Starting an overseas program
Since the start of AVERT the charity had worked in the UK, although many publications had been sent abroad. However, since about 2000 there had been increasing discussion in the AIDS community about the high levels of HIV infection outside the UK and particularly in parts of sub-Saharan Africa. The trustees of AVERT had previously thought that there was little we could do to help, but with £100,000 no longer needed for the publications program and influenced by statements such as that below by Justice Edwin Cameron, we decided in the autumn of 2000 to set up an overseas program.
"This not a time for indecision and prevarication.
It is not a time for preoccupation with supposedly insuperable difficulties. Nor is it a time for indefinite plan making.
It is - especially not a time for grandiose schemes designed to attain perfection.
It is unlikely that in our lifetimes we will attain perfection in Africa.
Let us attain something less than prefection in the lives of enough Africans to save them from death by AIDS."
It seemed particularly significant that South Africans were making such statements, because of the impact of AIDS denialism.
AIDS denialism, the view held by some people that HIV was not the cause of AIDS, had existed since not long after HIV was discovered as the cause of AIDS in 1983. A particularly vocal AIDS denialist, and someone who published widely on the subject was Peter Duesberg. Another person who appeared to hold such views was Thabo Mbeki, the president of South Africa. In 2000 Mbeki invited several HIV/AIDS denialists to join his Presidential AIDS Advisory Panel.
Although the practical impact of AIDS denialism seemed limited in the UK, it certainly seemed to be holding up the provision of antiretrovirals in South Africa, and certain other high prevalence Southern African countries. But even if we couldn't help with the provision of antiretrovirals, we could still possibly help with HIV prevention and some aspects of support and care for HIV positive people.
What projects would we fund?
The criteria for the projects that we would fund, were that they should be in areas of particularly high prevalence, or rapidly increasing prevalence, they should be led by local people, and they should include plans for monitoring. The projects would normally be for a period of one or two years and they could receive funding of up to £30,000 a year. We were unclear as to how we were going to find the projects.
The first projects
The first grant was to an organisation called Mother to Mothers to Be (M2M2B). It initially involved providing a service for HIV positive pregnant women at Groote Schuur Hospital in Cape Town, South Africa, and the plan was for this to be expanded to other district hospitals. It didn't perhaps involve as many local people as we wished, and our grant wasn't used quite as planned, but we were pleased to be providing funding at the beginning of what was to become a very large charity called mothers2mothers. It fitted in with our continuing commitment to the subject of the prevention of mother to child transmission.
It was certainly difficult to find suitable projects, but a breakthrough came in July 2001 when I attended an "AIDS Impact" conference in Brighton. I met Kevin Kelly, a South African who worked for an organisation called CADRE. In August 2001 we were to continue our involvement with HIV/AIDS education for prisoners when we provided CADRE with a grant to provide HIV/AIDS education for young offenders through the President's Award, the South African branch of the Duke of Edinburgh Association. The project ran for just a year with funding from AVERT, but then continued on a larger scale with more funding from elsewhere.
Thank you once again for creating an opportunity for us to lay the foundations for what we hope will be a beacon of hope in an otherwide bleak environment" Kevin Kelly 2002
The main result of meeting Kevin Kelly was however to be our involvement over a number of years with the Raphael Centre, which he had described as an innovative community centre which provided support for people with AIDS.
The Raphael Centre
We first heard from Jane Adur, the founder of the Raphael Centre in November 2001. In the initial proposal asking for funding, it was explained how the centre provided help for approximately 18 people living with HIV/AIDS and their children. The centre was effectively a "drop in" day centre providing a meal, skills training in craft making, counselling and general support.
As with many of our projects we had a number of questions about their plans, such as a lack of detail about certain of their proposed activities. But we decided that AVERT would provide them with funding for six months, whilst we "firmed up" some of the details of what they wanted to do. We also wanted their development to be documented, because although funding one local centre was of great help to those who used it, there were a large number of places that also needed such a local centre, and as Kevin Kelly said at the time:
"the value of projects like the Raphael Centre. lies in the creation of practices and models that could be emulated and could give direction to similar projects in other areas"
Shortly after we first provided funding for the Raphael Centre, Jane Adur left Grahamstown. Annalie van Niekerk took over as the first full time manager of the Centre.
Nevirapine and PMTCT
At this time some progress was being made in South Africa with the provision of antiretrovirals, and specifically with the provision of nevirapine for the prevention of mother to child transmission. However, Annalie told us in April 2002, that:
In practical terms I suspect that access to nevirapine will be allowed in the cities and that as usual, the rural areas will be left out. You have no idea how frustrating it is to stand by while the state is effectively murdering people with whom you have close personal bonds. Several of our clients are pregnant. For us this is not an academic issue.
