The coming of the internet
In 1994 there had begun to be news about the World Wide Web, in due course renamed the Internet. But it was only available in London, and we were 50 miles south. Then in the summer of 1995 I heard it was available to people in our area, so I decided to get connected to see what it was all about. It turned out that getting connected was technically rather more difficult than I expected, but two months later we were able to get online using the BBC Networking Club, although they then almost immediately closed.
As far as AIDS information was concerned there was almost nothing on the Internet, just a few American sites explaining what AIDS was. So with World AIDS Day coming up on December 1st, I decided that AVERT would put up some information about World AIDS Day. We firstly had to get our own web address. The charity OneWorld Online was helping a number of charities to get online, and through them we got our first web address which was http://www.oneworld.org/avert/
Having written what we wanted to put up, there was then the technical challenge of getting the information onto our website. I remember the difficulty that we had putting our first graphic on the site. It was our logo, which we wanted to put at the top of each page, and it took our designer about a day to do it, but he was used to designing booklets, not web sites. But we made it by October 1995, putting up two pages, one about World AIDS Day and one about AVERT.
By 1994 the publications program had expanded to the extent that we were producing and distributing more than 600,000 booklets a year. We also in 1994 produced another leaflet for young people about contraception. Called "Condoms, Pills & Other Useful Things" the booklet was also very popular with more than 150,000 copies being distributed in the first year. The booklet was particularly written for 14 & 15 years olds. 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 cause considerable controversy. A number of people accused AVERT of encouraging young people to have sex. We were not though the only organisation being criticised for our publications. The Health Education Authority was forced to withdraw "A Pocket Guide to Sex" which the Health Minister claimed was "smutty". None of the criticism deterred us though from trying to help young people to get the sex education we believed that they deserved. Whilst there were some people who criticised what we were doing there were many other swho praised our efforts. This was of course at a time when, before the internet, the amount of information available to young people was extremly limited.
After the booklet on contraception, we then, at the request of some young people, embarked on producing 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 such as "how long does sex last" and "is sex noisy"!
All the booklets for young people took an enormous amount of time to develop. Extensive fieldwork needed to be carried out with young people. Also, many adults who worked with young people nneded to be consulted. It was also not only in the writing of the booklet itself, that it was necessay 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 orgasms", and that the next day I could be corresponding about drug users in prison.
The AVERT Publications Program
By 1994 the publications program had expanded 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. There was also the "AIDS & Childbirth" leaflet, the booklet "Women Talking about AIDS". There was also a booklet on "AIDS & Children" and one on "Talking to Teenagers about AIDS.There was a lso a booklet on HIV Testing.
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. By 1996 it had become the "HIV, AIDS & Pregnancy" booklet and 750,000 copies had been distributed since it was first produced in 1988.
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. These were "A Guide fo 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. The second was written by two paediatricians who worked at two major referral centres for HIV infected children.
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 langusage 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".
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. An example was 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. Also this didn't include the cost of the major research for some of the publications. Many people thought that as a charity we should be giving away all our publications for free. They did not realisize that we simply didn't have the funding to do this.
What information did people want on the internet?
Alongside our publications program we were continuing with our attempts to make information available through the internet.
From the end of 1995 One World was able to provide the figures of how many people read each of our pages. I can't remember the numbers but they seemed alright at the time. But after World AIDS Day nobody seemed interested. Obviously they were no longer interested in World AIDS Day but they weren't interested in AVERT either. In January 1996 I nearly took the site down. But I then thought that maybe people would be interested in our Young People's booklet, so I took the text and put it on line.
Ten times more people visited that page than either of the other two, and this was clearly the way forward. AVERT's website was not going to be about AVERT, it was going to be a site for providing AIDS information. So I went on putting further information on the site, including a news page, some statistics, and some quotations from young gay men. By April 1996 400 people a week were visiting the site, and in June 1996 NetUser magazine gave us a five star rating.
The AVERT Information Service
All of AVERT's charitable work was eventually to be influenced by the start of the internet, but AVERT's Information Service had to start to change immediately. Our Information Service started in 1988, when after the Government AIDS Campaign there were still many people who had questions about HIV/AIDS. They were not personal questions that would be answered by the government helpline. As well as responding to individuals who had questions about AIDS, we also helped many other organisations with the articles they were writing. One such example was a Readers Digest article called "AIDS: The Vital Facts" which was published in March 1992.
Initially the questions came by post and phone and we collected information which we kept in filing cabinets to help answer the questions. But once the internet came the Information Service had to answer questions from all over the world which predominately came by email. And although we still collected information, it was soon almost all held electronically.
From the time that the Information Service started it was clear from the responses we received, that people greatly appreciated the personal and prompt service that we were able to provide. One typical example was:
"We found your answers very helpful. I appreciate it, and it's good for my students to know thatthere are health agencies that can answer important questions anytime"
There were many memorable emails sent to the Information Service over the years, but one of the saddest came from a man in Norway who felt that he was responsible for passing on HIV to several people in Africa. He said he was going to commit suicide and he was telling AVERT because he wanted his body to be found. We tried to contact him or the relevant authorities, but we were too late. Later on we heard that a body had been found.
