AVERT: Southern African projects and AVERT.org

The history of the AIDS charity AVERT, founded by Annabel and Peter Kanabus.

Annabel writes about how from 2006 there were major community projects in South Africa, and advocacy work including the Stop AIDS in Children project, and the provision of antiretroviral drugs to prevent children being born with HIV. At the same time AVERT.org continued to be developed and was being visited by millions of people.

back to top 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 furthest clinic was over 86km away from the hospital

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 the furthest clinic was over 86km away from the hospital.⁵

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

there were about 3,000 orphans in the area

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)"

back to top 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:

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?

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

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

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.

back to top Where we didn’t succeed

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

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.

back to top 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.

what should we ask the Global AIDS Coordinator?

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

back to top 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"

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 target.

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.

back to top The Stop AIDS in Children Campaign

No mother should have to watch her child die

I certainly remembered the comments when I was back at AVERT’s office, and with three hundred thousand children still dying of AIDS each year, we decided that AVERT would have a "Stop AIDS in Children" campaign. Actually "campaign" was rather a grand word for it, but launched in the summer of 2007, it did have a specific aim, which was by 2010 to halve the number of children dying from AIDS each year.³⁶

We focused on the need for the improvement of prevention of mother to child transmission services in countries highly affected by AIDS. It was actually run like most of AVERT’s advocacy work which meant that we highlighted the issue in every way that we could, whether it was by mentioning it at any HIV/AIDS meeting we went to, putting the campaign logo on every page of the website, or by talking about it with every journalist who rang us for information.

We also decided to make a video but we got off to a slightly faltering start. We said to our designer what sort of video could you make, and he said how do you want to put the message across, and we said that depends on what you can do! So one afternoon I sat down with the writers on the web team and we wrote down all the important points we wanted to get across, and that became the script. And then the designer made the video.

We put the video on YouTube and it became quite a success, and the last time I looked nearly 100,000 people had watched it. I still get slightly "choked up" whenever I hear the words on the video:

"no mother should have to watch her child die"

Whether the child dies from cancer or AIDS the pain is still the same.

The campaign ended after a couple of years when most HIV/AIDS organisations seemed to be talking about the subject, and there was no longer a need to highlight the issue. Of course sufficient action on the subject didn’t necessarily follow, and to this day there are still too many children being born HIV positive, and even with the drugs the outlook for many of them is still not good.

back to top AZT and PMTCT at Manguzi hospital

The campaign was to develop to include action in South Africa, when in May 2007 Colin Pfaff asked AVERT if we would provide money for a supply of the drug AZT that was needed for the HIV positive pregnant women who did not qualify for antiretrovirals for their own health. We knew from previous discussions about the home based care service that the HIV infection rate in antenatal women was above 30% and the women needed both AZT and nevaripine to prevent HIV being passed to their baby, but only nevirapine was available at the hospital. The South African government had promised the rural hospitals in January 2007 that they would provide the drug in January, but it had still not arrived.³⁷

Our initial reaction was to say that we wouldn't pay for AZT, as AVERT’s policy was that although we sometimes provided money for other drugs, we wouldn’t provide antiretrovirals as they were needed for a person’s lifetime, and that wasn’t a commitment that we could make.³⁸ Colin however was persistent, writing again and explaining how:³⁹

we cannot sit in silence any longer

"if we could get a private supply of drugs and just start ourselves, it would shame the government into action as they would no longer be able to hide behind logistics as an excuse. It is thus in a way a lobbying tactic, but also real action as what we are offering our patients at present is not ethical"

He also sent as an example of the action that was being taken by the doctors, a letter that had been sent from five hospitals to the provincial head of department, explaining that the doctors felt that:⁴⁰

"many babies are getting infected unnecessarily .. we cannot sit in silence any longer"

AVERT agrees to pay for AZT

At the end of May 2007 AVERT agreed to provide some money for AZT, on the basis that women only needed it for two or three months at a time, and it was not a lifelong committment.⁴¹ It took a while to sort out the practicalities and to even estimate the quantities of drugs needed, but by July it was agreed that we would provide funding for six months or until AZT became available from the South African government, and that we would send the money at two monthly intervals.^{42 43} The money was sent to an old Manguzi Mission hospital bank account so that in the event of any difficulties Tholulwazi Uzivikele wouldn’t be implicated.⁴⁴ By the end of July the first money had been sent and by early August the first AZT had been provided, and there was optimism that the government would be supplying the drug "within a month or so".⁴⁵ The Treatment Action Campaign had threatened to take the South African government to court, and the government finally signed the new policy on dual therapy for PMTCT.⁴⁶

In October 2007 whilst Pete and I were visiting Manguzi, Colin told us that the remaining supplies of the drug had been rapidly used up, as there had been an increase in the number of HIV positive pregnant women, and he urgently needed a further two month instalment of money to buy some more supplies. Several transfers of money had been done just before Pete and I left England, and as several other AVERT trustees were also away from Southern England, it was going to be very difficult to get a money transfer urgently done.

