Difficulty in balancing work commitments and clinic appointments, diverting resources towards substance use, and covering other basic household needs over ART-related costs negatively affected the ability of people living with HIV to access or adhere to ART, South African researchers report in the journal AIDS Research and Therapy.
South Africa is home to the world’s largest HIV epidemic, with approximately 8.2 million people living with HIV. Despite adopting universal test and treat guidelines in 2016, clinic records showed that only 67% were accessing antiretroviral therapy (ART) in 2021.
Approximately 55% of the population lives below the poverty line, with 14% of South Africans living in informal settlements. South Africa has been ranked the most unequal country in the world in terms of income disparity.
Despite access to free ART through the national healthcare system, significant barriers remain for lower income families, especially in the form of transport costs to attend clinic visits as well as food insecurity, which directly impacts upon ART adherence and the management of side effects.
In a qualitative sub-study of HPTN 071 (PopART) study, Abenathi Mcinziba from Stellenbosch University and colleagues aimed to gain a deeper understanding of how managing household income interacted with ART access and adherence in a low-income community in the Western Cape province.
The sample consisted of thirteen households with 21 people living with HIV, ranging in age from 18 to 70 (the median age was 35). Fifteen participants reported good ART adherence, with an occasional missed dose; six reported that they were not consistently accessing or taking ART. Most of the people living with HIV were unemployed at the time of the interviews, which took place between 2016 and 2018. Only households in the intervention arms of the PopART study were included – for both these arms, people living with HIV received an HIV combination prevention package at the household level (education, testing and referral to care), with ART provided at government clinics.
Eight families lived in basic government housing, known as Reconstruction and Development or RDP houses. Some rented out their backyard spaces and there were three other families in the study living in structures made from zinc and wood in these kind of backyard spaces. The remaining two families lived in informal settlements in the neighbourhood, which has high levels of unemployment, illiteracy, crime, and poor sanitation services. On average, each household had four occupants, with varying familial links.
The average monthly income of the 13 households was approximately R3000 ($160). Sources of income included part-time work, street vendor businesses, government grants, support from relatives, renting out backyard spaces and taking loans from informal lenders. In addition to meeting basic needs, additional expenses included contributions to burial policies and informal savings schemes, recreational expenses (often linked to substances, such as alcohol) and HIV care-related expenses, such as transport expenses or those related to managing side effects, such as buying painkillers.
There were three main ways of managing income: individually; by paying for certain household expenses or regularly contributing a proportion of income to the household; and an unstructured or needs-based approach. Whereas the regular pooled contributions were more beneficial for the person living with HIV (both in terms of accessing medication and adherence), the individual approach tended to come with drawbacks.
There was diversity in how management of household income impacted ART access and adherence. This was reflective of changes in employment status, household composition, and social support structures. While each household had unique challenges, ways of managing limited income and necessities that helped keep the person living with HIV stay well, three themes emerged regarding navigating these priorities.
In many of the households, income was used to buy both illegal and legal substances. These participants often spoke about how this negatively impacted ART access and adherence. Both Dayson and his father were living with HIV and tended to use an individual approach to managing their incomes. He had this to say:
“When you start using [illicit] drugs then you don’t care about anything. Every [bit of] money you get you spend it on drugs and ignore everything, even your own health, like you ignore taking [ART] medication.”
In some instances, substances were used was a way of dealing with the difficulties of living with HIV, but this also led to challenges with medication. Zonke used alcohol to avoid dealing with starting ART:
“We just buy alcohol and drink. I will drink and get drunk now and tomorrow the stress [of living with HIV] is still there, you see? I’m getting sicker, but I haven’t taken treatment yet.” (
Nolubabalo’s estranged husband tried to make up for his lack of adherence:
“He would drink alcohol the whole weekend and ignore taking his medication. When he is sober, he would take all the doses he missed over the weekend all at once. But that’s overdose because he’s taking a lot [of pills] in a short time frame.”
Sharing resources to help the person living with HIV
In some households which took a pooled approach to managing income, families were able to support treatment adherence by putting money aside for the needs of the person living with HIV, usually for food and medications to alleviate side effects from taking the ART used at the time. (Efavirenz and protease inhibitors were the mainstays of first-line and second-line treatment respectively when data were collected).
For instance, Lawrance and Nontobeko (both living with HIV) would take money from their government childcare grant to buy painkillers to help Lawrance manage his headaches:
“I get headaches from taking ARVs. Every day, I must drink two Grandpas [paracetamol] and pain tablets because without them, I won’t come right [reported hallucinations]. So we take some of the money from the kids’ grant and buy these pills from the chemist.”
In some instances, the health needs of the person living with HIV needed to be prioritised above other needs, as in the case of Nomfundiso:
“Whenever I ate, I’d just vomit and I lost energy. My brother was working at the supermarket back then. He insisted on giving me R200 [$11] to go to the [private] doctor. The doctor gave me medication to regain strength and referred me to the [local public] clinic.”
For those who were informally employed or earning minimum wages, there was occasionally tension between working and attending health appointments. For Thobela, who stayed with his two younger adult brothers and supported family in another province, his temporary placements as a construction worker made it challenging to consistently attend clinic appointments.
“I was in the Eastern Cape for six months. I don’t remember the year, but I think it was 2014. I took them [ARVs] very badly [infrequently] because when I came back, I quickly got a job. I didn’t have time for the clinic. At some point, I took my clinic card and sent children [to fetch his tablets] but they said [at the clinic] I must go there myself.”
In these instances, there was an occasional need to choose between earning income from work, or maintaining the consistency required to manage HIV.
Some participants also indicated that, although ART was freely available, there were often additional health-related costs that became difficult to manage. Bongiwe spoke about the challenges of meeting her daughter’s multiple needs in addition to simply ensuring that she remained adherent to ART:
“We went to fetch Linda’s treatment [from the clinic]. Her medication goes hand-in-hand with aqueous cream [body lotion] and tubes for her skin rash. The problem with the clinic is that they run out of stock and they tell us to go buy it at the chemist. How am I supposed to get money to buy that lotion? It’s so expensive. I don’t have money. The money is finished [spent] on food and on her other school stuff.”
The authors say that adherence support programmes should address how people can mitigate income fluctuation and manage complex trade-offs in households. In addition:
“Future HIV/ART programmes could implement treatment delivery or consider ‘after hours’ clinics for patients who are unable to attend care due to work commitments during the day.”
Mcinziba A et al. Managing household income and antiretroviral therapy adherence among people living with HIV in a low-income setting: qualitative data from the HPTN 071 (PopART) trial in South Africa. AIDS Research and Therapy, 20(54), 2023.