AVERT: The First Five Years

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

Annabel writes about how AVERT was started in the attic of a farmhouse in 1986, there was then the funding of early AIDS medical research, the start of a publications program, an argument with the UK government, and more educational work.

back to top Getting involved

It all started with a letter that arrived just before Christmas 1985. The letter from a doctor was asking for money for a London hospital that was doing research into the disease AIDS. At the time I knew as little as most members of the public about the disease. An interesting new disease that would only ever affect Haitians, haemophiliacs and homosexuals, I mistakenly thought.¹ The doctor was asking for any donations to be sent to a private address, and not to the hospital and so I did nothing more.

babies were dying of AIDS having become infected from their mothers at birth

Then over Christmas I read a magazine article about AIDS, and it said that the same hospital, St. Mary's, Paddington, was undertaking exciting research work, and was a world leader for AIDS research. I rang up the doctor and I asked him to write again from the hospital.² I decided that I would go and visit, but before going I had some of the same doubts that many people had at that time, about how AIDS was passed from one person to another. Was it really correct that there was no danger in meeting people with AIDS, and what about a lab where someone was working on the disease? But I overcame my fears, and went to visit in February 1986.

What I learnt on that visit really shocked me. I learnt not only about the gay men having AIDS, but the young people becoming infected on holiday in Spain. In certain parts of Africa the disease was affecting men and women alike, and babies were dying of AIDS having become infected from their mothers at birth.

Female prostitutes and AIDS

I also learnt on that first visit about the social research that they also wanted to start, to study the lifestyles of the female prostitutes attending the Praed Street Clinic at St. Mary's. At that time there was much talk of "high risk groups" but little understanding of how such people were to really be affected by HIV and AIDS.

Within a couple of weeks Pete and I had decided that the Bucklebury Trust would provide a grant of £45,000 to fund this study for three years. It was certainly the first such study in the UK and probably one of the first in the world on female prostitutes and HIV. The Bucklebury Trust also gave St. Mary's £5,000 for the medical research equipment that they had originally asked for.³

The Bucklebury Trust

The Bucklebury Trust was a charitable trust that Pete and I had set up with some money that I had inherited from my father. The trust was named after the village where I had spent some of the happiest times of my childhood, and it is the same village that has now been made famous by Kate Middleton. The Bucklebury Trust made grants to many different causes and it was to the Bucklebury Trust that the original request for research funding had been made.

An AIDS charity

We also decided that in addition to St. Mary’s we wanted to give some money to an AIDS charity, and we wanted it to go to a charity that would help anyone who might be either affected or infected, whether a man, woman or child. We also wanted the charity to be concerned about prevention, not just the care of those with AIDS however important that was.

I arranged to meet someone from the Terrence Higgins Trust (THT), at that time almost the only AIDS organisation in the country. We talked at length, but it did seem that they were most interested in the gay men affected by HIV, and not really in the women and children who we also wanted to help.

back to top Setting up a charity

if there isn't a suitable charity why don't we set one up

The same day Pete and I talked long and hard about what we were going to do. Then Pete said, "If there isn’t a suitable charity why don’t we set one up?". I liked the idea, but was nervous about my lack of knowledge. I still knew so little about the subject. "But you can get other people to help" he said, and I realised how attracted I was by the idea. I wanted to do something to help, but perhaps also at that time I wanted to do something to fill the extra time I had as our children were growing up.

There was a second small charitable trust that we had set up called The Kenny Trust. The Kenny Trust generally gave small grants to help young people, so we thought that in future it would be ideal for this money to help with AIDS. The Kenny Trust was not however a good name for an AIDS charity, so we talked about various permutations of AIDS Research Trust before a friend suggested the acronym AVERT. What does it stand for I asked? The AIDS Victims Research Trust was the answer. A quick change of Victims to Virus, and with the "E" then standing for education, the charity became AVERT (the AIDS Virus Education & Research Trust).⁴

A few years later as more had become known about HIV infection, there began to be a view that people shouldn’t talk about AIDS but only HIV. Some people even suggested that AVERT should be the "HIV Education & Research Trust", but the acronym then didn’t work. So we then dropped the full name and we were mostly just referred to as AVERT.

AVERT needed some offices, and so I went and talked to some estate agents in Horsham, the nearest town to where we lived. There were plenty of small office suites available, but nobody seemed prepared to rent to us. Then I realised, this was the stigma of AIDS, and nobody wanted to have an AIDS charity just along the corridor from them or their tenants.