Then I thought of AVERT’s credit card which I had with me. So we to a local pharmacy and I managed to persuade the credit card company, that they really could authorise a purchase of £2,000 worth of an AIDS drug, being bought in a remote part of rural South Africa!⁴⁷ Whilst waiting for various phone calls, I noticed on the shelves of the pharmacy, a local AIDS “cure” that as far as I knew had absolutely no effect at all. AZT would definitely be better!

By November 2007 the initial six month funding for AZT had been spent, but there was still no sign of a government supply of AZT, and I advised Colin that he would need to apply to AVERT’s committee for further money.⁴⁸ I was getting slightly concerned about the costs to AVERT, but it still seemed so very important. I also needed to ask further questions about the legality of what was being done. During our visit another member of the hospital staff had said that their understanding of the situation was that AVERT was funding an illegal activity. But Colin was able to confirm that the provision of AZT was not illegal in South Africa, but it was still against the policy of the South African Department of Health, and as a result he could in theory be disciplined for what he was doing.⁴⁹ AVERT agreed to provide more money.⁵⁰

By December 2007 another hospital in the district was also providing AZT as part of PMTCT, but Colin’s area manager had written demanding details of what he was doing.⁵¹

Colin Pfaff is charged with misconduct

On January 25th the Department of Health announced that a new PMTCT protocol would be released, which would include dual therapy.⁵² But then suddenly at the end of the month I heard that Colin that had been charged with misconduct as it was claimed that he had:⁵³

"rwilfully and unlawfully without prior permission of your superiors rolled out PMTCT dual therapy to the pregnant mothers and newborns"

Colin also said to me that:⁵⁴

"if you wanted to get attention and move the government / advocacy for PMTCT etc you have certainly done that"

but were my actions and the funding from AVERT going to result in Colin loosing his job?

there then followed one of the largest campaigns by health care workers ever seen in South Africa

However, there then started to be action by other healthcare workers in support of Colin.^{55 56} The news also reached a reporter at the New York Times, who rang me asking for confirmation that AVERT was the charity involved. She wanted to publish a story about Colin, AVERT and PMTCT. However, Colin asked me not to agree, believing that the matter needed to be resolved by people in South Africa, and that people in other countries being seen to be involved, might only make matters worse.

There then followed one of the largest campaigns by health care workers ever seen in South Africa, with the Southern African HIV Clinicians Society, the Rural Doctors Association and the Treatment Action Campaign amongst others, all calling for the reinstatement of Colin.⁵⁷ An online petition was signed by over 1,000 people within a week.⁵⁸ There was increasing coverage in the media, the Department of Health set a date of April 1st for dual therapy to start in KZN, and we were liaising with the AIDS Law Project and TAC about the action to be taken in defence of Colin.⁵⁹

The dropping of charges and afterwards

Then suddenly the charges against Colin were withdrawn.^{60 61} AZT provided by the South African government arrived at Manguzi and other rural hospitals, and the New York Times went ahead and published its article.⁶² It was said afterwards in the South African Medical Journal that:⁶³

"Pfaff’s actions probably saved a large number of infant lives"

and amongst the many comments made to AVERT was that:

Francois Venter, the President of the Southern African HIV Clinicians Society said:⁶⁴

"You guys are fantastic! And the doctors you funded are very, very brave."

and Colin said:⁶⁵

"Thank you again so much for all your support around PMTCT. I am not sure you realise how much of a stir here this has caused, with a lot of media attention, and generally renewed energy of health care workers to focus on PMTCT."

However in July 2008 Colin told me that he was leaving Manguzi.⁶⁶

back to top AVERT.org 2006 to 2008

We developed our knowledge of Search Engine Optimisation

Until 2006 the emphasis with the site had been on the writing of new pages, or adding additional sections to existing pages. Once new pages were written they were put up on the site, people came and read them and the accesses increased. However, in late 2006 I noticed that with some quite good pages the accesses seemed to be going down rather than up, and leading up to World AIDS Day the accesses had been about the same for 2006 as compared to 2005.⁶⁷

So I sat down with Rob Noble, our senior content writer, and together we investigated what had been happening with the site. We developed our knowledge of Search Engine Optimisation (SEO), and we then devised a set of “rules” for how SEO would be implemented on the site, as well as developing a system of grading and then regularly reviewing pages.⁶⁸ These systems did take a great deal of effort to both develop and implement, but it was certainly worthwhile, and by the autumn of 2007 the number of accesses to the site were about 40% up on the same time the previous year.⁶⁹

This work was greatly helped by the fact that Google had recently made available for free, its Google Analytics program. Although unfortunately this happened just a few months after AVERT had purchased a rather expensive and unwieldly web statistics program to use on AVERT.org.

