Gordon Scott worked in HIV medicine for 35 years latterly as Clinical Director and GUM Consultant, NHS Lothian Sexual and Reproductive Health. He retired in 2016. To mark his retirement we spent some time asking him about his experience. In the second of a two part interview he talks about the early days of working in the field and developments made in treatment at that time.
How did you treat patients in the early days?
In the 80s we were treating symptoms. So, PCP worked. High doses, but it was effective. Patients would get thrush so you give them ketoconazole, but then they would become resistant. Skin problems were much harder to deal with. If the person had retinitis, there was this stuff called Ganciclovir, an intravenous injection. But you were only treating symptoms. The virus was still destroying the immune system, so they just got a succession of more and more unpleasant things. Until eventually there was no more active treatment that would achieve anything. By then it was time to make them more comfortable. There weren't huge numbers of deaths in the late 80s, it was easy to manage them in the wards, but once Milestone became available... That was a big decision to make. We have the City Hospital and the Royal Infirmary actively trying to save your life, and Milestone is a hospice, it's a clear change, and an important decision to be made. Some people said 'I don't want to go there'. They were in their 20s and 30s. These were not people who expected their life to be so short.
This was about the time of the first world AIDS conference - did you go?
I went to every AIDS conference except the 1994. They were good to go to. The earlier ones were the best. Nowadays everything is on the internet within five minutes. But then you had to actually go to the conference. You learnt so much just from speaking to people. You got an update on where the knowledge was going, but you also got very practical tips on how to manage the problems patients were having.
The first World AIDS conference was in 1985 in Atlanta, Georgia. I remember it as clear as anything. There were two or three thousand delegates there which by World AIDS conference standards now is tiny - it's usually 25-30 thousand people now. Sandy McMillan and I had done a trial on new antibiotics for gonorrhoea the year before and had some money in the fund to go to Atlanta. So it was us, and two haemophilia doctors from Edinburgh and Dundee, and a guy from what is now Health Protection Scotland. Five people from Scotland, and I am not sure if there were even five people from England. If there were, I didn't meet them. Most of the doctors were from America. The most striking thing about the conference was the number of patients. It was absolutely heartbreaking. I'd never seen Kaposi sarcoma before, and everywhere in that conference there were guys with very visible signs of Kaposi sarcoma, often their face was affected. And they were desperately, desperately looking for a treatment.
When "The Dallas Buyers Club" film came out it didn't capture the desperation. In Atlanta, honestly, the desperation was just palpable. They were dying, and they knew they were going to die unless someone finds a treatment. And it wasn't there.
Were there lots of trials of different drug classes in the UK?
Not on a massive scale. When HIV was identified - it was HTLV 3 to begin with - that changed everything. Now you had something to test. AZT was a drug that already existed. Some antiretroviral drugs had been tried out as cancer treatments in the 60s and 70s and they were all on the shelf, you just pull them down, try them in the test tube with HIV. AZT was what worked. The first big trial was done in America; it stopped after 3-4 months because the effects were so dramatic, and then AZT became available. This would be 1987.
But there were all sorts of things we didn’t know about it. First of all, the initial dose was 200mg six times a day. The patients had to set the alarm for 4am in the morning to take the sixth dose. It's not surprising one of the side effects was insomnia. You'd be scared to go to sleep in case you slept through the alarm and missed the dose. It soon turned out that it was a much bigger dose than was required, so it was cut down to 250mg twice a day. But the real trouble with stopping the trial as quickly as they did was that they didn't discover that actually after 6 months the benefit was gone; it only works for a few weeks. It just basically kills a bit of the virus, and then the virus rebounds and the whole process carries on
When AZT first became available it was in really short supply. There was a guy in the Scottish office and we had to call and tell him we want to give AZT to this patient and explain why. And he would go "This sounds alright, this would be Scotland patient number 12" and we had to write that on the prescription to the pharmacy. If it didn't have a number on it, it got rejected.
In 1995 I went to Vancouver. Two things came out of that groundbreaking conference. First of all, it was viral load. Before then you had no way of predicting the future for someone, all you had was CD4 count, which told you what had happened already. Your CD4 count is 25, bad things have happened to your immune system. But if it's above 400, you don't know what to think. So to learn about viral load was phenomenal. It was presented by John Mellors. He had these little lines which showed that if your viral load is quite low, then you do quite well. If your viral load is high, you don't do well. A sort of prediction, the expected trajectory, such an important thing when you are trying to work out how to manage somebody.
The second thing that year was the first phase of triple therapy, with viral load data showing that if you give people three drugs, their viral load is undetectable. Obviously we didn't know how long it would last. We'd been here before with AZT, would these three drug combinations do any better?
Understanding viral load changed the practice dramatically. I came back from that conference and asked our virologist to get me some viral load tests. In a kit of twenty there was one positive control and one negative, so you had 18 tests and they were 50 quid each. Twenty years ago it was a reasonable sum of money. We didn't have budgets so I said, 'Buy one and I'll find a way of paying for it,' and the virologist was dead up for this. So we've got these 18 slots and now we need to look at our patients and decide which ones we intuitively feel have a high viral load. We chose them really well, and most of them came back like 200-300 thousand, quite high. We went to the commissioner, the guy with the money, and said, 'This is a viral load thing that predicts what's going to happen. We've done 18 of our patients, look at these results! We need to know if this is typical of patients across Lothian, in which case we are sitting on a time bomb here.'
'Alright,' he says. 'We'd better get a viral load of everybody, I'll pay for this'.
'Will you pay for these 18?'
'No', he says. 'You bought them so that's your problem'.
So now all of a sudden we have these people that seem fine, their CD4 count is 500-600, but their viral load is a hundred thousand, so they all went onto treatment. And the drugs bills absolutely rocketed. At this point NHS Lothian panicked. Up until then the reason to start a patient on treatment was CD4 count of less than 200. What the viral load did was it created a group of people with CD4 count greater than 200 but with high viral loads. So anybody with a viral load of over 55 thousand was offered treatment, and it was a substantial number of patients all in one go. Then NHS Lothian said, you can't give the combination therapy anymore. They got pilloried mercilessly by everybody: TV, radio, there was a protest at the parliament. So they had to make a really humiliating climb-down. They didn't handle the situation well and it blew up in their faces quite substantially.