Illegal experiment scandal rocks Free State health

By Anso Thom and Marcus Low

CEO of Regenesis, Dr Wian Stander
CEO of Regenesis, Dr Wian Stander

The Medicines Control Council (MCC) this week suspended what appears to be unlawful stem cell experimentation at Pelonomi, a state hospital in Bloemfontein. At the same time the Free State Department of Health has cancelled its contract with the stem cell company, ReGenesis Biotechnologies following a list of questions sent by Spotlight in connection with the involvement of controversial Health MEC Dr Benny Malakoane.

Until a week ago the Free State department of Health was set to spend tens of millions of Rands on unproven and potentially dangerous stem cell therapies for the treatment of musco-skeletetal diseases in its orthopaedic knee patients at two hospitals. The treatment was run by a private company called ReGenesis Biotechnologies and has started on June 1.

A service level contract (seen by Spotlight) between the Free State Department of Health and ReGenesis Biotechnologies indicated that the service would be provided in Pelonomi hospital in Bloemfontein and Boitumelo hospital in Kroonstad. The department would pay R30 000 per client, with a guaranteed supply of one thousand patients per year. This adds up to R30-million per year and R90-million over the three years of the contract.

Spotlight sent the MEC’s office a number of questions over a week ago. We delayed going to print as Malakoane’s spokesperson Mondli Mvambi requested that he be given time to investigate. On Thursday this week Mvambi sent an email stating the following: “Our response to all your questions is that after careful consideration, the Free State Department of Health has decided to cancel the ReGenesis Biotechnologies contract with immediate effect. We will not comment any further on this contract as it is now sub judice.”

Mvambi would not explain why the case was now sub judice.

Questions Spotlight sent to ReGenesis went unanswered, despite an initial request from ReGenesis CEO and the doctor carrying out the procedure Wian Stander that the questions be e-mailed to “Chevonne”. Stander is also listed as the “Owner and Integrative Medical Practitioner” of the Slimming Clinic in Bryanston. According to the website of the Slimming Clinic he has done talks on Holistic Medicine and Healthy Ageing in South Africa over the past few years.

MCC investigation

MCC Chairperson Professor Helen Rees confirmed to Spotlight that inspectors had been to the Pelonomi site last Friday and again on Monday.

“Our concern was that the service level agreement made reference to medicines, injections and therapeutic research,” said Rees.

She said the informed consent documents referred to the patients giving permission for stem cell therapy, permission for stem cells to be removed, concentrated and re-injected and for their stem cells to be given to another person.”

“This is not a proven therapy and we were concerned about the reference to research as well as the fact that stem cells will be given to other persons. This led to questions whether this was in fact a clinical trial and if it was, the MCC has not given permission for it to be conducted,” said Rees, adding that their first priority was the safety of patients. Medical research that has not been approved by the MCC is unlawful in South Africa.

“We have asked Dr Stander to stop enrolling patients and now await a response to the information we have requested from him,” Rees said. She said that “injecting anything into a patient comes with risk as you always run the risk of introducing infection.

The contract

The contract seen by Spotlight states that ReGenesis “shall provide the department with the clinical governance and treatment protocols at the onset of the service on 1 June 2016.”

The contract also states that the Free State Department of Health and ReGenesis would establish a project management committee consisting of the MEC of Health as Chairperson as well as the CEOs of Pelonomi and Boitumelo hospitals, COOs and representatives from ReGenesis. It reveals that the committee shall meet monthly for the duration of the Agreement to “track progress, resolve pertinent matters to the effective and seamless treatment of patients”.

The contract states that this agreement would run until 30 June 2019 with the department in essence guaranteeing 1 000 patients per annum, paying ReGenesis R30 000 for each treatment. There is provision in the contract for ReGenesis to motivate for treatment in excess R30 000. The contract also stipulates an upfront payment of a percentage of the cost of the three year contract, which also makes provision for a price increase after the first year. The Department also undertakes in the contract to supply ReGenesis with all consumables required.

