The history of the AIDS charity AVERT, founded by Annabel and Peter Kanabus.
Annabel writes about how from 2002 there was overseas work in Mozambique, Russia and India which went alongside the further development of AVERT.org. There was then the major development of AVERT's work in South Africa, and advocacy work, particularly about the provision of antiretrovirals.
back to top A Laboratory in Mozambique
At the end of 2000 we were approached about possible support for a student Dr Ilesh Jani from Mozambique, who had already started the first year of his Phd. The studentship scheme was not designed for those who had already started their Phd, but the AVERT trustees decided we could make an exception for Dr Jani as he was working on the development of more affordable CD4 tests. Although antiretroviral therapy was becoming more affordable, there was an increasingly urgent need to develop lower costs CD4 tests, as antiretroviral treatment was so difficult to provide without them.
So in 2001 we provided him with a three year grant the first two years of which would enable him to finish his PhD. In the third year he would return to his job at the Mozambique Department of Health and the grant from AVERT would enable him to continue his work on developing the process of doing CD4 tests using the more affordable flow cytometry.1
We were very committed to the idea that this work should help in Mozambique and other developing countries, and that bright researchers from Africa should not be enticed to America or other developed countries after their training had ended. So it was also agreed that if Dr Jani did not return to Mozambique in the third year, then he would repay to AVERT all the money that he had received in the first two years.2
Returning to Mozambique via WHO
our mutual aim of strengthening local capacity
It was September 2002 and Ilesh was writing his thesis. He had already before completing his thesis written peer reviewed articles on Affordable CD4 technology, when his supervisor Dr George Janossy received a letter from the head of Blood Safety and Clinical Diagnostics at the World Health Organisation (WHO) asking if Ilesh could go and work on a short term contract at WHO.3 4 The work that he would undertake at WHO would be to write their guidelines for CD4 T cell monitoring in resource poor countries, as well as organizing training workshops on the topic.5
Of course it had been agreed that if at the end of two years Ilesh did not return to Mozambique then he would return his grant to AVERT. So WHO had to ask AVERT for our permission for him to go and work for them, permission which of course we gladly gave.6 Their reply to Professor Janossy included:7
"Please forward my special thanks to AVERT, as this arrangement will serve our mutual aim of strengthening local capacity." Dr Gaby Vercauteren, WHO
2003 - 2004 Back in Mozambique
By May 2003 Ilesh was back in Mozambique where he was to be responsible for the newly established flow cytometry unit at the Department of Immunology. This unit was to provide a monitoring service for patients having antiretroviral therapy, as well as establishing a quality assurance program that would serve other laboratories.8
It had been requested that Ilesh’s third year grant be used for the launch of and the operation of the flow cytometry laboratory, as money for equipment had been provided by two Spanish organisations.9 So the grant from AVERT was going to enable the affordable CD4 technology to be established in Mozambique.
All went quiet until August when we heard the very sad news of the death of the head of the Department of Immunolgy. It was uncertain who would take over as the new head of the laboratory but we were reassured that the new HIV laboratory would go ahead, and budgets were received with the AVERT grant of $23,000 split over two years. The money was going to pay for the cost of two technicians as well as reagents to operate the flow cytometry machines.10
Very quickly it became clear that additional things were needed for the laboratory, and with the promotion of Ilesh to Head of Department, more ambitious plans were made. The overall objectives of the HIV monitoring laboratory were to stay the same, although on a larger scale, but there was now to be an additional component of operational research looking for appropriate and affordable solutions for the clinical care of HIV/AIDS patients for whom antiretroviral therapy was not yet available.11 12
2004 – 2006 An Expanded Laboratory
In January 2004 new budgets were agreed for 2004 and 2005. The grants of $47,660 for the first year and $41,410 for the second would, amongst other things, provide for two scientists and an administrator, and three other staff. There was to be funding for reagents and consumables, as well as office equipment.13 The funding for the second year was provisional as it was hoped that before too long funding would be available either from the Global Fund or PEPFAR.
PEPFAR
The President’s Emergency Plan for AIDS Relief, or PEPFAR as it became known, had been announced by President Bush in his State of the Union speech in 2003. It had promised to provide $15 billion over the next five years to help the people of Africa, and that it would:
"prevent 7 million new AIDS infections, treat at least 2 million people with life extending drugs and provide humane care for millions of people suffering from AIDS and for children orphaned by AIDS"
But initially the money was to be slow in reaching people "on the ground" as generally the money had to firstly go via large American organisations, who then had to make and implement plans as to how the money was going to be spent in the countries where it was needed.