I was about to give up the idea of this AIDS charity, but Pete seemed if anything more determined than ever. "Why don’t you use our attic?", he said, "set up a desk and phone, and start the charity upstairs". I had never intended to work directly for the charity myself, we were going to employ other people to do the day-to-day work, but this seemed like a good idea. Pete suggested I took six months leave of absence from working on our farm to get the charity going, and little did we know that it was going to be twenty five years before I was to return.

back to top AIDS in the attic

So in the summer of 1986 I sat in the attic on my own and wondered how to get started. In these days long before the coming of the internet writing letters was the answer, to anybody who had been mentioned in the newspapers as being interested in AIDS, and all the national healthcare organisations I could think of who might be interested in the setting up of a new AIDS charity. Then I waited, but initially all I got was either a stunning silence, or from the Department of Health a request for further information.⁵

Then one day, just as the children got home from school I got a phone call from a Richard Wells, at the Royal College of Nursing. He wanted to organise a Care in the Community Conference could we possibly help? "We have got our first project", I shouted out excitedly to Pete, and so it was that the first UK HIV/AIDS Care in the Community Conference, funded by AVERT, took place on January 26th 1987.⁶ The opening of the conference was to be the first time that I spoke in public about the work of AVERT.⁷

I had also written to the National Union of Students, and we agreed to help with the costs of an AIDS information pack.^{8 9} All went well until they asked if we could help them with producing a leaflet. Could I write the text?

I didn't like to say no but I had never written a health information leaflet before. However, I had some literature that had been sent to me from the San Francisco AIDS Foundation. So sitting at our dining room table, I cut and pasted, and turned American English into British English, until I had something which seemed satisfactory in explaining the basic facts. I sent it to the NUS and they used it in their campaign, the first UK AIDS campaign to specifically target students.¹⁰ By early 1987 the factsheet was also being used by a number of local AIDS education workshops.¹¹

AIDS awareness grants were also given to amongst other organisations, the Bureau of Hygiene and Tropical Diseases for their AIDS Newsletter, and the College of Health for their pamphlet on "AIDS and the Government".^{12 13} This pamphlet was later to be circulated as one of the main initial documents for the Cabinet Committee on AIDS to consider.¹⁴ A grant was also given towards the holding of the second Social Aspects of AIDS conference in November 1987, and another towards a conference and associated book on the Psychiatric and Psychosocial Aspects of AIDS and HIV.^{15 16}

We also supported some local initiatives including providing funding for the Chinese Community Health Care Centre, the setting up of the local Sussex University AIDS Campaign, and a grant to our local hospice St. Catherine's, in order that they had some additional single rooms and could expand their admissions policy to include HIV +ve patients with opportunistic cancers.^{17 18 19} Such was the irrational fear of infection at the time, that there was no possibility of people with HIV being nursed in the general wards of the hospice alongside cancer patients who were not HIV positive.

AIDS in Africa

It was also in the summer of 1986, and through Lord Young at the College of Health, that we tried to make our first contribution to the subject of AIDS in Africa. One of the attractions to us of funding the Bureau of Hygiene newsletter, was that it reported on news from around the world. It seemed like an opportunity to do something more direct when we funded a colleague of Lord Young, Peter Fraenkel to go out to investigate the developing problem of AIDS in Zambia, and the possibility of helping the Zambian authorities to further develop their HIV/AIDS education programmes.²⁰ However, it was also noted by Dr Tony Pinching of St. Mary's Hospital who had recently been in Zambia that:²¹

"the Zambian authorities have made a great deal of progress in the field of health education and have in a sense achieved much more than our own government in a much shorter time scale"

and nothing further resulted from Peter Fraenkel's visit.

Funding Medical Research

In September 1986 I read a newspaper article concerning the need for research funding to study the spread of HIV amongst drugs users in Edinburgh. It had always been the intention of AVERT to fund medical research, and so I wrote to Dr Brettle introducing AVERT, and in his reply he explained that the Scottish Home and Health Department had refused to provide any funding, and as a result:^{22 23}

"the majority of the research that has been conducted in our unit is basically being done by NHS staff in their spare time."

Just two months later in November 1986, we agreed to provide £87,000 to fund a three year study on the natural history of HIV infection in women and the effect of pregnancy.²⁴ This was probably the first research study in the UK to look at HIV infection in women.

In May 1987 the House Of Commons Social Services Committee reported on the "Problems Associated with AIDS", and they noted the failure of the Medical Research Council (MRC) to provide sufficient funding for AIDS medical research. They said of AVERT’s funding of Dr Brettle’s research that:²⁵

"This is the most striking example we have come across of a worthwhile research project which has been turned down by government agencies and subsequently funded by private means"

much of what has subsequently developed in Edinburgh into clinical research is related to your original support

So why was the MRC not funding AIDS research? It had been said by the government that the MRC was funding all the AIDS projects submitted to it. However, on reading the detail of what was said, it seemed that the MRC was funding all projects that it considered worthwhile, and was turning down many on the basis that they didn’t think they were worth doing.²⁶

It was later said of AVERT’s funding of AIDS medical research in Edinburgh that:²⁷

"since you were the first organisation of any kind to provide us with financial resources, much of what has subsequently developed in Edinburgh into clinical research is related to your original support"

In June 1987 AVERT provided a second grant to Dr Brettle, at the City Hospital, Edinburgh, for a study of the infants and children born to HIV positive mothers.²⁸ These grants were to be the start of AVERT’s education and research work concerning HIV positive women and children, that was to continue for the next twenty years.

