This World AIDS Day, the United States People Living with HIV Caucus (HIV Caucus) calls for acknowledgement of the crucial role played by people living with HIV (PLHIV) networks in designing programs, policy, delivery of services and in providing leadership in the domestic and global HIV epidemic.
Throughout the history of the HIV epidemic, PLHIV networks have led the effort to protect the rights, health, and dignity of PLHIV, and continue to be critical in the response to the epidemic. Civil society engagement in many countries mandates consultation with and engagement of PLHIV networks, which range from formal or legally-constituted groups of people living with HIV to more casual support or ad hoc networks.
The 1983 Denver Principles, a manifesto written by people with AIDS that outlines a series of rights and responsibilities for people living with HIV and those who provide care for them, have become canonical in patient advocacy and empowerment movements globally. The Denver Principles codify the right of people living with HIV to define our own priorities, select leadership of our choosing and to participate as partners in all aspects of the response to the epidemic.
"In much of the world, PLHIV networks are seen as key partners in the State response to HIV, serving as consultants and civil society monitors for the government," says Barb Cardell, Colorado-based HIV activist and HIV Caucus Vice-Chair, "It's a fundamental principle that nothing should happen about us without us -- at every level. Yet, unfortunately, in the U.S. the networks are often included as an after-thought, if considered at all."
Following a decade of treatment and medical advances, the second National HIV/AIDS Strategy, which will guide the domestic response until 2020 ("NHAS 2020"), rests on two primary treatment-related pillars to achieve its targets: treatment as prevention (TasP) and pre-exposure prophylaxis (PrEP).
To be successful, both require critical engagement of PLHIV, yet NHAS 2020 has little mention of PLHIV networks or recognition of the role they have played and must continue to play.
Representative of the many organizing efforts of PLHIV networks across the U.S. is Iowa. In Iowa, a statewide PLHIV network organized to modernizee the state's HIV criminalization laws. "We came together for support and recognized that we could do something about HIV criminalization: that it was wrong, that it affected us, and we would change it," says Tami Haught, activist with CHAIN (Community HIV and Hepatitis Advocates of Iowa Network) and a member of the Caucus Steering Committee.
Furthermore, PLHIV Networks provide key information and resources, particularly to others living with HIV. "When someone is newly diagnosed, who tells them about their rights? Who tells them the history of the epidemic?" asks Devin Hursey, a Missouri-based HIV activist and Communication Co-Chair of the HIV Caucus, "Speaking with other people who have been through it and engaging our diverse community is more likely to have a positive impact on someone newly diagnosed."
"In the earlier years of the epidemic, when someone was diagnosed with HIV they were immediately connected to a network of others living with HIV. That is where PLHIV learn how to disclose their status to others as well as find support and empowerment. Today, the governmental and funding support for networks has declined precipitously and someone newly diagnosed is far less likely to be connected to a support group of others with HIV. This needs to change," said Andrew Spieldenner, a member of the Caucus Steering Committee.
Today on World AIDS Day, we demand that the United States government reaffirm its commitment to the PLHIV community, starting with having the National HIV/AIDS Strategy recognize and honor the role of networks of PLHIV as partners in public health, defining processes to engage with us consistently, and ensuring a more effective response to our national epidemic.