Continuing to build capacity
During 2004 capacity continued to be built at the laboratory with the Department of Immunology providing an increasing number of CD4 tests. At the same time work proceeded on the study of Opportunistic Infections, as well as the training of technicians to work in other laboratories, and a service to allow earlier diagnosis of HIV in children.14 In the second part of the year the Department of Immunology became the National Reference Laboratory.15
If it wasn't for you and AVERT none of this would be here
In 2005 Peter and I went to visit Ilesh, and to see the laboratory. As we stood in the doorway Ilesh said:
"If it wasn’t for you and AVERT none of this would be here."
We were also on this visit able to meet some of the locally based American Communicable Disease Centre (CDC) people, who by now were providing the Department of Immunology with large amounts of PEPFAR money. It was nice to be treated by them as Department of Immunology funders of an equal status!
In November 2005 we provided a further grant of $51,000 for 2006, as there were still things that were needed that the Americans were not funding. But by the end of this grant it was clear that sufficient money was now available from other sources.
Looking Back
Looking back at what AVERT achieved in Mozambique, makes me very aware of the unique opportunities there were at this time for the work of quite small charities to result in very considerable benefits for people outside the UK. However, we not only had to provide money, but also many many hours were to be spent discussing budgets and organisational issues of the recipient organisations, together with the HIV/AIDS work, and there were dozens of emails constantly going back and forth. Without the arrival of email it would not have been possible for the work to be done in such a cost effective way.
This is also one of the projects where the work started by AVERT still
results in an on going benefit today, with the laboratory still
operational in Maputo. Ilesh Jani is now the Director of the
Mozambique’s National Institute of Health, overseeing some 104
employees, and with an annual budget of $9 million from
PEPFAR.16 17 Our
belief that the introduction of new technology in a developing country
is best led by someone from that country, has also been vindicated with
Ilesh saying recently that:18
"Most technologies that we work with are created in the Western world, and sometimes the people designing [them] don’t really know the field." Ilesh Jani 25th October 2010
back to top AVERT.org 2000 to 2003
By 1999 we had started to receive messages of appreciation from people who had learnt a lot about HIV/AIDS from the site, and by 2002 we had of course taken the decision that AVERT would close down it’s publications program and concentrate on the website. But I think it was only rather slowly that I started to realise quite the extent to which the site could be used in a major educational way. In 2002 I was to write that:19
"I like to think that we might be able to use the site to at least do some awareness raising."
Until this time I had developed the content of the site myself, and this mainly consisted of getting permission from other organisations to use their material on our site, as well as changing the format of AVERT’s own material. We were not generally doing much original writing, but that started to change in 2001 with the appointment of the first full time writer for AVERT.org.20 By late 2002 sufficient updating of pages was needed, that a second full time writer was appointed.21 It was important that we wrote for the site in clear simple English and this was appreciated by visitors to the site:22
"This is an awesome web site. You tell it how it is, you don't use these huge words so no one knows what you are talking about"
Our partnership with the Raphael Centre had also made us much more aware, and indeed knowledgeable, about what was happening in South Africa where in 2001 there was of course no antiretroviral treatment available and there were an enormous number of HIV positive people. As a result I was planning to develop a new section on AVERT.org about AIDS in Southern Africa.
By 2003 there were 75,000 visitors to the site each week, and they were between them accessing 200,000 pages of information. About 8,000 downloads of AVERT's booklets were taking place each week, with all of AVERT's booklets now being on the site in PDF format.23 During the busiest week of the year around World AIDS Day 2003, the site received an estimated 140,000 visitors who between them looked at over 400,000 pages of information.24
back to top Outside of Southern Africa
It was the aim of AVERT’s overseas program to help in countries where there was a particularly high rate, or rapidly increasing rate of HIV infection. Inevitably this meant the focus was mainly on Southern Africa, but there were some occasions when we had projects in other countries, such as when we partnered with the Privolzhsky Okrug AIDS Control and Prevention Centre at Nizhny Novgorod in Russia, and the NGO Sangram in India.
back to top Privolzhsky Okrug AIDS Control and Prevention Centre
In 2002 the Department for International Development (DFID) funded and operated a Health & Social Care Partnerships (HSCP) scheme which partnered UK organisations with organisations in Russia, Ukraine, Belarus and Moldova.