We also in 1987 gave a research grant to Dr Green at St. Mary’s Hospital for research into the effect of HIV on the Central Nervous System.²⁹

back to top Icebergs & Tombstones

By the end of 1986 the government had increased its action on AIDS with plans for a leaflet to be sent to every household in the country, and the infamous "Icebergs and Tombstones" TV advertisements were taking place.

There was no longer a need in quite the same way for the AIDS awareness work that AVERT had been funding, and so we turned our attention to advocacy work, and to the production of educational materials which would have an impact on people’s behaviour.

AIDS advocacy

We never had an exact plan for AVERT’s advocacy work, but we did know that we would try and speak out when there were things that needed to be done.

One example of this comes from the various meetings that Pete attended, to either learn about or talk about AIDS. At one of these Tony Newton, the then minister of health talked about providing one leaflet per address. Pete asked further about this and it was confirmed that every university would only receive one leaflet for all their students. Thanks to Pete’s intervention all the universities were contacted in the next few days regarding their student numbers and the number of leaflets they required, and many boxes of leaflets were delivered within a few days to every further education establishment.³⁰

It was also the start of our writing to the press which continued for many years, but which started with a letter about HIV testing being published in the Times in November 1986.³¹

Learning about AIDS

The independent Health Education Council (HEC) was one of the organisations that had learnt about AVERT and our interest in AIDS education, and in late 1986 they invited us to meet with them and Peter Aggleton, a health educator from Bristol Polytechnic, to discuss the possible development of some participatory or active learning teaching materials to educate adults about AIDS. This was to be the start of the Learning about AIDS project, designed as a three way collaborative venture between the various parties.

In December 1986 it was agreed that AVERT would fund some "Starter Materials" and would pay for the development of the main Learning about AIDS pack, whilst the HEC agreed in principle to fund the production and dissemination of the main pack, as well as coordinating the project.^{32 33} The project did face some difficulties from the start, but the "Starter Materials" were available by early 1987 and such was the need for improved education that 5,000 copies were distributed free of charge.³⁴ Development of the main pack then proceeded, but already by 1987 we had begun to get some idea of the difficulties that we might face when the time came to publish the main materials.³⁵

back to top AIDS & Childbirth

What are the facts?

With AIDS being such a new disease there was a lot that wasn’t known, and also what was believed to be a "fact" one day could within a few months be found to be inaccurate. For example, in 1986 it was unclear how many of the children born to HIV positive women were themselves infected.

How many children are being born HIV positive?

Children had previously only been identified as being HIV positive when they developed symptoms of AIDS. Then the HIV antibody test became available and researchers began to test the groups of children that they were following. They found that virtually all the children were antibody positive, and so for a short time it was believed that virtually all the children born to HIV positive women would themselves be infected.

I remember then reading a report that said that a researcher had retested a child that had previously been tested, and it was found that the child no longer had HIV antibodies. I must admit that when I first heard this I thought that the researcher must have made a mistake, because adults didn't loose their antibodies so why should children? But of course it wasn't a mistake, and when other researchers began to also regularly retest children, it was found that the great majority of babies being born to HIV positive women were actually being born uninfected, a complete reversal on what had been thought just a short time before.

I found the fast changing situation to be both interesting and exciting. But it meant that I had to learn about AIDS not only by reading the medical press but also by talking to researchers who were closer to the information.

Deciding to produce a leaflet

It was the summer of 1987 and I was reading an article about AIDS in one of the nursing magazines, when I came across the statement that:

"If you are HIV positive and you become pregnant, then this will cause you to develop AIDS more quickly"

This information was what was generally believed, and as a result of this many HIV positive women were being strongly advised not to become pregnant, or even to have a termination if they were already pregnant. However this information had come from two small studies, and I knew from the research that we were funding that the HIV positive women becoming pregnant in Edinburgh were generally remaining well.³⁶ What could I do to correct this accidental misinformation that was being widely spread.

The simple leaflet that I had written for the NUS had clearly been successful, so perhaps I could produce one about becoming pregnant if you were HIV positive. But I did not think that I had enough medical knowledge and I didn’t know how to get booklets designed and printed, but maybe I could learn.

Writing the text

I contacted the National Childbirth Trust and they put me in contact with Judith Schott, who had previously written some health education materials for them. Judith and I together wrote the text of a leaflet about "AIDS & Childbirth". It wasn’t easy to get the balance of the information right, not only with the effect of pregnancy, but also the lack of information about the cause of mother to child transmission, as well as the uncertainties about breast-feeding.

We showed it to a number of health professionals, and some people were concerned about the lack of certainty in certain areas about what we said. But as I said to someone at the time, we can’t pretend we know the information if we don’t, and we can’t leave out such important areas as breastfeeding that are going to be of importance to many women. So we adopted the honest approach that we subsequently followed with all our publications, and if we didn’t know the answer to something we said so.