A source close to the MCC investigation confirmed that they have been unable to find evidence of a tender. However, Carte Blanche claimed last that a tender had been published in April seeking a service provider who can provide “cell based stem cell regenerative medicine and therapeutic research services”. Head of Department Dr David Motau confirmed to Carte Blanche that the contract had been cancelled.

Stem cell therapy for knee problems

Substantial research is being done around the world into various stem cell therapies  including for the treatment of arthritis and osteoarthritis of the knee. A search of the literature however shows no evidence from phase III trials indicating that any form of stem cell therapy is safe and effective for the treatment of knee problems. With few exceptions, medical treatments are only approved for use in humans once compelling evidence is available from phase III trials.

In the case of stem cell therapies caution is particularly important given some reported cases of tumour formation associated with such treatments. In a recent letter in the New England Journal of Medicine doctors warn against the risks associated with unproven stem cell treatments. Outlining a specific case, they write: “This case and others in which tumors have  developed in the context of stem-cell tourism (a trend in which patients travel for the purpose of obtaining therapy) illustrate an extremely serious complication of introducing proliferating stem cells into patients.”

The United States Food and Drug Administration has warned consumers against using unregistered stem cell therapies. They have also sent warning letters to companies providing certain kinds of stem cell therapies and in 2012 won a court case against the company Regenerative Sciences in which the court affirmed the FDA’s authority to regulate stem cell therapies making use of a patient’s own cells.

Spotlight will continue to run a series of articles on this investigation www.spotlightnsp.co.za

When a good idea becomes good news: adherence clubs in the Free State

By Ufrieda Ho

A simple well-managed idea is not only easing pressure on the Free State health care system and making HIV-positive patients’ lives easier – it also seems to be bringing down mortality rates amongst those with multi-drug resistant tuberculosis (MDR-TB).

Médecins Sans Frontières’ HIV adherence clubs have grown, in under two years, to include 11 000 member in the Mangaung district.

The idea was to create clubs of no more than 30 stable HIV patients (those with a viral load below 40) who meet every two months for less than an hour to collect their ARVs. Is this correct? Doesn’t undetectable viral load normally mean under 50, or is there a new test?

Their medicines are pre-packed by a trained facilitator, so there’s no risk of queuing for an entire day only to be told there are no drugs or that there are too many people to be helped.

At the club meetings, patients are weighed, given TB screening and are given a general health quiz. They can discuss issues among themselves, and facilitators also have the opportunity to raise any specific matters, like a change in medicine packaging.

Members fetch their medicine and leave the clinic before the hour’s up. It means they can get on with their day with minimal disruption.

Once a year they undergo a blood test at a clinic. This test is scheduled by their club.

“It means there 11 000 people who are not clogging up the queues in clinic and hospitals. The patients are properly management and it’s proving to be a system that’s working,” says Trudie Harrison, a coordinator at MosaMaria, the public benefit organisation affiliated to the Anglican Church that manages and facilitates the adherence clubs in the district.

“The aim now is to roll out to reach 21 clinics across the province in the next three years.”

The clubs are funded by Global Fund and Right to Care. Their support has translated into the purchase of four Wendy houses erected on clinic property. These structures serve as club meetings rooms and can also be used as extra facilities by the clinic.

“At some of our facilities we do two sessions a day. Our staff is also trained and salaried. They are not volunteers on a stipend and that model has been part of what’s made the clubs work.

“It also works that the club meetings happen at the clinic or hospital and not in a facility like a church hall. This removes some of the stigma that still exists around HIV/ AIDS,” says Harrison.

MosaMaria’s success with the adherence clubs has led to them partnering with the Naledi Hospice and the Hospice Palliative Care Association of South Africa, working to manage multi-drug resistant tuberculosis (MDR-TB).

The programme is aimed at reducing the rate of defaulting among MDR-TB patients and to reduce MDR-TB mortality rates.

MosaMaria has one nurse and two caregivers on the programme. They currently visit 11 patients to give them a daily injection and other medicine.

“This programme works because before, those with MDR-TB didn’t get treatment because they didn’t want to stay in hospitals. This way, the 24-month treatment can be administered by a nurse in the patient’s own home,” says Harrison.

