EGPAF Ambassadors Brian & Josephine Reflect on AIDS 2018

In July, the International AIDS Society Conference (AIDS 2018) took place in Amsterdam. More than any other AIDS Conference, AIDS 2018 provided youth with a more significant platform and greater voice.

In fact, according to UNAIDS, youth and junior investigators made up more than one-third of the submissions presented at the conference. A record number of youth were also given scholarships to attend the conference, and the Global Village also featured a meeting and exhibition space that was built and run by youth, for youth.

EGPAF was proud to bring a number of our Ambassadors and peer educators to Amsterdam. They are using their voice in their community to help combat stigma and discrimination. Two EGPAF Ambassadors Brian and Josephine share their experiences at AIDS 2018 below. You can read more about them here and here.

How did your background help you feel prepared for your week at AIDS 2018 and the people/conversations you encountered?

Brian: As a child, the psychosocial meetings at EGPAF’s Ariel Clubs, support groups designed to address the social and behavioral barriers to HIV treatment, retention, and adherence faced by children and adolescents, groomed us into leaders right from the start. From mobilizing my peers to attend meetings regularly, to registration and informal follow-up of those who missed the meetings, there was no better preparation for our week at AIDS 2018, where I could take some of my leadership skills and put them into action at the various speaking engagements I attended and took part in.

At the Ariel Club meetings, we create a comfortable, confidential environment by openly shared our [HIV] status with new members of the club to make them feel at home. At AIDS 2018, I carried on the tradition of transparency and openness – a culture that EGPAF had instilled in me during my childhood. I am comfortable speaking about my HIV status and sharing my story with others.

Dee, Brian, Bakara and Josephine arriving at AIDS 2018.

Josephine: I am a one of the first pioneers of Ariel Clubs, a support system that gave me hope, as a young girl in Uganda,  despite my status, helping me to believe that I will realize my dreams as a young person. I learned how to live positively and met with other children living with HIV, which created a family bond after realizing I am not alone. Currently, I am involved in supporting the very same Ariel Clubs in Uganda that I joined many years ago. This has exposed me to learning and teaching about HIV and working with and supporting adolescents living with HIV. I felt very prepared for conference discussions since everything thing was directly related to the work that I do back home.

What was the most important piece of information or advice you conveyed to your peers while there?

Brian: Getting the world to realize how much potential lies in youth for program sustainability in achieving an AIDS-free generation was extremely fulfilling. The most important message I passed on to my peers is to not to look down on themselves because of their age, sexual orientation, HIV status or background — because they are the beacons of hope in helping to achieve the global targets to end HIV/AIDS.

Josephine: To continue being exemplary. Sometimes among us peers, we fail to adhere to our treatment consistently due to the burden of pill fatigue, just like any other person. I urged my generation and future generations to be exemplary and to practice what we preach. I also called upon my fellow peers never to be under pressure when seeing their doctors during their clinic appointments. I told them, even when the doctor has 30 people waiting on the bench, if you are the one in the doctor’s room, take your time with your doctor. Don’t rush because at that moment, the doctor has only you as the patient/client, not the 30 waiting outside.

What was your most meaningful experience while at the conference?

Brian: Seeing adolescents and youth having a seemingly equal voice and platform with adults was really meaningful to me. If youth help to shape HIV prevention programs geared toward them, those programs will have a better chance of success and sustainability.  Initially, youth were only called upon at project implementation phases but seeing them at the forefront of decision making, and included in policy formulation platforms, was an honor. Personally, as a long time PEPFAR beneficiary, my interaction with Ambassador Deborah Birx got me closer to stakeholders whose decisions have dictated the trend of my life as an HIV positive person for decades.

Josephine: For me it was the #PassTheMic session with by Charlize Theron’s organization, Charlize Theron Africa Outreach Project, EGPAF, and the Elizabeth Taylor AIDS Foundation. It was a panel with young people only, who truly expressed themselves without fear. Also another session where youth patient/doctor role-playing was conducted. During the role play that Dr. Natella Rakhmanina led together with a team, they acted out the hospital setting in both patient-friendly and unfriendly circumstances. This led to discussions on how our facility health workers should treat young people.

Did you experience any challenging conversations during AIDS 2018 that you feel would be helpful to share?

Josephine: One person shared that there is no self-stigma…that all we should deal with is external stigma. This was something that was so new, ever since I started talking and hearing about stigma. The argument was, by the time you have self-stigma, you must have learned it from someone that something is not proper, normal, and society is not fine with it, hence developing your own self-fear or stigma.

Can you share any lessons learned at AIDS 2018 that you hope to take back to your peers and youth in Uganda?

Brian:  The IAS experience is very rich and immensely gratifying for me but it was the Grassroots Soccer session that helped me realize that using youth appealing interventions like soccer and music can increase uptake of health services and retention as well.

Josephine: I attended two stigma and discrimination workshops during the conference which opened my eyes  on how we can measure stigma. In my work in Uganda, we take part in activities aimed at reducing stigma but most times we fail to clearly measure stigma and the overall impact of the activities quantitatively. During these IAS sessions, two tools were shared, one being a stigma index tool. This is something I am exploring more on so that we can start using the tool in activities aimed at combating stigma and reducing discrimination.