS in June 2003. The report was coordinated by CIDPC, with input from national and community NGOs, federal government departments/agencies and the Working Group on International HIV/AIDS Issues. This was the first time Canada and other countries reported on UNGASS on the basis of indicators developed by the United Nations (that is, national core indicators, national program and behaviour indicators and impact indicators). To strengthen the reporting process, Health Canada is examining a series of data collection mechanisms and resources that will allow better monitoring of Canada's progress in implementing the Declaration of Commitment. Canada also participated at the UN General Assembly High Level Meeting on HIV and AIDS on September 22, 2003.

CAS signed a new memorandum of understanding (MOU) to continue its participation in IAVI. The new MOU includes an agreement to work together in Canada to increase political commitment for HIV vaccine development; to increase public awareness about the need for a preventive vaccine; to increase financial support for HIV vaccine development from government, industry and individual donors; to increase the interest and involvement of the scientific community and NGOs; and to increase the knowledge, skills and advocacy capacity of community-based HIV/AIDS organizations around vaccine development issues. The Canadian HIV/AIDS Legal Network also signed an MOU with IAVI to work on legal, ethical and human rights issues related to HIV vaccines, in Canada and internationally.

As well, CAS continues to act as the secretariat for the North American Council of AIDS Service Organizations (NACASO). NACASO offers its members a mechanism through which to network on critical advocacy issues, such as vaccines, microbicides, the Global Fund to Fight AIDS, Tuberculosis and Malaria and the UNGASS Declaration of Commitment on HIV/AIDS. During 2003, NACASO has focussed on building its infrastructure and governance, increasing its membership and preparing to deliver workshops on the Declaration of Commitment to its members.

ICAD and CAS have launched a database to promote greater involvement of Canadian organizations in international HIV/AIDS issues and activities. The database, co-funded by IAD and CIDA, collates the knowledge, skills and expertise of Canadian ASOs, NGOs, faith-based organizations and educational institutions. It is being marketed to multilateral and bilateral agencies, private sector firms, trusts and international NGOs searching for Canada's help and support in global programming.

The GHRI mentioned above encourages collaboration between researchers in Canada and researchers in low- and middle-income countries. As a result of a Request for Applications (RFA) for global health development and planning grants, seven HIV/AIDS-related projects were approved in 2002-2003, covering topics such as transforming violent gender relations to reduce risk of HIV infection among young women and girls in South Africa and the determinants and societal impact of the HIV/AIDS epidemic in India.

Increased Involvement and Collaboration in HIV/AIDS Research

All of the HIV/AIDS-related RFAs issued by CIHR aim to increase the involvement and participation of various target groups in research. For example, in 2002-2003 the Institute of Aboriginal Peoples' Health and the Institute of Infection and Immunity provided funding for two projects that are enabling Aboriginal communities and organizations to participate in HIV/AIDS research. One project, involving a multidisciplinary approach and 600 study participants in British Columbia, is intended to improve understanding of HIV vulnerability in young Aboriginal drug users. The second study, a collaborative effort between researchers, government and community groups, is exploring issues of HIV testing and care decisions in Canadian Aboriginal youth.

Work also continued on the establishment of the HIV/AIDS Research Advisory Committee, whose role will be to identify priorities for HIV/AIDS research in consultation with CIHR, Health Canada, HIV researchers and community groups. The committee will be instrumental in making recommendations on priorities for HIV research, developing RFAs in the area of HIV/AIDS and advising on the allocation of strategic HIV/AIDS research funding. Nominations for membership were submitted in 2002-2003, and the committee is now operational.

Partnerships with communities, Health Canada and universities (for example, the University of Alberta, the University of Ottawa, the University of Toronto and the University of Calgary) are an important component of CAAN's research efforts. CAAN is currently working with these partners on two CIHR-funded research projects: the Influence of Stigma on Access to Health Services by Persons Living with HIV Illness and the Diagnosis and Care of HIV Infection in Canadian Aboriginal Youth.

