AIDS South Africa | Manguzi, orphans, Tholulwazi

Manguzi Hospital

The entrance to Manguzi hospital

The entrance to Manguzi hospital

We had already been involved with one rural hospital in South Africa, which was Tintswalo in Mpumalanga province. Now the Rural Health Initiative put us in contact with a second hospital Manguzi. Manguzi hospital is in the North East corner of KwaZulu Natal, in one of the highest HIV prevalence areas in the world. In October 2005 Colin Pfaff, the chief medical officer, was in need of funding for, amongst other things, finishing off the building of a Gateway clinic just outside the entrance to the hospital.1 2

The idea of the gateway clinic was that it would serve two purposes, being firstly a Primary Health Care centre for the local town, and secondly providing the increased accommodation needed for VCT counsellors and the AIDS orphan care coordinator.3 It was estimated that about £2,500 was needed to finish the building and AVERT rapidly agreed to provide the money.4

Home based Carers

By early 2006 Colin and I were discussing the home based care service at the hospital. At this time there were such a large number of sick and dying people that the hospital wards were overwhelmed and people were often being sent home to die. HIV/AIDS was accounting for 30% of all medical admissions and 37% of mortality, and the infection rate in antenatal women was above 30%.

The core part of the home based care service was two teams, each of just three hospital staff, and they were responsible for doing all home visits in the Manguzi area, as well as helping with the support of the increasing number of HIV positive people taking antiretrovirals. What the hospital now wanted to do was to develop a system of community based carers.

The logistical problems of community care in the Manguzi area are considerable as 120,000 people live in the Manguzi hospital catchment area which is divided into 48 “isigodi” or tribal areas, and:5

the furthest clinic was over 86km away from the hospital

The overall aim was to have one worker on a stipend in each isigodi, who would assist the other carers in their area, and a start was made in 2001 with 5 carers being employed. The local municipality also provided training for several hundred local volunteers. In 2005 there was an expansion of the service, when a local donation enabled the employment of a further 10 community carers and now, in 2006, the plan was to recruit another 33 and AVERT was asked for, and agreed to provide the funding for 10 of these.6

Finding out about the orphans

A grandmother and her orphaned grandchildren

A grandmother and her orphaned grandchildren

Somewhere in the middle of discussions about home based care, the gateway clinic, and training for doctors, the subject of orphans arose. I remember one afternoon I was in my office at AVERT when an email from Colin came saying that he thought that there were about 3,000 orphans in the area. I did ask him to confirm that he did actually mean 3,000 and not 300, but the figure of approximately 3,000 was what he meant.

When I asked what help was being provided for these children he explained that there was a small NGO called Tholulwazi Uzivikele (TU) that had been set up by the hospital some years before. Based in one small room in the hospital they employed an orphan care coordinator who had registered about 2,000 of the orphans. However, only about 88 of the orphans were receiving any kind of help.7 Clearly if a significant program of care for the orphans was going to be put in place, then substantial plans needed to be made for TU, but who was going to be able to develop the plans?

In April 2006 the prospect of being able to develop TU took a major step forward with the appointment of Joi Danielson, the fiancé of one of the hospital doctors. Joi was tasked with sorting out the administration for TU and developing a plan for the care of the orphans.8 This was however quite a significant task and in the summer Joi was to say that:9

"we have over 3,500 orphans in a community of 120,000 people. There are no safe houses, orphanages, crèches, or even food programs to help them. 808 of these children are living in child headed households or in severe poverty with gogos (grandmothers)"

Tholulwazi Uzivikele

In June 2006 we received from Joi the first plans for the development of TU.10 11 Although there had been the semblance of an orphan care program in the past, because of the difficulties that this had faced it was decided to start afresh. Joi’s proposal was that there should be five key areas that would be:

Assessing the eligibility of an AIDS orphan for a government grant

Assessing the eligibility of an AIDS orphan for a government grant

1) Poverty assistance through obtaining government grants

2) Food security

3) Healthcare

4) Emotional healing

5) Educational encouragement.

Clearly AVERT could only fund a small part of such a large program and so I suggested to Joi that any application to AVERT for funding should concentrate on what we saw as being the most important and relevant areas for AVERT of poverty assistance through grants and food security.12

The reasoning behind this was that we thought that if AVERT could help get grants for the children, then this would help in many ways with the provision of food. And although we believed that education was important, we knew from elsewhere that it was difficult to be successful with education if the children that are being taught are exceptionally hungry. We also saw emotional healing as something that could be added on when we had hopefully made sure that the children weren’t starving, and we regarded healthcare as being primarily the responsibility of the hospital.