Harrison says it’s too early to measure the success of the programme but she says that since October 2014 they have seen the mortality rate decline. It’s significant because MDR-TB patients only have a 50/50 chance of surviving.

Becoming a believer

WESTERN CAPE TAC

If it wasn’t for the TAC, Angy Peter would never have started taking ARVs.

When the fight against HIV/AIDS started, there were two teams: the believers and the non-believers. At the time, our president, Thabo Mbeki, and Minister of Health Dr Manto Shabalala Msimang were non-believers. They told many South Africans that HIV/AIDS was not a real thing and, unfortunately, many of them, like Angy, believed them.

‘I didn’t have time for ARVs. The minister was telling us that we just needed to eat beetroot and vegetables; this was someone who was educated, of course I listened to her,’ she says.

Angy was halfway there: she went to the clinic regularly for checkups but always returned home to her two litres of maas and garlic mix, which she kept in the fridge. She had accepted her status, but she was not going to take ARVs.

Angy Peter (above) shares a lighter moment while telling of her experiences with the TAC and below in one of the TAC T-shirts.

Angy first encountered the TAC when she was sitting at the clinic. ‘I remember I was patient number 15 and there was this lady who was speaking about HIV, and I was interested because I wanted to know more.’ Her first impression of this woman was that she was incredibly smart and obviously had to be someone very important to be able to stand up in front of group of people and speak so frankly and accurately about HIV.

Angy enjoyed attending support groups, she never missed a single session. But when the question of ARVs came up, she would just glaze over the topic. She had her garlic mix and she was making a memory box of her life. In her mind, she was set, there wasn’t anything else that she needed.

One of her friends, now colleague, would often bring up the topic of ARVs. For months she would say to me, ‘Come on Angy, just try. I mean, look at me. I am taking them and I am fine.’

These conversations and her exposure to treatment literacy were eventually enough to convince Angy. She joined the believers and traded in her garlic mix for ARV treatment. Ten years later, she is a staff member at the TAC, preaching the gospel of ARVs to hundreds of people everyday.

Angy still remembers the first march she attended. ‘I was wearing the red HIV T-shirt and it was the biggest march I had ever seen,’ she says. On that day Angy also discovered that normal working hours were not a thing. Whenever there was an emergency, the TAC had to be there. Towards the end of their march, they heard that xenophobic attacks had broken out and that hundreds of foreign nationals were being displaced. The TAC ended the march and headed straight to a community hall, where they jumped right in to feed the displaced and ensure that they had a place to sleep. ‘That was when I realised that money was no more important than a person’s life,’ she says.

Angy was earning a stipend of R800. It was not much but that didn’t matter to her: she was making a difference to people’s lives, she had a passion for it, and that was what mattered the most.

Over the years, Angy has come to appreciate the transparency and honesty of leadership within the organisation. She recalls a day when they received some money from a donor. She and a colleague were called to the boardroom and had an open discussion about where the money came from and what was going to be done with it. ‘That was the first time I ever saw money handled transparently,’ she said.

Angy also enjoys the fact that she is free to go about her work without being constantly monitored. The openness allows people to work to their fullest capabilities; the staff come to work, because they want to be there.

The TAC has MaMatwa’s back

was about 11 pm on a Sunday night when MaMatwa heard a knock on her door. She asked who it was and the person responded by saying they had come to buy sheep’s heads. ‘I was surprised, because everybody knows that I only sell the heads during the week. So I asked myself who would come on a Sunday,’ says MaMatwa.

A few hours later, she was a woken by a big bang and within seconds the bed she was sharing with her daughter and granddaughter was engulfed in flames. There was smoke everywhere and her bedroom was burning. MaMatwa managed to get off the bed, she tried to reach her for her granddaughter but she was severely burned, her skin was falling off and MaMatwa could not get a firm hold of her. She ran towards the door, but struggled to unlock it. She turned to the window next to the door and shouted for help. Her neighbour’s children stood staring at her, doing nothing, while MaMatwa pleaded for help from inside the burning house.