DfID asked us if we would partner with the Privolzhky Okrug AIDS Control & Prevention Centre in Nizhny Novgorod in the Russian Federation. This centre is a federal AIDS centre whose main goal is to stop the spread of HIV infection in the Volga region, an area with a population of over 32 million.25 The centre was in charge of "supervising [all the] HIV combating activities", and they specifically wanted to improve the HIV/AIDS and drugs education in their schools. The setting up of the project was sufficiently complex and difficult that Pete and I went on an initial visit to Nizhny Novgorod in the summer of 2002 in order to complete all the preparatory work.26
Teaching the teachers
The first part of the project focused on training for some of the teachers in Nizhny Novgorod. The training sessions included information on the relevant issues and new teaching methods, as well as written activities for school children.27 This part of the project was necessary because of some of their lack of understanding of the issues, and their ways of working were very different to how we provided education for young people in the UK.
In Nizhny Novgorod at that time much of the teaching was based on the young people sitting at their desks in rows, and copying down facts written on a blackboard. We wanted to introduce the teachers to some of the ideas we had developed through the "Working with Young People" project, of young people being actively involved in discussion and activities, and that the education should have at its starting point the issues and concerns of the young people themselves. Our project partners were keen to learn about such ideas as the use of “role play” or drama, which they referred to as Forum Theatre methods.
The "Working with Young People" materials had been so successful internationally, that they had been translated into a number of different languages, so we were able to provide our Russian partners with a copy of them in Russian. There was also a very good World Health Organisation publication on School Based Education, but after extensive discussions with a number of people and organisations, it was established that the Russian edition of these materials had been lost by WHO/UNESCO and so it was agreed that the most important parts of this publication would be retranslated.28
Some visits
As part of the project our Russian partners made a visit to England in 2003, and one of the visitors was Nikolai Nossov, the head of the centre. We understood that he regularly met with people from other federal HIV/AIDS centres, of which there were only about eight throughout the Russian Federation, and so when the group asked if during their stay they could visit some other organisations beyond the specific ones required for the project, this seemed important as a possible way of influencing services in the Russian Federation beyond what was specifically being done as part of the DfID project.29
We arranged for our visitors to stay on for a few extra days at AVERT’s expense and during this time they visited the PHLS to discuss the public health aspects of the HIV/AIDS epidemic. They also met Professor Gerry Stimson to talk about policies regarding HIV/AIDS epidemics among drug users including harm reduction, and they visited a methadone treatment centre.30
Pete and I again visited Nizhny Novgorod in 2003 and saw some of the teacher training taking place. Nikolai knew about the previous work AVERT had done regarding prisoners and HIV/AIDS, and so he asked us to meet with their local prison department. We discovered that along with having an HIV infection level of 8% among incoming prisoners, they also had in excess of 150 prisoners with drug resistant TB.31
Teaching the young people
The teachers started using their new skills in providing HIV/AIDS education for the young people, and Pete and I were able to see this in action during our last visit in 2004. The schools had a choice regarding the activities that took place and whilst some had undertaken formal class education, others had developed some more “active learning” class activity.
It had been clear from the start of the project that the most sensitive issue was going to be the discussion of sex and this was indeed the case. However, some useful discussions took place about this particularly in relation to a student survey that the Russian team had carried out and which asked about the students’ sexual behaviour. To the surprise of the teachers the survey showed that young people were having sexual intercourse at a much younger age than was believed.32 This was much the same result that we had found way back in 1988 when we had carried out our survey of young people in Canterbury!
Disseminating the results
At the end of the project the Russians held a very successful conference to disseminate the results of the project. They also published the teacher’s manual that they had developed and wrote eleven articles for publication.33
back to top Sangram
At about the same time that we were trying to improve HIV/AIDS education in Russian schools, and were developing HIV education and care projects in South Africa, we also became involved with HIV/AIDS education amongst sex workers and truck drivers in India. AVERT was certainly becoming, or indeed had become, without really aiming to be an international organisation, and the travelling although very interesting had become quite demanding. On one occasion Pete and I came back from Russia where it was snowing, and then went to South Africa where it was extremely hot, with just the Easter weekend in England in between!
AVERT’s partnership with the Indian NGO SANGRAM started in 2003 when I first met Meena Seshu, the general secretary of SANGRAM, at a meeting in London organised by Human Rights Watch.34 SANGRAM had a medical clinic for truckers, rural women and sex workers that was about to be closed because of a lack of money and AVERT was asked, and agreed, to provide the funding to keep it operating.
