The silent voices of the HIV/AIDS epidemic in Canada

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African and Caribbean women in Toronto

by ESTHER THARAO, NOTISHA MASSAQUOI and SENAIT TECLOM
From Women’s Health in Women’s Hands

UNAIDS estimates that women account for half of the 40 million people living with HIV/AIDS globally, and of these 20 million women, African and Caribbean women bear the greatest burden of the disease (UNAIDS, 2003). The high rates of HIV infection amongst African and Caribbean women in Sub-Saharan Africa and the Caribbean is also reflected, albeit to a lesser extent, in the developed countries of Europe, Australia and North America, including Canada -- countries that have become the final destination of women fleeing to escape war, gender and/or religious persecution or in search of better economic opportunities for themselves and their families. Many of the women who have chosen to make Canada their home have settled in large metropolitan cities, with the majority living in Toronto. According to the 2001 census of Statistics Canada, more than half of the 310,500 members of the black community living in Toronto are women.

Emerging data indicates that African and Caribbean communities have now become a significant component of the HIV/AIDS epidemic in Ontario. In the period between 1994-1996, more than 70% of all maternal HIV transmissions in Ontario were amongst African and Caribbean women, and in 1996, they accounted for 32% of AIDS related deaths among women in Ontario. More recently, African and Caribbean communities accounted for 20% of all AIDS cases diagnosed in 2001 and 2002. According to University of Toronto researcher, Robert Remus (2003), HIV prevalence among African and Caribbean communities has continued to increase at a rate of 13.1% annually, and has increased by 85% in the last five years, with a large proportion of the infections (22%-59%) occurring after settlement in Ontario.

While statistics indicate a real and growing problem, very little is documented to highlight the context within which transmission is occurring, the factors that facilitate or reduce transmission and those that foster the ability to cope with HIV for those who are already infected. In addition, African and Caribbean women and their communities have traditionally played a very limited role in efforts mounted to deal with the HIV/AIDS epidemic in their new host country, creating an unfortunate situation in which service providers are struggling to provide services with an insufficient understanding of the forces that are driving the epidemic. The result is limited access to, and involvement of, African and Caribbean communities, and a lack of evidence on which to base programs and services.

Few HIV/AIDS services available for African and Caribbean women
Women’s Health in Women’s Hands undertook a study (2004) in order to assess the HIV/AIDS services available to African and Caribbean women in the Toronto area. Our study found that most of the HIV/AIDS prevention, support, treatment and care services available are delivered primarily within "mainstream" agencies/institutions, with most having originally been developed to meet the needs of the groups that emerged into the epidemic first -- primarily men who have sex with men. In addition, the majority of services are targeted primarily to people living with HIV/AIDS, with limited services targeting those at risk of infection or designed to raise awareness and prevent transmission.

As well, very few agencies provide prevention and outreach services targeted to African and Caribbean women at risk of HIV infection, and those that do so, are limited. Those individuals in the community who are informed about HIV tend to have discovered necessary information on their own or are informed of the resources after testing HIV positive. Struggling to deal with the impacts of the diagnosis with limited information about the disease and available service, and without family or community support, affects the coping ability of African and Caribbean women living with HIV/AIDS. To ensure maximum confidentiality, they deal with HIV/AIDS in silence and secrecy.

In general we found that governments and agencies do not have either short-term or long-term strategies and plans in place to develop and deliver services that are tailored to meet the identified needs of African and Caribbean women.

Engaging African and Caribbean women in the solution
There is a critical need to engage African and Caribbean women and their communities in prevention, support and care activities. In particular, agencies and individual providers must understand and address the context in which people live and the community values, beliefs, and norms that shape both individual and community behaviours.

Infected and affected African and Caribbean women and their communities must be involved in the design and delivery of programs within an empowering and community development framework based on trust and mutual respect. Strategies targeted to individuals must be complimented with broader community strategies designed, not only for African and Caribbean communities, but also for the Canadian society at large to change norms, values, practices and stereotypes inherent in multiple intersecting frameworks of oppression.

For the full report, The Silent Voices of the HIV/AIDS Epidemic, contact: esther@whiwh.com or call: 416-593-7655.

For more information on Women’s Health in Women’s Hands, a community health centre for women, please visit: www.whiwh.com or phone: 416-593-7655.




Moving Forward
African and Caribbean Council on HIV/AIDS in Ontario

April 2005 saw the launch of a Strategy to Address Issues Related to HIV Faced by People in Ontario From Countries Where HIV is Endemic by the African and Caribbean Council on HIV/AIDS in Ontario (ACCHO), a group of organizations and individuals committed to HIV prevention, education, advocacy, research, treatment, care and support for African and Caribbean communities in Ontario.

"It is crucial that ACCHO works in partnership with community members, faith leaders, activists, social and health service agencies in the implementation of this strategy to ensure healthy communities," says Dr. Winston Husbands, Co-Chair of ACCHO. The goal of the Strategy is to reduce the spread of HIV among African and Caribbean people in Ontario, and improve the quality of life for those infected and affected by HIV/AIDS.

The Strategy has four main areas of concern:

  • HIV among African and Caribbean peoples is an urgent issue that requires immediate attention and dedication of resources;
  • African and Caribbean communities should be involved in planning and delivering services for people;
  • Racism, gender discrimination, homophobia and other forms of discrimination affect the care and services people receive; and
  • Programs and services should meet the needs of a wide range of people and groups from the African and Caribbean communities in Ontario, namely, youth, women, gay men, lesbians, transgendered people, men who have sex with men, and injection drug users.

The Strategy will also focus on coordinating resources for HIV services, promoting and creating appropriate programs for the community, and establishing new research priorities.

For more information on the Council and the Strategy, contact: ACCHOntario@hotmail.com or 1-866-615-3506.