AVERT: Early 1990s to the start of the Internet

The history of the AIDS charity AVERT, founded by Annabel and Peter Kanabus.

Annabel writes about how in the 1990s there was work on drug use in prison, and the major development of AVERT's publications program. The coming of the internet and in 1995 the setting up of AVERT.org, followed by the start of AVERT's overseas program in 2000.

back to top The Early 1990s: Praise and projects

AIDS Research

By 1991 the Medical Research Council (MRC) was starting to provide significant funding for AIDS research, but there was an acknowledgement of the role played by AVERT in the funding of AIDS research when I started to be the only member of the voluntary sector invited to the national MRC AIDS research meeting.¹ In 1992 the Chief Medical Officer, Dr Kenneth Calman said that:²

"Education for the general public and for people infected with HIV and their carers is a vital cornerstone of our strategy against AIDS. This must be backed by a programme of high quality, well-directed research. I should like to express my appreciation of the contribution which AVERT is making in this area"

Although it was still important to AVERT that we were funding AIDS Medical Research, we were at the same time funding a number of social research projects. These had the aim of understanding more about the behaviour that put people at risk of HIV infection, and as a result of this understanding we believed that it should be possible amongst other things to produce more effective health education materials.

Drug use in Prison

Following on from our earlier work on prisons and HIV, we now in 1993 started some further work looking specifically at drug use amongst prisoners.³ This study produced detailed qualitative information on drug use and injecting practices within prison and it identified opportunities for, and obstacles to, the development of appropriate policies and practices to prevent the spread of HIV within prisons and reduce other problems related to drug use.⁴

Compulsory testing of prisoners was definitely not one of the appropriate policies identified in the study and we were therefore dismayed when just a few weeks after copies of our report had been sent to the Home Office, the following was said by John Major:^{5 6}

"There will also be a major blitz on drugs in prisons. I want people to come out of prison reformed, not sucked into a sub-culture of drugs. We must choke off the supply of drugs to prisons. .. New powers in the Criminal Justice Bill will allow compulsory drugs testing of inmates."

It was subsequently to be claimed by a number of people, that compulsory testing actually encouraged inmates to change drugs from Cannabis to Heroin and Crack, as Cannabis stayed in your body for the longest period of time, and was therefore most likely to give a positive result to a compulsory drugs test.

In addition to the two main reports published by AVERT, there were many other published papers, as well as significant coverage in the media as a result of AVERT's two projects concerning prisoners, HIV & AIDS, and related areas such as drug use. And although at the time it didn't appear to progress either relevant policies or education, a number of comments made in subsequent years led us to believe that these projects might have had a greater impact that we at first thought.⁷

The situation regarding HIV and prisoners was also for a number of years an important part of AVERT's advocacy work, and we spoke out about this whenever we got the opportunity. This included the time when there was an actual outbreak of HIV infection at Glenochil prison.

Safer sex education with drug users

It was in late 1992 that I unexpectedly got a phone call from the Department of Health asking if we would like to carry out some work with drug users involving safer sex education. The reason that this was so surprising is that whenever in the past we had asked the Department of Health for funding they had turned us down. It seems that someone at the Department had suddenly realised that drugs users not only injected drugs but they also had sex, and that it would help if it was safer sex! Having heard about some of our earlier project work they thought that we might be the people to help, and we did indeed carry then out this project with funding from them, producing a useful training pack for people working in drug services.^{8 9}

Young Gay Men

It was just complete terror that someone would find out

Gay and bisexual men continued to be the group most at risk of contracting HIV infection in the UK, and there was starting to be considerable work looking at the behaviour of adult gay men. However, there had been an alarmingly small number of HIV prevention initiatives targeting young gay men.

So in 1993 we funded a study looking at the HIV prevention needs of young gay men, including those who had come out to very few people, and who were as a result not in contact with any of the limited services for young gay people.¹⁰ The research consisted of a two year longitudinal interview study of sixty young men living in two contrasting areas of the U.K., Norfolk and Manchester.^{11 12}

The words of the young men vividly described some of the difficulties they faced.

