Two years ago, the International AIDS Society (IAS) chose the United States of America (U.S.) as the site for the 2020 International AIDS Conference (AIDS2020). Community advocates argued that the U.S. was an inappropriate choice given legal travel restrictions on sex workers, people who use drugs, and Muslims, which would have made it very difficult for members of these communities to enter the country.
The Trump regime’s racist immigration, detention and family separation policies, state-sanctioned violence against Black and Brown people, and the country’s worsening human rights conditions for LGBT people, added to advocates’ grave concerns.
The IAS’ decision created a dilemma for many in the global HIV movement and revealed a willingness by mainstream HIV actors to tolerate the discrimination of immigrants, people of color, Muslims, people who use drugs, sex workers, and transgender people in the conference’s host country. The IAS’ decision also resurfaced questions about the community-relevance of large, multi-million-dollar conferences in the face of shrinking global HIV investments. Moreover, persistent barriers to HIV prevention, care, and treatment services like the costs of medicines and diagnostics as well as criminalization, stigma, discrimination, and violence, compel community advocates to ask:
How can IAS better and more meaningfully engage community advocates?
How does the conference directly benefit people living with and most affected by HIV (gay and bisexual men, people who use drugs, sex workers, and transgender women)?
How can the conference be re-imagined to improve its community-relevance and usefulness to the global HIV movement as a whole?
How can future conferences model and evaluate participatory and dynamic approaches to sharing knowledge and deliberating new research findings with community advocates valued as equal partners and acknowledged as experts?
How can the conference be better leveraged to develop and advance interlocking HIV research, program, and policy agendas?
Developed from years of having experienced past conferences and the top-down decision-making of the IAS, community advocates and experts worldwide have rallied behind the following recommendations, which are offered in the spirit of solidarity:
1. Limit the size of the conference to no more than 7,500, opening the possibility that more countries from the global south can competitively bid to host. IAS could therefore keep its original commitment to rotate the conferences across all regions, ensuring equitable inclusion of regions in the global south. Regional rotation allows for a spotlight to shine on a given region, while retaining the global focus of the conference.
2. Disqualify countries with poor human rights records and travel restrictions that bar entry of people living with HIV, gay and bisexual men, people who use drugs, sex workers, transgender people, and/or Muslims from hosting the conference.
3. Review the frequency in which the conference occurs. At present, the conference is held biennially, without a clear rationale to support the need to convene that frequently. In consultation with community advocates, frequency of the conference should be determined by:
Important scientific developments (i.e., new, high-impact research) and practice;
Timing and urgency of policy developments and advocacy opportunities (i.e., to positively influence laws, policies, and practices as well as funding).
4. Link the conference to collaboratively developed and community endorsed advocacy priorities. Conference themes should be grounded in pressing HIV-related policy issues before they are determined, thereby solidifying its action orientation.
5. Focus the conference on new high-impact scientific findings, community-led research, novel community-authored program approaches, and urgent political issues – i.e., criminalization, stigma and discrimination, as well as pressing developments in the HIV, public health, and related fields.
6. Make the conference more participatory, dynamic, and inter –/trans-disciplinary by including other fields related to HIV and by introducing greater/more equitable balance between basic, clinical, implementation, community, and social research.
7. Ensure equal numbers of researchers, public health professionals, researchers, funders, community advocates, and community experts on the conference coordinating committee.
8. Eliminate permanent member status on the conference coordinating committee in favor of a pre-determined number of rotating seats designated to each of the above-named categories. Seats designated for advocates must reflect communities most impacted by HIV.
9. Create a standing, community-based participatory action research track that is peer reviewed by other community researchers and community advocates.
10. Improve meaningful engagement of communities living with and most affected by HIV in the development, implementation, and evaluation of future conferences and other IAS programs by:
Adding community advocates and community experts into the IAS’ Governing Council; and
Waiving IAS membership fees for community advocates and community experts who do not or cannot attend conferences due to their associated costs.
Community advocates want to see the IAS and its conferences succeed. Central to its future success is the meaningful, respectful, and equitable engagement of community advocates as experts. The questions raised above are not new, nor are community advocates’ calls for structural and programmatic change. Better accountability to communities living with and most affected by HIV can only bolster the international AIDS conferences’ quality and IAS’ integrity.