HIV in Umkhanyakude: Impressive numbers, but living with HIV difficult amid socio-economic hardship

HIV in Umkhanyakude: Impressive numbers, but living with HIV difficult amid socio-economic hardshipSiphesihle Nhlangethwa (20) is caregiver to her two younger siblings aged 12 and 16. She and her 16-year-old sibling now have babies and are breastfeeding. With Spotlight's visit, it has been two days since the family has eaten. PHOTO: Sandile Duma/Spotlight
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The KwaZulu-Natal government aims to test about 3.2m people living in KwaZulu-Natal for HIV in this financial year. On World AIDS Day 2020 (December 1st), Premier Sihle Zikhalala said so far they have only tested 60.8% or 1.9m people in the province due to lockdown restrictions that hampered testing efforts.

But Zikhalala, who addressed a crowd during a World AIDS Day event in Manguzi in the Umkhanyakude District in the North of the province, has big plans to get the HIV programme back on track.

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“This is also the moment for us to seize the day,” he said, “and regain our lost ground in the fight against the TB and AIDS epidemics, which was slowed down because of a number of factors including the disruptions that were brought about by the hard lockdown which sought to arrest the COVID-19 outbreaks.”

Umkhanyakude: The numbers

The rural Umkhanyakude District is among the poorest districts in the province. Acknowledging this, Zikhalala said the district’s profile shows it is a “poverty-stricken rural municipality with high unemployment figures, high occurrence of malnutrition in children younger than 5 years and many people here live below the poverty line”.

The rural Umkhanyakude District in the north of KwaZulu-Natal, is among the poorest districts in the province. PHOTO: Sandile Duma/Spotlight

According to figures cited by Zikhalala, twenty to thirty percent of adults are HIV positive, and the HIV prevalence rate is at 41.1%, which is higher than both the provincial and national average. (He did not specify which age groups were included in the adult percentage and the quoted prevalence figures.)

Zikhalala referred to the latest statistics from the province’s health department, which shows the district did well on the UNAIDS targets of diagnosing 90% of people living with HIV, having 90% of those diagnosed on treatment, and keeping 90% of those on treatment virally suppressed. By September this year, the district recorded what Zikhalala called “exceptional” figures, showing it is at 94%-93%-90%.

The premier, however, noted that the district will have to improve on efforts to prevent mother-to-child transmission as the transmission rate in the district is currently at 1.5%.

Recent district-level HIV estimates from the Naomi model that indicate that by March this year, HIV prevalence in the district was at 31.2% for people between 15 and 49 years. It shows 124 400 people were living with HIV in the district while 105 700 people were receiving treatment.

According to Zikhalala, the province remains the HIV epicentre in South Africa with more than two million people living with HIV and 1.48 million on treatment by September this year. He also said the province’s strategy on HIV prevention is “anchored on the pillar of addressing women empowerment to better fight the social drivers of HIV, TB, and STIs (sexually transmitted infections)”.

But at least one community in the Jozini area in the Umkhanyakude District says they are battling to survive and keep healthy without government support.

Nokuthula Dladla, site manager at Siyaphambili Qondile.
This garden is another initiative Siyaphambili Qondile started to help feed poor households in the Jozini area. PHOTO: Sandile Duma/Spotlight

Jozini needs help

A month before the premier’s address in the Umkhanyakude District, Spotlight visited Jozini to see first-hand the impact of the pandemic on HIV and TB services.

The site manager for the organisation Siyaphambili Qondile, Nokuthula Dladla, tells Spotlight the organisation runs HIV/AIDS intervention and other social programs in more than five wards in the district.

“We teach safe home-based care practices and counselling,” Dladla says. “We also encourage adherence to ART treatment through adherence therapy, we also offer counselling services and do condom distribution. But,” she says, “fulfilling this social call is often difficult, now even more than ever, as COVID-19 and lockdown restrictions created more complexities to the harsh living, and social conditions in rural areas like Umkhanyakude. Jozini needs help,” Dladla pleaded.