"It was just complete terror that someone would find out, that people would be able to tell. I was very paranoid – even in my diary – I wouldn't even write it in there." Phil

A major research report from the project was published by AVERT but it was to be the words of the young men themselves that were to have such a major and lasting impact.¹³

back to top The Young Gay Men Talking Booklet

This booklet was one of the most significant produced by AVERT and the title "Young Gay Men Talking" seemed to make it possible for it to be picked up and read by a very wide range of people whether gay or straight.¹⁴ First produced in 1995 it was made available and avidly read in some of the most unlikely places.

An important aspect of the booklet was that what the young men said was put in context. For example the difficulties they had in "coming out" to their parents. The booklet was also used in many different ways, such as being used by health professionals to help with discussion about the needs of young gay men, and it was also used by teachers to encourage discussion in the classroom.

For what I thought was a specialist booklet the distribution figures were amazing, with more than 130,00 copies distributed.¹⁵ Also, although the booklet design was updated, the words largely stayed the same, and stood the test of time remarkably well. Fifteen years after it was first produced the content of the booklet was still available, largely unchanged, on the avert.org website where it was being read by several hundred people each week. And although all the young gay men were in the UK, their words are also now read and appreciated by people, both gay and straight in many other countries in the world.

Section 28

The booklet was produced at the time of section 28, the part of the Local Government Act 1988, that stated that a local authority:

"shall not intentionally promote homosexuality or publish material with the intention of promoting homosexuality” or “promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship"

Of course Section 28, which has now been repealed, never applied to health education in schools. However, such was the fear of it that for many years it prevented any discussion in the classroom, of almost any issues relating to gay people. The issue of sex education in schools was also further complicated by the Education Act 1993 and circular 5/94 on Sex Education in Schools, which amongst other things said that:

"any sex education must be provided in such a manner as to encourage young people to have regard to moral considerations and the value of family life"

In 1997 AVERT was to develop and publish the book "Talking about Homosexuality in the Secondary School", to further encourage discussion of the issue in the classroom. One of the authors of the book was Simon Forrest, who had helped with other AVERT publications, and who later on was to become a trustee of AVERT.

back to top Having sex!

Following on from the success of the "AIDS & Young People" booklet, in 1994 we produced another leaflet for young people about contraception. Called "Condoms, Pills & Other Useful Things", this booklet was also very popular with more than 150,000 copies being distributed in the first year. It was described by Woman magazine as:¹⁶

One of the best booklets we've ever seen

The name of the booklet came about because I was at a meeting of health education professionals, when I mentioned that we were thinking of producing this booklet. They asked me what it was to be called, and as at that time my knowledge was limited as to which contraceptives were available for young people, I said "Condoms, pills & other useful things", and somehow this title stuck.

The booklet was particularly written for 14 & 15 year olds, because from our research with young people it was clear that contraception was something that many of them needed well before the age of consent.

At that time it was however unknown for sexual health booklets to be produced for young people under the age of consent, and they caused considerable controversy, with a number of people accusing AVERT of encouraging young people to have sex. We were not though the only organisation being criticised for our publications with the Health Education Authority being forced to withdraw "A Pocket Guide to Sex" which the Health Minister claimed was "smutty".¹⁷ None of the criticism deterred us though from trying to help young people to get the sex education we believed that they deserved, and whilst there were some people who criticised what we were doing, there were many others who praised our efforts.

After the booklet on contraception, we then, at the request of some young people, embarked on producing a booklet about "having sex". Some of the young people, who took part in the development of the booklet, did so on the basis that in the new booklet the authors would answer any questions that they had. This was indeed a challenge, but we did in the new booklet manage to answer all the young people's questions, including such difficult ones as "how long does sex last", and "is sex noisy"!

