Young People Living with HIV/AIDS: the Y+ Summit

“People who work hard to fight HIV stigma inspire me, so I also want to join the fight. Stigma and discrimination are real but I’m able to cope because of peer support, counselors and doctors. I take my medication without thinking about it and I have undergone many trainings. I feel empowered.” – Robinah Babirye (22, 3rd year student at Kyambogo University)

HIV is a boogie man we have been taught to hate and fear. This is the reason that young people who are infected with this virus can feel like they have been handed a death sentence. It raises many difficult questions for them, like who will love them and how they will find happiness post HIV infection?

There is a cyclical relationship between stigma and HIV: people who experience stigma and discrimination are marginalised and made more vulnerable to HIV, while those living with HIV are more vulnerable to stigma and discrimination.

One of the ways we engage young people is through summits at which we can hold deep discussions about what these young people are facing. The HIV epidemic is one of the biggest challenges young people face today – over 500 girls are infected every week in Uganda.

The Y+ Summit, organised by the Uganda Network of Young People Living with HIV/AIDS (UNYPA), took place from 18-20 March 2018. The Y+ Summit is an innovative, youth-centered approach that aims to put young people at the forefront of fighting the HIV/AIDS epidemic. It provides young people living with HIV/AIDS with information on how to empower themselves economically, as well on how to live life post HIV/AIDS infection to the fullest.

Young people are a key population, which means that the social, political and economic trends of communities are directly attached to them. If young people are healthy, informed and empowered, their communities stand to benefit and develop. Poor health makes young people, and therefore wider society, less productive. Uganda is also a particularly young nation, with young people making up more than 70% of the total population.

Last month’s Y+ Summit was all-inclusive, keeping over 200 participants engaged over three days. From bold and fearless panel talks to extensive focus group discussions, positive living was made understandable to all. Many topics were discussed, including taking medication consistently, new trends in treatment, curbing new infections and discordance. There were even explanations of HIV and the law in Uganda, which the reigning Miss Y+ Gloria Nawanyaga explained in terms of the 90-90-90 strategy:

“Any intentional infection of another with HIV is criminal and punishable by law. This is in no way meant to marginalise anyone living with HIV, but it is a way for us to live positively and a guide for deterring any new infections,” she said.

Participants at the Y+ Summit. Photo credit: Uganda Network of Young People Living with HIV

The Summit attracted speakers from religious, cultural, legal and entertainment sectors, who each talked about positive living in their spheres. For us, the most memorable was Canon Gideon Mugisha, a clergy who has lived positively for 17 years. He was keen to remind the attendees of the coexistence between religion and medication: “We all know that God helps those that help themselves. If you find that you are positive, you need to pray for God’s protection but you also need to take your medication. Personally, I pray to God like there is no medicine, and I take my medication like there is no God.” 

Another panelist was Wilson Bugembe, a musician and pastor who shared his story of living with HIV positive siblings even when he himself was negative. Other speakers included Dr Karusa Kiragu, the UNAIDS Uganda Country Director and Hon Florence Nakiwala Kiyingi, the Ugandan Minister for Youth and Children’s Affairs.

Rio Babirye, a Communications Officer with UNYPA, told us that she was happy that the summit had promised more creativity to redefine the lives of those living positively in Uganda:

“This year’s turn up was greater than last year’s and it was a more productive summit. It is our dream to end stigma and discrimination against HIV, and we shall keep refreshing our young minds to come up with ideas to do so,” she said.

HIV: I am Positive

When it comes to HIV, I am positive. I am positive because I refuse to be any other way.

I am positive because too many people are negative about a disease that is neither deserved nor disgraceful, but circumstantial.

I am positive because 35.3 million people, almost half of whom are women, are living with a disease that has no cure. Of these women, 76 percent live in Sub-Saharan Africa and often become infected because of gender-based sexual or physical violence. I am positive because I cannot imagine looking at another woman negatively after she has had her rights completely stripped away through a violent act, only to discover she now also has an incurable disease.

I am positive because I believe positivity, action, and support create the best environment for sustainable change.

I am positive because when a woman in Sub-Saharan Africa is diagnosed with HIV, she needs an environment that encourages sustainable change, so she can access proper care, antiretroviral therapy (ARTs), and emotional and economic support.

Unfortunately, not all share my positivity.

There are millions of women who still lack access to ARTs, proper healthcare, and education about HIV. This is a serious problem. It’s also a serious problem that women and girls around the world experience physical and sexual violence at astounding rates, increasing their likelihoods of contracting HIV.

But what seems worst of all, is the fact that so many millions of women have to experience the diagnosis of a terminal illness, and are treated as less than human as a result. The negativity and stigma around HIV, is absolutely unnecessary.

The World Health Organization uses the definition of stigma as “an attribute that is deeply discrediting, which results in the reduction of a person to a discounted one”. Due to lack of education and awareness, people fear casual transmission of HIV, and often negatively judge those who have contracted it.

HIV studies in Ethiopia, India, Mozambique, Tanzania, and Zambia, have all found women experience more HIV stigma than men because of underlying socioeconomic gender inequalities. According to the World Health Organization,

“In Tanzania, almost two-thirds of women with HIV reported stigma, compared with less than half of men.”

HIV positive women also reported increased physical violence by an intimate partner after their diagnosis.

It will take years of education, awareness campaigns, and enhanced resources targeted to specific countries in Sub-Saharan Africa to change underlying gender stereotypes and socioeconomic inequalities that have helped create these stigmas around HIV positive women. Today, on World AIDS Day, I urge you to seek change in positivity.

I urge you to educate yourself on the facts surrounding HIV, and become aware of the unnecessary circumstances millions of people face beyond the physical illness of the disease. The People Living with HIV Stigma Index says it perfectly:

“It is not a moral disease, it is a viral disease.”

I urge you to be positive, compassionate, and open about HIV and those whose lives are forever altered by its stigma. Positivity creates an environment for positive change. When it comes to HIV stigma, we need positive change.

In the famous words of poet Maya Angelou I urge you to remember,

“People will forget what you said. People will forget what you did. But people will never forget how you made them feel.”