The Truck Driver’s Project
Fear of stigma and discrimination against those who are HIV positive was, and probably in many instances still is very strong in India. So much so that it stops people who are HIV positive accessing treatment or counselling. To overcome this SANGRAM started a mobile clinic with a doctor and counsellor, making treatment for STDs and for HIV related Opportunistic Infections, available directly at truck stops. Also, as antiretroviral drugs began to be available, they helped people to get them from the local hospital.35 Local sex workers also acted as educators, and SANGRAM's work was very linked in with that of VAMP.
VAMP
SANGRAM had begun its work in the Sangli district of South Maharashtra in 1992. Since the early 1990s women in prostitution had borne the brunt of the HIV epidemic in India. However, many HIV intervention programmes had further stigmatized women in prostitution by labelling them as transmitters of infection.36 Rather than continuing to label these women as victims, SANGRAM started a peer based condom intervention program with women in prostitution.37
In 1996 peer educators supported by SANGRAM formed a collective called VAMP that became separately registered as an organisation with its own board of directors drawn from peer educators and other women in prostitution.38 Some of these women were devadasis, meaning that their families had dedicated them to the service of a goddess.39 40
By 2002 SANGRAM had become an internationally respected organisation, but the persistent harassment by the local police of the members of VAMP interrupted work that had previously resulted in the distribution of 350,000 condoms a month.41 A local political leader claimed that:42
"Under the garb of HIV/AIDS prevention programme, these women are promoting prostitution."
The difficulties that SANGRAM and VAMP faced with some of their HIV/AIDS work was to continue for some years, including during the time that we made a memorable visit to Sangli.
Visiting SANGRAM
We visited SANGRAM and VAMP in December 2005. We wanted to understand more about the context of their work, as well as discussing a possible extension of their funding. During the visit we were able to see the AVERT funded project in action, visiting the truck stops and seeing the women talking to the truck drivers and demonstrating condom use. We also attended a meeting of some of the women members of VAMP where we were asked whether we would like to visit a nearby brothel. Always keen to understand more about the culture in other countries, Pete and I went along with the son of one of the peer educators.
We walked up and down the rows of houses amazed by the scale of the red light district, where there were apparently some 400 women. In one of the houses we went upstairs and there in the bottom of the shower cubicle there was a big pile of wet condoms. What are they doing there we asked, and the answer was that the condoms were being washed so that they could be reused!! Not exactly what the health educators recommended.
Then as we walked back towards our car we were suddenly completely surrounded by a large group of young men who brought us to a complete halt. What are you doing here they demanded to know? It was one of the few times on an AVERT visit that I was worried about my physical safety, and I was really quite afraid.
a frenzied moral climate of raids and rescues
The background to this was that earlier in the year, in May 2005, the brothel had been raided by the police, encouraged by an American organisation called Restore. We had thought that all these problems were over, not realising until we were on our way to the brothel that the Americans had entered the red light area again in October, but this time without police support. We were the first westerners to have visited since then, and so the young men, many of them relatives of the sex workers, wanted to know if our visit was going to be the prelude to another raid.43
We hurriedly explained that we were visiting by invitation, and that we had only come in order to understand more about the issues they faced. Such was the reputation of the Americans that we had to emphasize our Britishness. It seemed though that what we said was reassuring, because the group of young men suddenly dispersed and we could go on our way.
The ART Centre at Sangli Hospital
During our time in Sangli Meena took us to visit the Civil hospital where the poorest people in Sangli received their health care, and where the Indian Government rollout of antiretrovirals was starting to take place. The basement had recently flooded and was permanently out of use, resulting in particularly bad overcrowding with the drugs being given out in one small room by a row of workers all of whom were wearing facemasks. We were told the facemasks were because of the number of HIV positive people who had drug resistant TB.
There were plans but no money for an extension to the hospital, and AVERT eventually after much further discussion provided funding of £3,000 for this.44 Unfortunately we never got the chance to visit the new AVERT clinic as our partnership with SANGRAM ended in 2008. By that time, with less money available, the AVERT trustees had decided to concentrate their efforts on countries with a particularly high rate of HIV infection, rather than also including those with a rapidly increasing rate of infection. It was in any case being increasingly claimed by the Indian authorities that the levels of HIV infection in India were lower than previously thought.
back to top The Bishop’s AIDS Hardship Fund
The Raphael Centre which we had been funding since 2002 was certainly in an extremely high prevalence area in the Eastern Cape of South Africa, and they had informal links with the Anglican church and particularly with the Diocese of Grahamstown whose office was located just a short walk from the centre. AVERT is not a "faith based" organisation, but works with organisations and people of all faiths, and indeed none, as and when the opportunity arises.