All the booklets for young people took an enormous amount of time to develop, with extensive fieldwork being carried out with young people, and many adults who worked with young people needing to be consulted. It was also not only in the writing of the booklet itself, that it was necessary to be very comfortable in discussing sex, but also in the correspondence that took place. I would never have believed when we started AVERT that I would ever receive a letter that started off with "Thank you for the collection of accounts of orgasm", and that the next day I could be corresponding about drug users in prison!¹⁸

back to top The AVERT Publications Program

By 1994 the publications program had expanded to the extent that we were producing and distributing more than 600,000 booklets a year. We not only had the group of booklets for young people, but there was also the "AIDS & Childbirth" leaflet, the booklet "Women Talking about AIDS", as well as a booklet on "AIDS & Children", and one on "Talking to Teenagers about AIDS". We also had the medical self/help booklets that had started with the booklet on "AIDS Related Dementia", and now also included a booklet on "The Medical Treatment of HIV Infection", as well as one on "Nutrition AND HIV Infection". All these booklets had needed to be carefully researched and written, before being designed, printed and distributed.

Some of them such as the "AIDS & Childbirth" leaflet had been through multiple editions as information on HIV & AIDS changed, and the leaflet was also regularly evaluated.¹⁹ By 1996 it had become the "HIV, AIDS & Pregnancy" booklet, and 750,000 copies had been distributed since it was first produced in 1988.²⁰ It had also been mentioned as an example of good practice in the Department of Health report "Changing Childbirth".²¹

Our books included the "Working with Young People" teaching pack, our book for teachers "AIDS: The Secondary Scene", and reports such as the one on "Drug Use in Prison". We had also worked with both obstetricians and paediatricians to produce two complimentary publications, "A Guide to HIV Infection & Childbearing", and "Guidelines for the Management of Children with HIV Infection". The Royal College of Obstetricians & Gynaecologists supported the first of these two publications whilst the second was written by two paediatricians, Dr Di Gibb and Dr Sam Walters, who worked at two major referral centres for HIV infected children, with publication by AVERT being preferred to publication by the British Paediatric Association.^{22 23}

With all our publications we had to be very aware of all the sensitivities that there were, particularly amongst health professionals, about the use of language in respect of HIV and AIDS. For example, not only were people extremely concerned that nobody should ever use the word AIDS, if using HIV was actually more correct, but in our booklet on HIV testing, the phrase "catching HIV" had to be replaced with "becoming infected with HIV".²⁴

The booklet on HIV testing was an example of a booklet that at first appeared quite straightforward to write. However, there were a number of really difficult issues that had to be included such as the confidentiality of testing, because at this time just the process of having a test could sometimes, regardless of the result, lead to someone being turned down for a mortgage.

Around this time the money received from the sale of publications was more than £130,000 a year, but the overall cost of the publications program was in excess of £180,000 a year, and this didn't include the cost of the major research for some of the publications.²⁵ Many people thought that as a charity we should be giving away all our publications for free, not realising that we simply didn't have the funding to do this.

back to top HIV/AIDS Medical Research

In the early 1990s there was considerable concern about the effect that HIV infection in their mothers might have on the children born to HIV positive women. Dr Frank Johnstone in Edinburgh was one of the few doctors who at that time was looking after a large number of HIV positive women and in 1992 AVERT provided him with a grant of about £50,000 to study the effect that HIV as well as drug use had on pregnancy outcomes.²⁶ The study lasted for three years and this was one of those occasions when what wasn't found was as important as what was found. A large number of papers were published as a result of the study which found that, provided the child was not infected with HIV, neither HIV infection or drug use in the mother had any other significant affect on the woman's child.²⁷

By 1994 AVERT was still funding medical research although the amount had fallen as a proportion of AVERT’s total expenditure. This was partially due to the fact that large funding bodies such as the Medical Research Council were now starting to provide significant amounts of money for HIV/AIDS research. AVERT’s funding still had an emphasis on work concerning HIV positive women and children, and as part of this we were still funding the National Study of HIV in Pregnancy at the Institute of Child Health.