But the internet also opened up many opportunities to help people. In the early years of the internet almost no gay support organisations were on line, and there was particular interest in AVERT's online gay and lesbian information. People particularly needed help and support around holiday periods including at Christmas. At AVERT, like most UK based organisations we closed for a week or more over Christmas. But for many years I would go in for an hour or two a day, to see if anyone had emailed us asking for help.
Many young gay men wrote to AVERT at this time of year. Some had decided to tell their families that they were gay and also sometimes that they had AIDS. Sometimes their families had thrown them out of their homes. There wasn't all that much I could do to help, except to tell them to hang on until after the holiday period, until other services were open, and there would be other people who could help. But often, in a similar way to the HIV positive people who wrote, they wrote back to us saying how helpful it was that I had replied, and somehow it didn't seem to matter that I was:
"a lone voice from the other side of the world"
Changing Medical Research
It was not just the internet that was changing AVERT's work, but the drugs had come for the treatment of AIDS, and fewer researchers wanted to carry out medical research projects, particularly the smaller scale clinical projects that AVERT had previously so successfully funded.
We allowed the medical research projects we had previously funded to come to an end, as they reached the end of their funding, and in 1996 we launched a new research initiative, the AVERT AIDS Studentship Scheme. The aim of the scheme was to sponor gifted individuals to begin their careers in AIDS medical research.
We provided three medical studentships each year, and a number of eminent scientists advised the AVERT trustees on the quality of the studentship applications. Areas of research included such exciting and topical areas as the delivery and effectiveness of new drug treatments and the emergence of drug resistant strains of HIV. By 1999 there were nine students in receipt of awards with several due to complete their studies within a year. As a result, and due to a very high standard of applications, four further awards were made to start in 2000.
But unfortunately none of the students decided that AIDS medical research was the career for them. There were other areas of research that seemed to be more attractive. But through the studentship scheme we met and funded Ilesh Jani. This resulted in our HIV overseas work in Mozambique. There is more about this and what we did on the AVERT's overseas program page.
The National Study of HIV in Pregnancy & Childhood
The one exception to the ending of the medical research projects waas the now renamed study that we had been funding at the Institute of Child Health. This was a national confidential reporting scheme for pregnancies in HIV positive women. As well as the babies born to HIV positive women and other children with HIV infection and AIDS in the UK and Eire.
This study amongst other things made a major contribution to such issues as the role of antenatal HIV testing policies in preventing paediatric HIV infection. These policies have resulted in many fewer babies being born with HIV infection than in many other countries. Alongside the journal articles and presentations at meetings, there was also by 1997 a widely circulated newsletter. This gave updates on the statistics collected by the project, as well as short articles on related topics. It was said of this work that:
"This study makes a vital and practical contribution to medical research on HIV and AIDS in children, and is unique. The information gathered is used by individual doctors and midwives, by the national professional bodies, by the voluntary sector and by health and social services at local, national and international level"
However, there was much more clinical information becoming available in this area, and although important the project was starrting to become more routine surveillance. So discussions were held with the Department of Health who in 1998 took over from AVERT the funding of this work. Renamed once again as the National Surveillance of HIV in Pregnancy and Childhood the study continues in 2020.
Fundraising, Cowspotting and Offices!
There hasn't been a lot to say about AVERT's fundraising, except that I started it almost as soon as we started AVERT, and I continued on and off for the next twent-five years. Sometimes I had the help of a fundraising assistant and sometimes I didn't. But I kept on writing letters and talking to people, and somehow the money came in. For example, in the financial year 91/92 we raised £153,000 and others years around that time were similar.
I think that it was partly that I believed so much in what we were doing, and the need for it, that this encouraged people to give. But I never really enjoyed fundraising, it was the AIDS work that I was concerned about. So when we had enough money for what we immediately wanted to do, I tended to leave the fundraising and concentrate on what we could do about AIDS. Then when we urgently needed more money I would start fundraising again.
Generally other people held events to raise money for AVERT, but we did decide to hold an event to mark AVERT's tenth anniversary in 1996. The event was called "Cowspotting" and it was held on the farm where Pete and I lived, although it didn't of course involve live cows! It featured performances from up and coming local bands and club DJs. It was great fun, and it raised AVERT's local profile as well as raising some much needed money.
In 1991 AVERT had moved from the farm to some small ground floor offices in Horsham. At this time I had the assistance of just two full time staff and some volunteer help. The growth in AVERT's publications program and other work, and the resulting increase in staff, meant that these offices were also soon outgrown. In 1998, by which time AVERT had eight staff, we moved again to larger premises we had purchased just a few hundred yards away.
The Development of AVERT.org 1997 to 1999
By early 1997 we had about 25 pages on the site. We then decided that we no longer wanted to operate as part of the OneWorld group. But what did we want the new web address to be? I nearly chose http://www.aids.org, but I knew from my own experience of visiting websites that I sometimes didn't know who they had been written by, so http://www.avert.org it was. There was no .uk at the end because from the very start I knew that the site had to be international.