Eventually, people in the neighbourhood heard the screams and came to help. They also were unable to unlock the door and ended up breaking it down. MaMatwa and her two other children, who slept in a different room, managed to survive. But her daughter and the granddaughter who were severely burned, succumbed to their injuries in hospital.

Khwezi, her neighbour’s child and a friend had thrown a petrol bomb into MaMatwa’s house, accusing her of being a witch. They believed MaMatwa had bewitched their mother and killed her.

‘When my neighbour died, they didn’t even tell me. The sent word to all the other neighbours in the street, but never said a word to me,’ says MaMatwa.

MaMatwa had always had a good relationship with her neighbour – she even had a spare key to her house in case the children came home from school before their mom. When Khwezi came to stay though, that all changed. Khwezi would never greet MaMatwa or ask for the key if he came home early. Soon the rest of the family followed suit. MaMatwa doesn’t know what changed, but she would often overhear the children saying that she had better leave since she killed their mom. ‘They never said these things to me directly, so I could not confront them,’ she says.

After the attack, MaMatwa first sought help from her community. She tried to speak to various people in her community committee, but each person had an excuse. ‘They would say they are no longer on the committee,’ she recalls. It seemed as though everybody was starting to believe she was involved in her neighbour’s death.

MaMatwa received no support from the police throughout her case. She believes the investigating officer was sympathetic to the accused and his family, even though she had been wronged. When everybody turned their backs on her, TAC members were the only people who extended a helping hand. ‘I knew the TAC existed, but I thought they only focused on health issues,’ says MaMatwa.

By definition, health is more than just a state of physical well-being, it is a combination of physical, mental and social well-being.

Over the years, the TAC has moved from focusing strictly on health issues to taking up socio-economic issues that the community of Khayelitsha is faced with. This is why TAC is a familiar name in every household and why anybody in need, like MaMatwa, can turn to the TAC for assistance.

There is a picture of MaMatwa’s daughter on the wall. It is the only picture in the lounge. Although it’s been years since the fire, the house is still empty. It is very much ‘in-between’, one cannot tell if MaMatwa is moving in or moving out. ‘It’s not easy,’ says MaMatwa.

She is still living next to the neighbours who accused her of killing their mother and her friend. They do not speak to one another, despite seeing each other every day. It was a decision of bravery that led her back to her damaged house.

‘My kids were refusing to come back,’ she says. MaMatwa’s surviving children were afraid that they would be attacked again and lose their lives.

Despite her own fears, she reassured her children and convinced them to come back to the house with her. ‘I told them, it doesn’t matter where we are, if we are to die, we will die,’ she told them. After four months of living with relatives, MaMatwa and her children returned to the house.

For months, nothing was said. The community largely ignored what happened to MaMatwa. But one day, one of the children that was involved in the attack confessed that he and Khwezi had had petrol bombs that they wanted to throw into the house. He admitted that the one he threw towards the kitchen did not go off, but Khwezi’s had landed on the bed started the blaze. Despite this confession, the prosecutor still tried to find a way for the two to be granted bail. When she heard this, MaMatwa was devastated. How could her pain, and the loss of her children go unnoticed? It seemed as though poor people could never be afforded justice. I asked them, ‘You want to give these kids bail, but will my children get bail from their graves?’

‘If it wasn’t for TAC, this case would never have gone forward, and these kids would never have been put in jail,’ says MaMatwa. After months of back and forth, Khwezi and his accomplice were sentenced to 25 years’ imprisonment. Throughout the trial, MaMatwa received support from the TAC. They accompanied her to every court appearance, and made sure all the volunteers who attended the trial were fed.

‘I am not afraid of anything anymore. Because I know that whatever comes, I will turn to the TAC and they will never turn their backs on me,’ says MaMatwa.

Bringing comfort to the community: the Thuthuzela/ TAC story

‘When I talk about civil society, I am talking about the TAC; they know the people, they are able to reach the people, and they know what will work for the Khayelitsha community and what won’t.’

‘Thuthuzela’ means to comfort. This is the first thing Genine Josias the medical coordinator at the Thuthuzela Care Centre says. The centre is many things, but first and foremost it is a place of comfort for victims of sexual abuse.