In 2007 we added on to the site about ten pages that we had got translated into Spanish because at that time there was very little detailed HIV/AIDS information available in other languages.⁷⁰ We also improved the ever popular quizzes, and then in 2008 we developed an online game.⁷¹ The game was designed to not only be enjoyable but also educational, through requiring the player to answer questions about HIV/AIDS.

During 2007 AVERT.org had become the most popular HIV/AIDS website in the world, and indeed was among the 20,000 most popular sites on the web worldwide across all topics and countries.⁷² During 2008 the site was visited by more than 10 million people, and in December 2008, during the week of World AIDS Day, for the first time we had over one million pages on the site being viewed in just one week.^{73 74}

back to top A Major Gift

AVERT had received a number of legacies, over the years, all of which were extremely helpful in helping to fund AVERT’s work, and it meant that less time, and indeed less money needed to be spent on fundraising. Then at the end of 2008 we were notified that we were to receive a large legacy in the region of £400,000.⁷⁵

This could hardly have come at a better time as the value of AVERT’s endowment had decreased considerably due to the decline in the stock market as a result of the financial crisis. There were no conditions attached to the legacy, so AVERT could spend it entirely as we wished. The trustees considered the use of the legacy extremely carefully, and we decided that in view of the still dire state of the HIV/AIDS epidemic, we should not in any way use it to increase our reserves, but that we should if anything use it to further increase the work we did.

So over the next two years we used the money to firstly ensure that we could continue with all our current charitable activity, including the website AVERT.org, and our two major South African projects Tholulwazi Uzivikele and Sisonke. We had also already started to fund a number of smaller Southern African projects outside of South Africa, and this was a program which we were now able to continue.

Other Southern African projects

There were about ten of these small projects over the years, including the Thandizani, SAPEP and Wamata projects in Zambia, Namulaba and St. Francis in Uganda, and Umunthu in Malawi. With the exception of Umunthu these projects lasted for a couple of years and then ended for a variety of reasons, although mostly the reasons were connected with PEPFAR.^{76 77}

There were rapidly changing situations occurring with many projects and organisations around this time, and one example was that we provided one organisation with money for the treatment of opportunistic infections in children, which was no longer needed once money for antiretrovirals became available through PEPFAR.

Another project turned down money they had already agreed to accept from AVERT for certain HIV/AIDS work, because they were reorganising some of the work they were doing in order that they could receive more money from PEPFAR. Finally with another organisation it became apparent that the HIV/AIDS work was a smaller proportion of the work they did than we had expected, and as an HIV/AIDS organisation we had to ensure that with any work we funded, that a very high proportion of it went directly to either HIV prevention, treatment and care, or research.

back to top The Sisonke Project

Sisonke, about which I have written earlier regarding the start of the project, had as its main focus helping groups of people in the villages to respond to the impact that HIV/AIDS was having on their communities. After a new Sisonke worker, Desire Nokele, was appointed in 2006 the work with the groups rapidly developed. Des was one of the original clients of the Raphael Centre which was also helped by AVERT. She then became a volunteer helping others, and then a part time worker. It is a testament to her character and determination, that she has then made such a success of becoming the full time worker for the Sisonke project. Des helped the groups to put their ideas into practice, through their own initiative as well as through accessing local sources of support.

Early on the work of the groups included providing home based care, looking after the orphans and other children affected by AIDS, and growing vegetables to provide better food for people with AIDS.⁷⁸ Later on the groups helped people to access treatment, and they helped with adherence. They also helped people to obtain government grants, and this included a number of workshops being held at the DSR offices, to help provide education about the various social security grants that could be obtained, particularly for children infected with and affected by HIV/AIDS.

