HIV/AIDS and Discrimination: A Discussion Paper

From the Summary

In 1995, during Phase I of the Joint Network/CAS Project on Legal and Ethical Issues Raised by HIV/AIDS, over sixty individuals and organizations identified discrimination as one of eight "top priority" legal and ethical issues raised by HIV/AIDS in Canada. Three years later, in January 1998, participants in a national workshop on discrimination and HIV/AIDS confirmed that:

• discrimination against people with HIV/AIDS is still pervasive in Canada;
• discrimination touches every aspect of the lives of people with HIV/AIDS;
• discrimination is becoming more subtle and hard to redress;
• discrimination has a significant impact on the health and well-being of people with HIV/AIDS and of populations affected by HIV/AIDS.

The Discussion Paper reviews:

• definitions of discrimination that are current in Canada and internationally;
• the nature of stigma, discrimination, and vulnerability in the context of the HIV epidemic;
• stigma and discrimination that people with HIV/AIDS currently experience in their families and communities, at work, in housing, in health care settings, in obtaining insurance coverage or benefits (particularly private medical and disability insurance), and in policies restricting travel or immigration;
• specific patterns of stigma and discrimination that populations affected by HIV/AIDS experience, and the impact of stigma and discrimination on their health and well-being in the context of the HIV/AIDS epidemic; and
• various ways to respond to stigma and discrimination, including education (public education, professional education, and focused education), redress (human rights law, the Canadian Charter of Rights and Freedoms, and other forms of legal or procedural redress), and advocacy.

The goals of the Discussion Paper are:

• to show how pervasive stigma and discrimination are in the lives of people with HIV/AIDS and populations affected by HIV/AIDS;
• to document the impact of stigma and discrimination on the health and well-being of people with HIV/AIDS and populations affected by HIV/AIDS;
• to recommend basic elements of a concerted effort to prevent, redress, and eliminate HIV/AIDS-related stigma and discrimination.

The Discussion Paper does not presume to be definitive in its description of HIV/AIDS-related stigma and discrimination, or in its recommendations as to how to respond to such stigma and discrimination. Rather, it is hoped that the Discussion Paper will stimulate:

• increased awareness of HIV/AIDS-related stigma and discrimination;
• further documentation of stigmatizing or discriminatory attitudes, actions, or systems;
• further analysis of the complexities and effects of HIV/AIDS-related stigma and discrimination;
• further discussion and deliberation on how to respond to HIV/AIDS-related stigma and discrimination; and
• increased resolve to address HIV/AIDS-related stigma and discrimination.

The Discussion Paper concludes that, in addition to being unwarranted and unjust in most circumstances, discrimination against people with HIV/AIDS or populations affected by HIV/AIDS has serious consequences. These include (but are not limited to):

• vulnerability to HIV infection, particularly among young gay and bisexual men, drug users, Aboriginal people, prisoners, and sex workers;
• failure to prevent HIV infection, both among populations identified as being "at risk" for HIV infection and among populations not so identified;
• stress associated with HIV status, secrecy about HIV status, and social isolation because of HIV status - all adversely affecting the psychological health of people with HIV/AIDS;
• harassment from employers or colleagues; insufficient accommodation of health-related needs at work; reluctance to claim medical or disability benefits for fear of being harassed, laid off, or fired; being laid off or fired;
• denial of housing by landlords because of HIV status, sexual orientation, or source of income;
• reluctance to access health-care services, because of stigmatizing or discriminatory attitudes and remarks;
• delayed diagnosis and substandard treatment for HIV infection and HIV/AIDS-related diseases and opportunistic infections;
• insufficient or no insurance coverage for disability or drugs;
• exclusion from or underrepresentation in research on HIV/AIDS, resulting in insufficient information on HIV prevention, care, and treatment in certain populations; and
• restrictions on travel to foreign countries.

The Discussion Paper further concludes that a concerted effort is required on the part of governments, human rights commissions, community and national organizations, professional associations, schools, workplaces, and researchers to prevent, redress, and eliminate stigma and discrimination associated with HIV/AIDS. The Discussion Paper recommends that a framework for action on HIV/AIDS-related discrimination be developed in Phase III of the National AIDS Strategy, with specific provision for:

• community participation in designing, implementing, and evaluating policies and programs;
• staff, protocols, systems, and networks to gather information on stigma and discrimination, analyze information, develop policy, and promote change in policies and practice;
• specialized legal services for people with HIV/AIDS and populations affected by HIV/AIDS, and a network of lawyers and legal clinics offering such specialized legal services;
• reviewing and recommending reforms to legislation and law enforcement practices that have an adverse effect on people with HIV/AIDS and populations affected by HIV/AIDS, to human rights legislation and procedures, and to human rights policies;
• public education aimed at reducing HIV/AIDS-related stigma and at creating a supportive environment for people with HIV/AIDS and populations affected by HIV/AIDS;
• education and training to promote and foster non-stigmatizing and non-discriminatory attitudes and practices among professionals, particularly those who provide care to people with HIV/AIDS on an occasional basis;
• education for children and youth, both in the schools and through alternative peer-based programs sponsored by social agencies and community organizations;
• initiatives to address HIV/AIDS-related harassment and discrimination in the workplace;
• efforts to increase participation of underrepresented populations in research, in identifying research priorities, in designing and implementing research projects, and in the ethical review of research; and
• a plan to monitor and evaluate annually efforts to prevent, redress, and eliminate HIV/AIDS-related discrimination.