The Children of Ilinge
On our visit to Grahamstown in 2004 the bishop mentioned a trip he had recently made to Ilinge. Ilinge is a village not recorded on most South African maps, to which in the apartheid era people were sent on internal exile when they were released from Robin Island. As many people in the area did, the people of Ilinge had turned to the church for help, as a last resort when they were unable to provide even bread for the 300 children in the town that had been orphaned by AIDS.
The bishop, Thabo Makgoba, had immediately gone to visit them when he heard the news and we learnt that a small amount of money had been sent to them. However, on our return to the UK we learnt that this money was only sufficient to feed the children for about a month.45
Setting up the Hardship Fund
We asked some further questions not only about the cost of helping the children at Ilinge, but also what other emergency needs there were in the diocese in relation to HIV/AIDS, the diocese being a very large area covering the middle third of the Eastern Cape. Thabo was to describe the situation in the diocese in the following way:46
"People are dying like flies, to put it crudely."
and
"Priests are spending time at funerals, setting up home-based care for parishoners, spending time helping child-led families because parents have died."
As a result the trustees of AVERT (the people often referred to as "we" in this history) decided to set up an "AIDS Hardship Fund" which could be spent entirely at the discretion of the bishop.
By this time at the end of 2004 we were starting to plan the setting up of the Sisonke project, which was going to have a particular focus on assisting small organisations and groups, and so it was agreed that the Hardship Fund would focus on individuals.47
The Bishop's Hardship Fund
The Hardship Fund operated very successfully for several years. Amongst other emergency needs it gave help for was the cost of funerals for people who had died of AIDS.48
"We used R1,000 for the funeral parlour and an extra R2,000 on the funeral expenses and related things. It was very sad to see Monica die and the family now has broken apart."
Some families were in such a desperate state when several family members had died, that they were leaving a body at the side of a road in the hope that it would be collected by the municipal authorities before the wild animals came and ate it. Another example from one of the reports we received is:49
"This sixteen year old was raped and is in a wheelchair and is HIV positive"
Thabo was remarkably accessible to his parishioners and one day when we were on one of our visits, we were at the diocese office and he suddenly said, "would you like to visit some people you have helped?" So he drove us out of Grahamstown to a group of shacks and took us into one where there were three orphans having to fend for themselves. There was little furniture, a bare floor and two plastic chairs. The chairs were dusted off and Pete and I were invited to sit down. Pete offered his chair to Thabo who to our astonishment promptly said he was OK and sat down on the floor for the entire conversation, which he translated for us. We weren’t very used to meeting bishops, and even less were we used to meeting a bishop who sat on a dirty mud floor when talking to his parishioners!
The hardship fund continued until in 2008 Thabo Makgoba left Grahamstown when he became the Anglican Archbishop of Cape Town and Metropolitan of the Anglican Church of Southern Africa.50 But the hardship fund is still having an effect today with the Archbishop recently saying:51
"I am the one that must say thank you for the practical help back then. Some are still benefiting from my discretionary fund from then and some sadly died."
back to top The Sisonke Project
We saw the Hardship Fund as a short term response to the immediate and very urgent needs that people had as a result of HIV/AIDS. However even before the start of the Hardship Fund in 2004 we were thinking about how we could help develop longer term and more sustainable solutions.
We heard that it was not just in Ilinge but in a number of other villages, that groups of people were coming together wanting to do something about the impact that HIV/AIDS was having on their community, and they were asking the church for help. We believed that the ideas and the action had to predominately come from the people and the communities themselves, but could we help the church to assist people in finding and putting into action their own solutions?
There were some groups that were already helping to care for orphans or to provide home based care, and we thought that maybe some of these groups could be helped to do more. We talked to the Bishop who was delighted at the idea of a project that would help the church to respond to people, but how could it be organised?
Planning Sisonke
to help small community organisations and groups to respond more effectively and vigorously to HIV/AIDS in their communities
We spent many hours talking to various people in the church community, as well as talking to people connected with the Raphael Centre, and a plan was slowly developed. The intention was to have a development worker, who would organise the project, and who would go and talk to the groups in the villages about the problems they faced, and what they thought could be done.
There would also be a small fund to provide grants to the groups when they had decided what action they wanted to take to help themselves. The aim of the project was more formally stated as being:52
"to help small community organisations and groups to respond more effectively and vigorously to HIV/AIDS in their communities."
The word Sisonke means togetherness in Xhosa, the main dialect of the Eastern Cape, and this was the name suggested by some of the HIV positive women who attended the Raphael Centre, after they learnt that the project was about people and communities working together to help each other.
