December 1, 2021

Meaningful involvement of people with HIV/ AIDS (MIPA) is a globally recognized principle first articulated in the Denver Principles in 1983 and endorsed by the United Nations Programme on HIV/AIDS (UNAIDS), the body that coordinates global action on the HIV/ AIDS epidemic. MIPA recognizes the important contribution that people living with and affected by HIV/AIDS can have in the response to the epidemic as equal partners; and creates a space within society for involvement and active participation.

Networks of people living with HIV are organized formations created, led by, and accountable to the estimated 1.2 million people living with HIV (PLHIV) in the United States. PLHIV networks are vehicles through which we, as PLHIV, can define our own agenda, choose our own leaders, and speak with a collective voice.

There is a marked difference between collaborating with or taking input from individual PLHIV and engaging with organized formations of PLHIV. Whereas working with individual PLHIV is frequently tokenizing and disempowering to PLHIV and reinforces inequities in race, gender, and class that have framed dominant discourse and policymaking on the HIV epidemic to date, engaging through network-based representation provides true mechanisms for community input and accountability.

Accordingly, this World AIDS Day, we are calling on the federal government to take meaningful action to demonstrate its commitment to MIPA by rechartering the President's Advisory Council on HIV/AIDS (PACHA), the CDC/HRSA Advisory Council (CHAC), and the Office of AIDS Research Advisory Council (OARAC) to each include two designated standing seats for the US PLHIV Caucus, to be filled by representatives of our own choosing.

The US PLHIV Caucus is the collective US-based "network of networks", stewarded  by the Global Network of People Living with AIDS -- North America, International Community of Women with HIV/AIDS -- North America, National Working Positive Coalition, Positively Trans, Positive Women’s Network-USA (PWN), The Reunion Project, SERO Project, and THRIVE SS.

Our networks represent communities most impacted by the epidemic in the United States: Black gay and bisexual men living with HIV in the U.S. South, Black cisgender and transgender women living with HIV, transgender women of color living with HIV, Latinx people living with HIV, survivors of HIV criminalization, and people aging with HIV. Our constituencies are diverse – including groups organized around race, gender, age, gender identity, sexual orientation, and immigration status – and we work across coalitions and communities on issues that impact our lives and rights.

Involving PLHIV networks in decision-making and implementation translates into concrete benefits for public health leadership, including: pre-existing community trust and cultural humility that facilitates development and implementation of strong programs; a real-time sense of challenges and opportunities on the ground; informed analysis of the myriad and complex effects of interlocking stigma and discrimination; increased effectiveness of policies and programs; and improved sustainability of projects and organizations.

The federal domestic HIV response can be strengthened through authentic and structured partnership with PLHIV networks. The collective voices and organized leadership of PLHIV, as represented in national and local PLHIV networks, must be viewed as essential to crafting or changing HIV policy; prevention, care, and treatment guidelines; data collection and surveillance practices; the HIV research agenda; in the design of HIV service delivery; and in all aspects of monitoring and evaluation. The best way to achieve this is by consulting and involving PLHIV networks as critical stakeholders and partners in a manner that is separate and distinct from other community engagement at every level of the policy and program decision making that so profoundly affect our lives.

It is long past time for national leadership on HIV to make this shift towards formally recognizing PLHIV networks as necessary partners to help organize, inform, implement, and monitor the federal domestic response. You cannot end the epidemic without us. This is not a demand - it is an absolute imperative.

We reiterate our request that the federal government take meaningful action to demonstrate its commitment to MIPA by rechartering the President's Advisory Council on HIV/AIDS (PACHA), the CDC/HRSA Advisory Council (CHAC), and the Office of AIDS Research Advisory Council (OARAC) to each include two designated standing seats for the US PLHIV Caucus, to be filled by representatives of our own choosing.

In the spirit of partnership,

The US PLHIV Caucus and its member networks
Global Network of People Living with AIDS -- North America
International Community of Women with HIV/AIDS -- North America
National Working Positive Coalition
Positively Trans
Positive Women’s Network-USA (PWN)
The Reunion Project
SERO Project
THRIVE SS

and the below signed individuals and organizations