The Sisonke Project
We saw the AIDS 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. They were asking the church for help. We thought that the ideas and actions had to come predominately 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. 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 the Sisonke Project
We spent many hours talking to various people in the church community, as well as talking to people connected with the Raphael Centre. Slowly a plan was developed. The plan was to have a development worker, who would organize the project. They would go and talk to the groups in the villages about the problems thay 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 themlseves. The aim of the project was more formally stated as being:
"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. This was 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 could 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 exactly what the money was going to be spent on.
A faltering start
The Anglical Diocese of Gramhamstown 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 amd 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. DSR is based in the southern part of the diocese near King William's Town. 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. 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 at the diocese. The number of deaths and the level of sickness was enormously high, but the antiretroviral drugs were starting to be provided.
Pete and I were also facing issues of sickness and death, as our eldest son Jason was diagnosed with cancer in 2004. He died suddenly in 2006. Amongst the many emails sent to us by friends and colleagues from abroad was one from Tony Schnell that included the following.
"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 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."
Nothing could ease the pain we felt at Jason's death, but it was very nice of Tony to write in this way. The Sisonke work with the groups really flourished after it was restarted. But meanwhile there was much else going on at AVERT.
A time of enormous growth
This was a time of enormous growth in the number of viistors to the site. As well as the number of pages that were read. By the autumn of 2005 about 450,000 pages were being read each week by more than 150,000 people. We had developed an understanding of the seasonal fluctuations in the number of visits to the site. The peak being the week of World AIDS Day. In 2005 more than 800,000 pages were viewed.
By 2005 I had a team of 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.
"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. It is somewhat ironic that the complimentary site, TBFacts.org about TB, also written by Annabel Kanabus, has been downgraded by Google because it has not been written by doctors!
The following were among the many compliments received.
"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"
"I have been researching for a BBC documentary on AIDS in Africa, and I just wanted to say thanks for an excellent site, extremely comprehenive and balanced. You are doing a really good job informing people about the issues" - Andrew Bryson, BBC4 Currrent 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.
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. Adults were still getting upset about young people wanting to know about oral sex. In 2007 in Chicago, USA, adults also got upset.
A new feature of the site developed at this time was a searchable photo library and this attracted a large number of visitors. For many years there had been very few pictures of African HIV positive people available. The pictures of the people at the Rapael Centre (taken and used with their consent) were to be widely used by journalists.
World AIDS Day
The first World AIDS Day had taken place on 1st December 1988. AVERT had marked the day every year since then. What we did depended not only on the message that we as an organisation wanted to put accross, but also any theme that had been set. As well as the events that were taking place organised by other people. In 1990 the theme set by the World Health Organisation was "Women and AIDS". This was when 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. Over 1,000 education packs were sent out to organisations holding events. 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 in London. 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. 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.
Then as the website had grown, having a page on it about World AIDS Day had become important. Although 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. We explained that these borders were because of the number of people still dying from AIDS in South Africa.
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.
It was beginning to be considered unacceptable to allow millions of people to die from AIDS when the drugs were available to save them. 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 various events being held at the time of the G8 summit at Gleneagles in 2005. Millions of people came together in a global campaign. The result was that the G8 said that they would try to get:
"as close as possible to universal access to [HIV/AIDS] treatment for all who need it by 2010"
National Rural Health Initiative (RHI)
Through AVERT.org we began to hear from other organisations involved in HIV/AIDS work in Southern Africa. In 2004 we first heard from RHI. The RHI was a program under the auspices of the South African Academy of Family Practice. 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 hopitals was going to be critical if HIV positive people in the rural areas were going to be able to have antiretrovirals. They were just beginning to be available in the urban areas and at Gleneagles they had been promised for everyone.
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. They were also hospitals where the need was quite simply enormous. Tintsawlo hospital is in Limpopo and serves the densely populated peri-urban Bushbuckridge region. This area is home to almost one million people. There was clearly an enormous unmet need for HIV treatment , along with most other treatment. The following was typical of what was being written at the time about Tintswalo:
"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. As well as some community outreach education on HIV/AIDS and also the employment of some lay counsellors at the Rixile HIV clinic at Tintswalo.
The funding seemed justified on the basis that large scale American funding though the PEPFAR program was beginning to be provided. This was going to be used to help an increasing number of people with HIV to have antiretroviral treatment. 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:
"This model where lay people are supporting the scientific community in delivering treatment is the emerging model for successful treatment programs in Africa. 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 area 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. As well as increasing access through health services linkages. 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.
Have a look at AVERT's work in supporting AIDS orphans.
This page was last updated in April 2020
Author Annabel Kanabus