With regard to grants from Sisonke, a number of the groups wanted grants for large cooking pots and stoves, so that everyone could contribute when food was being prepared for the orphans. By the summer of 2008 Des was working with thirteen different groups and in addition to the cookery items, other items purchased with Sisonke grant money included water tanks, cement and various items of garden equipment.⁷⁹

Occasionally the group activity was a money making activity, with the money then being used to help provide care to people with HIV/AIDS, although the opportunities for money making activities were generally very limited. However, one example was providing a local hospice with a sewing machine so that they could make traditional dresses for which there was a demand in the community.⁸⁰ Later on there were to be between 16 and 18 groups being supported, the number fluctuating according to the need in different places, as well as the willingness of the people in the groups to take action themselves on their various activities.⁸¹

The impact of the project was considerable, with an estimated 1,800 people being reached directly through the groups in 2009. Taking into account the indirect impact that occurred by households influencing each other, meant that the number indirectly reached was possibly as many as 84,000 each year.⁸²

Home Based Care

As the needs of the groups started to change, some of the money that was to have been spent on grants was instead spent on providing training in home based care. By 2009 Sisonke had successfully provided home based care (HBC) training for 22 selected group members. This training was provided on the basis that these people would then provide training and share their experience with their individual support groups. It was estimated that as a result at least 141 people had received guidance on HBC training, and that these group members had then between them reached between 1120 and 2820 people.

The Gogos

It had become apparent that elderly people and particularly grannies (gogos in isiXhosa), were starting to play a more prominent role in some of the groups, and in 2008 some 35 of them from 6 different communities had decided to form their own group which they called the gogogetters. Apparently on an earlier visit in 2008 I had made some comments about the needs of the elderly and this had influenced what had subsequently happened.⁸³

As the needs of the groups changed with the coming of antiretrovirals, so the gogos, and gogogetters played an increasingly important role in Sisonke, and on a memorable visit Pete and I met them as a group. I talked to them about the difficulties I had faced when my son had died, and I was humbled by their response as they told me how some of them had lost several children, and in some cases had had to cope with the death of all their children, and had been left to bring up their grandchildren on very limited means. In 2010 Des said to us:⁸⁴

"I want to thank AVERT for the amazing partnership around Sisonke. We continue to look forward to communities and groups taking the next step. I would like to repeat in appreciation an African proverb. ‘If you want to go fast, go alone. If you want to go far, go together.’ DSR is going far with Sisonke. Thank you for your part!"

back to top Changing Times

It was not just the Sisonke project that had to ensure that it was changing with the times, but many other Southern African HIV projects as well. South Africa had by 2011 nearly reached universal access to antiretrovirals, and although it was still unclear what this meant in some of the rural areas, there was clearly and thankfully fewer people dying, and therefore less of a need for home based care. With fewer deaths there was no longer an increasing number of orphans, and some of the orphans who had been born HIV positive had died. There was still very large amounts of money coming from the Americans through the PEPFAR programmes, and many of the programmes were now far more established. However, there were still many issues to contend with such as the lack of second line antiretrovirals, the continuing issue of the TB and HIV interaction, and the children still being born with HIV.

back to top AVERT.org 2009 - 2011

In 2009 I was still further developing AVERT.org and we made a major effort to include more videos on the site. By the end of the year there were more than 3,000 views of videos on the site taking place each week.^{85 86} For World AIDS Day 2009, we made a second video ourselves to go on the site, this time on the need not only for universal access to antiretrovirals, but also universal access to HIV prevention and more generally to HIV care. The Universal Access video has since been watched by more than 75,000 people.

In 2009 there were more than 20 million visits to the site, an increase of more than 50% over the previous year, and the site continued to be the most popular HIV/AIDS website in the world.⁸⁷ We also had a very successful World AIDS Day in 2009, with the success continuing into 2010 with the site regularly having 500,000 visits made to it each week, and over one million page views.⁸⁸ By 2011 the site was receiving about 700,000 visitors a week, and about 30 million visitors a year. Between them the visitors were regularly looking at more than a million and a quarter pages a week and the site continued to be by far the most popular HIV/AIDS website in the world.

It is very difficult to even estimate how many people have visited the site over the years, but it is likely to be in excess of 70 million.⁸⁹ If even a fraction of these people have gained something useful from the site, then this is a great deal of education that we have provided. Put together with all the other projects we have done, some of which have also more directly helped with treatment and care, this adds up to a considerable amount of HIV/AIDS education, treatment and care, which is exactly what we set out to provide twenty five years ago when we started in the attic.

back to top Epilogue

On World AIDS Day, December 1st 2009, I had been diagnosed with cancer of the mouth, the same cancer that had killed my son in 2006. During 2010 I worked for AVERT as often as I could in between periods away for operations and radiotherapy.

Returning to AVERT full time in 2011 I realised that the time had come to move on, and so I retired from AVERT in the summer of 2011 after 25 years of AVERTing HIV and AIDS, and after one last visit to the Sisonke project in South Africa. I did not however retire from HIV/AIDS work entirely, as working for another small charity GHE, I started a website on TB, www.tbfacts.org, which amongst other things has involved writing about the link between TB and HIV.