Nevirapine finally became available to the clients of the Raphael centre in January 2003.
Travelling for AVERT
Pete and I first visited the Raphael Centre in August 2002. It was the first of many visits to projects that we were to make for AVERT over the next nine years, not just to South Africa and indeed Southern Africa but we also visited projects in India and Russia.
Sometimes I went abroad to conferences on my own, but when visiting projects the trustees preferred that two people went. It gave us more flexibility in where we could go particularly when travelling in rural areas, whilst still making sure that we stayed safe. It also meant that when I was talking to people at the projects , we had a second person that could be looking around and noticing what was going on.
Pete was the obvious person to accompany me due to his knowledge of HIV/AIDS as well as his knowledge of AVERT's work given his position as chairman of the trustees. He also acted as AVERT's photographer on all our travels. Even if AVERT could have afforded a professional photographer we never knew when the best opportunities for photographs were going to arise.
The Development of the Raphael Centre's work
The general support provided to HIV positive people at the centre was vitally important. Because this was a time when the stigma attached to being HIV positive was extreme. Few people, and particularly very few women, were prepared to say that they were positive. As Xoliswa who attended the centre said:
"We support each other. It doesn't always help having someone who has not experienced it, telling you HIV is not the end of the world. It is so much better to have someone who knows exactly what it is like to live with HIV. Someone who has the same problems, the same pain. To have their sympathetic support really helps."
It was actually remarkable that the centre was quite openly based in an ordinary house in the centre of Grahamstown. However, we wanted during our visit to find out if there were any other services that the centre could provide. So we talked to some of the women who attended the centre. In particular we talked to Thabisa Dyala, the chairperson of the Raphael Centre management committee. Thabisa was HIV positive and had been quite open about it after she had been attacked by her boyfriend. It was the only way she said, that she could escape a destructive relationship, and:
"I'm convinced Annabel, that the more we speak about HIV and AIDS the more we will be helping in making a difference in our communities"
We were really surprised by what Thabisa and some of the other HIV positive women told us. They wanted the centre to provide voluntary counselling and testing (VCT). The reason that this was so surprising is that the general view in England, and indeed in many other more developed countries at the time, was that in Countries such as South Africa people who migh be HIV positive didn't want to be tested. This was because there were no drugs available. It seemed that this was certainly not the case, at least in Grahamstown.
So we decided that during the rest of our visit we would try and find out what was needed for VCT, and also see what could be arranged.
The VCT Service
What was needed for VCT at the centre was:
A nurse to carry out the test,
a counsellor to explain what the test meant,
some test kits,
and then a private room to do the testing.
Before we arrived Annalie had some tentative discussions with some people who might be able to help with the VCT. Rhodes University agreed to provide a nurse for the one afternoon a week that the service was going to be provided. It wasn't thought that the VCT service needed to operate more frequently than this. We agreed that AVERT would fund the counsellors and a partition to divide an exisitng office in two rooms. The health department was going to provide the test kits.
The free VCT service started in September 2002 and from the start it was a success. As a result it was decided from February 2003 that testing would be provided for a second day. However by the spring of 2003 such was the demand for testing, and the number of people being identified as positive, that it was decided that the VCT service would be provided every day.
The centre was almost uniquely places to be accessible to a very wide range of people. It was in a residential area where most of the people who lived were white. But the local poor black people were able to walk there from the township. The more affluent white people such as the students at Rhodes University were also able to walk there, and felt comfortable going in. We saw this accessibility in action on one of our later visits. We first saw the local police turn up and then some solidiers. However we didn't need to worry because all of them had come for testing.
Refocusing the centre
The centre had started by providing a support service for about 20 people with AIDS. Then the VCT service was started and in addition the centre had also increased its community outreach activities by providing weekly HIV/AIDS prevention sessions att school, community groups and churches.
This resulted in far more HIV positive people needing the support that the centre could provide. So by October 2004 the centre had moved from long term support for a few people, to offering training and support to all the people who had been diagnosed through the VCT service provided by the centre. The majority of this support being for a short 6 to 8 week period. During this period the training and support was focused on education and training to allow the HIV positive person to cope with their infection and live longer and better.
AVERT's funding of the Raphael Centre came to an end in September 2005. At this time the Centre was able to get alternative funding from Anglican AIDS. They were also able to then start Nikithemba, a mobile service taking VCT to soem of the outlying rural areas.
