It would seem impossible to increase awareness of HIV in Bhekulwandle, with the prevalence of billboards, public health spots on radio and TV, and posters in public places. However, most peopleʼs true understanding of the illness and how to help someone who becomes sick is woefully inadequate. Dozens of people line up in city parking lots each afternoon to buy bottles of mysterious, syrupy “miracle cures” poured from massive drums on the back of pickup trucks. A cottage industry of home remedies has sprouted, taking advantage of the poorly-educated and desperate. So many of the community members Seed Of Hope staff visit in Bhekulwandle are dying in bed at home, surrounded by family, while help is a short distance away.
Because the stigma around HIV remains powerful, even most training courses offered through hospitals or humanitarian organizations are very theoretical, and no personal stories are shared. In May of this year, we launched a dramatically different type of training program for those with HIV or who want to help their sick relatives and neighbours in coping with the illness. We call it LifeWise, and we designed it to break through the stigma that prevents open conversations about AIDS, even among those living with the disease.
The LifeWise course kicked off dramatically, as a Seed Of Hope staff member shared the moving story of receiving her own diagnosis, followed by the painful revelation that her young son was also HIV positive. During the weeklong program we demonstrated an HIV rapid test, gave practical information about assessing how advanced someoneʼs illness is, and taught how to get access to government-provided anti-retroviral therapy (ART). We addressed the importance of telling people you trust about your HIV status, joining a support group, and we gave people a far deeper understanding how the virus works in the body. Class members worked together on ideas to overcome stigma, and watched video footage showing how quickly ART can restore the immunity of very sick people.
The response was enthusiastic, and at times emotional. One participant shared how stunned she had been to hear our staff member candidly and vulnerably disclose her own HIV status, saying it was one of the most powerful statements she had ever heard. Another man said that despite attending courses in HIV care at other organizations, he had never experienced a training so helpful.
This is one step toward our goal of stemming the tide of HIV-related deaths in our community. Our role must increasingly be to empower local people to care for themselves and their loved ones – and to speak freely about the AIDS pandemic. Since May, we have been working to make LifeWise even more effective, and we plan to offer it again in October.