Before the project got going a number of people asked me what the grants would be spent on. Of course the answer was that it depended on what people wanted to do. Fortunately the AVERT trustees were supportive of the idea that we could set up a fund when we didn’t know what the money was going to be spent on.
A faltering start
The Anglican Diocese of Grahamstown covers a very large part of the central portion of the Eastern Cape, from East London on the coast in the south, to Aliwal North in the north by the Free State border. The Bishop was very keen that the project should be based in the more northern part of the Diocese and this is what was originally done. However all sorts of difficulties arose, and although the work of contacting and having discussions with various groups had started, after a year or so Sisonke was restarted in the south.
The Department of Social Responsibility (DSR)
The Diocese is committed to, amongst other things, the empowerment of the disadvantaged, and the Diocesan Department of Social Responsibility (DSR) helps to put this into practice through a number of projects and programmes.53 DSR is based in the southern part of the diocese near King William’s Town, and we had already met its Director Tony Schnell. It was at DSR under Tony’s direction that Sisonke was restarted in 2005/6. At about the same time it had been decided that most of the diocesan HIV/AIDS initiatives would be collected together at DSR, and AVERT provided funding for additional staff in order that other HIV/AIDS activities could also be further developed.
This was a time of enormous activity with the HIV/AIDS work in the diocese. The number of deaths and the level of sickness was enormously high, but the antiretroviral drugs were starting to be provided.
Sad times
Pete and I were also facing issues of sickness and death, as our eldest son Jason was diagnosed with cancer in 2004, and suddenly died in 2006. Amongst the many emails sent to us by friends and colleagues from abroad was one from Tony Schnell that included the following.54
"There are literally thousands of people, who although unknown to you, are nevertheless finding new hope and solutions because of the contribution of AVERT. These people are living and dying with HIV, but are being helped to find significance, greater health and hope. Thank you for this. It means more than I can actually ever tell you."
The Sisonke work with the groups really flourished after it was restarted, but meanwhile there was much else going on at AVERT.
back to top AVERT.org
A time of enormous growth
This was a time of enormous growth in the number of visitors to the site and the number of pages that were read, and by the autumn of 2005 about 450,000 pages were being read each week by more than 150,000 people.55 56 We had developed an understanding of the seasonal fluctuations in the number of visitors to the site with the peak being the week of World AIDS Day, when in 2005 more than 800,000 pages were viewed.57
By 2005 I had a team of five people working on the site but there was little guidance available as to how to manage large information sites. Sometimes I found it difficult to know what to do next on the site:58
"The range of people it seems to reach is enormous, but sometimes I feel that I am drowning in information about HIV/AIDS and it is hard to know what to prioritise."
Compliments, complaints and new content
This was a time of recognition and compliments for AVERT.org. In 2005 AVERT won first prize, for AVERT.org, in the British Medical Association Patient Information Awards. In addition the following were amongst the many compliments received.59
"I don’t recall ever seeing such a comprehensive, well organized, rich and well-written site on any health topic. Perhaps some of the UN or major foundation sites have a bit more pizzazz, and the various government sites have tons of details (and a huge staff no doubt) but in terms of hard info, clearly presented, nothing matches AVERT." Barry Youngerman, Author
and
"I have been researching for a BBC documentary on AIDS in Africa, and I just wanted to say thanks for an excellent site, extremely comprehensive and balanced. You are doing a really good job informing people about the issues." Andrew Bryson, BBC4 Current Affairs
There were just a few people who got upset about some of the things that we had on the site. We had developed a set of quizzes, often used in schools as well as by individual young people. Sometimes teachers didn’t first get approval from the school authorities to use them, and then there could sometimes be problems. One such occasion was when a school in Baltimore, America, used the quizzes and I found myself having to defend their use to the American press.60 61
adults got upset about young people wanting to know about oral sex
Topics that had previously been written about in AVERT’s booklets for young people, were now written about on the Teens section of avert.org, and adults were still getting upset about certain topics that we were writing about. In 1989 in England adults got upset about young people wanting to know about oral sex, and in 2007 in Chicago, USA, adults also got upset.62
A new feature of the site developed at this time was a searchable photo library and this attracted a large numbers of visitors. For many years there had been very few pictures of African HIV positive people available, and the pictures of the people at the Raphael Centre were to be widely used by journalists.
back to top World AIDS Day
The first World AIDS Day had taken place on 1st December 1988, and AVERT has marked the day every year since then. What we did depended not only on the message that we as an organisation wanted to put across, but also any theme that had been set, as well as what events were taking place organised by other people. In 1990, with the theme set by the World Health Organisation being "Women and AIDS", we published the first edition of our "Women Talking about AIDS" booklet.