In her final report to AVERT, Annalie was to say that the document marked:
"the end of a relationship that allowed the Raphael Centre to progress from a small support group serving few, to an influential HIV and AIDS centre that provides free VCT, PMTCT, education & training, OVC (Orphan & Vulnerable Children) Support, emergency food support and advocacy."
The Ending of the Medical Research Studentships
With the new commitment to AVERT's overseas program, as well as having the website and the information service, it was decided in 2003 that after the current studenships came to an end that no more funding for studentships would be provided. It wasn't the case that there wasn't going to be any more funding for medical research, but the research that we did fund would need to be part of AVERT's overseas program. It would need to take place either in developing countries or with the aim of directly benefiting them.
In general the recipients of the studentships did well, but the standard of applicants was falling. Also, the students didn't on the whole go on to become AIDS researchers. The greatest impact and success of the studentship scheme was actually the award to Ilesh Jani, which was to result in one of AVERT's most successful overseas projects.
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. Our medical research studentship scheme was not designed for those who had already started their Phd, but the AVERT trustees decided we could make an exception fo 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 cost 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 AEVRT would enable him to continue his work on developing the process of doing CD4 tests using the more affordable flow cytometry.
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 agreed that if Dr Jani did not return to Mozambique in the third year, then he would repay AVERT all the money that he had received in the first two years.
Working with the World Health Organisation (WHO)
It was September 2002, and Ilesh was writing his thesis. His supervisor Dr George Janossy received a letter from the head of Blood Safety and Clinical Diagnostics at WHO asking if Ilesh could go and work on a short term contract at WHO. The work that he would undertake at WHO would be to write their guidelines on CD4 T cell monitoring in resource poor countries. He would also organise training workshops on the topic.
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. Their reply to Professor Janossy included:
"Please forward my special thanks to AVERT, as this arrangement will serve our mutual aim of strenthening local capacity." Dr Gaby Vercauteren, WHO
2003 - 2004 Back in Mozambique
By May 2003 Ilesh was back in Mozambique where he was going 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.
It had been requested that Ilesh's third year grant be used for the launch of and the operation of the flow cytometry laboratory. Money for equipment had already been provided by two Spanish organisations. So the grant from AVERT was going to enable the affordable CD4 technology to be established in Mozambique.
Then all went quiet until August when we heard the very sad news of the death of the head of the Depaartment of Immunology. 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. Budgets were then 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.
Very quickly it became clear that additional things were needed for the laboratory. With the promotion of Ilesh to the 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 reasearch looking for appropriate and affordable solutions for the clinical care of HIV/AIDS patients for whom antiretroviral therapy was not yet available.
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. The funding for the second year was provisional as it was hoped that before too long funding would be available from either the Global Fund or 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. It was said that it would:
"Prevent 7 million new AIDS infections, treat at least 2 million people with life extending drugs and provide home care for millions of people suffering from AIDS and for children orphaned by AIDS"
But initially the money was slow in reaching people "on the ground". The money had to firstly go via large American organisations. They 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. In the second part of the year the Department of Immunology became the National Reference Laboratory.
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.By now they 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. 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 at what AVERT achieved in Mozambique, has made 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 discussing the HIV/AIDS work. 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 ongoing benefit today. This is because, writing this in 2013, the laboratory is still operational in Maputo. Ilesh Jani is now the Director of Mozambique's National Institute of Health, overseeing some 104 employees, and with an annual budget of $9 million from PEPFAR.
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:
"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
AVERT.org 2000 to 2003
Alongside developing AVERT's work outside the UK we were also trying to develop our internet work. By 1999 we had started to receive messages of appreciation from people who had learnt a lot about HIV/AIDS from the site. 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 that 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 2001 I was to write that:
"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 devloped the content of the site myself, and this mainly consisted of getting permission from other organisations to use their material on our site. This was in addition to changing the format of AVERT's own material. We were not generally doing much origianl writing. But that started to change in 2001 with the appointment of the first full time writer for AVERT.org. By late 2002 sufficient updating of pages was needed that a second full time writer was appointed. It was important that we wrote for the site in clear simple English and this was appreciated by visitors to the site.
By 2003 there were 75,000 visitors to the site each week. Between them they were accessing 200,000 pages of information. About 8,000 downloads of AVERT's booklets were taking place each week. All of AVERT's booklets were now on the site in PDF format.
During the busiest week of the year around World AIDS Day 2003, the site received an estimated 140,000 visitors. Between them they looked at over 400,000 pages of information.
You might like to read about AVERT's work in India & Russia
This page was last updated in April 2020
Author Annabel Kanabus