Annabel Kanabus December 2012

back to top Additional Notes

In this short history it has only been possible to highlight some of the HIV and AIDS work done by AVERT. I don’t also wish to suggest that all of the work that we did was extremely successful. There was the occasional project grant that didn’t work out quite as we hoped, or the publication that wasn’t as popular as some of the others. If anyone would like any further information or clarification of anything written in this history, then please do write to me at a.kanabus@btinternet.com.

This account has also focused on the HIV/AIDS work carried out by AVERT, as it was to do the HIV/AIDS work that with Pete I started AVERT and worked as the volunteer chief executive for 25 years. There is however much more to a charity like AVERT than its charitable activities. There is administration, general and financial management as well as fundraising, all of which I have only briefly mentioned. I would also like to thank the many other people who have been involved in AVERT and without whom the charity wouldn’t have achieved so much.

I wish AVERT well for the next twenty-five years.

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References back to top

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
36. AVERT Annual Report and Accounts 2007 - 2008
37. Email from Colin Pfaff to Annabel Kanabus 10th May 2007
38. Email from Annabel Kanabus to Colin Pfaff 16th May 2007
39. Email from Colin Pfaff to Annabel Kanabus 23rd May 2007
40. Letter from five hospitals to the District Manager, Umkhanyakude District 4th May 2007
41. Email from Colin Pfaff to Annabel Kanabus 30th May 2007
42. Email from Colin Pfaff to Annabel Kanabus 1st July 2007
43. Email from Colin Pfaff to Annabel Kanabus 12th July 2007
44. Email from Annabel Kanabus to Colin Pfaff 13th July 2007
45. Email from Colin Pfaff to Annabel Kanabus 28th August 2007
46. Email from Colin Pfaff to Annabel Kanabus 28th August 2007
47. PMTCT Manguzi Finance Timesheet
48. Email from Annabel Kanabus to Colin Pfaff 7th November 2007
49. Questions to Colin and answers, November 2007
50. Email from Annabel Kanabus to Colin Pfaff 30th November 2007
51. Email from Colin Pfaff to Annabel Kanabus 14th December 2007
52. Statement on disciplinary action against Dr Colin Pfaff Treatment Action Campaign 18th February 2008
53. Email from Colin Pfaff to Annabel Kanabus 31st January 2008
54. Email from Colin Pfaff to Annabel Kanabus 12th February 2008
55. Colleagues praise AIDS doctor, Sunday Tribune 17th February 2008
56. Clinicians support South African doctor in dispute over providing AIDS therapy for pregnant women, Foxnews.com 18th February 2008
57. HIV/AIDS Clinicians Society supports Dr Colin Pfaff 18th February 2008
58. Support for Dr Colin Pfaff
59. Email from Colin Pfaff to Annabel Kanabus 20th February 2008
60. Charges against Dr Colin Pfaff dropped
61. Disciplinary action withdrawn against Dr Colin Pfaff, Treatment Action Campaign 23rd February 2008
62. Dugger, C Rift over AIDS treatment lingers in South Africa 9th March 2008
63. Richter, M Does the power of overripe tomatoes and dusty photos equal that of the bomb? July 2008
64. Email from Francois Venter to Annabel Kanabus 10th July 2008
65. AVERT Annual Report and Accounts 2007/8
66. Email from Colin Pfaff to Annabel Kanabus 18th July 2008
67. Web Pages 2005 - 2007
68. Charitable Expenditure Website AVERT.org October 2007
69. Web Pages 2005 - 2007
70. AVERT Annual Report and Accounts 2007 - 2008
71. AVERT Annual Report and Accounts 2008 - 2009
72. AVERT Annual Report and Accounts 2007 - 2008
73. AVERT Annual Report and Accounts 2008 - 2009
74. Web Pages 2007 - 2009
75. AVERT Annual Report and Accounts 2008 - 9
76. AVERT Annual Report and Accounts 2007 - 8
77. AVERT Annual Report and Accounts 2008 - 9
78. AVERT Annual Review 2005
79. DSR Sisonke Community Action June 2008
80. Email from Tony Schnell to Annabel Kanabus 25th October 2007
81. Department of Social Responsibility Sisonke Community Action 2009
82. Sisonke Project 2010
83. Sisonke Community Action Report October – December 2008
84. Sisonke Community Action Report January – March 2010
85. Other Charitable Expenditure May 2009
86. Charitable expenditure September 2009
87. AVERT Annual Report and Accounts 2009 - 10
88. Charitable activities January 2010
89. Google analytic statistics 2007 to 2011