Trans community engagement at the AIDS 2022 Conference

Erika Castellanos, GATE’s Interim Executive Director, on the AIDS 2022 conference, our projects, community engagement, and more.

Transgender people have been significantly involved with the AIDS and HIV movements since the beginning of the epidemic. Every two years, the International AIDS Society (IAS) International AIDS Conference serves as a platform for activists, scientists and academics to discuss the most recent advances in the fight to eradicate HIV and AIDS. We spoke with Erika Castellanos, our Interim Executive Director, about what to expect this year and why it is important for trans people to stay involved.

Erika, can you tell us about the different ways of participating at the AIDS 2022 Conference?

EC: The uniqueness of this conference is that it is hybrid, so people can participate both in-person and online. The virtual option is for those who cannot travel or do not want to travel,  perhaps because it might not be safe for them. Except for a few sessions in the Global Village, the majority of the sessions can be accessed online, and many will be highly interactive, with online viewers being able to ask questions to engage with the speakers and the audience.

That’s important, so they’re ensuring participation isn’t restricted by systematic or travel issues. Does the IAS encourage participation from trans and gender diverse communities? And why is it beneficial for them to attend AIDS 2022?

EC: Community engagement at the AIDS Conference is highly encouraged. We need to have a place where the latest scientific and technological advances are shared with everyone: academics, scientists, and communities. Together, we learn and share experiences. The HIV response has historically been characterized by activism. It was people living with HIV at the beginning of the epidemic who pushed governments to do something, to care, to provide services and access to medication. It was the communities who pushed for a system to finance the epidemic worldwide, such as the Global Fund.

People living with HIV, regardless of the population they belong to, are an integral part of AIDS Conferences. There are Civil Society partners that are part of the planning process to ensure that there is a representative balance with the speakers and the sessions. Over the years, as the community groups and the conferences have changed, the IAS has gone through a learning phase and has been putting action into making the AIDS Conference a friendlier space for trans people.

Some of the significant changes include the ability to use your chosen name on your name tag and throughout the registration process, so that your deadname is not exposed. The application process also requests your pronouns so that the constant and correct use of pronouns are reinforced. Additionally, the AIDS Conference includes topics and thematics that are important for the trans community. Considering the impact of HIV on the trans community, it wouldn’t be a HIV conference without including us. Also, it’s worth noting that the IAS would never choose a country where, for example, you would be sent to jail or condemned to death because of who you are. Everyone must be certain of their ability to interact safely in the host country.

Thank you, that’s great to hear about the involvement of trans and gender diverse communities in the conference. So what knowledge can be gained from it as a trans person, and how can that be shared and  applied in our local communities?

EC: There are tremendous opportunities to gain knowledge and network with other activists, researchers and leaders. This is a conference where the latest science is going to be highlighted. If there’s any breakthrough, this is where it will be presented, where you will be able to learn about whether there are advances in a HIV vaccine, in treatment, and the evolution into long-acting treatment.

But not it’s not only biomedical advances.

You will also learn best practices and changes in legislation in different countries. There is a focus on the human rights component around HIV, how it is evolving, and how the different agents – communities, governments, and other stakeholders – can come together to contribute to the improvement of quality of life for people living with HIV. This goes hand in hand with efforts to bring down the incidence rate, in which everyone works harder on effective prevention so that fewer people are contracting HIV in the future.

There are also lessons to be learned regarding community-level best practices, including the involvement of the community as service providers, and presenting community-driven and community-led research at the conference. Often, people think that they’re going to a conference to listen to a bunch of academics talking about complex concepts that nobody understands. The AIDS 2022 Conference is the complete opposite to this. It is a place where sessions use acceptable, welcoming, and easily digestible language.

The conference program itself is divided into different tracks. There’s the scientific track, the community track, and the leadership track. All the tracks present different types of data that look at human rights issues, policy changes, new treatments becoming available, updates on how treatments are given, new prevention tools and so on.

Over the years, we have seen significant steps forward in how treatment is addressed.  When PREP was first launched, it provided a hugely important prevention tool for people not living with HIV who want an extra layer of protection from contracting HIV. The conference has evolved in how it presents options around HIV treatment and care. At the beginning of the epidemic, everything was about abstinence. It came from a moralistic view that focused on invading people’s private lives and policing their sexuality. Now, the focus is on giving choice to the individual.

