Long before South Africa was hit by Covid-19, youth living with HIV identified stigma as one of the major challenges they face every day. In my ongoing qualitative research on this topic with adolescents between the ages of 14 and 24, participants express disappointment in the slow progress society has made in addressing HIV-related stigma and ongoing ignorance that exists concerning the modes of HIV transmission.
One of the participants told me that “addressing this ignorance is key to unlocking HIV-stigma related challenges”. Overcoming stigma is critical to tackle issues such as lack of access to sexual reproductive health services, removing barriers to taking one’s HIV medication, and improving HIV care retention.
The outbreak of the novel coronavirus, and the resultant nationwide lockdowns, have, if anything, made the plight of youth living with HIV worse. While adolescents worldwide have so far for the most part been spared from severe Covid-19 symptoms, we do not know yet whether this holds true for those living with HIV. One issue is that many teenagers and young adults struggle to take their antiretroviral therapy (ART) medication consistently to ensure viral suppression, that is, keeping the presence of the HIV virus in the body to undetectable levels. A lack of HIV viral suppression means that the immune system is seriously compromised, and thus more vulnerable to the negative health effects of Covid-19.
According to a 2014 systematic review, ART adherence among adolescents and young adults is 62,3% globally. A systematic review focused on South Africa concludes that, in 2013, an estimated 867,283 adolescents 15 to 24 years old were living with HIV, but only 14% of them accessed antiretroviral therapy. The number of those who were virally suppressed was even lower, estimated at 10%, because a significant number of those who did access therapy discontinued their treatment. As confirmed by a 2020 study, in South Africa HIV-related stigma plays a significant role, preventing youth from going to clinics to access treatment.
Shifting health priorities
Since the early days of the pandemic, the South African government has moved swiftly to contain the spread of the infection, through lockdowns and social distancing. This however has had the unfortunate side effect of shifting the focus away from other chronic diseases such as HIV or tuberculosis.
Stay-at-home messages may have had unexpected negative consequences for youth living with HIV. In my research, adolescents have emphasised that places such as home can be sources of stigma. One participant noted that “one’s family plays a role in making a person feel judged, especially being the only one in your family who has HIV”. Increased challenges at home are compounded by reduced opportunities for meeting with other peers in the same situation due to restrictions. Teenagers and young adults are thus losing an important source of emotional support.
A significant change in how patients are treated in clinics is evident. A youth had already described the service received before Covid-19 as “insensitive, judgmental, lacking compassion and empathy”. The necessary implementation of social distancing seem to have made these issues worse.
What I have observed in my research is that teenagers and young adults go to clinics in desperate need of support and care, but instead are often confronted with little attention, long queues, and are sometimes turned away due to daily limits in the number of patients attended to.
What needs to be done?
The main problem is that there are no targeted healthcare interventions designed specifically to meet the needs of adolescents living with HIV. The South African government should design tailored services to meet the needs of youth and reduce the stigma experienced at many clinics. This means that Covid-19 guidelines need to be adapted to this specific group, as they are not working well in their current form.
There is also an urgent need to use digital communications in the provision of health services. We have recently seen an increase in virtual communication through videoconferencing and virtual meetings in education and professional work, but such technology needs to be incorporated in healthcare for young people as well. Virtual group meetings may be one way of providing much needed emotional peer support. Telemedicine, the provision of medical consultations and other services via telephone or electronic communications, should play an important role, but the old text message between patient and healthcare provider may also serve as a useful tool to deliver support to young people.
Civil society, political and business leaders in South Africa and around the world can help by emphasising in their public messages that other diseases, such as HIV, need to be prioritised alongside Covid-19. Such messages can be targeted at the young and vulnerable living with HIV, so that they are encouraged to continue their treatment.
Covid-19 messaging from government and other public institutions should be tailored to multiple audiences, and needs to include the voices of the youth affected by HIV. This is critical for behavioural change. To be effective, Covid-19 messages directed at teenagers and young adults with HIV need to speak to their health priorities and psychological, social and economic challenges.
Dr Millicent Atujuna is a social behavioural scientist and head of the social behavioural division at the Desmond Tutu HIV Foundation.
This piece is written with other teenagers who have worked with Dr Atujuna over the years and wish to remain anonymous. Supported by Chevron South Africa, these adolescents have started working on a campaign to fight stigma, currently under development.
The views expressed in this article are those of the author and do not necessarily reflect Corona Times' editorial stance, or the position of any institution or association.