Needing a design

I then set about getting the leaflet designed and printed. It took a remarkably long time to get a suitable design sorted out. Many booklets at that time were printed in black and white and didn’t look particularly attractive. So AIDS & Childbirth was to be printed in full colour, and we challenged some of the normal stereotypes, with the leaflet, amongst other images, showing a black man holding a baby.³⁷ Later on some people were to refer to it as the "teddy bear" leaflet.

How many should we print?

There was then the issue of how many to print, and 4,000 seemed a good number to get started with. I sent out lots of copies in June 1988, and I waited for a response. Many people asked for further copies and then someone asked what the cost would be for 100. I didn’t have a price list so I hurriedly found the printing cost, divided by the number of leaflets and typed this up as my price list. I figured that if I sold them all I would still be making a loss as I had not allowed for postage, but this was perfectly all right because as a charity we shouldn’t be making a profit on them.

In July I printed a further 10,000, and then in August 1988 50,000. A further 50,000 followed at the end of the year. In the first two and a half years we printed, sent out, and either gave away or sold a total of 380,000 copies.³⁸ By this time it was no longer feasible to be in the attic, lugging boxes of booklets up and down the stairs. But we managed to find some ground floor space on the farm, and we organised a portacabin in which to store the booklets.

back to top Education Projects in 1988

A crisis with Learning about AIDS

The project had proceeded well, although the development of the main "Learning about AIDS" materials was taking longer than expected, and they were not going to be ready until early 1988.³⁹ These adult AIDS education materials were particularly aimed at health service professionals, youth and community workers and adult educators, and they were to not only be published but also widely distributed by the newly created Health Education Authority (HEA). In 1987 the HEA had said that it hoped that:⁴⁰

"the Learning about AIDS pack will fulfil a key training role for the many health care professionals now looking for support in AIDS education"

the line taken on promiscuity is different to that put forward in Government publicity

However the HEA was not as independent as the previous HEC, and with the HEA everything they published about AIDS had to be "vetted" by the Department of Health. The Department of Health had already informed the HEA that they were concerned about certain aspects of the interim materials and that in particular:⁴¹

"The messages here are not inaccurate, but the line taken on promiscuity is different to that put forward in Government publicity"

Essentially the government wanted the materials to emphasize that it was the "number of partners" that put someone at risk. The project team led by Peter Aggleton wished to more correctly emphasize that it was the particular sexual activities that an individual engaged in, for example whether a condom was used, that determined the risk.

In early 1988 we were discussing with the HEA the details of our co-publishing agreement for the main "Learning about AIDS" materials, and all seemed to be going well.⁴² In May the final text was delivered to the HEA, but then in July we were suddenly told that there was a new policy which was that the materials, to have the HEA's name on them, now had to be approved by the Department of Health, and that:^{43 44}

"this might involve an extensive re-write - there are certainly some exercises that would not be approved"

I remember the rather fraught meeting at the HEA at which this was discussed, and I said that if the HEA wouldn’t publish then AVERT would. I had no idea how we would do it, but I wasn’t prepared to just agree to what the Department of Health wanted. We also had a contract with the HEA and they were proposing to break it. Lengthy negotiations then took place whilst amongst other things the HEA tried to find another publisher with whom we could co-publish the materials. Publicly, as publication continued to be delayed, the Department of Health denied that it had vetoed the publication, but it seemed to me that this was exactly what they had done.⁴⁵

Finally in early 1989 agreement was reached that Learning about AIDS would be published in its unaltered form by Churchill Livingstone, and AVERT would receive back all the money we had provided for the development of the materials.⁴⁶ So at AVERT we got what we wanted, which was the materials published in unaltered form at an affordable cost. I was sorry that they weren’t going to have the HEA’s name on them but that didn’t seem to matter too much. The fact that we got all our money back was just a bonus, but we weren’t going to tell that to either the Department of Health or the HEA.

Later in 1989 the HEA was to cause further controversy with it's teacher's pack "Teaching about HIV & AIDS", with the first print run having to be largely destroyed so that it could be reprinted with some alterations that the government required.⁴⁷

The HIV/AIDS Education & Young People Project

This project based at Christ Church College, Canterbury aimed to investigate young people's knowledge and beliefs about HIV and AIDS, their attitudes towards people with HIV and AIDS and the aspects of their behaviour which placed them at risk of infection.

The first phase of the work was a survey in the spring of 1988, of 1,000 young people, fourth, fifth and sixth formers in four secondary schools in the south of England, with the young people completing a carefully constructed anonymous questionnaire. Some of the most interesting results concerned their sexual behaviour, with a surprisingly high percentage claiming to have already had sexual intercourse with a person of the opposite sex.⁴⁸ As a result of this work the researchers were able to make some important recommendations regarding HIV/AIDS education for young people, including the fact that education on HIV disease must be started before pupils begin to be sexually active, i.e. before the fourth year of secondary school.

The questionnaire had to be extensively discussed beforehand with the schools, who were quite prepared for young people under the age of consent to be asked whether they had already had sexual intercourse. But the researchers were refused permission to include any questions about masturbation or oral sex.