‘‘The power of decision-making regarding what tools, medication, and strategies we use rests more and more on individual choice.  Now, we can make informed decisions, but we can also bring that knowledge and that choice to our communities on the ground, to our home countries.’’

We can learn what has worked well in another country and adapt it to our setting. We can take what we’ve learned and use it to advocate in our country for access to services that might not exist yet, and implement those things in our advocacy plans for our organizations. We can share good practices learned at the AIDS 2022 Conference with our community members and our peers.

Last, but not least,I think one of the biggest benefits of going to a conference is the networking that happens—getting to know others from around the world and getting to work together, getting to learn about the different strategies from around the world. When I was first diagnosed with HIV, meeting another person who was going through the same issues I was dealing with was very meaningful. The connections you make are invaluable, and because it’s a safe space to interact, it builds a sense of community and belonging, as well as providing you with the tools and opportunities to learn from one another.

That’s very important because networking is a key aspect of the type of knowledge that you can get from attending this conference that really allows you to make more data-driven decisions . Thank you for that! My next question is  regarding GATE’s involvement in the conference. Will you be hosting any events?

EC: GATE has been involved for several years with the AIDS Conferences. We try to participate, not only as an organization, but also in fostering, incentivizing, and strengthening the participation of trans people in general. One of the ways in which we do this is by providing information to our communities. On our website, as the information comes available, we will be highlighting the sessions where trans thematic areas or topics are being discussed, and wherever there is a trans speaker. In addition, we will be curating content that trans communities and allies might find interesting.

Prior to the conference, on 22 March and 24 May, we will be hosting webinars on how to engage with the conference. Some of the issues discussed will include topics such as immigration and visa requirements, and COVID-related issues for attending the conference in person. Other topics will include lobbying and trans participation during the conference, and information on special sessions relevant to trans and gender diverse communities. We will also be answering any questions that people might have hovering at the back of their mind. Join our mailing list to keep up to date on announcements regarding these webinars and other AIDS 2022 Conference updates.

In past AIDS Conferences in 2018 and 2020, GATE hosted a Trans Networking Zone in collaboration with IRGT and other trans organizations from across the world, and in 2020 GATE presented the first ever trans men and HIV satellite session. In 2022, GATE hopes to host a Trans Networking Zone again in partnership with IRGT: A Global Network of Trans Women and HIV; Social, Health and Empowerment Feminist Collective of Transgender Women of Africa (SHE); RED Trans Peru; CliniQ; and Transgender Europe (TGEU). Called ‘TRANSport: A TRANS and Gender Diverse Community Re-Engagement Hub’, it will be held in the Global Village, an area of the conference that is free for anyone to access, including those who have not registered to attend the AIDS 2022 Conference. In this space we plan to hold sessions relevant to the community on issues that impact the lives of trans people.

Our aim is for the TRANSport Hub to provide information, knowledge sharing and networking opportunities with people from around the world, and entertainment! We plan to hold a special gala for everyone to welcome, share, partake, and just smile and laugh with each other. After so many years of COVID, our communities need this space. Throughout the conference, GATE’s team will be live-streaming several of our events in the Trans Networking Zone with our communities around the world who are unable, or choose not, to travel to the conference.

Finally, is there any work that GATE will be presenting this year that we should look out for?

Absolutely! GATE will be presenting a Satellite Session on some fantastic research and it’s practical applications that we did in collaboration with amfAR and funded by the Elton John AIDS Foundation. Its focus is on the involvement of trans people in the development of national strategic plans, which has been developed into two guidelines: one for our community and one for governments. It is currently being implemented in five countries across the world – Ukraine, Thailand, Kenya, Uganda, and Zambia – and this Satellite Session will be an opportunity to highlight how the guidelines are working, the changes that have come out of this research, and the impact of the guidelines being implemented on a country-level. This Satellite Session is called Meaningful Engagement of Trans persons in NSPs and we will be providing more information on it closer to the conference.

For anyone looking for the latest information on the AIDS 2022 Conference, keep an eye on GATE’s website at gate.ngo/AIDS-2022, where we will be providing regular updates on information relevant to trans and gender diverse communities.

Thank you for your time today Erika!