A week or so later at the end of June 2006, we received a revised proposal along with the costs for 17 months.13 I was concerned about the costs, but I felt that the need was very great, and that if necessary I could do more fundraising, although there was rarely much time. So I put the proposal forward to be discussed at the AVERT trustees meeting to be held a fortnight later. A week before the meeting my eldest son died of cancer. I took some time off from AVERT, but I came in for the meeting at which it was agreed that TU would receive the money they had requested.14

By the autumn of 2006 the implementation of the TU plans were well under way, including the home based care program now being part of the organisation.15 By November 2006 the new 4x4 had arrived which had been partly funded by AVERT, and donations had been received from other organisations allowing some of the other TU programs to start to be developed.16 17 18

A Gateway Clinic or HIV Community Care Centre?

Joi Danielson talking to Annabel Kanabus & Colin Pfaff

Joi Danielson talking to Annabel Kanabus & Colin Pfaff

What was not however progressing so well was the Gateway Clinic. Within a few months of AVERT providing the money which we hoped would complete the building, it became apparent that this money was far from enough. Colin had originally hoped that the building could be handed over to the hospital who would then be prepared to put in the interior fittings.19 However a new hospital manager had taken over and it seemed that the building had been put up on hospital land, but without the formal permission of the Department of Health. Whilst attempts were made to resolve these difficulties the building sat unfinished and unused.

Then the local district departments of social welfare and health said that were prepared to fund TU to start an HIV community care centre, so maybe the gateway clinic could be used. To get around all the various difficulties the hospital was asked if the Gateway Clinic could become an HIV Community Care Centre for TU and occupy the land for the next seven years, with the district paying for furniture, appliances, and security, and the hospital providing a VCT service.20

The Tholulwazi Uzivikele Community Centre

The Tholulwazi Uzivikele Community Centre

However, before TU could move from it’s one room in the hospital, into the HIV Community Care Centre, the building still needed to be finished. It was starting to seem that as soon as one problem was fixed there started to be another, but fortunately some of AVERT’s funding had not been spent because for a time it was not possible to recruit a social worker. So in early 2007 we agreed to this money being reallocated to finish the building.21 We had been visiting TU fairly regularly since we first started to provide funding, but because of the frequent changes in activities and budgets, as well as complications with the building it was decided that we would visit more frequently in future.

It was the decision of the TU workers, and the local community, that the building should have the words "HIV Community Care" prominently on the outside. Another difference between South Africa and the UK, as in the UK nobody would ever include the word HIV in the name of a building.

Eskom

The next problem we encountered with the building was the lack of an electricity supply, as Eskom, the national power company was saying that it would be nearly a year before they could provide a supply.22 This meant that when TU first moved into the building in early 2007 there was no phone, fax, internet or electricity.23 We decided after a while to put further pressure on Eskom by issuing a press release from AVERT as well as Joi talking about the issue on SABC2, and shortly afterwards, on a day when Pete and I were actually at the Community Centre, the electricity was connected.24

An unfinished building

The unfinished AIDS centre

The unfinished AIDS centre

I was very pleased when we managed to get the HIV Community Care building finished, because not only was it desperately needed, but on going around the Manguzi hospital grounds I had seen a large unfinished building. On asking what it was going to be, I was told it was the new AIDS centre. The building had been paid for with Global Fund money but the builder had apparently gone out of business. Three years later the building was still in the same state.

Tholulwazi Uzivikele 2007 - 2009

We supported TU for another three years as they continued to develop as an organisation. In 2008 they increased their HIV prevention activities with the start of Youth Development programmes of Life Skills and VCT/Drama.25 We had always been aware of the violence that sometimes took place in the area, meaning that amongst other things we needed to be very careful about where we stayed, and it also meant that it wasn’t easy to attract staff to come and work for the organisation. But we were still very saddened and shocked when Jim Lefler, the new Program Coordinator told us of the murder of the TU school coordinator.26

Jim was to say of AVERT’s contribution to the organisation that:27

"Thanks to your generosity and compassion TU has grown from a struggling organisation comprised of a few people in a small office to a powerful and energetic staff of 17, housed in a beautiful community centre. … your funding has helped countless citizens obtain ID documents and grants, has fed hungry orphan children before school, has empowered PLWAs to create a food garden, and has motivated people to care for the ill in their communities."