AVERT’s projects were not only contributing to knowledge and improving clinical practice about HIV/AIDS, through articles in peer reviewed and other journals, but the researchers gave presentations at many meetings both in the UK and overseas.

back to top The Coming of the Internet

As we began in 1994 to review our on going funding of medical research, there began to be news about the World Wide Web, but it was only available in London. Then in the summer of 1995 I heard it was available to people near Brighton, so I decided to get connected up to see what it was all about.²⁸ It turned out that getting connected was technically rather more difficult than I expected, but two months later we were able to get online using the BBC Networking Club, although they then almost immediately closed.^{29 30}

As far as AIDS information was concerned there was almost nothing on the Web, just a few American sites explaining what AIDS was. So with World AIDS Day coming up on December 1st, I decided that AVERT would put up some information about World AIDS Day. We firstly had to get our own web address. The charity OneWorld Online was helping a number of charities to get online, and through them we got our first web address http://www.oneworld.org/avert.³¹

Having written what we wanted to put up, there was then the technical challenge of getting the information onto our website. I remember the difficulty that we had putting our first graphic on the site. It was our logo, which we wanted to put at the top of each page, and it took our designer about a day to do it, but he was used to designing booklets, not web sites. But we made it by October 1995, putting up two pages, one about World AIDS Day and one about AVERT.

From the end of 1995 OneWorld was able to provide the figures of how many people read each of our pages. I can’t remember the numbers but they seemed alright at the time. But after World AIDS Day nobody seemed interested. Obviously they were no longer interested in World AIDS Day but they weren’t interested in AVERT either, and in January 1996 I nearly took the site down. But I then thought that maybe people would be interested in our Young People’s booklet, so I took the text and put it on line.

Ten times more people visited this page than either of the other two, and this was clearly the way forward. AVERT’s website was not going to be about AVERT, it was going to be a site for providing AIDS information. So I went on putting further information on the site, including a news page, some statistics, and some quotations from young gay men.³² By April 1996 400 people a week were visiting the site, and in June 1996 NetUser magazine gave us a five star rating.³³

back to top The AVERT Information Service

All of AVERT's charitable work was eventually to be influenced by the coming of the internet, but AVERT's Information Service had to start to change immediately. Our Information Service started in 1988, when after the Government AIDS Campaign there were still many people who had questions about HIV/AIDS, and they were not personal questions that would be answered by the government helpline. As well as responding to individuals who had questions about AIDS, we also helped many other organisations with the articles they were writing. One such example was a Readers Digest article called "AIDS: The Vital Facts" which was published in March 1992.

Initially the questions came by post and phone and we collected information which we kept in filing cabinets to help answer the questions. But once the internet came the Information Service had to answer questions from all over the world which predominately came by email. And although we still collected information, it was soon almost all held electronically.

From the time that the Information Service started, it was clear from the responses we received, that people greatly appreciated the personal and prompt service that we were able to provide. One typical example was:³⁴

"We found your answers very helpful. I appreciate it, and it's good for my students to know that there are health agencies that can answer important questions anytime."

There were many memorable emails sent to the Information Service over the years, but one of the saddest came from a man in Norway who felt that he was responsible for passing on HIV to several people in Africa. He said he was going to commit suicide and he was telling AVERT because he wanted his body to be found. We tried to contact him or the relevant authorities, but we were too late and later on we heard that a body had been found.

But the internet also opened up many opportunities to help people. In the early years of the internet almost no gay support organisations were on line, and there was particular interest in AVERT’s online gay and lesbian information. People particularly needed help and support around holiday periods including at Christmas. At AVERT like most UK organisations we closed for a week or more over Christmas, but for many years I would go in for an hour or two a day, to see if anyone had emailed us asking for help.

a lone voice from the other side of the world

Many young gay men wrote to AVERT at this time of year. Some had decided to tell their families that they were gay and also sometimes that they had AIDS. Sometimes their families had thrown them out of their homes. There wasn’t all that much I could do to help, except to tell them to hang on until after the holiday period, until other services were open, and there would be other people who could help. But often, in a similar way to the HIV positive people who wrote, they wrote back to us saying how helpful it was that I had replied, and somehow it didn’t seem to matter that I was a lone voice from the other side of the world.

back to top Changing Medical Research

It was not just the internet that was changing AVERT’s work, but the drugs had come for the treatment of AIDS, and fewer researchers wanted to carry out medical research projects, particularly the smaller scale clinical projects that AVERT had previously so successfully funded.

