I have really been slacking on the blog. In my defense, our internet has been getting fried on a daily basis for the past two weeks. We only have power for 6-8 hours per day and the rest of the time we run a generator at the office. It turns out that every time the power shuts off, the surge messes up our wireless internet configuration. Africom, our internet provider, has sent someone out here so often in the past two weeks that we actually sent someone from the office to go pick up one of their technicians to fix our system again on Friday. The problem has thankfully been solved with an easy solution: surge protector. We also got swamped with quarter-end reporting for all our grants. Who knew that Sep 30 marked the end of a reporting period? Enough excuses, I'm back and I have a backlog of things to post about. We've had some really amazing experiences in the last two weeks that have put an even more personal face on the HIV epidemic in Bulawayo.
Today we went to visit Dr. Nyathi, director of the Opportunistic Infections Clinic at Mpilo Central Hospital, at her offices downtown (again, downtown in a dusty, sprawling city of 2 million doesn’t mean much). The waiting room had two tiny plastic horses in the center for kids to sit on and some dirty dolls and other toys on the window sill. After an hour, Dr. Nyathi arrived, a little out of breath. We passed through to her office and gave her our VCT pitch. She reflected for a moment and then began to describe her work at the Mpilo OI clinic with HIV positive youth. At first it seemed she was ignoring our request for a partnership with Mpilo for VCT, but it quickly became apparent that she was actually registering a plea for help with an organization that might be able to bring resources and support to Mpilo.
Dr. Nyathi began by acknowledging that she shared our interest in barriers to HIV care for teenagers in Bulawayo, but that she is most anxious to conduct research on HIV+ teens who have defaulted. She explained that Mpilo has a long list of defaulters, and the hospital needs to know why they leave treatment and how it might bring them back. Defaulters are teenagers who start a regimen of anti-retroviral drugs (ARVs), the drugs needed to keep the HIV virus in check, but then become delinquent and fail to meet their appointments. They fall off their prescribed life-saving regimen, endangering themselves and their loved ones. Although they will most likely die within a few years without treatment, they will also have a surging viral load in the meantime which makes them more infectious to others. The majority of teens on treatment at Mpilo Hospital have acquired HIV as a result of vertical transmission, which is when a mother passes HIV on to her offspring in the womb or due to exchange of blood during birth. Vertical transmission can be prevented with a high rate of success through a process called PMTCT (prevention of mother to child transmission), but health infrastructure in Bulawayo is so poor that many women, and especially young mothers, do not have access to PMTCT. One of our goals for our VCT tournaments is to reduce barriers to services like PMTCT and medical male circumcision, not just HIV testing.
Dr. Nyathi lamented that there are many 12-18 year olds in Zimbabwe who have AIDS and that many are ill; however, Mpilo has managed to reach almost all of them who live in Bulawayo, so the challenge at the moment is keeping teens on their treatment. One might wonder why a teenager would opt not to follow his or her regimen of ARV drugs when it means life or death. Besides the monetary or geographical barriers to care which are very real in a country with an 80% unemployment rate and 68% of the population living below the poverty line, many teenagers are heads of households in Zimbabwe and have countless siblings to care for, cook for, and clean up after (CIA world factbook reports that unemployment soared as high as 95% in 2009). They might start the regimen when they’re young and their parents are around to bring them to the clinic for checkups, but once they take on more responsibilities it becomes harder to make monthly appointments. Since many of the teens have HIV as a result of vertical transmission, their odds of being orphaned are much higher, also heaping more responsibility on their narrow shoulders and making compliance even more difficult. Compliance itself is a tricky term because it implies agency and therefore deliberate delinquency; but as we can see from all these potential drivers of ARV treatment default, many of these teens are stripped of their agency by poverty or other disadvantages very early in life.
Interestingly enough, although these are all potential factors in non-compliance, Dr. Nyathi did not mention any of them. She had listened carefully to how GRS uses soccer as a tool to attract, engage, and retain the attention of youth, the most vulnerable segment of Africa’s soccer-crazed population. She chose to focus on the psycho-social aspect of non-compliance, which by her estimation is a major driver amongst the age group we’re targeting. Dr. Nyathi explained that these teens are left in a state of bereavement when they are diagnosed with HIV. Many of those who default as a result of anger, depression, or inability to cope are children who find out their HIV status as they approach teenagehood. They live healthy lives through their first decade, before the HIV virus has overrun their immune systems and left them vulnerable to opportunistic infections. As Dr. Nyathi put it, imagine you’re running around playing soccer one day and the next day you have HIV. These kids lose their trust in their parents because many are intensely angry that their mothers did not seek PMTCT. Parents often hide their own HIV status from their children. The teens lose their sense of themselves, their friends, their social status, and their health overnight. Therefore they experience an acute loss of self and in mourning their loss they lash out.
