AIDS work overseas | Mozambique, Russia & India

Ilesh Jani's 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 Dr Jani 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 Ilesh 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

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

The HIV monitoring laboratory 2004

The HIV monitoring laboratory 2004

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

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.

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.13 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. 14

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.15 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.

HIV teacher training in Russia

HIV teacher training in Russia

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.16

Some visits

Annabel and Pete, with interpreters, talking to a prison guard about HIV in Russian prisons

Annabel and Pete, with interpreters, talking to a prison guard about HIV in Russian prisons

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.17

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.18

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.19

Teaching the young people

Young people in Russia learning about HIV through drama

Young people in Russia learning about HIV through drama

The teachers started using their new skills in providing HIV/AIDS education for 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.20 This was much the same result that we had found way back in 1988 when we had carried out our survey of young people's knowledge of sex and AIDS 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.21

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.22 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

The doctor at one of the clinic points alongside a truck stop

The doctor at one of the clinic points alongside a truck stop

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.23 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.24 Rather than continuing to label these women as victims, SANGRAM started a peer based condom intervention program with women in prostitution.25

Members of VAMP with Meena Seshu (in green) together with the son of one of the sex workers

Members of VAMP with Meena Seshu (in green) together with the son of one of the sex workers

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.26 Some of these women were devadasis, meaning that their families had dedicated them to the service of a goddess.27 28

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.29 A local political leader claimed that:30

"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

Demonstrating condom use to truck drivers

Demonstrating condom use to truck drivers

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.

The red light district

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.

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.31

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.

ARV centre at Sangli civil hospital funded by AVERT

ARV centre at Sangli civil hospital funded by AVERT

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.32

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.

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

Children in Ilinge, many of whom had been orphaned by AIDS

Children in Ilinge, many of whom had been orphaned by AIDS

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.33

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:34

"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."

Trustees meeting at AVERT 2004

Trustees meeting at AVERT 2004

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.35

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.36

"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 of the effect on families was:37

"This sixteen year old was raped and is in a wheelchair and is HIV positive"

Bishop Thabo Makgoba with some beneficiaries of the hardship fund

Bishop Thabo Makgoba with some beneficiaries of the hardship fund

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.38 But the hardship fund is still having an effect today with the Archbishop recently saying:39

"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."

Meanwhile the Sisonke AIDS project was developing into a very significant project for AVERT.

References

  1. Letters and papers from Professor Janossy to AVERT 5th March 2001
  2. Letter to Professor Janossy 30th March 2001
  3. New Trends in Affordable CD4+ T-Cell Enumeration by Flow Cytometry in HIV/AIDS
  4. Letter from Dr Gaby Verauteren to Dr George Janossy 26th September 2002
  5. Letter from Professor George Janossy to Professor Chain, December 22nd, 2002
  6. Letter from Professor George Janossy to Dr Vercauteren October 3rd 2002
  7. Letter from Dr Gaby Verauteren to Dr George Janossy 3rd October 2002
  8. Letter from Dr Jorge Barreto to Annabel Kanabus 26th February 2003
  9. Letter from Dr Jorge Barreto to Annabel Kanabus 8th May 2003
  10. Letter and budgets from Ilesh Jani to Annabel Kanabus 21st August 2003
  11. Correspondence between George Janossy and Annabel Kanabus 14th May 2004
  12. Letter from Ilesh Jani to Annabel Kanabus 21st September 2003
  13. Privolzhsky Okrug AIDS Control and Prevention Center
  14. Email from Annabel to HLSP 18th June 2002
  15. Special Training for School Teachers as a Pre-requisite to Successful HIV/AIDS Prevention among Adolescent Schoolchildren – RUS061
  16. School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 1st Quarter
  17. School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 1st Quarter
  18. School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 2nd Quarter and program of stay
  19. School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for 2003 3rd Quarter
  20. School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Progress Report for April 2004 6th Quarter
  21. School-based AIDS and Drug Use Prevention in Nizhny Novgorod Teenagers (RUS061) Project Final Reports 2004
  22. AIDS & Human Rights in India: Meeting with Meena Seshu 15th October 2003
  23. AVERT Annual Review 2005
  24. Do you know the names they have for us? We aren’t human beings Pamela Philipose Indian Express Newspapers 1999
  25. Of veshyas, vamps, whores and women SANGRAM
  26. Epidemic of Abuse Police Harassment of HIV/AIDS Outreach Workers in India Human Rights Watch 2002
  27. Women in India’s trafficking belt Meena Menon http://www.twnside.org.sg/title/belt-cn.htm
  28. Abandoned, Devadasis hit AIDS dead end Reshma Patil The Indian Express 4th December 2003
  29. Epidemic of Abuse Police Harassment of HIV/AIDS Outreach Workers in India Human Rights Watch 2002
  30. Mobs hound CSWs engaged in anti-AIDS drive The Times of India 20th February 2002
  31. Raids, rescues and unseen realities SANGRAM press release 25th October 2005
  32. AVERT Overseas Projects January 2006
  33. Email from Annabel Kanabus to the diocesan secretary 27th October 2004
  34. Our ministry is to the dying, Marites N. Sison, Anglican Journal
  35. Email from Annabel Kanabus to the diocesan secretary 12th January 2005
  36. Report on the expenditure of the Hardship Fund 2nd August 2006
  37. Report on the expenditure of the Hardship Fund 13th February 2007
  38. Episcopallife online 26th September 2007
  39. Archbishop Thabo Makgoba 14th October 2012

Top of the page