We allowed the medical research projects we had previously funded to come to an end, as they reached the end of their funding, and in 1996 we launched a new research initiative, the AVERT AIDS Studentship Scheme. The aim of the scheme was to sponsor gifted individuals to begin their careers in AIDS medical research.³⁵

We provided three medical research studentships each year, and a number of eminent scientists advised the AVERT trustees on the quality of the studentship applications. Areas of research included such exciting and topical areas as the delivery and effectiveness of new drug treatments and the emergence of drug resistant strains of HIV. By 1999 there were nine students in receipt of awards with several due to complete their studies within a year. As a result, and due to a very high standard of applications, four further awards were made to start in 2000.³⁶

back to top The National Study of HIV in Pregnancy and Childhood

The one exception to the ending of the medical research projects was the now renamed study that we had been funding at the Institute of Child Health. This was a national confidential reporting scheme for pregnancies in HIV positive women, the babies born to HIV positive women and other children with HIV infection and AIDS in the UK and Eire.³⁷

This study amongst other things made a major contribution to such issues as the role of antenatal HIV testing policies in preventing paediatric HIV infection, policies which have now resulted in many fewer babies being born with HIV infection than in most other countries.^{38 39} Alongside the journal articles and presentations at meetings, there was also by 1997 a widely circulated newsletter, giving updates on the statistics collected by the project, as well as short articles on related topics.⁴⁰ It was said of this work that:⁴¹

"This study makes a vital and practical contribution to medical research on HIV and AIDS in children, and is unique. The information gathered is used by individual doctors and midwives, by the national professional bodies, by the voluntary sector and by health and social services at local, national and international level."

However there was much more clinical information becoming available in this area, and although important the project was starting to become more routine surveillance. So discussions were held with the Department of Health who in 1998 took over from AVERT the funding of this work.⁴² The study still continues in 2013.

back to top Fundraising, Cowspotting and Offices!

Fundraising

There hasn’t been a lot to say about AVERT’s fundraising, except that I started it almost as soon as we started AVERT, and I continued on and off for the next twenty-five years. Sometimes I had the help of a fundraising assistant, and sometimes I didn’t. But I kept on writing letters and talking to people, and somehow the money came in. For example, in the financial year 91/92 we raised £153,000, and other years around that time were similar.⁴³

I think that it was partly that I believed so much in what we were doing, and the need for it, that this encouraged people to give. But I never really enjoyed fundraising, it was the AIDS work I was concerned about, and so when we had enough money for what we immediately wanted to do I tended to leave the fundraising and concentrate on what we could do about AIDS. Then when we urgently needed more money I would start fundraising again.

Cowspotting

Generally other people held events to raise money for AVERT, but we did decide to hold an event to mark AVERT’s tenth anniversary in 1996. The event was called "Cowspotting" and it was held on the farm where Pete and I lived, although it didn't of course involve live cows! It featured performances from up and coming local bands and club DJs. It was great fun, and it raised AVERT’s local profile as well as raising some much needed money.⁴⁴

Offices

In 1991 AVERT had moved from the farm to some small ground floor offices in Horsham. At this time I had the assistance of just two full time staff and some volunteer help.⁴⁵ The growth in AVERT’s publications program and other work, and the resulting increase in staff, meant that these offices were also outgrown and in 1998, by which time AVERT had eight staff, we moved again to larger premises we had purchased just a few hundred yards away.⁴⁶

back to top The Development of AVERT.org 1997 to 1999

By early 1997 we had about 25 pages on the site, and we decided that we no longer wanted to operate as part of the OneWorld group, but what did we want the new web address to be?⁴⁷ I nearly chose http://www.aids.org, but I knew from my own experience of visiting websites that I sometimes didn’t know who they had been written by, so www.avert.org it was. There was no .uk at the end because from the very start I knew that the site had to be international.

During the week of World AIDS Day 1997, by far the most popular week of the year, over 15,000 pages were read on the site, and in the corresponding week of 1998, with the site having grown to around one hundred pages, the figure was 70,000, which seemed a truly remarkable figure at the time.⁴⁸ The Lancet medical journal commented on the site in November 1998, and NetGuide made us site of the day in February 1999.^{49 50} By March 1999 the figures were 12,000 people visiting the site during an average week and they were accessing over 25,000 pages of information.