In 1996 World AIDS Day had a particularly high profile, and we gave away or sold a total of over 150,000 red ribbons, and over 1,000 education packs were sent out to organisations holding events.63 64 It was also a useful time for fundraising, with a dozen or more events being held that gave some or all of the money that they raised to AVERT.
To mark World AIDS Day in 2002, a service was held at St. Paul’s Cathedral, London, and candles were lit to remember those who had died. I lit a candle for each person who had attended the Raphael Centre in South Africa and who had died that year.65 The same year during the week of World AIDS Day, a photographic exhibition was held at the headquarters of the United Nations (UN) in New York. At the request of the UN we supplied them with pictures from AVERT.org, for them to use in the exhibition.66
Then as the website had grown having a page on it about World AIDS Day had become important, though this didn't mean that we didn't do anything else, whether on or off the site.To mark World AIDS Day 2006 we put a black border on every page on the site and we explained that these borders were because of the number of people still dying from AIDS in South Africa.67
back to top Advocacy for Antiretrovirals
When we first started our partnership with the Raphael Centre in 2001 it seemed inconceivable that the millions of HIV positive people in Southern Africa and elsewhere, would be able to have the antiretroviral drugs they needed to save their lives. But enormous international pressure started to develop for the provision of antiretrovirals in developing countries.
as close as possible to universal access to treatment for all who need it by 2010
It was beginning to be considered unacceptable to allow millions of people to die from AIDS when the drugs were available to save them, and not only the work of NGOs, but also initiatives such as the WHO "3 by 5" campaign were beginning to have an impact.
The promise of drugs – the G8 at Gleneagles
The momentum for universal access to the drugs culminated in the various events at the time of the G8 summit at Gleneagles in 2005. Millions of people came together in a global campaign, and the result was that the G8 said that they would try to get:68
"as close as possible to universal access to [HIV/AIDS] treatment for all who need it by 2010"
back to top National Rural Health Initiative (RHI)
Through AVERT.org we began to hear from other organisations involved in HIV/AIDS work in Southern Africa, and in 2004 we first heard from RHI. The RHI was a programme under the auspices of the South African Academy of Family Practice, and it had the aim of supporting health care delivery in rural areas of South Africa.
They weren’t particularly the type of organisation that AVERT was aiming to support as they were mainly concerned with hospital projects rather than community organisations. However, it was clear that the role of rural hospitals was going to be critical if HIV positive people in the rural areas were going to be able to have antiretrovirals, which were just beginning to be available in the urban areas and which had been promised for everyone at Gleneagles.
back to top Supporting the rural hospitals - Tintswalo
Tintswalo was the first of two hospitals that RHI put us in contact with as being hospitals that wanted to improve their HIV/AIDS work and where the need was quite simply enormous. Tintswalo hospital is in Limpopo and serves the densely populated peri-urban Bushbuckridge region which is home to almost one million people. There was clearly an enormous unmet need for HIV treatment, along with most other treatment, with the following being typical of what was being written at the time about Tintswalo.69
"There are queues everywhere – for admission, for treatment, and even at the dispensary for medicine. People come here at 05:00, but hundreds go home again at night without having been helped."
In 2005 AVERT agreed to provide some funding for palliative care training for some health care workers, some community outreach education on HIV/AIDS and also the employment of some lay counsellors at the Rixile HIV clinic at Tintswalo.70
The funding seemed justified on the basis that large scale American funding through the PEPFAR program was beginning to be provided, which was going to be used to help an increasing number of people with HIV to have antiretrovirals. The funding from AVERT would we believed allow this funding to reach a much larger number of people. An intern visiting Rixile in 2009 was to say that:71
"This model where lay people are supporting the scientific community in delivering treatment is the emerging model for successful treatment programs in Africa, and it should undoubtedly be extended elsewhere."
The AVERT funding was to be continued for several years at which time we started the Mpfuxelelo project. This had the same general areas of focus being PMTCT, VCT, TB/HIV and ARV services, but at a time of increased PEPFAR funding it was more about actively improving demand for services through patient empowerment, and increasing access through health services linkages.72 Meanwhile there was a second hospital that we were to be involved with and which was going to result in amongst other things, what was possibly AVERT’s most successful advocacy work.