At the end of the questionnaire a space was included in which the young people could write any remaining questions they had about HIV/AIDS. Following the government campaigns it was not expected that this would be widely used, but many young people took the opportunity to say all the other things they wanted to know. What could we do with this extensive information that came directly from young people and could we use it to educate other young people? The answer was that we could through the booklet that became widely known as the "Yellow booklet".

The AIDS & Young People Booklet

The booklet was written by Stephen Clift, one of the researchers and edited by myself during 1989, and it made extensive use of the comments written by the young people who took part in the survey. The answers to the young people’s questions were given in as straightforward and honest a way as possible. The booklet was also designed to be attractive to young people with a bright yellow cover. But what made it really attractive to young people was that it answered the questions that they really had, including such questions as whether having oral sex put you at risk of getting HIV.

The booklet was popular from when it was first printed in October 1989. Over 250,000 copies were distributed in just the first six months and more than 1.6 million were distributed between 1989 and 2000.⁴⁹ Many were given away, but the majority were sold at a very low cost, because to have given away even more for free would, as with the "AIDS & Childbirth" leaflet have cost far too much for such a small organisation as AVERT.

The booklet was described as "excellent" by the World Health Organisation, who sent a copy to the government of every country as an example of good practice in educating young people about HIV and AIDS.⁵⁰

The booklet was regularly updated, and although some of the changes were minor, there were to be 12 different editions and reprints between 1989 and when the print version of the booklet was finally discontinued in 2000.⁵¹

back to top The early years 1986 - 1988

It is hard now to describe what it was like in those early years. The fear, the uncertainty, the sickness and the deaths. But it also brought together people who had a common aim of overcoming the problems, people whose lives would never otherwise have crossed.

knowing that you were responsible for passing the virus on to him

Sometimes there were things that were said that were to stay with me for a very long time. One such example concerned Leo, a gay American, whose bedside I sat next to as he lay in terrible pain dying of AIDS. He said to me,

"If there is one thing that is worse than dying of AIDS, it is watching your partner dying of AIDS, knowing that you were responsible for passing the virus on to him."

If ever there was a motivation for continuing with the HIV prevention work that was it.

The early HIV & AIDS Medical Research

The uncertainty and the lack of knowledge concerning HIV and AIDS, contributed to it being a remarkable time for medical research. The major medical research grants that AVERT provided in 1986, together with some others provided in the next year or two, were generally grants that allowed the researchers to carry out their work for several years.⁵² However, although the sums were large for AVERT, in several instances being for £30,000 a year or more, they were amazing in how much knowledge was gained.

In 1988 there was a particular focus by AVERT on understanding more about mother to child transmission of HIV. A further grant was given to the City Hospital Edinburgh, to use a new technique called PCR, that required new equipment, but which it was believed could be important in discovering whether new born infants were HIV positive, and not having to wait for eighteen months to find out if they were going to loose their antibodies.

We also provided about £100,000 for the first three years of a major study to take place at the Institute of Child Health.⁵³ The study that was going to be carried out in collaboration with the Royal College of Obstetricians and Gynaecologists was to be a national study collecting information on all HIV positive pregnant women in the UK, as well as collecting information on their children as they were born.

The study was to be lead by Professor Catherine Peckham and I remember the day in 1988 that I first went to see her and we talked about the study. As I left our meeting and walked down the road to the tube, I remember feeling both delighted and astonished that it was being left to such a small charity as AVERT to fund such a major and important study.

The first international conference

The first international conference that I went to was in 1988, when I attended in London the First International Conference on the Global Impact of AIDS. It was truly both horrifying and inspiring.

Horrifying because of the deaths and suffering that were expected, and inspirational because of the belief that we could all play a part in alleviating the suffering.

I also learnt so much that I wanted to start going to some of the main AIDS international conferences that were starting to be held each year, although they were generally not in the UK. But clearly if I was going to do this there was going to be an issue about the cost, as I knew from our funding of researchers to attend these meetings, how very expensive they could be.

back to top Spreading the word in 1988 - 1989

When any type of research is funded it is important that the results of that research are made public in order that other people can benefit from the knowledge gained. By early 1989 more than nine major papers had been published in peer reviewed journals as a result of the social and medical research funded by AVERT.⁵⁴

The research into the effect of pregnancy on women infected with HIV very quickly turned out to be important. A paper giving the initial results that in Edinburgh the HIV positive women were generally remaining well, was presented at the International AIDS Conference in Stockholm in June 1988 where it created enormous interest.⁵⁵

However, despite the importance of the research projects, at times in 1988 and 1989 the educational work seemed to dominate the work of the charity. In excess of half a million leaflets and booklets were produced and distributed as well as educational reports, and we also developed the teaching pack "Working with Young People".⁵⁶

back to top Working with Young People

Although we had produced the "AIDS and Young People" booklet, we knew that in addition there needed to be really effective AIDS education in schools. We knew that it was not sufficient for young people to be provided with information, they also needed to be helped to develop the skills needed to translate this information into effective action which would protect their health and the health of other people.

