How PLHIV won the war against stigma
Zolani Kraai | Friday December 9, 2016 15:52
In 2003, the United Nations Children’s Fund (UNICEF) in collaboration with the Ministry of Education and Botswana Network of People Living with HIV/AIDS (BONEPWA+) introduced a pilot project that sought to engage people openly living with HIV to capacitate teachers and learners in primary schools with vital HIV/AIDS and treatment information.
The project, ‘Ringing the Bell’ aimed to help the ministry contend with teachers, among them HIV positive ones, who were not comfortable with openly teaching about HIV/AIDS. The partnership recruited 30 HIV+ individuals who were attached to primary schools across the country and helped learners with understanding HIV/AIDS and Antiretroviral Therapy (ART).
The project remains a prime example of how People Living with HIV/AIDS (PLHIVs) helped demystify and reduce the stigma around the disease, by standing up and speaking out about the disease.
The high mortality and negative connotations around HIV/AIDS in the early years made it a taboo subject and fostered deep discrimination and stigma around the disease.
Amidst the rear, suspicions and mistrust that gripped the country in the 1990s as the HIV incidence and prevalence rates climbed, a few brave men and women stood up, revealed their statuses and offered to help fight the stigma.
Since the end of ‘Ringing the Bell’ trial project, which was highly commended by many school heads and education officers, UNAIDS continued to mobilise resources to support networks of PLHIVs in Botswana in various aspects of HIV programming. With UNAIDS’ support, networks managed to implement interventions that involved PLHIVs thus tremendously decreasing fear, denial, stigma and discrimination.
UNAIDS country coordinator, Dr Gang Sun says the agency values the role PLHIV and the civic society have played in the HIV response.
According to Sun, PLHIV in Community-Based Organisations (CBOs) are not only expected to receive services, but are also active role players and eventually leaders in guiding HIV programming and policy development.
“We have witnessed the hard work of the positive network in Botswana and collaborated with them in the Stigma Index Study. HIV positive members from the CBOs were recruited as interviewers to collect the information and contributed to the data analysis,” Sun explains.
However, the road has not always been smooth.
Some AIDS activists in Botswana say they have been excluded from planning and coordination of AIDS interventions, especially at district level. Others also query the essence and relevance of World AIDS Day (WAD) in Botswana, saying it is no longer significant to them.
WAD was commemorated on December 1 countrywide.
Tebogo Lemogang, a 40-year-old man living with HIV in Gaborone, believes the commemoration in Botswana should not only be a platform for government to share progress made in the HIV response, but an event for PLHIV and their families to remember their loved ones, heroes and heroines.
“WAD commemorations should include weeklong side workshops on refocusing and intensifying HIV prevention strategies. Workshops targeting young adults and couples as well as sensitisation panel discussions on key populations, should form part of the WAD commemorations.”
Sun concurs with Lemogang saying other activities such as the AIDS Candlelight Memorial should be coordinated with dignity as they symbolises the hope and commitment that governments, civil society and international donors have in the HIV response.
“Resources need to be mobilised to uplift the level of coordination of the AIDS Candlelight Memorial. It is an important moment to motivate those on ART to stay focused and live positively. I have attended many memorials but the recent one organised by BONEPWA+ was so meaningful and healing,” Sun says.
Over a decade of experience has proven that the HIV response in Botswana cannot be fully addressed without simultaneously addressing poverty, socio-economic inequality, and the broader issues of economic development. UNAIDS is keenly aware of this fact.
“The impact we make against HIV now will also assist with the elimination of other social issues such as poverty and gender violence,” Sun says.
“Poverty fuels a particular vulnerability to HIV infection, increasing risky behaviour and the reluctance of key populations to seek prompt medical attention.”
According to Sun, poverty and power discrepancies in intimate relationships also drive young women to expose themselves to HIV and sexual violence. Safeguarding and empowering young women, therefore, remains central to achieving Botswana’s Sustainable Development Goals.
While in 2001, then UN secretary general Kofi Annan visited Botswana and applauded the country for its economic management, Botswana still faces great challenges in the areas of poverty and unemployment, key drivers of the spread of HIV/AIDS.
Experts believe, therefore, that the role of PLHIV in curbing the spread of the disease has evolved from fighting stigma to designing HIV response programmes around prevention, as well as adherence to ART for those already infected.