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. 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. 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 together wrote the text of a leaflet about "AIDS & Childbirth". It wasn't easy to get the balance of the information right. Not only about the effect of pregnancy, but also the lack of information about the cause of mother to child transmission, as well as the uncertainties about breastfeeding.
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 can't pretend we know the information if we don't. 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 leaflets 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. The leaflet, among other images, showed a black man holding a baby. Later on some people were to refer to the leaflet 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. 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.
A crisis with Learning about AIDS
The project had started well, see (start of AVERT for more about this) although the development of the main "Learning about AIDS" materials was taking longer than expected. It seemed they were not going to be ready until early 1988. These adult AIDS education materials were particularly aimed at health service professionals, youth and community workers and adult educators. They were to not only be published bu also widely distributed by the newly created Health Education Authority (HEA). In 1987 the HEA had said that it hoped that:
"the Learning about AIDS pack will fulfill 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 certian aspects of the interim materials and that in particular:
"the messages here are not inaccurate, but the line taken on promiscuity is different to that put forward in government publicity"
Essentially the UK government wanted the materials to empasize that it was the "number of partners" that put someone at risk. The project team led by Dr 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. 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. There are certainly some exercises that would not be approved"
I remember the rather fraught meeting at the HEA at which this was discussed. 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.
Finally in early 1989 agreement was reached that learning about AIDS would be published in it's unaltered form by Churchill Livingstone. AVERT would receive back all the money we had provided for the development of the materials. 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". The first print run had to be largely "pulped" so that it could be reprinted with some alterations that the government required.
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. As well as 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. The young people completed a carefully constructed anonymous questionnaire. Some of the most interesting results concerned their sexual behaviour. A surprisingly high percentage claimed to have already had sexual intercourse with a person of the opposite sex. As a result of this work the researchers were able to make some important recommendations regarding HIV/AIDS education for young people. This was to include the fact that education on HIV disease must be started before pupils are legally allowed to be sexually active.
The questionnaire had to be extensively discussed beforehand with the schools. They 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 masterbation or oral sex.
At the end of the questionanaire 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 direcly from young people. 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 Dr Stephen Clift, one of the researchers and edited by myself during 1989. 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. This included 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 copied were distribued in just the first six months. More thant 1.6 million copies were distributed between 1989 and 2000. 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 as described as "excellent" by the World Health Organisation. They sent a copy to the government of every country as an example of good practice in educating young people about HIV and AIDS.
The booklet was regularly updated. Some of the changes were minor. But there were to be 12 different editions and reprints between 1989, and when the print version of the booklet was finally discontinued in 2000.
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 who otherwise would never other wise have met.
Sometimes there were things that were said that were to stay with me for a very long time. One 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 motivation for continuing the HIV prevention work that was it.
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. I knew from our funding of researchers to attend these meetings, how very expensive they could be.
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. 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. It was believed that it could be important in discovering whether new born infants were HIV positive. It meant 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. The study was going to be carried out in collaboration with the Royal College of Obstetricians and Gynaecologists. It was to be a national study collecting information on all HIV positive pregnant women in the UK. It would also be collecting information on their children as they were born.
The study was to be lead by Professor Catherine Peckham. 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 to the station, 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.
Spreading the word
When any type of research is funded it is important that the results of that research are made public. So that other people can benefit from the knowledge gained. By early 1989 more than nine major papers had been published in peer reviewed journal as a result of the social and medical research funded by AVERT.
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.
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".
There is more about the work that AVERT did concerning AIDS education in schools
This page was last updated in April 2020
Author Annabel Kanabus