Findings of an observational cohort study by the Africa Health Research Institute (AHRI) on the impact of lockdown on primary healthcare in the Umkhanyakude District, showed the number of clinic visits for adults remained the same between 27 January and 30 June despite lockdown restrictions. Only clinic visits for child health services showed a concerning decrease.

‘Unexpected resilience?’

According to an AHRI statement “46 523 people made 89 476 clinic visits” during this period and most of them were women and girls and the visits were mostly to access ART follow-up care (43% of all visits). “This is a positive finding for Umkhanyakude, where around one in five adult men and two in five adult women are living with HIV. The rate of new tuberculosis infections in the area is one of the highest in the world, and there is a large burden of diseases such as diabetes and hypertension. It is therefore crucial that residents have access to chronic medication and care,” the statement reads.

Dr Mark Siedner, lead author of the research, said the findings “point to an unexpected resilience in the rural primary healthcare system for access to chronic and essential basic health services during the Level 5, 4 and 3 stages of lockdown”.

But in other respects, such as high levels of poverty and unemployment, the communities in and around the Jozini area are less resilient.

One resident, *Thandiwe (36) has been living with HIV for 12 years. She tells Spotlight she has been on treatment since 2008, but getting her treatment is a struggle since it is a long way to her nearest clinic in Gedleza. Thandiwe is unemployed and lives with her mother (62), two sisters and her four children. Her mother is also living with HIV.

Simphiwe Buthelezi (20) takes care of two siblings and often has to rely on organisations like Siyaphambili Qondile for food parcels. PHOTO: Sandile Duma/Spotlight
A dwelling where one of Jozini’s many child-headed households live. PHOTO: Sandile Duma/Spotlight

Trying to survive

Thandiwe tells Spotlight a month ago she and her mother stopped taking their treatment because there was no food. She has stopped treatment various times before, mostly because there was nothing to eat.

“Living with HIV, unemployed, with children in a rural area like Jozini is heavy,” says Thandiwe. She joined a support group for people living with HIV at the Siyaphambili Qondile in 2009, where they can get food parcels and porridge to take treatment. “But there is only so much that food parcels and donations can do,” she says. “Our government has forgotten about the well-being of people living in rural areas. We have no employment opportunities and we receive no help from social development or the municipality here.”

Thandiwe says being part of a support group helps her to stay positive, but sometimes it feels as if all her efforts are futile. I have a vegetable garden in my homestead, which sustains or at least prevent the family from starving. But due to the ongoing water interruptions which have been going on for years, our crops suffer and often die off,” she says. They have to fetch water about half an hour away, meaning they are walking for an hour with a wheelbarrow for ‘clean’ water.

Every Monday, Thandiwe says, they go to the Siyaphambili centre where the support group meets. “It’s become so much more than a support group,” she says. “It’s now family. We are able to share experiences, and importantly, ways of surviving HIV while living in an impoverished community.  Because that’s all we’re trying to do – survive.”

Dladla tells Spotlight HIV remains a harsh reality in these impoverished communities as the spread of the disease is driven by poverty and desperation. She says another big concern is the many child-headed households in the area. “There is no protection, there is no family unit or stability to instil values or to teach proper health habits to the children leaving them exposed,” says Dladla.

According to the District Health Plan for 2018/19, there were six ward-based outreach teams in the Jozini area by 2016/17. The area has 18 clinics, one community health centre and two district hospitals. The area around Hlabisa, is flagged as “relatively under-serviced” and the health authorities acknowledge in the plan that the ideal of having a clinic within a 5km radius has not been achieved. Instead there are mobile clinics, but the district health authorities acknowledge that the “frequency of visits is not adequate”.

Meanwhile, the DHP shows over 70% of all deaths in the district is due to HIV and non-communicable diseases. There are 358 community healthcare workers working in the district.

Many of the poor households in the Jozini area depend on this water source for daily use. PHOTO: Sandile Duma/Spotlight

Plans to get the HIV programme back on track

When Zikalala took the podium on World AIDS Day, he praised the district for its excellent numbers and announced plans to get the HIV programme back on track. He mentioned the importance of the social drivers of the epidemic, but for this, offered no immediate plans. Instead, he said the provincial authorities will, through “our trusted and hardworking Community Health Workers”, track and trace people who were lost to treatment during lockdown. Community healthcare workers have been assigned a target to each find and return to care a minimum of four people who were lost to treatment.