it is not only in schools that young people need to be offered a chance to discuss how AIDS affects their lives

The second phase of the HIV/AIDS Education & Young People project involved documenting the progress made in the provision of school based education on AIDS for young people, and identifying areas where further resources and training were needed.⁵⁷ It was found that, amongst other things, most schools were introducing education on HIV/AIDS too late, and over a third of schools did not have a teacher responsible for coordinating HIV/AIDS education.⁵⁸

However, it is not only in schools that young people need to be offered a chance to discuss how AIDS affects their lives. A great many young people were meeting in a variety of non school environments such as youth clubs, drop-in centres for young people and youth and community projects. Many of the adults working with young people in these environments had a willingness to help young people understand how AIDS affected their lives.

So in 1988 we started a project at Bristol Polytechnic to develop the teaching pack "AIDS – Working with Young People" which used and promoted a participatory style of health education, and which was published by AVERT in 1990.^{59 60} Together with a background text the pack involved using exercises, group work, open discussion techniques, games and role plays, to help young people clarify what they already knew and felt about HIV and AIDS, and to consider the consequences of this information in their relationships with other people.⁶¹ Widely disseminated the pack was used in many different countries and with many different groups of young people.⁶² When we could we sold the pack, but when we couldn't and the pack was much needed we gave it anyway for free, such as when we sent a dozen copies to South Africa for use by community organisations working in townships.⁶³

As it was so successful a second version was later developed for use in schools.⁶⁴ The Norwegian government so liked it that they translated it into Norwegian so that they could use it in their schools as an official government publication, and they paid us royalties for doing so.⁶⁵ The illustrations were done by Tamsin Wilton, and were not only responsible for considerable education, but also at times considerable amusement, with Tamsin saying that:⁶⁶

is it possible to get AIDS from someone who is sexually abusing you?

"They [the illustrations] provoked mirth over the photocopier at the University"

When we were piloting the teaching pack, the issue arose of how support needed on occasions to be provided for the youth workers. As one such worker explained, there can be some traumatic occurrence such as:⁶⁷

"A young woman asks, in front of the whole group, if it is possible to 'get AIDS from someone who is sexually abusing you?', and then turns white when they realise it is possible, highly unlikely but possible. Having left the youth club late, after contacting parents etc etc, the worker who lives on his/her own is very distressed"

The third and final phase of the HIV/AIDS Education & Young People project at Christ Church College, Canterbury was completed in 1992. The result was a comprehensive guide to HIV/AIDS education in secondary schools for classroom teachers, health education co-ordinators, and others concerned with the teaching of AIDS in secondary schools.⁶⁸ The Times Educational Supplement said about this book:⁶⁹

"This book is a must for all secondary schools … and anyone else with an interest in seeing that our young people get the best education about HIV/AIDS that we can give them."

back to top AIDS Related Dementia

After the success of the "AIDS & Childbirth", and "AIDS & Young People" booklets, we decided to produce some booklets on the medical aspects of HIV disease. These booklets would primarily be for HIV positive people but we also hoped that they would be helpful for health professionals and carers.⁷⁰

We did at the time write to some pharmaceutical companies asking for help with the production costs of the booklets. They weren’t prepared to help, but we did in any case then decide that AVERT wouldn’t accept money from any company, or indeed individual, where accepting the money might affect AVERT’s reputation and/or make us appear less independent than we actually were.⁷¹

The first booklet was, rather surprising looking back on it, on "AIDS related Dementia", a subject of great concern to people living with HIV. As with all the medical booklets I had to find a doctor willing to write the booklet, and I then usually edited it so that people with limited medical knowledge could understand it. Written by Dr Agnes Kocsis of St. Mary's hospital, the "AIDS Related Dementia" booklet was first printed in May 1989.⁷²

back to top A Major Gift

three million pounds

As we got more and more involved in AIDS work, Peter and I felt that we wanted to concentrate our charitable efforts on AIDS, and we therefore decided in 1989 to give the whole of the Bucklebury Trust to AVERT, amounting to some three million pounds. We knew when we made the gift, that for tax reasons we would not be able to be paid if we worked for AVERT, but we were prepared to remain as volunteers.

The Bucklebury Trust gift did not mean that AVERT could stop fundraising, because the money was to be kept as an endowment with the income available to be used by the charity. It would provide AVERT with financial stability and it would mean that we could fund projects that it would be otherwise be extremely difficult to fund such as work concerned with prostitutes and prisoners.⁷³

back to top 1990: Projects, publications and a conference

HIV Infection amongst prisoners

why don't you interview people who have just come out of prison?

