Sisonke Project | Community response to AIDS

The Sisonke HIV & AIDS 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

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:1

"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)

Tony Schnell, Bishop Thabo Makgoba, Pete, Annabel and a member of the bishop's staff

Tony Schnell, Bishop Thabo Makgoba, Pete, Annabel and a member of the bishop's staff

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.2 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.3

"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.

AVERT.org 2004 - 2006

Promoting AVERT.org circa 2005

Promoting AVERT.org circa 2005

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.4 5 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.6

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:7

"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 compliments and recognition for AVERT.org with the following being amongst the many compliments received.8

"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

Pete, as chairman of the trustees, accepts the BMA award for AVERT.org

Pete, as chairman of the trustees, accepts the BMA award for AVERT.org

In 2005 AVERT won first prize, for AVERT.org, in the British Medical Association Patient Information Awards.

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.9 10

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.11

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.

2004 – 2006 An Expanded Laboratory in Mozambique

Ilesh Jani talking to a member of his staff in the HIV laboratory 2005

Ilesh Jani talking to a member of his staff in the HIV laboratory 2005

In January 2004 new budgets were agreed for the laboratory 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.12

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

Annabel visiting the laboratory in 2005

Annabel visiting the laboratory in 2005

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.13 In the second part of the year the Department of Immunology became the National Reference Laboratory.14

In 2005 Peter and I went to visit Ilesh, and we were 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!

But the main aim of the visit was to see the laboratory, and as we stood in the doorway Ilesh said:

"If it wasn’t for you and AVERT none of this would be here."

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. 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.15 16 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:17

"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

World AIDS Day

AVERT World AIDS Day poster 1990s

AVERT World AIDS Day poster 1990s

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.18 19 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.

A volunteer folds red ribbons to go in World AIDS Day education packs

A volunteer folds red ribbons to go in World AIDS Day education packs

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.20 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.21

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.22

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, 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:23

" 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, 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.

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.24

"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."

Annabel at Tintswalo hospital with Mosa, the Director of the Mpfuxelelo project and Realise, the project coordinator

Annabel at Tintswalo hospital with Mosa, the Director of the Mpfuxelelo project and Realise, the project coordinator

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.25

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. Later an intern visiting Rixile was to say that:26

"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.27 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.

You can learn more about the Tholulwazi Uzivikele organisation and about the AIDS orphans.

References

  1. Sisonke Community AIDS Action Program, AVERT 2005
  2. Profile of the Diocese 2003 150 years
  3. 2007 The Work of AVERT, AVERTing HIV and AIDS
  4. Web Pages 2003 - 2005
  5. Annual Report and Accounts 2005
  6. Web Pages 2004 - 2006
  7. Email from Annabel Kanabus to Kevin Kelly 2nd March 2005
  8. 2007 The Work of AVERT, AVERTing HIV and AIDS
  9. Arundel teacher is moved after parents dispute sex-ed questions
  10. Teacher reassigned after complaints about sex education quiz
  11. Tracy Dell’Angela, Parents fume over salacious sex lesson, Chicago Tribune, March 10 2007
  12. Letter from Annabel Kanabus to Ilesh Jani 9th January 2004
  13. Annual review 2005
  14. Establishment of capacity for the laboratory monitoring of HIV disease January to December 2004
  15. Ilesh V. Jani MD PhD
  16. Mozambique National Institute of Health
  17. Mozambique: Technology revolution hits HIV Testing and Treatment 25th October 2010
  18. West Sussex County Times 29th November 1996
  19. AVERT Trustees Meeting 14th January 1997
  20. Email from Annabel Kanabus to Annalie van Niekerk 18th November 2002
  21. AVERT Trustees Meeting 11th December 2002
  22. Email from Annabel Kanabus to Joi Danielson 17th November 2006 2005
  23. G8 Gleneagles Communique 2005
  24. Hospital conditions ‘shocking’ www.news24.com
  25. Email from Annabel Kanabus to Jannie Hugo 29th June 2005
  26. 2008 Health Grand Challenge Internships, David Laslett
  27. Reviving the essence of Positive Living for Rural People Living with HIV/AIDS in the Antiretroviral Therapy Era March 2008

Top of the page