The Blueprint

3. Meaningful participation of people living with HIV/communities at risk

The success of our national, regional and global programmes requires the greater involvement of people living with HIV/AIDS. [E]nsuring their full involvement . . . will . . . stimulate the creation of supportive political, legal and social environments.

Article 1, Paris AIDS Summit Declaration
Greater Involvement of People with AIDS (GIPA) Principle, 1994

The meaningful participation of people living with HIV and of communities at risk is fundamental to reducing the stigma and discrimination associated with HIV, preventing the spread of the virus, improving care, improving living conditions and ending the epidemic. The active, meaningful participation of those most affected by HIV offers a number of distinct benefits. For example:

  • it recognizes the rights of people living with HIV to participate in the decisions that affect them
  • it gives the health and social service system valuable advice, knowledge and experience, which results in more effective and more cost-effective interventions
  • it gives those who become involved better access to social support -- one of the determinants of health -- and people who have a strong social support network enjoy better health and are more able to influence policies and programs that affect their health

From the beginning of the epidemic in Canada, people living with HIV and communities at risk have been a powerful force in:

  • providing leadership
  • influencing policy
  • planning programs and services
  • advocating for research and access to treatments
  • delivering peer-led programs

Despite these contributions, the capacity and opportunity of people with HIV/AIDS to participate in and guide HIV programs and services has often been ignored by decision makers and people in authority. Every effort must be made to encourage meaningful participation, particularly by people and groups who have not been actively involved to date and who may lack the needed skills or confidence and need support.