Challenges and Opportunities

Increased collaboration among and involvement by all sectors of Canadian society are fundamental goals of CSHA partners as they seek out opportunities to expand and strengthen Canada's response to HIV/AIDS. Despite their innovative, strategic and proactive efforts, challenges continue to arise, as evidenced by the 50 per cent decline in participation in AIDS Walk Canada 2003 compared with previous years (the amount of money raised for local AIDS organizations dropped from $2.2 million in 2002 to approximately $1.6 million in 2003). CAS, which provides national coordination for AIDS Walk Canada, attributed the decline in part to a complacency about HIV/AIDS and indicated that new mechanisms will be sought for recruiting walkers from all sectors of society.

Similarly, new opportunities must be sought to reduce jurisdictional barriers, improve interdepartmental and intergovernmental collaboration, and engage other federal departments more broadly in the response. In addition, innovative and creative ways are needed to enhance the opportunities to involve people living with HIV/AIDS, and those at risk of infection, in all aspects of program development and delivery.

The draft national action plan and the report of the five-year review of the federal role in the CSHA portray the forward-thinking, collaborative and multi-sectoral approach that must be embraced to address these challenges and realize the goals of the CSHA.

Anne Marie DiCenso: Inspired by Personal Experience

Anne Marie DiCenso brings a passion to her work that is shared by many who are active in Canada's HIV/AIDS response. And, like countless others, she draws her inspiration and energy from the very people who are living with the disease.

"I have a long history of working with people who are in conflict with the law," she says by way of background. "In fact, I was working for the Elizabeth Fry Society in 1991 when I was asked to sit on PASAN's founding board of directors." Ms. DiCenso later applied for a staff position and became coordinator of women's programs at the Prisoners' HIV/AIDS Support Action Network (PASAN) a community-based network that provides advocacy, education and support to prisoners and ex-prisoners on HIV/AIDS and related issues.

In October 2002, she was named Executive Director of PASAN and became accountable for the full scope of the organization's activities. But she retains a special interest in women's issues.

"When I was with the Elizabeth Fry Society, part of my job was to go into the Prison for Women in Kingston (now closed). I was meeting with a number of women who were HIV-positive, and I could see that their needs were not being met. These were special people who were up against tremendous odds and were great fighters, both for themselves and for others with HIV/AIDS. I realized that this was where my passion was."

Working with other PASAN staff and volunteers, Ms. DiCenso set out to improve the support network and service delivery for HIV-positive women prisoners. "For a long time we simply provided one-on-one counselling, dealing with individual women's experiences. This made an enormous difference to these women. They finally had someone to reach out to. We were able to go into prisons, so the isolation was reduced. We could see what they needed and give them a shoulder to cry on. PASAN has become a place they can connect with - they build trust with us and know we will help them get support in the community when they are released."

While the situation for HIV-positive women prisoners has improved on some fronts, many systemic barriers still need to be addressed. Ms. DiCenso and co-investigators Giselle Dias and Jacqueline Gahagan recently documented these barriers through a major research project that explored the experiences of 156 women in Canadian prisons who are infected with HIV or hepatitis C (see page 29).

"This study means a lot to me," she acknowledges. "It was the first of its kind in Canada, and we got a huge amount of detailed information on what was working and what wasn't working and where there are service gaps. I think the report includes a lot of important findings."

The study has confirmed that much remains to be done by PASAN and other stakeholders in the Canadian Strategy on HIV/AIDS. Women living with HIV/AIDS in prison are still isolated and need advocates and support networks, both inside and outside the institutional setting. But more than anything, it is the women themselves who inspire Ms. DiCenso day after day.

"One of my closest friends died a couple of years ago of AIDS," she explains. "I met her in 1991, when I was working for the Elizabeth Fry Society. When this woman was released from prison, she came to work at PASAN and we became very close. I was with her when she died. Her experience and the work she did and the fight she made impacted me in a very personal way. That's what keeps me going - I have met so many powerful, amazing women who really inspire me."

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