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As the United States was moving towards its first ever national HIV/AIDS strategy, longtime HIV movement leader Vanessa Johnson founded the HIV Caucus to meet a crucial need: demanding and organizing the meaningful involvement of people living with HIV in the development of the strategy that would affect our lives and communities.
Today, it is just as vital to formally, meaningfully, and deeply engage PLHIV in HIV policy, and to move beyond a biomedical approach to humanize the HIV response. As the network of networks of PLHIV, the HIV Caucus links, trains and organizes people and organizations to provide meaningful input. We elevate crucial ideas and strategies that reflect our needs and lived experiences.
Meaningful involvement of people with HIV/AIDS (MIPA) means those who are most affected are truly a part of discussion and decisions in all parts of the HIV response. As explained by emeritus steering committee member Andrew Speildenner, PhD:
The Meaningful Involvement of People living with HIV/AIDS (MIPA) is the process of keeping people living with HIV central to the creation and determination of the policies, funding, services, research and initiatives that affect us… It means transparency with power, resources and inclusion; it means not dismissing our concerns and needs as peripheral to the work ahead of us in the epidemic. Our presence, our voice, our choices matter.
As a meaningfully-involved network, the HIV Caucus advocates as and for PLHIV, provides training on MIPA for our members, and fights for the inclusion of PLHIV in meaningful roles in any processes that affect our lives. To find out more, contact us.
Meaningful involvement of people with HIV/AIDS (MIPA) is about ensuring that the communities most affected by HIV are involved in decision-making, at every level of the response.
The 1983 Denver Principles advised us that people living with HIV/AIDS must “[f]orm caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.” We established the United States People living with HIV Caucus to live out that directive.
In June of 1983, at the Fifth Annual National Lesbian and Gay Health Conference in Denver, Colorado, a group of about a dozen gay men with AIDS from around the U.S. gathered to share their experiences combating stigma and advocating on behalf of people with AIDS.