The centre is housed in a wing at the new Khayelitsha Day Hospital. Just two years old, Thuthuzela followed a similar path to the Simelela Rape Survivors Centre, which offered a one-stop facility that changed the lives of victims of sexual abuse in Khayelitsha.

Years ago, Khayelitsha was marked by high incidents of rape and sexual abuse cases. At the time, there was very little support for victims; all they could do was report the case and hope it would be followed through. But this was a harrowing process for someone who had just been violated and Genine Josias, a medical doctor, decided something had to be done. Working hand-in-hand with the TAC, Simelela was born.

At Simelela, victims of abuse received emotional support, medical assistance, and legal guidance – a place, finally, people could turn to in their time of need.

But, unknown to Dr Josias, the government had started a similar programme called Thuthuzela. ‘It was the exact same thing we were doing at Simelela,’ she says. Initially Simelela and the government did not have a good relationship – it looked as if Simelela was taking over their initiatives. It took time for both parties to come to an agreeable working relationship but, after much consultation, Simelela was taken up as a formal Thuthuzela centre.

For Dr Josias this change had both positive and negative implications: the funding and facilities would make a huge difference to the work that they do, allowing them to reach a greater number of people, but closing Simelela meant losing a lot of people who had come to seek help at the centre. ‘Without the TAC, we would never have made it,’ says Dr Josias.

Dr Josias believes that the TAC’s strength is its ability to educate people in a relatable and dignified way and plays a vital role in informing people about the services available to the community. Its large network means that important information trickles down to every school, household and community centre. ‘If it wasn’t for the TAC, people wouldn’t know about these services,’ says Dr Josias.

Although Thuthuzela is funded by the government, the funds are always focused on providing services, rather than marketing. People who work in the centres don’t have the time to reach out to communities and that is the gap the TAC fills.

After 15 years working with the TAC, Dr Josias refuses to do any work without them: ‘When I talk about civil society, I am talking about the TAC; they know the people, they are able to reach the people, and they know what will work for the Khayelitsha community and what won’t.’

Since the inception of Thuthuzela, sexual abuse rates have dropped in Khayelitsha, and the rate of convictions has increased. Because of the groundwork done by the TAC, when people arrive at the centre, they know what to expect, they know what questions to ask, and they have an idea of the processes that will follow. This preparation allows the professionals at the centre to focus on providing quality services to the victims.

The TAC has always had an aggressive strategy when it comes to condom distribution. In one day, one volunteer can distribute about 9,000 condoms and Thuthuzela has tagged onto the TAC’s distribution tactics to market their services and the centre’s details to schools across Khayelitsha. ‘It’s easier to reach the kids if the information is on something like a ruler, it’s right there, it’s in their mind and they know where they can go,’ says Dr Josias.

Building trust with the police

LT. Colonel Masiba of the FCS unit at the Khayelitsha Police Station.

It is 10 am on Tuesday morning. TAC volunteer Lumkile Sizila has arrived unannounced at the Khayelitsha Police Station to speak to Lieutenant Colonel Masiba, the unit commander of the family and children sexual offences unit (FCS) that works closely with the Treatment Action Campaign (TAC) in Khayelitsha.

Lt Colonel Masiba isn’t fazed by Lumkile’s surprise visit. ‘This is what they do, they just arrive,’ she says laughing. She takes a more serious tone when she explains that her door is always open to the TAC: ‘They are the community, we must respect the community,’ she says.

The FCS unit at the Khayelitsha Police Station, deals with rape cases, and other sexual offences for minors under the age of 12. When it is quiet, they deal with five cases in a week, and when its gets busy, especially towards the festive season, the unit can deal with 10 to 12 cases.

Across the country, ordinary citizens have had difficult relationships with the police; Khayelitsha is much the same.

There is a strong belief among communities that if you do not know someone personally within the police force, it is unlikely that your case will be attended to.

This belief is an perception that the colonel does not deny. She speaks frankly about the community’s lack of trust in the police – it is the reason the TAC-FCS relationship is so important.

