AIDS Research Projects | drugs, prisons, booklets

Medical & social research 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:56

"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

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

The Young Gay Men Talking Booklet

The Young Gay Men talking booklet 1995

The Young Gay Men talking booklet 1995

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 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.

Having sex!

Condoms, Pills & Other Useful Things booklet 1994

Condoms, Pills & Other Useful Things booklet 1994

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 one of the best booklets we've ever seen.16

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.

Sexual feelings & relationships booklet 1997

Sexual feelings & relationships booklet 1997

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

The AVERT Publications Program

By the end of 1991, more than one million booklets had been produced and distributed by AVERT.19

By 1994 the publications program had expanded further 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".

Nutrition and HIV Infection booklet 1996

Nutrition and HIV Infection booklet 1996

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.20 By 1996 it had become the "HIV, AIDS & Pregnancy" booklet, and 750,000 copies had been distributed since it was first produced in 1988.21 It had also been mentioned as an example of good practice in the Department of Health report "Changing Childbirth".22

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.23 24

HIV testing booklet booklet 1996

HIV testing booklet 1996

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".25

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.26 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.

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.27 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.28

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.

References

  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. AVERT Trustees Meeting 3rd December 1991
  20. AIDS & Childbirth Summary
  21. Letter from Annabel Kanabus to Judith Schott 5th January 1996
  22. Letter from Annabel Kanabus to Dr Danielle Mercey 20th August 1993
  23. Letter from Dr Hudson to Dr Danielle Mercy 8th September 1993
  24. Guidelines for Management of Children with HIV Infection AVERT 1992
  25. Letter from Annabel Kanabus to John Green 15th January 1996
  26. AVERT Annual Review 1994
  27. Letter from Annabel Kanabus to Frank Johnstone 10th January 1992
  28. Letter from Frank Johnstone to Annabel Kanabus 27th September 1995

Top of the page