HIV & AIDS Medical Research
In September 1986 I read a newspaper article concerning the need for research funding to study the spread of HIV among 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
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 among other things to produce more effective health education materials.
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.5 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, but which it was believed could be important in discovering whether new born infants were HIV positive, and 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.6 The study that was going to be carried out in collaboration with the Royal College of Obstetricians and Gynaecologists was to be a national study collecting information on all HIV positive pregnant women in the UK, as well as collecting information on their children as they were born.
The study was to be lead by Professor Catherine Peckham and 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 down the road to the tube, 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.