Because the TAC belongs to, and is so well-entrenched in and trusted by the community, people who need the help of the police will often turn to the TAC for support. ‘The community trusts the TAC, and that gives us an opportunity to make sure that we filter the right information to the community,’ says Colonel Masiba.

The TAC has become a mouthpiece for both the community and the police. ‘When we take a case, there are certain processes we have to follow, and people don’t always understand that, and it looks like we are not doing anything,’ explains Colonel Masiba.

In order to get around this, the FCS is happy to brief TAC representatives on the status of various cases. If TAC members have an understanding of what is going on, they are able to relay the information back to the community, ensuring that nobody is left out.

Other than relaying information about specific cases, the TAC also works with the community on ways to interact more effectively with the police on an individual level, and educating people about police processes, making it easier for them to work together to fight sexual abuse. While levels of abuse have dropped in Khayelitsha, the battle is far from over. With her door open to the TAC, Colonel Masiba is certain that bringing an end to sexual abuse is a battle that they can win together.

Losing Tamara: the TAC and MaDlamini head to parliament

MaDlamini tells the story bravely, she does not falter at any point in her narrative, and is happy to backtrack to fill in missing gaps she remembers as she goes along.

MaDlamini’s daughter looks just like her. She hands me a photo of a smiling girl in a red soccer jersey. ‘This is Tamara,’ she says fondly. ‘My Tamara was absolutely fine, but after the operation, she was never the same again,’ says MaDlamini.

In 2010 Tamara underwent an operation to ease the migraines she had been suffering from. A scan revealed that a cyst on her brain that was the cause of her migraines and she was admitted to Khayelitsha Day Hospital to undergo surgery.

A day later, MaDlamini was surprised when she arrived at the hospital and found Tamara, who had just come out of surgery, in a normal ward and apparently ready to be discharged. ‘It did not make sense to me at all, after such a huge operation I expected her to be in ICU to recover, but when I arrived they told me that she was being discharged.’

Tamara was in no state to leave the hospital as she was still semi-conscious. Despite this, nurses insisted that she was ready to go home. MaDlamini, demanded to see the doctor that had conducted the operation and she was told that he was not available as he had gone overseas. MaDlamini had come to visit Tamara after work, it was very late and she had not organised any transport to take her daughter home. She tried to explain this to the nurses and asked for a wheelchair, which she was denied, and she was told to hire a car to take her home.

MaDlamini took Tamara home, but she was not going to sit back. She decided to go to the media and tell them how her daughter had been treated.

She was interviewed by a local newspaper, and after the paper contacted hospital officials, MaDlamini received a call, begging her to not to publish the story, and rather to come in for a meeting to discuss a way to help Tamara. MaDlamini agreed to attend the meeting, but made it clear that she was still going to publish her story.

MaDlamini arrived at Khayelitsha Day Hospital and expected to see the doctor that operated on Tamara. Instead, she received an apology and was told that Tamara had been wrongly discharged and that she was to bring her back.

That should have been the end of her problems. It sounded like everything would be taken care of. The hospital was to fetch Tamara and take her to a facility of MaDlamini’s choice for rehabilitation. MaDlamini chose the facility that was nearest to her, and gave consent for Tamara to go. At this point, Madlamini thought that her daughter would be taken care of. But that was not the case. Tamara spent two days at the rehabilitation centre, but was not attended to at all. When MaDlamini would visit her hospital, the nurses would look at her and say, ‘Oh look, here comes the newspaper lady.’

For days, MaDlamini went back and forth between Khayelitsha Hospital and the rehabilitation centre trying to get someone to see to her daughter, but nobody was willing to assist her. She was given conflicting information about who was responsible for her daughter and where she would be attended to. And yet again, MaDlamini received a call one afternoon telling her to come and fetch Tamara as she was being discharged.

As before, Tamara was in no condition to be discharged. ‘My child did not look okay,’ recalls MaDlamini, ‘but what could I do? I started to dress her to take her home.’ When her mother undressed her, she found that Tamara had been severely beaten. Her body was covered in welts and bruises and her hip was broken. Tamara was disorientated unable to speak.