Dr. Nyathi launched into a series of case studies which illustrate the incredible burden carried by teens infected by no fault of their own. Teenagers tend to have poor judgment in general, she admitted, and these poor kids employ coping mechanisms which can be reckless and harmful to others besides themselves. She told the story of one 18-year-old who defaulted on treatment and thought he would feel better if he got a girlfriend. He started dating a girl he really liked without disclosing his status and he had unprotected sex with her. Now he fears he may have infected her with HIV but is afraid to tell her. Many young pregnant women in Bulawayo who are HIV+ fail to tell their partners out of a fear of retribution and go to elaborate lengths to get their ARV treatment in secret. Young women who live in the rural areas might periodically ask their husband for money to go shopping in Bulawayo and visit Mpilo for their checkups. One woman hopes to have an HIV test taken along with her husband when their baby is born, planning to pretend she is finding out her status for the first time. Thus Dr. Nyathi’s question is, how can we reduce the rate of teenage ARV default at Mpilo; reduce teens’ rate of hating themselves? How can we help them cope in healthy ways and reduce stigma and use of harmful coping mechanisms?
The question running through my head as Dr. Nyathi gave us invaluable insight into one of the less talked-about realities of life with HIV in Bulawayo was, What can GRS do about this? At orientation we learned of a GRS program for HIV+ kids in Malawi which is run in partnership with Baylor School of Medicine. Baylor has a teen club for HIV+ kids which has grown to 250 strong over the past few years. Teens come together to take their ARVs and then they hang out, have discussions, and play GRS games. We mentioned the program to Dr. Nyathi and told her we would work on something. She was excited about the potential application of GRS coping mechanisms through GRS games aimed at conflict mediation and discussion to help teens at Mpilo.
When we got back to the office after our visit with Dr. Nyathi, we dug a little deeper into the new Generation Skillz curriculum and realized how much of it focused on empowering teens to resolve conflicts they face which may put them at risk for contracting HIV. The HIV+ kids at Mpilo face conflicts too – with their parents, their peers, and themselves. And the best part of Generation Skillz is that it targets an older audience (15-19) with a discussion-based curriculum. In Malawi’s teen club, one of the most powerful aspects of the program is the incredible support network it builds. Teens realize that they are not alone in their bereavement and that there are others suffering the same loss. In a supportive environment they talk about their treatment and come to understand the risks of defaulting. They learn through GRS game play that they can be healthy, even living with HIV. They learn that they can even play soccer again.
So we continued bouncing ideas around and realized we might be able to adapt the Gen Skillz curriculum for HIV+ kids. Through heated candle-light conversations (no power, of course) with Hooter Glidden, GRS Global’s visiting curriculum and development specialist who was our houseguest for the week, our idea began to take shape. We’re calling it GRS Skillz Club. Skillz Club would establish support groups for HIV-positive youth undergoing ARV treatment at Mpilo Hospital. The groups would meet once per week for 10-15 weeks to play GRS games adapted from the Gen Skillz curriculum. GRS game-play provokes conversations which foster individual self esteem and self-efficacy, promote a collective identity to help teens cope with their diagnosis, and empower them with skills to resolve conflicts that arise as a result of their HIV status. GRS coaches would be trained in HIV counseling and Mpilo counselors trained in the GRS curriculum; the two would then be paired as co-counselors to lead each support group “team” of 10 HIV-positive youth. This cross training model should facilitate exchange, sharing of resources, and sustainability of the program before Skillz Club even begins. Skillz Club would culminate with a soccer tournament where the 10 support group teams play against each other at a community venue to build self-esteem, reduce stigma, and provide role models for healthy living with HIV. The Skillz Club curriculum would consist of Gen Skillz activities adapted for children living with HIV, supplemented by games such as fair-play soccer and team handball which promote communication and gender equity. Athletic endeavors could prove crucial for children living with HIV who are traumatized from “being healthy one day and HIV positive the next,” as Dr. Nyathi puts it. Soccer can help to restore a sense of normalcy and help teens understand that they can regain the ability to play soccer just as they can regain their lives through adherence to ARV treatment.
We’re excited about the potential for Skillz Club at Mpilo. To top it off, our visit to recruit Dr. Nyathi and Mpilo for our VCT campaign wasn’t in vain either. She left us with a smile and a promise that day: “When you find those that are HIV+, we are happy to treat them.”