It was not just medical research, but also social research that AVERT was involved with, gaining a better understanding of people’s behaviour and circumstances and how this might or might not put them at risk of HIV infection. Prisons and prisoners were a regular topic of conversation and in 1989 we funded a small study looking at injecting drug use amongst prison inmates in Saughton Prison in Scotland.⁷⁴

However when it came to prisons in England we were always told that the Home Office would not allow any researchers to go into prisons. In February 1989 I attended the third conference on the "Social Aspects of AIDS" and I was on a panel with other funding bodies, and yet again the subject of prisons came up. Well:

"if you can’t interview people in prison why don’t you interview people who have just come out of prison?"

was my response to yet another researcher talking about a lack of Home Office consent.

The following day I got a phone call from a researcher, Kate Dolan, and this led to AVERT in 1989 funding a study to investigate the risk of HIV infection in prisons in England.⁷⁵ Four hundred and fifty ex-prisoners throughout England were interviewed, and were asked about their behaviour before, during and after imprisonment.

An HIV prevalence rate of 10 per cent was found for the drug injectors in the study, and it was also found that there were high levels of drug use in prison, and high levels of the sharing of injecting equipment. The project report received considerable attention in the media, in Parliament, and amongst practioners and researchers, and in 1992 a major conference was held on the subject of "Prisons, HIV and AIDS".^{76 77} There were also a number of papers published in such journals as the BMJ and AIDS Care.⁷⁸

Medical treatment and other booklets

In 1990 we produced two further booklets in our rapidly developing publications program. The first was a booklet on the "Medical Treatment of HIV disease". Initially written by Dr Susie Forster at St. Mary’s Hospital Paddington, the booklet was to quickly go through a number of different editions as there began to be rapid changes in treatment.⁷⁹ We also regularly had to change authors as doctors became too busy to write, or they no longer had sufficient up to date information themselves. Between 1990 and 1996 we printed and distributed nearly 90,000 copies of the booklet.⁸⁰

In 1990 we also produced the first edition of our "Women Talking about AIDS booklet". At the time almost all of those who publicly talked about being HIV positive were men, and almost the only time that women were discussed in relation to HIV was regarding pregnancy. I wanted to change that, and with the help of the late Tamsin Wilton, who was known for her writing on feminist issues, we set about contacting women who were prepared to tell us their stories of how HIV/AIDS had affected them. In the introduction to the booklet we explained that:⁸¹

"AIDS has become the leading cause of death for women aged between 20 and 40 living in cities of Western Europe, the United States, and sub-Saharan Africa"

and to some people in the UK, who perceived AIDS as a disease that still only affected gay men, this was an astonishing statistic.

A particularly moving account in the booklet was "Ruth's poem". Widely distributed at the time, it was a poem written by an HIV positive woman about the difficulty of talking to her child about HIV, and it began as follows:

" Here I am, a few years on
It was hard enough explaining where Daddy has gone
She knows there's something wrong with me
How can I explain about HIV?
I see the sadness, the fear in her eyes
Each time I have to be hospitalised,
And I see the way she looks at me
Each time I take my AZT "

In total, by the end of 1991, more than one million booklets had been produced and distributed by AVERT.⁸²

The San Francisco Conference

Since the start of AVERT we had funded many medical people to attend conferences, but I began to realise how much people learnt, and how much of it could be understood by a lay person with limited medical knowledge. Major AIDS conferences were being held every year as new information about AIDS was being discovered so quickly, and so I decided to attend the San Francisco conference in 1990.

There were a few practicalities, such as who was to look after our children, but the ever supportive Pete volunteered to be the one to stay at home whilst I went to the conference. This is perhaps the place to say that without Pete, not only would AVERT never have started, but it would not have achieved even a fraction of what it has, if he had not been there, often behind the scenes, supporting me as well as often providing practical help and advice.

So I went to the conference and the amount I learnt, and the atmosphere was truly amazing. There was also a plan to have a march, a peaceful march of thousands of people to protest that not enough was being done by the authorities, both in terms of funding for research and support for those living with HIV. But the authorities had vetoed the march, fearing it would turn violent, and so they banned it, and the San Francisco police were out in force, many on horseback.

So it was the end of the conference and the final session, and the speakers on the platform said they were going to march, and they invited the audience to march with them. As the conference speakers turned and walked out of the hall, almost everyone there, including myself went with them. It was scary confronting the police on horseback, but as we reached the police lines they parted and we walked through and held our march.^{83 84}

It was also at the San Francisco conference that I saw some of the panels from the AIDS quilt for the first time. I was to wear the badge on a number of occasions afterwards because, at that stage of the epidemic, when you saw the panels you really did understand.

