A Matter of Life and Death. Sue Armstrong
the liver. I didn’t know that could happen, actually. I’d written about hydatid cysts in the standard textbook of liver pathology, but I’d never seen this version of it.
That’s the thrill of this work: I’m looking at things which are either new versions of diseases I know, or genuinely really rare things, or even things that no one else has ever seen before. You’re kind of working on the edge all the time.
Tell me about your involvement with HIV and AIDS.
To my slight shame, I didn’t pick up on AIDS at the very beginning. It started nominally in 1981 when gay men in America started presenting with diseases no one had ever seen with any frequency before, if at all – that is, Kaposi’s sarcoma and Pneumocystis pneumonia [PCP]. In the AIDS calendar, 7 and 14 July 1981 are big days. That’s when Jim Curran of the US Centers for Disease Control [CDC] said, ‘I think we have a problem.’ He became the great man who drove the response to AIDS in the beginning. This is all in retrospect – I didn’t pick up on that at all at the time.
In 1982, I was here at St Thomas’ as a research fellow working on tropical infections with a charismatic pathologist, Michael Hutt, and we had a frozen section from a patient who had a lung problem, and no one knew what it was. Frozen sections are done during operations when surgeons want answers now so they can decide what to do. ‘Is it cancer? Do we chop out the rest of the lung? Is there something else?’ They’re sitting there waiting for answers and it usually takes five or ten minutes. The patient was called Terrence Higgins [one of the first people known to die of an AIDS-related illness in the UK]. Yes, him … Quite!
And he was under the knife?
He was. Maybe they thought he had cancer, I don’t know. Anyway, we looked at this and we just did not know what it was. But we knew it wasn’t cancer, so they closed him up; no more procedures were done. We looked it up in the textbooks and realised it was Pneumocystis pneumonia, which was the first case most of us had seen.
At that point the penny dropped: this was what we were then calling GRIDS – Gay Related Immune Deficiency Syndrome. AIDS hadn’t been officially labelled as that at that point. I remember that patient, Terrence Higgins, was looked after in a ward more or less to himself; he was treated like the proverbial leper. That’s one reason why the Terrence Higgins Trust was set up – to say that people shouldn’t be treated like this, and quite right. He died later of PCP and cerebral toxoplasmosis, a parasitic infection.
I left St Thomas’ shortly after that to go to UCH, so I wasn’t part of what happened here. But the name changed to AIDS, and then a group of people interested in AIDS grew up here at St Thomas’. Anyway, I forgot about it.
I was at UCH from 1983 until 1995, minus a year in Côte d’Ivoire in 1991/2. I got interested in AIDS not through anything going on at UCH, but actually because of Michael Hutt. He’s the grand old man, the main person in my professional life. Back in 1977, when I first realised that infectious diseases were interesting, I said, ‘Who knows about infectious diseases in Britain?’ and everyone said, ‘Michael Hutt.’ He was the professor of geographical pathology here – a unit set up to promulgate the importance of tropical pathology.
Michael Hutt had been at St Thomas’ in the 1950s as a junior doctor and a trainee pathologist, and then as a consultant pathologist. Then he decided to do something different, and he went to Makerere Medical School in Uganda as the pathologist. He was there through the 1960s. Mike and people like him – and there were a lot, all very famous clinicians, epidemiologists – made Makerere a jewel. There were loads of exciting things happening; it was virgin territory for describing diseases.
Mike Hutt retired from St Thomas’ in early 1983, and he gave me his practice, which was looking after diagnostic histopathology for mission hospitals abroad, particularly in Africa. I simply took over that work en bloc and built it up. It was partly cancer, partly TB, partly infectious diseases, partly just general stuff. These cases would come in by post. Surgeons in mission hospitals all over the place – but particularly East and Central Africa – would send in these specimens. They’d do operations, put the specimens in formalin, let them fix, then pack them up – usually in the ends of surgical gloves, which are very good containers, water-tight, tie them off with a piece of cotton or simply tie a knot in them like a balloon – and put them in an envelope.
We’d look at the specimens, write our reports and then send them back by airmail. I built that up because it was seen to be useful, and it was great fun. I saw loads of things I had never seen before – wonderful things, pathologically, that don’t happen in Britain.
One of the series of materials we were getting from overseas came from the Makerere School of Medicine in Kampala, Uganda – as I have mentioned, the best medical school in East Africa then, as now really. Among the stuff was a set of intestinal biopsies taken from people in Mulago Hospital under the auspices of two very active and dedicated clinicians. One was Nelson Sewankambo, a great Ugandan friend who is now Dean of Medicine at Makerere, and the other was Rick Goodgame, an American Baptist missionary doctor, who was an enormous enthusiast. They sent me all these bowel biopsies from people with slim disease. ‘Slim’ was the name given to a condition being seen in the early 1980s, and which we now know was AIDS. At that time, of course, we didn’t have the virus; HIV wasn’t known about till 1983. This condition had started in the southwest of Uganda, and had moved up country. The patients had wasting, and they had terrible diarrhoea, like cholera, and they wanted to know why. So the doctors started doing biopsies but the local pathology lab couldn’t cope, so they sent them to us.
It was obvious that there were some very strange things going on. One of them was a huge amount of an infection called cryptosporidiosis, a gut parasite that you don’t see much of now, but it was big then. It became evident that slim disease was gut cryptosporidiosis. We had a series of about 23 cases and we wrote up our findings in a paper with the title: ‘Ugandan AIDS: wasting disease is cryptosporidiosis’ – something like that. It was the first article published in a new journal called AIDS. Volume one, page one was us! Goodgame, Sewankambo, and my name tucked on the end. And that got me into the AIDS scene.
Then, as that was brewing up, two things happened. One was that the First International Conference on AIDS in Africa was held, organised by another remarkable clinician called Nathan Clumeck, a Belgian, who was working in Rwanda, where AIDS was also big. At that time, 1983/4, the first accounts of AIDS in Africa being an issue came out from Projet SIDA, which was a US-sponsored project based in Kinshasa and run by great people like Jonathan Mann [who died in an air crash in 1998], Peter Piot, Marie Laga, Anne Nelson and Robert Ryder … All these names! All history now. They were in Kinshasa in 1983 and they published a big paper in the New England Journal of Medicine which said: ‘There is AIDS in Africa, and it’s the same disease as in America, it just looks different.’
At the same time, Nathan Clumeck published a very similar paper which said, ‘We’re seeing the same thing in Kigali as well, and in Burundi …’ So gradually these reports were coming in, and Nathan organised a two-day conference in Brussels in November 1985, which was attended by about 100 people. At the end there were two press conferences held, one organised by Nathan that said there was a big problem of AIDS in Africa, and the other by a few black African physicians that said, ‘There isn’t a problem’!
Anyway, I met several important people at that conference, including Kevin de Cock, who is the most important AIDS physician–epidemiologist around now and is my best medical friend, really. After the conference we wrote a document for the Dean of the London School of Hygiene, saying that the School should get into AIDS in Africa ‘because AIDS is going to be very, very big’. In fact it is much bigger than we ever thought it was going to be.
Kevin then went back to CDC in Atlanta, and we remained in touch. And then I got a phone call from an extraordinary surgeon working in Kampala called Wilson Carswell, who said, ‘Come out. We know you looked through all this gut stuff and we’ve got to document it properly – AIDS is ravaging this country, it’s dreadful; come and see the hospital, you won’t believe it. Come and stay for a fortnight.’ Wilson met me at the airport; took me home for a shower and then to the hospital and just