References back to top
- Letters and papers from Professor Janossy to AVERT 5th March 2001
- Letter to Professor Janossy 30th March 2001
- New Trends in Affordable CD4+ T-Cell Enumeration by Flow Cytometry in HIV/AIDS
- Letter from Dr Gaby Verauteren to Dr George Janossy 26th September 2002
- Letter from Professor George Janossy to Professor Chain, December 22nd, 2002
- Letter from Professor George Janossy to Dr Vercauteren October 3rd 2002
- Letter from Dr Gaby Verauteren to Dr George Janossy 3rd October 2002
- Letter from Dr Jorge Barreto to Annabel Kanabus 26th February 2003
- Letter from Dr Jorge Barreto to Annabel Kanabus 8th May 2003
- Letter and budgets from Ilesh Jani to Annabel Kanabus 21st August 2003
- Correspondence between George Janossy and Annabel Kanabus 14th May 2004
- Letter from Ilesh Jani to Annabel Kanabus 21st September 2003
- Letter from Annabel Kanabus to Ilesh Jani 9th January 2004
- Annual review 2005
- Establishment of capacity for the laboratory monitoring of HIV disease January to December 2004
- Ilesh V. Jani MD PhD
- Mozambique National Institute of Health
- Mozambique: Technology revolution hits HIV Testing and Treatment 25th October 20101
- Letter from Annabel Kanabus to Kevin Kelly 2nd April 2002
- AVERT Trustees Meeting 2nd July 2001
- AVERT Trustees Meeting 18th February 2002
- AVERT Annual Review 2002
- AVERT Annual Report and Accounts 2003
- Letter from Annabel Kanabus to Simon Forrest 9th December 2003
- Privolzhsky Okrug AIDS Control and Prevention Center
- Email from Annabel to HLSP 18th June 2002
- Special Training for School Teachers as a Pre-requisite to Successful HIV/AIDS Prevention among Adolescent Schoolchildren – RUS061
- Special Training for School Teachers as a Pre-requisite to Successful HIV/AIDS Prevention among Adolescent Schoolchildren – RUS061
- School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 1st Quarter
- School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 1st Quarter
- School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 2nd Quarter and program of stay
- School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 3rd Quarter
- School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for April 2004 6th Quarter
- AIDS & Human Rights in India: Meeting with Meena Seshu 15th October 2003
- AVERT Annual Review 2005
- Do you know the names they have for us? We aren’t human beings Pamela Philipose Indian Express Newspapers 1999
- Of veshyas, vamps, whores and women SANGRAM
- Epidemic of Abuse Police Harassment of HIV/AIDS Outreach Workers in India Human Rights Watch 2002
- Women in India’s trafficking belt Meena Menon
- Abandoned, Devadasis hit AIDS dead end Reshma Patil The Indian Express 4th December 2003
- Epidemic of Abuse Police Harassment of HIV/AIDS Outreach Workers in India Human Rights Watch 2002
- Mobs hound CSWs engaged in anti-AIDS drive The Times of India 20th February 2002
- Raids, rescues and unseen realities SANGRAM press release 25th October 2005
- AVERT Overseas Projects January 2006
- Email from Annabel Kanabus to the diocesan secretary 27th October 2004
- Our ministry is to the dying, Marites N. Sison, Anglican Journal
- Email from Annabel Kanabus to the diocesan secretary 12th January 2005
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- Archbishop Thabo Makgoba 14th October 2012
- Sisonke Community AIDS Action Program, AVERT 2005
- Profile of the Diocese 2003 150 years
- 2007 The Work of AVERT, AVERTing HIV and AIDS
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- Web Pages 2004 - 2006
- Email from Annabel Kanabus to Kevin Kelly 2nd March 2005
- 2007 The Work of AVERT, AVERTing HIV and AIDS
- Arundel teacher is moved after parents dispute sex-ed questions
- Teacher reassigned after complaints about sex education quiz
- Tracy Dell’Angela, Parents fume over salacious sex lesson, Chicago Tribune, March 10 2007
- West Sussex County Times 29th November 1996
- AVERT Trustees Meeting 14th January 1997
- Email from Annabel Kanabus to Annalie van Niekerk 18th November 2002
- AVERT Trustees Meeting 11th December 2002
- Email from Annabel Kanabus to Joi Danielson 17th November 2006 2005
- G8 Gleneagles Communique 2005
- Hospital conditions ’shocking‘ www.news24.com
- Email from Annabel Kanabus to Jannie Hugo 29th June 2005
- 2008 Health Grand Challenge Internships, David Laslett
- Reviving the essence of Positive Living for Rural People Living with HIV/AIDS in the Antiretroviral Therapy Era March 2008