There was another patient sitting in the waiting room. MaDlamini asked her if she had seen what happened to Tamara. The lady told her that she didn’t know anything, but that whenever the nurses went to see Tamara, they would always close the curtains around her bed.

MaDlamini demanded to see the doctor: she wanted to know what had been done to her daughter, why and by whom. When the doctor came, his response was that Tamara had not been beaten, and that all the marks on her body were caused by the bed sheet.

MaDlamini throws her hands in front of her in exasperation. ‘How can a sheet leave such marks on a person?’ To this day, she still doesn’t understand.

Without any further explanations she was told to take her daughter home, as there was nothing else to be done for her. ‘I took Tamara home, and I did my best to take care of her, but she left us in April of this year.’

Despite being turned from pillar to post at the hospital, MaDlamini refused to give up. She wanted answers, she was not prepared to let her daughter die in vain. So MaDlamini turned to the TAC. The organisation intervened on her behalf, attending all meetings with her and making sure there was enough pressure on the hospital officials to conduct a full investigation as to what had really happened.

After countless meetings, and little support from the hospital, MaDlamini’s case was escalated to a portfolio committee in parliament. ‘I’ve been all the way to parliament about this case,’ she says.
MaDlamini is not ready to give up the fight. She pauses for a minute thinking about what it is that she really wants. ‘I lost Tamara, so I have already lost everything, but I want to know who was responsible,’ she says.

Mike Hamca, of TAC Khayelitsha has assisted MaDlamini throughout her case, and he is adamant that the truth will be revealed. Over the past few months, the TAC has been a pillar of strength for MaDlamini. It has stood up for her and encouraged her not to give up. ‘If it wasn’t for the TAC, I don’t know where I would be. I’m just a cleaner, and I have no money but the TAC didn’t look at that.’

An investigation is pending on the matter and MaDlamini is currently waiting to hear back from the portfolio committee that has taken up her case.

The broad church of the TAC

Reverend Xapile (above), says the TAC still needs to tap into rural communities to educate them about HIV/AIDS. Photographs of Reverend Spiwo Xapile hanging in his office at JG Zwane.
Reverend Xapile (above), says the TAC still needs to tap into rural communities to educate them about HIV/AIDS. Photographs of Reverend Spiwo Xapile hanging in his office at JG Zwane.

There was a time when HIV/AIDS was the biggest taboo. People shut their doors and turned away from people with HIV. However, one church took a bold move to speak openly about HIV and encouraged people from the congregation to engage with HIV, to learn more, and share their experiences whether infected or affected by AIDS.

JG Zwane church in Gugulethu, has been around for many years, the entrance hall is decorated with photos and short stories of people who were involved in the apartheid struggle. It has always been a church that has been highly involved in community issues. When HIV/AIDS came to the fore and devastated many families, there was no way the church could sit back and do nothing.

‘People thought that HIV was God’s punishment, but if that was the case then we should all have had it, because we are all sinners,’ says Reverend Spiwo Xapile. Reflecting back on his relationship with the TAC, the Reverend recalls how difficult it was to bring HIV/AIDS to the congregation.

‘Some people left the church, they did not want to be part of a church that associated itself with HIV,’ he said. It was one thing to speak openly about HIV within the congregation, but getting people to fully engage the issue, and fight the stigma around the disease was another thing. That was where the Treatment Action Campaign (TAC) came in.

There are two things that define the TAC for Reverend Xapile: their ability to educate and their ability to engage people with no formal education.

When it comes to sexuality, there are some areas that the church cannot delve into. ‘I often see the congregation thinking to themselves, does the pastor know about these things he is talking about,’ he muses. The TAC fills that gap for us, they are far removed enough to be able to speak openly and frankly, yet at the same time they are close enough that the congregation listens, respects them and really takes their education to heart, he explains.

While the TAC has made huge strides in the Western Cape, Reverend Xapile does not believe their work is done. ‘There are still many rural communities that are still untapped, what will happen if we never reach them?’ he says.