By 1998 we had developed a quiz to run on the site, and we also for the first time put one of AVERT’s books on the site, where it could be downloaded and read for free, at the same time as being published in hard copy format.^{51 52} Initially with the website we told people about the booklets and other resources we had available, and with the booklets we offered to send a free copy to anyone interested. However, by 1999 we were finding this impractical as so many of the requests were from overseas resulting in high postage costs, and so we started to put the booklets on the site as well.⁵³ We had also by 1999 begun to realise through some of the messages sent to us just how powerful an educational tool a website could be. Typical messages sent to us were:⁵⁴

"It [avert.org] doesn’t patronize teenagers like most others and isn’t scared to mention certain things. "

and

"excellent, beautiful site! Informative and thorough. Thank you!"

it only cost $0.02 for each click through

Sometimes with the website, and indeed with other things, opportunities arose which if we acted quickly as a small organisation we could achieve things which were no longer possible once larger organisations became involved. Advertising the site on search engines was an example of this. I discovered in 1999 that I could arrange for the AVERT.org home page to come top on a large search engine when people looked for the word AIDS and that it only cost $0.02 for each click through.

I quickly obtained a budget of £1,000 for advertising the site and this was a highly successful way of making the site better known, until a few years later many other people were advertising their sites and it became prohibitably expensive.⁵⁵ We never again paid to advertise the site.

Over a period of just three years the increase in the use of the site had propelled the site to being probably (we knew our own figures during this period but not those for other sites) the most popular HIV/AIDS website in the UK and one of the most popular in the world. AVERT had also as a result started to truly become an international organisation. However there was relatively little discussion about either this or the website at Trustees meetings, probably because we were too preoccupied with coping with the organisational changes required.⁵⁶

back to top The Most Difficult of Decisions

Since treatment became available for AIDS in the mid 1990s, the publications program had been in slight decline and by 2000, with the growth in the internet, we were also beginning to hear that sometimes in a classroom a teacher would use pages printed from the AVERT website, rather than going to the bother and cost of buying in booklets. In contrast the web site was still attracting an increasing number of visitors each year.

It felt like the right course of action for a charity

One problem we had always had with the publications was that as the printing costs were so high (let alone the development costs), we had to charge for multiple copies of booklets and individually for most copies of the books, although we could and did give out many copies for free. Even when we charged it was still less then even the cost of printing, but there were still many people who complained about the cost, and others who simply thought they needn’t pay, and so we had to go to the cost and trouble of endlessly chasing people for payment.

With the website the costs weren’t going to be so high that we needed to charge, and therefore we could put the information up and people, whoever they were, and whatever country they were from could come and read it at no cost. It felt like the right course of action for a charity.

It was unclear how many people would eventually have email and internet access, but the web site rather than the printed publications did seem the way forward. So after much consideration by the trustees of AVERT it was formally decided in September 2000 that the publications program would end at the end of March 2001.⁵⁷ By the time the publications program ended, AVERT had in total produced and distributed more than three million, three hundred thousand booklets and leaflets.⁵⁸

Why was it such a difficult decision?

At AVERT we had spent, and particularly I had spent, many years in building up what appeared to most people to be a very successful publications program. At the height of its success in around 1994/5 we were producing and distributing more than 650,000 booklets a year, along with teaching packs, books and reports.⁵⁹ Why should we now wish to close it down?

In some ways it was the format of the information that was going to change. We planned to put the publications on the website where they could be read for free, by people not only in the UK but also from around the world. With the website we could concentrate on putting up information that would have the greatest possible educational impact, rather than spending the time on dealing with printers, orders, and people who wouldn’t pay.

The great unknown was how many people would eventually have internet access

Of course the great unknown was how many people would eventually have internet access. In the UK the numbers were still very small, but we thought that if one day perhaps a third of people in the UK might have internet access then the decision we were making would be the right one. If we had known then that by 2012 more than ninety per cent of people in the UK and many people around the world, even in developing countries, would have internet access, then the decision would have been so much easier.

Changes in Offices and Staff

It was unfortunate timing that we had moved to larger offices in 1998, and by 2001 we were ending the publications program and needing a smaller amount of space. A variety of options were considered including moving and selling the building, or alternatively converting the storerooms and letting out the spare office space. We eventually decided on the conversion, and that AVERT would move to the converted store rooms in order that the "nicer" area that AVERT had previously occupied could be let for as much rent as possible.

