It’s been 32 years since HIV was first discovered. Since then, it’s fair to say that we have come a long way. Just slightly more than 2 million people were infected with HIV in 2013, down from more than 3.6 million in 1997, the epidemic’s height. Currently, approximately 15 million people are taking anti-retroviral drugs (ARVs), pills taken daily that prevent the virus from growing in the body, turning HIV into a chronic, manageable condition. It’s estimated that more than 7 million lives have been saved since 2000 as a result. ARVs have also had a huge impact on decreasing the risk of exposure to HIV: ARVs reduce the risk of transmitting HIV to others by up to 96 percent.
These scientific advances are making a real impact. Fewer people are getting infected and those who are infected are living longer. This World AIDS Day, there is indeed much to celebrate.
But when we take stock of how people living with HIV around the world are faring, it becomes clear that our work is far from over. Unicef reports that AIDS is now a leading cause of death for African adolescents. But at the same time, there has been a tremendous increase in access to life-saving treatment, which means more people are now living with HIV and navigating the challenges associated with being HIV positive, chief among these, stigma and discrimination. Experiencing—or worrying about experiencing—stigma and discrimination prevents people with HIV from leading fulfilling, productive lives, particularly children who may only learn of their HIV status during adolescence. Adolescence is already fraught with change and anxiety. Add concerns about being isolated or shunned by peers and family members, and we begin to get a picture of just how difficult it can be to grow up with HIV.
A recent International Center for Research on Women study explored the challenges girls living with HIV are facing in Zambia, where more than 1 in every 20 girls between the ages of 15 and 19 are living with HIV.
While many of the girls ICRW interviewed acquired HIV at birth in the late 1990s (when ARVs were not widely available for pregnant women), we know that, broadly, adolescent girls in Zambia are at risk of acquiring HIV due to social factors, such as harmful gender norms that increase girls’ risk of being coerced or forced to have sex, and structural factors, like the lack of youth-friendly reproductive and sexual health services.
While the girls in our study were getting appropriate treatment for their HIV, sexual and reproductive health information was virtually non-existent. If clinic staff did provide information, it was often vague or misleading. As a result, the girls interviewed did not know that taking ARVs greatly reduces the risk of transmitting HIV to a sexual partner or to a baby if they were to become pregnant. Clinic staff discouraged them from having sex at all and were hesitant to provide information about preventing transmission to sexual partners out of fear that it might encourage adolescents to engage in unprotected sex. The lack of information was a source of both confusion and distress.
For girls in Zambia, living with HIV has been, in a word, difficult.
Like most girls, our study participants had big dreams and aspirations for the future, including getting married, raising a family and having a good job.
HIV will not stop me from achieving my dreams. – Rosemary*, 17
The girls didn’t want HIV to stand in their way, but most didn’t have the support they need to navigate a healthy transition to adulthood. They seem to face roadblocks at every turn.
Challenges for girls existed even in the home. Some girls noted that family members didn’t fully understand how HIV is transmitted, reporting that they were moved away from other children in the family or given separate plates, cups and clothes, an indication that their family does not know that HIV cannot be transmitted through casual contact.
At school, many girls reported that teachers provided incorrect and judgmental information about HIV, which made them fearful of others learning their status.
I’m scared if I tell people they will talk about me. I’d rather keep it to myself. – Grace*, 18
In some cases, this fear led to missed doses of ARVs, because the girls didn’t want their classmates to see them taking pills at after-school events.
In addition to challenges at the home and in school, girls faced still more at the clinics where they received their medical care. Long wait times and administrative barriers, such as lost lab work and files, result in girls missing whole days of school.
Despite these challenges, girls overwhelmingly told ICRW that HIV is not going to hold them back.
In Zambia and around the world, girls living with HIV should have the same hopes and dreams as any other girl. They should be able to dream about a future with a career as a doctor, lawyer or teacher, and a future with a family, should they want to have one. The challenges that the girls highlighted undercut efforts to provide girls living with HIV a normal life.
The good news is that small changes can cut down these barriers for adolescent girls. First, we must ensure that information sessions and counseling support engage parents and guardians, so they better understand HIV and are better prepared to talk to their children on issues surrounding HIV. Second, we must work with teen counselors (whether teachers or nurses) to ensure sex is discussed in a non-judgmental way that doesn’t discourage girls from being sexually active or otherwise stigmatize them because of their HIV status. Third, we must implement school-wide campaigns to promote compassion for people living with HIV, which will help reduce the stigma and discrimination facing those living with HIV. Our full list of recommendations can provide policy-makers and program implementers the necessary framework to ensure girls feel supported and empowered while they grow up living with HIV.
Our hope is that by next World AIDS day, adolescent girls from Zambia to Azerbaijan and nearly every country in between can begin to live lives free from discrimination, can access their treatment on a schedule that allows them to adhere to life-saving care, and that their hopes and dreams continue to grow every year as they do.
* Names have been changed
Photo via Shutterstock
Anne Stangl is a senior behavioral scientist at the International Center for Research on Women.