Starting AVERT | AIDS awareness, Icebergs

The disease AIDS

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.

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.

Setting up a charity

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.

AIDS in the attic

Annabel working in the attic January 1987

Annabel working in the attic January 1987

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".1213 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.1516

Advertising the location of the Chinese Community Health Care Centre

Advertising the location of the Chinese Community Health Care Centre

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.171819 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 Southern 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 Southern 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"

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

Icebergs & Tombstones

The government leaflet sent to every household

The government leaflet sent to every household

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 33The 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

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

The first edition of the AIDS & Childbirth leaflet 1988

The first edition of the AIDS & Childbirth leaflet 1988

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

A poster promoting the AIDS & Childbirth leaflet circa 1989

A poster promoting the AIDS & Childbirth leaflet circa 1989

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.

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"

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.

The Learning about AIDS adult education materials

The Learning about AIDS adult education materials

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 this might involve an extensive re-write as there were certainly some exercises that would not be approved.

4344

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

AIDS education for young people

AVERT was to subsequently start providing HIV/AIDS education for young people.

References

  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 1988
  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

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