With the ending of the publications AVERT needed fewer staff, but some people left because although they liked working on the printed materials they were not keen to transfer to working on a web site. Others just wanted a change, and so in the end nobody needed to be made redundant.

back to top The Start of AVERT's Overseas Program

Since the charity started AVERT 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.^{60 61}

"This is 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 perfection in the lives of enough Africans to save them from death by AIDS."

AIDS denialism

It seemed particularly important 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.⁶² Another person who appeared to hold such views was Thabo Mbeki, the president of South Africa, who in 2000 invited several HIV/AIDS denialists to join his Presidential AIDS Advisory Panel.

Although the practical impact of 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 could receive funding of up to £30,000 a year. We were unclear as to how we were going to find the projects.⁶³

The first projects

The first grant was to an organisation at that time called Mothers 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, and it fitted in with our continuing commitment to the subject of the prevention of mother to child transmission.⁶⁴

what we hope will be a beacon of hope in an otherwise bleak environment

It was certainly difficult to find suitable projects, but a breakthrough came in July 2001 when I attended an "AIDS Impact" conference in Brighton, and met Kevin Kelly, a South African who worked for an organisation called CADRE.⁶⁵ 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.⁶⁶ The project ran for just a year with funding from AVERT, but then continued on a larger scale with more funding from elsewhere.⁶⁷

"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 otherwise 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.

back to top The Raphael Centre

We first heard from Jane Adur, the founder of the Raphael Centre in November 2001.⁶⁸ 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.⁶⁹

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.⁷⁰ 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:⁷¹

"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 and 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:⁷²

"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 2003.⁷³

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 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, as 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, and few people, and particularly very few women, were prepared to say that they were positive. As Xoliswa who attended the centre said:⁷⁴

"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, and in particular 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.⁷⁵ It was the only way she said, that she could escape a destructive relationship, and:^{76 77}

"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, which was that 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 developed countries at the time, was that in countries such as South Africa people who might be HIV positive didn’t want to be tested, 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 VCT, and 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 into two an existing office, and 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, and as a result it was decided that from February 2003 testing would be provided for a second day.⁷⁸ 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 should be provided every day.⁷⁹

The centre was almost uniquely placed 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, where we saw first the local police turn up, and then some soldiers. However, we didn’t need to be worried because both had come for the testing.

Refocusing the centre

The centre had started by providing a support service for about 20 people with AIDS. Then the VCT service had started, and in addition the centre had also increased its community outreach activities providing weekly HIV/AIDS prevention sessions at schools, community groups and churches.⁸⁰

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.⁸¹

AVERT’s funding of the Raphael Centre came to an end in September 2005, when the Raphael Centre was able to get alternative funding from Anglican AIDS, and they were also able to then start Nikithemba, a mobile service taking VCT to some of the outlying rural areas.⁸²

In her final report to AVERT, Annalie was to say that the document marked:⁸³

"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 and training, OVC (Orphan & Vulnerable Children) Support, emergency food support, and advocacy."

back to top 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 studentships came to an end that no more funding for studentships would be provided.⁸⁴ 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, and taking 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, and 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.