Provincial health spokesperson, Agiza Hlongwane was quoted in The Mercury newspaper as having said that 600 000 people living with HIV in the province were lost to treatment during lockdown. (Spotlight has not been able to independently confirm this remarkably high number.)

Zikalala in his World AIDS Day address said Health MEC Nomagugu Simelane-Zulu is “leading [the] province in implementing targeted HIV index testing (testing the close contacts of people living with HIV) to improve HIV positivity yield and initiate all clients testing HIV positive within seven days”. “In addition, we are advancing community testing as an integral part of COVID-19 screening and testing. We are also using the pre-ART lists to trace positive patients who were not initiated on ART,” he said.

The organisation Siyaphambili Qondile, runs HIV/AIDS intervention and other social programs in more than five wards in the Umkhanyakude District. PHOTO: Sandile Duma/Spotlight

Great emotional toll

But community health workers like Dladla says in her organisation they have to deal with situations outside their scope of work and capacity. Abuse, orphan care, disability, and gender-based violence are among the main issues they encounter.

“We had to form support groups to [address] the community’s problems, and we had to [start] a community garden to solve hunger issues in our community,” Dladla says. She says many of these issues are unrelated to their main purpose, and although they are willing to help, their efforts are limited. They also lost the sponsor that fund their projects because of the economic challenges arising from the pandemic. Before they lost this support, they helped poor households with food parcels, safety care packages and ran a community garden which supplemented the food parcel program. With more people now relying on the garden, it is difficult to meet the rising needs, she says.

The organisation caters for over 375 families, which total over 943 individuals in five wards. Dladla says they gather what they can and try to help those most in need, with little to no support from the municipality.

Spotlight approached the district health authorities and  the provincial departments of health and of social development for comment, but besides acknowledging receipt of our communication, no responses with comments were received by time of publication.

Dladla says community care workers see so much suffering in the community and at times they end up helping people from their own homes as some situations are “too dire to ignore or delay” especially in the child-headed households. “It takes an emotional toll on us to see such suffering and helplessness while the government does nothing for its people.” 

Old demons and bad decisions

Section27 field researcher, Patrick Mdletshe tells Spotlight that as a country, we need to have the real conversation about how we sustain people while they are on treatment. Mdletshe recalls a period when nutritional supplements were part of the treatment programme for very sick patients, but in many parts of the country, also KwaZulu-Natal, this has been discontinued. According to him, government took this decision without consulting civil society partners.

“So, the impact we now see in places like Jozini is not just because of COVID-19. It is our old demons and bad decisions that are coming back to haunt us. We must find more sustainable ways to support people living with HIV. People cannot take treatment on empty stomachs. And government cannot just hand out food parcels far from where people live. We need a comprehensive solution to address the social issues,” he says.

Mdletshe says the services must be brought closer to the people. In rural areas like Jozini where most residents are unemployed, they cannot pay R70 to drive to Manguzi to fetch a food parcel, he says.

“We cannot have a blanket approach to the treatment programme. The government is obsessed with numbers,” Mdletshe says, referring to Zikhalala’s praise for KZN’s progress on the 90-90-90 targets. “But we forget that we are talking about people. The real fight is in how we will sustain these numbers.”

Nelson Dlamini, spokesperson for the South African National AIDS Council (SANAC), agrees and says social determinants such as poverty and lack of documentation impacts treatment adherence. “People cannot take treatment without food. People are exposed to harsh realities of poverty, suffer psycho-social stress and social exclusion,” he explains. “It (lack of documents) affects children’s access to education or [leads to] school drop-out. Lack of documentation affects reliable data to inform policy, planning, and decision-making. Also having to travel long distances impedes people’s access to social services and treatment, travelling long distances discourages health seeking behaviour,” Dlamini says.

*Not her real name

Note: A representative of SECTION27 is quoted in this article. Spotlight is published by SECTION27 and the Treatment Action Campaign, but is editorially independent – an independence that the editors guard jealously. Spotlight is a member of the South African Press Council.

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