At the time of this interview, it was day three of the nationwide #FeesMustFall protest. University students all over the country demonstrated against the high price of education. ‘We are sitting at the dawn of a struggle of education, but it’s not just the university students, that need education, the community needs education ,’ says the Reverend.

Despite having won the battle around stigma within his own congregation. Reverend Xapile is well aware that there are many churches that still have a long way to go. ‘I was disillusioned when I had to try and make people see the obvious,’ says the Reverend.

Sometimes it is difficult to marry the teachings of religion with reality. Often people are willing to suffer on earth in the hope that things will be better in the afterlife.

‘There is this idea that things that don’t work here, will work in heaven, but actually God wants us to create something new in this world,’ he says.

Whatever their religious affiliations, the TAC has ensured that people are educated about HIV. ‘You know, I think that all those people that work there are atheists, but they have such a deep understanding of humanity,’ says the Reverend.

Humanity is at the centre of the TAC story. And, it is a love for humankind and the desire to see an end to suffering that drives the relationship between JG Zwane and the TAC. The TAC holds a special place in the church as evident in one of the pictures in Reverend Xapile’s office: alongside a big cross is a framed photo of him in the TAC’s iconic HIV-positive T-shirt.

‘I felt the wrath of HIV’

It was a poster that read ‘HIV Testing’ that changed Nompumelelo Mantangana’s life. In 2000, she was a nurse at Nyanga Junction and every morning she would come to work and see a poster on the wall that encouraged people to come and test for HIV. Despite this call, the clinic was not able to conduct testing every day because the clinic psychologist was not available for counselling.

I was so frustrated, and I demanded training,’ says Nompumelelo, now provincial chairperson of the TAC.
Her request was granted. But when she started testing people, Nompumelelo says that is when she really felt the ‘wrath of HIV’. At the time Médecins Sans Frontières (MSF) was providing ARVs in Khayelitsha, so she referred many of her patients there.

Although it seemed the best solution at the time, Nompumelelo was still unhappy. ‘It was unfair for people to go so far, I didn’t understand how people could not have treatment in South Africa, how only people with money could access medication,’ she says.

Two years later, this very frustration hit closer to home. Nompumelelo’s brother was diagnosed with HIV in 2002. She tried everything she could, but still she was unable to get medication for her brother, leading to his death. When she suffered the same experience with a second brother, Nompumelelo didn’t need anything else, or anyone else, to tell her that she needed to be part of the solution.

Throwing herself into the Treatment Action Campaign (TAC), Nompumelelo got involved in door-to-door campaigns that mobilised the community and educated them about HIV/AIDS. In the beginning, there wasn’t a single NGO in Gugulethu, recalls Nompumelelo and only 10 people were on medication, but these 10 people were empowered and able to empower those around them in turn.

Fifteen years on, Nompumelelo says, ‘the TAC is working wonders in Khayelitsha’. It has managed to change the mindset of healthcare workers and has won them over. But relations between TAC members and healthcare workers weren’t easy in the early days. ‘The healthcare workers felt under pressure and threatened by the TAC,’ she says. Being a healthcare worker herself, Nompumelelo made an effort to show other community workers what the TAC was about, and why it was important for the communities to have a working partnership. So she went about recruiting as many colleagues as she could to join the TAC.

Today, the TAC has a working partnership with all of the clinics in Khayelitsha. On any given day, you will find a TAC volunteer providing treatment literacy of HIV/AIDS in the waiting rooms. The organisation has strong relations with facility managers, and is able to raise issues of the community to the higher management teams of the facilities. This work on the ground, is the real indicator of the TAC’s relevance, says Nompumelelo.

‘The TAC is still relevant: its strength is not in offices – it’s in provinces, it’s in branches,’ she says. The closer the TAC is to people, the better it works, and many lives are changed. While she is aware that there is a lot more work to be done, there is still time to reflect on the gains that the TAC has made.

In 2010 Nompumelelo was selected to go to New York, to accept an award for the best community movement on behalf of the TAC. That experience further solidified her commitment to the movement. ‘If we can be recognised internationally, it means we can be around for a longer time,’ she says.