TU still continues in 2012, but with more of a poverty alleviation focus. But there were two particular places that we visited in South Africa where the need for increased HIV/AIDS services was very great, and the HIV prevalence extremely high, but where we were unable to help to the extent that we wanted.

Where we didn’t succeed

Cradock

Orphaned children at Cradock

Orphaned children at Cradock

We regularly heard about Cradock, a small town just outside the Grahamstown diocese, and so just outside the area where the Sisonke project operated. There was a hospice in Cradock and we were able to help them in a small way with their home based care for people with AIDS, but nothing further developed.28 We were not keen to provide food, and with all our projects there had to be an element of the people benefiting from AVERT’s help, helping themselves to the extent that they could.

One day when driving around Cradock we came to the rubbish tip, and we saw some children there. We asked what they were doing and the answer was that that was where they lived. They had been orphaned by AIDS and had no family left, but we couldn’t find any way to help them. Sometimes I think about those children and I wonder was happened to them.

Missionvale

The rapidly expanding graveyard at Missionavale township

Rapidly expanding graveyard at Missionvale township

Missionvale is a large township of about 100,000 people on the outskirts of Port Elizabeth, but some of the problems were quite similar. Food, home based care and obtaining disability grants were seen as the priority by the single local NGO, and we helped with the home based care and a social worker to help obtain disability and other grants.29

In addition and at the request of the NGO we wrote a report about some of the issues, about the need for education about treatment, about the care of the orphans and a number of other issues.30 But although the report was appreciated, the community didn’t feel able to move forward with the necessary response.

So sadly over the years we saw the graveyard in Missionvale spread rapidly across the hillside. When in later years some people were to claim that everything possible was being done to tackle the problem of HIV/AIDS in South Africa it was Missionvale and Cradock that I thought about, and indeed often talked about.

Advocacy

What I had learnt from the projects and more generally from our visits to high prevalence areas, made me even more convinced of the need for AVERT to speak out about the suffering that was taking place, and the need for on going action.

AVERT’s advocacy work was never very formalised, and effectively consisted of Pete and myself, and other people at AVERT, speaking out about those things which we considered needed to be improved. Although some of the issues we spoke out about changed, others such as the prevention of mother to child transmission were an important issue for many years. Sometimes there were new things to talk about such as the provision, or rather the lack of provision of antiretrovirals for HIV positive people in developing countries.

Working with the media

Our advocacy work was helped by the fact that we had considerable contact with journalists who used avert.org, and indeed AVERT, as a major source of information on HIV/AIDS. Journalists would often then ring us before writing an article, or doing a broadcast, to get further information and/or to get a quote. Examples of this was the BBC asking us in 2007 for our view on "home sampling" kits being made available in the UK, and then a few days later they asked us what questions it might be helpful to include in an interview they were about to do with the Global AIDS Coordinator.31 In 2008 AVERT was either quoted in, or provided information for articles in a range of media as diverse as the BBC, the New York Times, the Metro and the Malaysia Star.32

Conferences

Conferences, as long as they weren’t too expensive to attend, were an important tool for AVERT’s advocacy work, as well as important for our learning.

Towards South Africa 2004 Conference: A Decade of Freedom: The Decade Ahead

This conference was held in London in late 2003 and was held to mark the tenth anniversary of Nelson Mandela becoming president of South Africa. The aim of the conference was :33

"to review developments in South Africa since 1994 and to discuss how we can together meet the challenges for the period after 2004"

A red ribbon

A South African red ribbon badge

For me one of the attractions of the conference was that it was going to be attended by many South African government ministers, including the Health Minister Dr Manto Tshabalala-Msimang about whom there was such controversy. She wanted to promote the use of beetroot and garlic for improved nutrition for HIV positive people, rather than to provide antiretroviral treatment.34 Her views, together with those of Thabo Mbeki, who didn’t believe that HIV caused AIDS, were a major obstacle to the wider provision of antiretrovirals.

The conference started on the Friday evening, and the topics that were going to be discussed at the conference were apparently not going to include AIDS. So the next day I wore my Raphael Centre T-shirt that had a large red ribbon on the back. We came to a plenary and they suddenly said they would take questions from the floor and I quickly went to one of the three microphones where I was the first in line.

The chair said that the person at the microphone to the left could ask their question, and then the person to the right. When he said that the second person to the left could ask their question people began pointing at me, and then suddenly I realised that I was the only person standing as everyone else at a microphone had sat down.

So I asked my question, something about what the benefit of ending apartheid was going to be if possibly two million people, mainly poor and black, were going to die from AIDS because the government refused to provide antiretrovirals. As the conference delegates applauded I went and sat down. I can’t remember what the answer was that one of the ministers gave, but I had put AIDS on the conference agenda.