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References back to top

1. Minutes AVERT Trustees Meeting 12th September 1991
2. Letter from Dr Kenneth Calman 6th July 1992
3. Letter from Annabel Kanabus to Gerry Stimson 27th January 1993
4. The Centre for Research on Drugs and Health Behaviour Annual Report 1994
5. Letter from Paul Turnbull to Annabel Kanabus 14th August 1994
6. Speech by John Major on Friday, 9th September 1994
7. Publications arising from AVERT's work
8. Notes for Trustees Meeting January 1993
9. Sexual Health Promotion With Drug Users, 1995
10. Letter from Annabel Kanabus to Dr Maggie MacLure, 27th January 1993
11. The HIV Prevention Needs of Young Gay Men
12. Project Outline The HIV Prevention Needs of Young Gay Men
13. Young Gay men & HIV infection AVERT 1995
14. Young Gay Men Talking booklet 1995
15. Publications printed by AVERT 1989-2000
16. AVERT Annual Review 1995
17. Daily Express 19th April 1994
18. Letter to Annabel Kanabus 28th July 1995
19. AIDS & Childbirth Summary
20. Letter from Annabel Kanabus to Judith Schott 5th January 1996
21. Letter from Annabel Kanabus to Dr Danielle Mercey 20th August 1993
22. Letter from Dr Hudson to Dr Danielle Mercy 8th September 1993
23. Guidelines for Management of Children with HIV Infection AVERT 1992
24. Letter from Annabel Kanabus to John Green 15th January 1996
25. AVERT Annual Review 1994
26. Letter from Annabel Kanabus to Frank Johnstone 10th January 1992
27. Letter from Frank Johnstone to Annabel Kanabus 27th September 1995
28. Letter to BBC Networking Club 21st August 1995
29. BBC Networking Club information 1995
30. Welcome to the PIPEX Dial Service
31. Email from OneWorld 23rd October 1995
32. AVERT WebPages January 1996
33. AVERT Annual Report and Accounts 1996
34. AVERT Annual Review 2002
35. AVERT Annual Review 1997
36. AVERT Annual Report and Accounts 2000
37. The National Study of HIV in Pregnancy and Childhhood, Pat Tookey, 1997
38. How much paediatric HIV infection could be prevented by antenatal HIV testing 1994
39. Why are antenatal HIV testing policies in London failing? 1996
40. National Study of HIV in Pregnancy Newsletters September 1991 and 31 June 1997
41. Report from Pat Tookey to AVERT 1st August 1997
42. Letter from Annabel Kanabus to Professor Gerry Stimson, 17th October 1997
43. AVERT Trustees Meeting 29th April 1992
44. Cowspotting with AVERT September 7th 1996
45. AVERT Annual Review 1991
46. AVERT Annual Review & Accounts 1998
47. AVERT AVERT Trustees Meeting 14th January 1997
48. Web Pages 1997 - 1999
49. The Lancet 7th November 1998
50. NetGuide Site of the Day February 19th 1999
51. AVERT Director's Report December 1998
52. AVERT Trustees Meeting 29th January 1998
53. AVERT Trustees Meeting 1st March 1999
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55. AVERT Director's Report October 1999
56. AVERT Trustees Meeting 1st March 1999
57. AVERT Trustees Meeting 12th September 2000
58. Publications printed by AVERT 1989-2000
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60. AVERT Trustees Meeting 12th September 2000
61. A Commitment to Action for Expanded Access to HIV/AIDS Treatment, December 2002
62. Wikipedia
63. AVERT Trustees Meeting 12th September 2000
64. Mothers to Mothers to Be Application for Funding May 2001
65. CADRE (Centre for AIDS Development, Research and Evaluation) December 2001
66. Youth In Detention in South Africa – Development and Implementation of an HIV/AIDS Prevention Programme July 2001
67. Letter from Kevin Kelly to Annabel Kanabus 22nd August 2002
68. Letter from Jane Adar 7th November 2001
69. Raphael Centre Initial Proposal
70. Email from Annabel Kanabus to Jane Adar 21st December 2001
71. Email from Kevin Kelly to Annabel Kanabus 9th January 2002
72. Email from Annelie van Niekerk to Annabel Kanabus 10th April 2002
73. {%reference[html=Email from Annelie van Niekerk to Annabel Kanabus 9th January 2003
74. Carlisle, A, article in the Eastern Cape’s Daily Dispatch, January 2002
75. Loewe, M, Rhodes stabbing survivor says AIDS plays a role in battery relationships, East Cape News, 2002
76. Phillp, Rowan, I’m proof there’s life after HIV, 24th March 2002
77. Email from Thabisa Dyala to Annabel Kanabus 21st June 2002
78. Email from Annalie van Niekerk to Annabel Kanabus 8th September 2002
79. Raphael Centre Progress Report February 2003 to April 2003
80. Raphael Centre Progress Report September 2002 to January 2003
81. Re-alignment of focus for the Raphael Centre April 2003
82. Email from Annabel Kanabus to Annalie van Niekerk 28th February 2006
83. Raphael Centre final report to AVERT September 2005
84. Trustees Meeting June 2003