During the week of World AIDS Day 1997, by far the most popular week of the year, over 15,000 pages were read on the site, and in the corresponding week of 1998, with the site having grown to around one hundred pages, the figure was 70,000 which seemed a truly remarkable figure at the time. The Lancet medical journal commented on the site in November 1998, and NetGuide made us site of the day in February 1999. By March 1999 the figures were 12,000 people visiting the site during an average week and they were accessing over 25,000 pages of information.
By 1998 we had developed a quiz to run on the site, and we also for the first time put one of AVERT's books on the site, where it could be downloaded and read for free. This was at the same time as the book was published in hard copy format. Initially with the website we told people about the booklets and other resources we had available. With the booklets we offered to send a free copy to anyone interested. However, by 1999 we were finding this impractial as so many of the requests were from overseas resulting in high postage costs. So we started putting the booklets on the site as well. We had also by 1999 begun to realise though some of the messages sent to us just how powerful an educational tool a website could be. Typical messages sent to us were:
"It [avert.org] doesn't patronize teenagers like most others and isn't scared to mention certain things"
"excellent, beautiful site! Informative and thorough. Thank you!"
Sometimes with the website, and indeed with other things, opportunities arose which if we acted quickly as a small organisation we could achieve things which were no longer possible once larger organisations became involved. Advertising the site on search engines was an example of this. I discovered in 1999 that I could arrange for the AVERT.org home page to come top on a large search engine when people looked for the word AIDS and that it only cost $0.02 for each click through.
I quickly obtained a budget of £1,000 for advertising the site and this was a highly successful way of making the site better known. Just a couple of years later many other people were advertising their sites and it became prohibitably expensive. We never again paid to advertiise the site.
Over a period of just three years the increase in the use of the site had propelled the site to being probably (we knew our own figures during this period but not those for other sites) the most popular HIV/AIDS website in the UK and one of the most popular in the world. AVERT had also as a result started to truly become an international organisation. However, there was relatively little discussion about this or the website at Trustees meetings. This was probably because we were too preoccupied with coping with the organisational changes required.
The Most Difficult of Decisions
Since treatment became available for AIDS in the mid 1990s, the publications program had been in slight decline and by 2000, with the growth in the internet, we were also beginning to hear that sometimes in a classroom a teacher would use pages printed from the AVERT website, rather than going to the bother and cost of buying in booklets. In contrast the website was still attracting an increasing number of visitors each year.
One problem we had always had with the publications was that as the printing costs were so high (let alone the development costs). we had to charge for multiple copies of booklets and individually for most copies of the books, although we could and did give out many copies for free. Even when we charged it was still it was still less than even the cost of printing. But there were still many people who complained about the cost , and we had to go to the cost and trouble of endlessly chasing people for payment.
With the website the costs weren't going to be so high that we needed to charge, and therefore we could put the information up. People, whoever they were, and what ever country they were from could come and read it at no cost. It felt like the right course of action for a charity.
It was unclear how many people would eventually have email and internet access but the website rather than the printed publications did seem the way forward. So after much consideration by the trustees of AVERT it was formally decided in September 2000 that the publications program would end at the end of March 2001. By the time the publications program ended, AVERT had in total produced and distributed more than three million, three hundred thousnd bookets and leaflets.
Why was it such a difficult decision?
At AVERT we had spent, and particularly I had spent, many years in building up what appeared to most people to be a very successful publications program. At the height of its success in around 1994/5 we were producing and distributin more than 650,000 booklets a year, along with teaching packs, books and reports. Why should we now wish to close it down?
In some ways it was the format of the information that was going to change. We planned to put the publications on the website where they could be read for free, by people not only in the UK but also from around the world. With the website we could concentrate on putting up information that would have the greatest possible educational impact, rather than spending the time on dealing with printers, orders, and people who wouldn't pay.
Of course the great unknown was how many people would eventually have internet access. In the UK the numbers were still very small, but we thought that if one day perhaps a third of people in the UK might have internet access then the decision we were making would be the right one. If we had known then that by 2012 more than ninety per cent of people in the UK and many people around the world, even in developing countries, would have internet access, then the decision would have been so much easier.
Changes in Offices and Staff
It was unfortunate timing that we had moved to larger offices in 1998, and by 2001 we were ending the publications program and needing a smaller amount of space. A variety of options were considered including moving and selling the building or alternatively converting the storerooms and letting out the spare office space. We eventually decided on the conversion, and that AVERT would move to the converted store rooms in order that the "nicer" area that AVERT had previously occupied could be let for as much rent as possible.
With the ending of the publications AVERT needed fewer staff, but some people left because although they liked working on the printed materials they were not keen to transfer to working on a website. Others just wanted a change, and so in the end nobody needed to be made redundant.
You might like to read about how AVERT started working overseas, that is outside of the UK
This page was last updated in April 2020
Author Annabel Kanabus