“Let Communities Lead” – Commemorating 35th World AIDS Day
UKZN – in partnership with the Centre for the AIDS Programme of Research in South Africa (CAPRISA), Africa Health Research Centre (AHRI) and the Sub-Saharan African Network for TB/HIV Research Excellence (SANTHE) – commemorated the 35th World AIDS Day on 1 December 2023 with a panel discussion by leading experts in HIV/AIDS research under the theme: Let Communities Lead.
Multi-award winning UKZN research Professor, Veron Ramsuran, chaired the discussion and said, ‘World AIDS Day is extremely important to us in this environment since HIV affects us tremendously in this province. KwaZulu-Natal (KZN) remains the epicenter of HIV especially amongst young girls between the ages of 18-24. What are some of the issues in KZN that are preventing us from reaching the goal of the Joint United Nations Programme on HIV and AIDS (UNAIDS) calling for 95% of all people living with HIV to know their HIV status, 95% of all people with diagnosed HIV infection to receive sustained antiretroviral therapy (ARVs), and 95% of all people receiving antiretroviral therapy (ART) to have viral suppression by 2025?’
Head of community programmes at CAPRISA and the Deputy General Secretary of the Treatment Action Campaign (TAC), Mr Patrick Mdletshe said there is a need for more community-led, youth-driven programmes as they (the youth) are the most vulnerable. He commented, ‘In South Africa, 95% of all people know their status, 90% are achieving viral suppression but only 76% HIV-diagnosed individuals nationally were on ART. The policy environment and consciousness of the people is great but in South Africa, we are not doing well with behaviour change. We have two distinct populations: the older generation that are familiar with the protocol and treatment and the younger generation that have dissociated from our current projects.
‘The younger generation is not seeing people dying from AIDS, hence they don’t see the importance of HIV antiretrovirals and being tested,’ said Mdletshe.
Ms Mihle Mngeni, UKZN first-year Medical student, qualified professional nurse, and peer educator at the Campus HIV/AIDS Support Unit (CHASU) agreed with Mdletshe. She said, ‘As a student, I’ve noticed that youth pressure each other into risky sexual behaviours including not using condoms without realising that multiple partners increases one’s chances of acquiring and transmitting HIV.’
SANTHE researcher/supervisor, Dr Nothando Ngwenya, who is also a psychologist, mentioned that research should be led by the needs of the communities. She said, ‘They should contribute to policies that affect them. In Botswana, the community placed a lot of effort into stigma reduction and hence people access treatment. However, in our society people still shy away from accessing services. Social support is importance for access and adherence.’
Building on the importance of social support structures, Mdletshe mentioned that family structures should also play a leading role in behavioural change. He said, ‘Research has shown that in South Africa, the majority of People Living with HIV (PLWHIV) are Black, 8% Coloured, 5% White and 1.2% Indian. There is something we need to learn about the Indian family structure that has played a significant role in reducing transmission. We don’t consider the family structure to be important but it is.’
Professor Nceba Gqaleni, AHRI faculty member and an African traditional medicine research expert said, ‘We encourage communities to lead but we take a dim view when they lead to traditional medicine. We must remember that the majority of our population is cared for by traditional healers which facilitates disclosure, access and care. Healers are trained to support their patients with herbal treatments that will not affect the efficacy of ARVs.
‘Further, we are working to find out what ARV properties these traditional, herbal plants have and we are getting close to understanding the role traditional medicine plays in HIV treatment and prevention,’ said Gqaleni.
Mdletshe, who is also a traditional healer, advised people to not listen to “prophets”. ‘In the past, false prophets have called on communities to drink tap water, say a prayer and they will be healed. The main message if you are HIV positive, as I am and have been for many years, is to adhere to the treatment and you will lead a long and fruitful life. At least 12% of PLWHIV experience adverse drug reactions whilst only 0.01% do so in Western countries. Western medicine is not designed for our population so we must continue to pursue the efficacy of our own traditional medicines but in the meantime, access and adhere to the current treatment.’
Ngwenya called on scientists to have conversations with members of the community to understand how they conceptualise HIV, mental health, etc. ‘We need to look at indigenous knowledge systems that speaks to our African identity and can be used to inform treatment for our communities and behavioural change. Involve families. Take the care to the people, especially to our very mobile youth community.’ She added that men are raised a certain way and with the majority of nurses being female, they do not want to engage with them (nurses). ‘Young people don’t want to go to the clinic because they believe they will be admonished for engaging in risky behaviour. We must create safe environments for open discussion and reduce the stigma in our societies.’
Said Ramsuran, ‘UKZN houses the best scientists in HIV and we should all applaud ourselves for being a part of this environment but we also need to expand research into Tuberculosis and sexually transmitted infections.’
Ms Lusanda Mazibuko, a member of AHRI, said young people have grown up with so much of edutainment and knowledge that they should not be engaging in risky sexual behaviour, however our younger youth are facing the serious issue of sexual violence. ‘How can we make our youth feel safe when they are facing a whole new challenge that we must be aware of? We must design interventions to address behavioural change in this context of so much sexual violence.’
Mngeni encouraged parents to create safe environments for their children to discuss the difficult topics. She also said that educators have a leading role to play. ‘When I was young, I signed a document with my mum promising to not fall pregnant as a teenager. Hence, I was unable to have any sex education discussions with my mum. Most mums don’t know how to communicate these sensitive topics with their children but they should start these discussions as early as five years old.’
Gqaleni wrapped-up the session with a key message to all scientists. ‘We have made great strides but we are not skilled in public engagement as scientists. We must come up with research questions that are relevant to the community and engage with funders who have their own agendas to prioritise issues affecting our communities.’
Words: MaryAnn Francis
Photographs: Sethu Dlamini