People living with HIV default on ARV treatments due to hunger, increasing transport costs to collect medicine

An HIV/Aids patient with antiretroviral medication. . (Photo: Gallo Images / Media24)

By Naledi Sikhakhane

19 Jan 2023

Patients are battling to contend with the rising cost of living in South Africa, with many forced to forego essential treatment.

Activists, health practitioners, and organisations that support people living with the human immunodeficiency virus (HIV) say there is a rise in people defaulting on their antiretroviral treatment due to hunger.

The high cost of living and the high unemployment rate affects the quality of life for many South Africans. Not only are people struggling to afford healthy food, but millions also struggle to have regular meals. This particularly affects people who are on chronic medication as they can’t take their medicine on an empty stomach, creating a vicious cycle of ill health.

Thulina Moukangwe, 29, lives openly with HIV and is an activist in the Treatment Action Campaign (TAC). She says multiple factors lead to patients defaulting on their medicines including poor mental health, lack of food and ill-treatment of patients in healthcare facilities.

She says it is particularly hard for the unemployed. “There are no jobs and people are hungry. This will result in more people defaulting.

“When we check at the clinics there are a lot of defaulters and when we try to have a conversation with the relevant departments we are told people receive the (R480) Child Support Grant and the R350 (Social Relief of Distress) grant.”

But people who lost their jobs in 2020 and received UIF payouts do not qualify to receive the R350 grant, she said.

“And some don’t have children.”

Nomso Banjelo, 33 from KwaDabeka South of Durban receives the Social Relief of Distress Grant as her only source of income. After Bank charges and R36 taxi fare, she is left with R300 for food for the month, she says sometimes she skips taking her antiretroviral medication as it causes stomach cramps, nausea, and diarrhoea if taken while hungry.

Banjelo has struggled to secure a job for years, she used to volunteer in HIV campaigns and community work but says the transport fees have increased so much that it’s become hard to take part.

“I ask my neighbours for food if I haven’t had some in a couple of days. The food I buy when I get the R350 lasts for two weeks then I try to make a plan until the next time. People don’t default because they want to, they default because of being hungry,” said Banjelo.

South Africa has 8.5 million people living with HIV (PLHIV) — more than any other country — as well as one of the world’s highest HIV prevalence rates. The country has been struggling to meet its 90-90-90 targets (the strategy for 90% of people living with HIV to know their HIV status, 90% of people who know their status to be on ARVs, and 90% of all patients receiving antiretroviral therapy to be virally suppressed) and new cases are still high, particularly amongst young people.

There is a concern about the pace of scale-up of antiretroviral treatment.

Chief Executive Officer of the Southern African HIV Clinicians Society, Juliet Houghton said the danger of people having their treatment regime interrupted is drug resistance.

An HIV/Aids patient with antiretroviral medication.
. (Photo: Gallo Images / Media24)

“If somebody is taking HIV medication and they are interrupted because they can’t afford to go to the clinic, they run the risk of the virus becoming resistant to the medication they are taking. The new drug is more robust in not developing resistance but that is not the point, the point is you risk having a virus that medication doesn’t work with. If I have a resistant virus and I happen to transmit it to someone else they get the drug-resistant one and not the original one. You may be interrupted through no fault of your own such as during Covid lockdowns, people got interrupted,” said Houghton.

Read in Daily Maverick: “Desperate children are eating cow dung to line their stomach for lifesaving medicine, say researchers”

Long-time nurse Qaqamba Mlambo from Pietermaritzburg, KwaZulu-Natal, says food is one of the major factors for defaulting but it’s amongst other psychosocial issues.

“Patients have cited defaulting treatment due to lack of food or not enough food. But with in-depth counselling, you find that the root cause is treatment readiness on the part of the patient, or disclosure to family members, as when preparing patients for ART initiation (initiation of antiretroviral therapy) there is an assessment that needs to be done and advice on other food sources is given, i.e. imbuya (wild spinach) which grows freely amongst other food sources is done,” said Mlambo

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She suggests food gardens to her patients as one of the ways to alleviate hunger.

“There are food sources which are not expensive and readily available like imbuya wild green vegetable source. Patients are also educated on one garden, one home. Even for a client who resides in a high-rise apartment, they can use a car tyre to plant vegetables in their homes, to ensure food security,” Mlambo explained

Provincial chairperson of the Treatment Action Campaign (TAC) in Gauteng and a human rights activist in various structures, Monwabisi Mbasa says there are challenges securing food for the patients most affected.

He said although qualifying patients were registered to receive food parcels through the Department of Social Development, those food parcels were distributed by ward councillors and the parcels sometimes did not reach their intended recipients.

“The sad part is that they are sold. Some are distributed through the party political patronage system and ultimately never reach the intended beneficiaries. Consequentially people living with different chronic diseases default in their medication,” said Mbasa

He said PLHIV patients from poverty-stricken families and child-headed homes find it extremely difficult to adhere to medication.

“We are still working on data to quantify the number of people living with HIV, who are significantly negatively impacted by extreme conditions of poverty in areas like Alexandra, Ivory Park, and others, where people live in squalor.”

The TAC in partnership with Heala, Healthy Living Alliance conducts workshops to teach communities about eating healthily and living healthy lifestyles. These include awareness programmes about food that is not healthy.

Mbasa notes that social grants are needed to cover a plethora of household needs, ranging from school stationary and school uniforms, water and electricity bills, burial schemes, and purchasing of food and other essentials. It made it difficult for people to afford healthy food.

Vuyisile Dayile from the South African National Aids Council (Sanac) said in the Eastern Cape the rate of default is at 38% to 40% “which is exceptionally high but has been consistently hovering around those numbers”.

Dayile said poverty is at the root of issues PLHIV have to contend with in the province.

“In one of the findings from a visit conducted in Ntabankulu Alfred Nzo district, we learnt that members did not prefer to get their medicine from the (nearby) village facility where they are known, they prefer to go to the facility in town. This becomes a problem when they don’t have funds for transport and they end up defaulting their treatment,” said Dayile

According to Dayile, when Sanac visited the Addo Sarah Baartman district farming area, the PLHIV sector members who work on farms said during the harvest season they are not permitted to go and collect treatment at the clinic.

“So, they have to choose between employment and taking medication. Due to high rate of poverty and unemployment they will choose employment and default treatment,” said Dayile

Mbasa echoed Mbasa’s sentiments saying the challenges are intertwined and result in high default rates.

“It’s an ongoing struggle. Hence we are experiencing a lot of default rates in working-class communities. High levels of alcohol consumption, liquor abuse, and other related illicit drugs become a major problem. All these factors alongside high levels of poverty undermine prospects of living a healthy lifestyle or consuming nutritious food,” said the TAC’s Mbasa MC/DM

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