This is the story of Princess, whose parents transmitted HIV to her when she was born.
Ten years ago, nobody thought Princess and the many hundreds of thousands like her would reach adolescence or sexual maturity, because they were supposed to be dead before they turned 2. But with new medical advancements come new dilemmas.
Princess is now in her twenties, and she is among a growing number of what they call in Uganda “young positives.” “Positive,” of course, doesn’t refer to their mental state but to their HIV status.
Far from being positive, a lot of “positives” are understandably angry when they learn of their status. They never engaged in risky behavior, yet they are burdened with a deadly disease. Many positives struggle to come to terms with their situation. Because of their anger and denial, some positives engage in unprotected sex and they are now a major source of new infections in Uganda and presumably elsewhere.
But unlike most young positives, Princess has largely dealt with her anger and is at a place in her life where she wants to educate other young people about the ABC’s: Abstain if you can; Be Faithful to a single, uninfected partner; Use a Condom if you must have sex. She’s a staff member at Straight Talk, an NGO in Kampala that specializes in communication for social change.
Straight Talk doesn’t deliver “messages” about disease and the ABC’s, they engage in a conversation with adolescents about the issues in their lives, especially those dealing with relationships and sex. In a society where 30% of women are in a polygamist marriage and most men have frequent, ongoing casual sexual relationships outside of their marriage, there are a lot of issues to talk about. Homosexuality in Uganda is “ferociously taboo,” masturbation is a delicate topic and even promoting the use of condoms is sometimes controversial.
Straight Talk uses young people like Princess who tell their own stories, and ask their own honest questions. They respond to real young people with accurate medical information, prevention strategies, treatment resources and psycho-social support into their programming which is delivered face to face, via monthly newspaper inserts and, most effectively, via radio programs that have now expanded to include 15 of Uganda’s 28 languages.
A lot has changed in 15 years..
According to its founder Cathy Watson, organizations like Straight Talk are scrambling to make some adjustments to their programming. In an effort to de-stigmatize HIV/AIDS, they were successful over the last decade in spreading the message that “hey, HIV isn’t the end of the world, you’ll be okay.” Anti-retroviral (ARVs) have allowed people with HIV to live outwardly normal lives. But the unintended consequences of this fantastic development were that, after a decade of declining infection rates, HIV is back on the rise as people think HIV is “no big deal.”
Yet ARVs are not a panacea. Taking ARVs is a major commitment, as you must follow a strict regimen to avoid developing immunity. And if you work in an office, for example, you now have the issue of taking ARVs at the office, where co-workers may see you and discover your still-difficult status. If you are in a rural area, getting your prescription refilled and taking your pills at the exact same time every day is a significant burden. Worse, ARVs have plenty of unpleasant side-effects. But if you go off the drugs for even a short time, you may develop immunity to the ARVs and have to move on to stronger, less effective drugs. To counteract the impression that ARVs make HIV less of an issue, says Cathy, “Straight Talk is looking for a balance between hope and caution.”
Interestingly, the rates of polygamy and infidelity means that the fastest growing rates of infection are among married people. And since past HIV campaigns used to suggest that “there are no risky groups, only risky behaviors,” the HIV prevention strategies are also retooling to focus on high-risk groups such as truckers (HIV is prevalent along highways where truckers have unprotected sex along their way) and commercial sex workers. Recent government data also shows that infection rates are incredibly high along Lake Victoria and increasing along new drug routes coming from Pakistan.
Straight Talk is making a difference among Ugandan youth, who turn up at local health clinics asking for medical personnel mentioned in Straight Talk by name. Straight Talk received—and answered 27,000 individual letters last year, providing advice, resources and in many cases small gifts to a huge number of young people.
So many people have come to Cathy Watson over the years telling her how they will fix her problems and make her program better. Although Cathy would be the first to admit there are some things they could be doing better, I can’t help but think we should be asking Straight Talk to teach us rather than thinking we have so much to teach them.
A Positive Positive
When I met Princess this morning, I asked her where she got her name, which is a pseudonym she uses for the radio broadcasts to protect her real identity. Despite the relative success of de-stigmatization efforts, positives can still be shunned for their status and the great majority do not reveal it to friends, co-workers and sometimes even sexual partners. She said that growing up she struggled with anger and depression, and had terrible self-esteem. She chose the name Princess because it made her feel special, and cared for, and helped her feel better about herself.
Now Princess is working to help other young positives to feel better about themselves. She has started a youth caravan at Straight Talk that visits schools and performs music, dance and skits that deal with issues of sexual health while entertaining the students. At a recent performance, she was approached by three young positives after the show and was able to counsel them about their situation. Princess is exactly the kind of young, positive influence who will help her fellow innocents resolve their anger and live responsibly as persons infected with HIV.
Tags: HIV, Straight Talk, uganda, young positives