The International AIDS Conference Toronto 2006

Pete and I had planned to go to the International AIDS conference in Thailand in 2004, but we had to cancel because our son was ill. He then died in 2006 just three weeks before the Toronto conference. This time we decided we would go because we thought that is what he would have wanted, but I knew it was going to be difficult.

It was difficult even getting to the conference, as the day we were to fly out was the day that a terrorist plot was uncovered and many planes were grounded. Finally we were able to get on the plane but we weren’t allowed any hand luggage at all. So we arrived at Toronto airport to the sight of all these doctors and scientists, taking their broken laptops from their suitcases and wondering how they were going to make their presentations. Later we were to find out that our flight was one of those that had been targeted.

Protesting against the closure of a safe injecting site in Vancouver

Protesting against the closure of a safe injecting site in Vancouver

One contribution that AVERT made to the conference was that the first day the conference newspaper was filled with photographs provided by AVERT.35 It was lovely to see, amongst other pictures, those of the children at the Raphael Centre, and of course it publicised AVERT and also AVERT.org.

We took some time off from the conference to see the protests taking place outside the conference building, and we joined a march that was taking place to protest against the proposed closure of the only safe injecting site in Vancouver.

We also one lunchtime went and looked at a display of some of the panels from the AIDS quilt. There weren’t many people looking at them, and they seemed like the relic of a bygone era, but then I suppose they are. Panels in memory of young men who had died reminded me of Jason, and at every conference session that I went to there seemed to be people talking about the death of young men. What they didn’t seem to be talking about though was the prevention of mother to child transmission.

It was the last but one day and again at a plenary they suddenly allowed questions. So I asked why there had been so little mention of preventing mother to child transmission of HIV (PMTCT). The next day when there were reports back from the different strands of the conference, several people mentioned the lack of discussion and said that there should have been more. I hoped that when the conference delegates went back to their own countries that they would remember these comments.

So what did we do to stop AIDS in children when we got back to AVERT?

References

  1. Email from Colin Pfaff to Annabel Kanabus 7th October 2005
  2. Funding proposal for Gateway clinic at Manguzi hospital
  3. Email from Colin Pfaff to Annabel Kanabus 11th October 2005
  4. Email from Annabel Kanabus to Colin Pfaff 11th October 2005
  5. Proposal for funding of home based carers
  6. Email from Colin Pfaff to Annabel Kanabus 25th January 2006
  7. Email from Colin Pfaff to Annabel Kanabus 19th November 2005
  8. Email from Colin Pfaff to Annabel Kanabus 14th April 2006
  9. Email from Joi Danielson to Annabel Kanabus 12th June 2006
  10. Tholulwazi Uzivikele Orphan Care 2006
  11. Tholulwazi Uzivikele Mission and Vision
  12. Email from Annabel Kanabus to Joi Danielson 19th June 2006
  13. Orphans 29th June 2006
  14. Email from Annabel Kanabus to Joi Danielson 18th July 2006
  15. Tholulwazi Uzivikele September/October Report 2006
  16. Tholulwazi Uzivikele November Report 2006
  17. Tholulwazi Uzivikele Annual Report 2006
  18. Tholulwazi Uzivikele Organizational Structure
  19. Email from Colin Pfaff to Annabel Kanabus 14th January 2006
  20. Email from Joi Danielson to Annabel Kanabus 14th November 2006
  21. Email from Annabel Kanabus to Joi Danielson 24th January 2007
  22. Email from Joi Danielson to Annabel Kanabus 9th January 2007
  23. Tholulwazi Uzivikele 4 Month Report: March 2007
  24. Email from Joi Danielson and Press Release from AVERT 18th May 2007
  25. Tholullwazi Uzivikele Annual Report 2008
  26. Email from James Lefler to Annabel Kanabus 27th February 2008
  27. Tholulwazi Uzivikele 2008 & 2009 AVERT proposal
  28. Email from Annabel Kanabus to Sonja Greyling 6th September 2006
  29. Email from Annabel Kanabus to Jenny Miller 10th January 2008
  30. HIV/AIDS and Missionvale Informal Settlement January 2008
  31. AVERT Charitable Expenditure January 2007
  32. AVERT Annual Report and Accounts 2008 - 2009
  33. Towards South Africa 004 Conference: Interim Report
  34. Manto Tshabalala-Msimang Wikipdeia
  35. The Daily Voice 13th August 2006

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