The events that led to the start of AVERT began 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, working on our family farm in southern England, 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. The doctor was asking for any donations to be sent to a private address, and not to the hospital. So thinking that it was a scam I did nothing more.
Then over Christmas I read a magazine article about AIDS. It said that the same hospital, St. Mary's, Paddington was undertaking exciting research work and indeed was a world leader for AIDS research. I rang up the doctor and I asked him to write again from the hospital. I also decided that I would go and visit the hopsital. 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 virus? But I overcame my fears, and went to visit in February 1986.
What I learnt on the 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 sex workers 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 sex workers 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 be really affected by HIV and AIDS.
Within a couple of weeks my husband Pete and I had decided that the Bucklebury Trust would provide a grant of £45,000 to fund the 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 sex workers and HIV. More than thirty years later I am still writing about sex workers and HIV, but now my focus is on sex workers in India, and providing education through HIVFacts.org and TBFacts.org. The Bucklebury Trust also gave St. Mary's £5,000 for the medical research equipment that they had originally asked for.
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 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 helping St. Mary's we wanted to give some money to an AIDS charity. 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 THT was almost the only AIDS organisation in the country. We talked at length, but it did seem that they were mostly interested in the gay men affected by HIV, and not really in the women and children we also wanted to help.
The Start of AVERT
The same day Pete and I talked 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 I 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. 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.
The charity needed a name and 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). 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 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 AVERT 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. Little did we know that it was going to be twenty five years before I was to return.
The Start of AVERT - in the attic
So in the summer of 1986 I sat in the attic on my own and wondered how to get started. In those 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 a stunning silence.
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. The opening of the conference was to be the first time that I spoke in public about the charity AVERT.
I had also written to the National Union of Students, and we agreed to help with the costs of an HIV information pack. 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 literally 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. By early 1987 the factsheet was also being used by a number of local AIDS education workshops.
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". This pamphlet was later to be circulated as one of the main documents for the Cabinet Committee on AIDS to consider. A grant was also given towards the holding of the second Social Aspects of AIDS confernece in November 1987. Another grant was given towards a conference and associated book on the Psychiatric and Psychosocial Aspects of AIDS and HIV.
We also supported some local initiatives including providing funding for the Chinese Community Health Care Centre and the setting up of the local Sussex University AIDS Campaign. We also gave a grant to our local hospice St. Catherine's. This was in order that they had some additional single rooms and could expand their admissions policy to include HIV +ve patients with opportunistic cancers. 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.
Funding Medical Research
In September 1986 I read a newspaper article concerning the need for research funding to study the spread of HIV amongst drug users in Edinburgh. It had always been the intention of AVERT to fund medical research. So I wrote to Dr Brettle introducing AVERT. In his reply he explained that the Scottish Home and Health Department had refused to provide any funding, and as a result:
"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. 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". 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:
"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 the projects that it considered worthwhile, and was turning down many on the basis that they didn't think they were worth doing.
It was later said of AVERT's funding of AIDS medical research in Edinburgh that:
"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 for a study of the infants and children born to HIV positive mothers. 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.
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. The infamous "Icebergs and Tombstones" TV advertisements were also taking place.
There was no longer a need in quite the same way for the AIDS awareness work that AVERT had been funding. So we turned our attention to advocacy work, and to the production of educational materials which would have an impact on people's behaviour.
We never had an exact plan for AVERT's AIDS 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. Many boxes of leaflets were delivered within a few days to every further education establishment.
It was also the start of our writing to the press which continued for many years. It started with a letter about HIV testing being published in the Times in November 1986.
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. In 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. The HEC agreed in principle to fund the production and dissemination of the main pack, as well as coordinating the project. 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. Development of the main pack then proceeded, but already we had begun to get some idea of the difficulties that we might face when the time came to publish the main materials.
To learn about what happened with Learning about AIDS and how AVERT came to start a publications program please go to AVERT's HIV leaflets.
This page was last updated in April 2020
Author Annabel Kanabus