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References back to top

1. New Law Journal 1989
2. Letter from Dr Jefferiss 11th January 1986
3. Letter to Dr Harris 6th March 1986
4. AIDS Prevention News November 1987
5. Letter from the Department of Health 4th July 1986
6. First CNA National Conference on AIDS Nursing Standard 27th November 1986
7. Speech given by Annabel Kanabus at the opening of the conference 1987
8. Letter to the NUS 24th June 1986
9. Letter from Annabel Kanabus to the NUS 20th September 1986
10. National Union of Student News 3rd November 1986
11. Workshop of Approaches to AIDS Education, March 1987
12. Kenny Trust Accounts 6th April 1986 to 3rd March 1987
13. Letter from Annabel Kanabus to David FitzSimons, 17th November 1986
14. Letter from Michael Young to Annabel Kanabus 5th January 1987
15. Letter from Project Sigma, South Bank Polytechnic, 22nd January 1988
16. AIDS and the Chinese community
17. Letter from Annabel Kanabus 15th September 1986
18. Letter from John Kay to Annabel Kanabus 27th May 1987
19. Letter from Annabel Kanabus to Dr Jepson 13th May 1987
20. Letter from Michael Young to Annabel Kanabus 9th September 1986
21. Letter from Dr Tony Pinching to Lord Michael Young 31st July 1986
22. Letter from Annabel Kanabus to Dr Brettle 22nd September 1986
23. Letter from Dr Brettle to Annabel Kanabus 23rd September 1986
24. Letter to Dr Brettle 24th November 1986
25. House of Commons Third Report from the Social Services Committee 13 May 1987
26. Speech by Annabel Kanabus 1987
27. Letter from Dr Brettle 9th March 1990
28. Letter to Dr Brettle 5th June 1987
29. Letter to Dr Green 5th June 1987
30. Department of Health and Social Security AIDS Leaflet & Form January 1987
31. AVERT Letters printed in Newspapers The Times November 1986
32. Letter from Annabel Kanabus to the Health Education Council 3rd December 1986
33. Letter from the Health Education Council 23 December 1986
34. Learning about AIDS Project, Minutes of the Advisory Group Meeting April 9th 1987
35. Letter from Annabel Kanabus to the Health Education Authority 3rd May 1987
36. The Natural History and Resource Implications of HIV Infection in Females and the Effect of Pregnancy First Year Report Dr Linda MacCallum & Dr Raymond Brettle 17th March 1988
37. AIDS and Childbirth Project 1988
38. AIDS & Childbirth Invoices 1988-1990
39. Letter from Annabel Kanabus to Hilary Homans & Peter Aggleton, 21st July 1987
40. Health Education Authority and AIDS April 1987
41. Letter from Department of Health to Health Education Authority 14th April 1987
42. Letter from Health Education Authority to Annabel Kanabus 20th April 1988
43. Letter from Peter Aggleton to Annabel Kanabus 20th May 1988
44. Notes from a meeting at the Health Education Authority 14th July 19881
45. Row over AIDS manual raises fears of government vetting The Guardian 22nd September 1988
46. Health Education Authority and AVERT Agreement 20th February 1989
47. Health Education Authority in a time of adversity BMJ Volume 299 28 October 1989
48. The HIV/AIDS Education & Young People Project A Summary of Findings from Phase 1
49. AVERT Report and Accounts 1990
50. The Best Hope Yet AVERT leaflet circa 1990
51. Publications printed by AVERT 1989-2000
52. Major Research Project Grants 1986 - 1988
53. Letter to Professor Peckham 5th December 1988
54. AVERT Annual Report & Accounts Year Ended April 1989
55. AVERT Annual Report & Accounts Year Ended April 1989
56. Childright June 1990
57. A survey of AIDS education in Secondary Schools, David Stears & Stephen Clift, 1990
58. Findings from a survey of AIDS education in Secondary Schools, 1991
59. Letter from Annabel Kanabus to Peter Aggleton 13th July 1988
60. AVERTing the spread of AIDS 1990
61. AVERT Young People & AIDS Project 1988
62. AVERT Young People and AIDS Project Evaluation 1990
63. AVERT Director's Report December 1998
64. AIDS: Working WIth Young People A Resource for use with Young People in Secondary Schools, Colleges and Community and Youth Groups
65. AVERT Trustees Meeting 29th April 1992
66. Letter from Tamsin Wilton to Annabel Kanabus 19th April 1993
67. Letter to Annabel Kanabus 24th April 1993
68. AIDS the Secondary Scene 1992
69. Times Educational Supplement 18th September 1992
70. Letter to Bristol Myers Squibb 24th May 1990
71. Letter to Bristol Myers Squibb 24th May 1990
72. Quote from Cameron Lindsay Advertising 4th May 1989
73. AVERT Annual Report & Accounts Year Ended April 1990
74. Stephen Dye, Chris Isaacs, Intravenous drug misuse among prison inmates: implications for spread of HIV, BMJ 22 June 1991
75. Letter from Annabel Kanabus to Gerry Stimson 17th July 1989
76. The Centre for Research on Drugs and Health Behaviour Annual Report 1991
77. AVERT Trustees Meeting 29th April 1992
78. Papers published as a result of projects funded by AVERT, AVERT Accounts 5th April 1989
79. Letter to Dr Susie Forster 6th April 1990
80. Publications printed by AVERT 1989-2000
81. Women Talking about AIDS October 1990
82. AVERT Trustees Meeting 3rd December 1991
83. Conference Bulletin Sixth International Conference on AIDS June 23rd 1990
84. Los Angeles Times June 20th 1990