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Making decisions about HIV treatment

While doctors will have good ideas about when to start taking anti-HIV drugs, many of those we interviewed wanted to be involved in making decisions about their treatment. Those who were diagnosed early had a healthier immune system and so they usually had more time to decide about their treatments. One person did this by setting himself a fixed amount of time to focus on his treatment choices and then make a decision. Other people (especially the African people we talked to) said they turned up in hospital very ill and they were diagnosed with HIV that way. These people had less time to decide about treatments since they often needed urgent care: 'I didn't have the luxury of sitting there spending months deciding what combination therapy I went on,' said one man.

It is clear from the people we talked to that modern HIV treatments work, have fewer side effects and are easier to take than treatments that were around in the late 1990s and they have improved even further since most of these interviews were collected allowing people o live longer and healthier lives. The people who talked about making their own decisions about their treatment were not against HIV medication. They were more concerned about when - and what - medications they should start, and anxious not to 'rock the boat' too much if they were feeling well. 

Many people said their doctors were happy to provide them with the support they needed to make their own choices about treatments: 'They are willing to work with you.' Some people believed that doctors were now better trained to support patients to make decisions. People who had become knowledgeable about treatments felt they were in a good position to work with their doctors to make treatment decisions. Being involved in making decisions about treatments can be challenging but rewarding.

 

He is grateful his doctor allowed him the time to find out for himself - and decide about - his...

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Age at interview: 39
Sex: Male
Age at diagnosis: 34
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And when I was diagnosed, the current treatment I am on, which is Combivir and efavirenz was' I think it was' either had only just been fully kind of released or it was still on large scale clinical trial. But up to then, I think, you know that, you, you, you kind of you were hearing all these horror stories about, about treatments failing, or treatments with horrendous side-effects. Not a very good success rate, even, even back, back, even in 2000. So you, know it is a complex, it is a difficult decision to make. 

And I am very, very grateful to my, to, to my doctor, because he let, he allow, he allowed me the time to make that decision. Even though when I was diagnosed my, my tests were pretty low and' and I have heard since of other instances where the doctor said well you must really start treatment now because' But he, it was a full, a full, and I think it was eight or nine months before I started. And I was determined to, first of all to establish whether I... whether I definitely needed to start treatment now. Because I felt that you know the, the treatment itself has probably some bad side-effects in the long term. And so I, if that's the case, I want to start as late as possible.

And the other thing that was going through my mind and which my doctor mentioned to me at the time. He said sometimes when you, when you have just been' when you have just contracted HIV you can go through a short phase where the HIV count is, is, is very high, and you can recover from it and keep going for quite a while without actually needing treatment. So I also wanted to establish that' that I wasn't, that wasn't the case. I also wanted to, to take time to understand the various treatments available, what they do, what good they do what bad they do. And talking about' about life instinct and about death wish and about all these things yeah, it's actually a very ambiguous position to be in because' You, you read all the, all these horror stories about, about the treatments and you know a few years before then, monotherapies had been used and with disastrous effect. And anyway so, so you carry' and it's very difficult to kind of decide where your life instinct lies.

 

After attending an HIV conference he negotiated with his doctor to change his medication. (Read...

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Age at interview: 45
Sex: Male
Age at diagnosis: 40
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I looked at the role of, you know the thiamine derivative drugs, you know the, like the AZT, DDI. And I noted that most of them they, they are the ones causing you know, mitochondria DNA toxicity, and to some extent, lipodystrophy. That was my understanding. And of course one of my drugs was that one. 

And in February this year there was, you know the Aids Conference in Boston, and there was one paper which presented to there where was a treatment whereby you can use two drugs minus the thiamine derivative. So when I went in for my appointment with my doctor I said, 'Well look can't we try this?' So it was quite a, a very sort of dynamic discussion, yeah. 

So he said, 'OK we can try it.' Because what we have seen from this paper they presented is that you can actually be on this one and actually the… the effect of long term in terms of lipodystrophy isn't that bad. Although it cannot be completely be reversed. But I think it is the effect isn't that bad for long term. 

So that was sort of looking at, you know the length of time I'll be on the treatment. I said, 'Well that sounds fair.' You know sensible to go for that. Then the, secondly I think the only downside to that combination, two combination, was that I think you ran the risk of having a high cholesterol level. But obviously I said, 'Well I mean it's something I can monitor by what I eat.' So we somehow, between myself and my consultant we agreed.

People sometimes wanted to delay going on their HIV medication for as long as possible because they believed they would benefit by being on the drugs for a shorter time e.g. less exposure to toxic chemicals. Some people already on medication decided to stick with their current medication and put up with side effects if their immune system was improving. Others were reluctant to think about taking different medication with unfamiliar side effects.

 

Explains why he will put up with side effects and stick with his current medication.

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Age at interview: 63
Sex: Male
Age at diagnosis: 48
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And my CD4 count has been creeping up year by year and my… my doctor said last time, when I'd said this is the highest in my life. The time before last that is, and 380 I think, he said, 'Well don't, it might go down.' He said, 'I like to warn people because these are, things are variable.' So when it was done the next time it was 410! And viral load undetectable, so I'm, I'm very cheered by all that. But I'm… I do have some problems with treatment, there are side effects which are not in considerable, but I'm fearful of changing because I just don't want to give up… if I'm going to live another 20 or 30 years like a lot of my family, then I don't want to have given up things that still work if I might need all the options in the future.

 

Explains why he has decided to stick to his current combination of HIV medication.

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Age at interview: 41
Sex: Male
Age at diagnosis: 38
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Yes. Well I mean there, there's been quite a few, you know, occasions when I've picked up the pieces of material, leaflets and booklets and stuff, you know, on HIV. And, and reading about the, you know, the new, new forms of medication. Because they keep coming up, don't they? New, new different forms of medication. And you just read, I just read through it and think well no, just stick to what I've got [laughs]. You know, it, it was [pause] it was painful enough to find out that I'd got this illness to start with, let alone me trying in any way to deliberate on how I was going to deal with it from that day on. Luckily for me and, and from' for' Luckily for me and, and as a result of the support and assistance of other people, I've, I've been able to remain alive up to now. And hopefully for quite a number of years to come. You know but I don't want to change anything. The way, the' I don't want to change anything as it is now. I don't want to change it. I don't want to change the medication or anything like that. I just want to leave it as it, as it is. You know? And if the worst comes to the worst so be it. You know, 'che sara sara' and all the rest. That's what I believe in. Yes.

How people felt about being on medication played an important part in their decisions about treatment. One man said, 'I took the first tablet. Which was a very painful moment. Because at that moment I was simply accepting that I was HIV positive.' Another man said, 'I knew… this is the time (to begin medication) and this is when I need to do it. And my doctor said, "I do not know how you did that, but you have chosen exactly the right point" (to go on medication).' Yet another person said, 'Obviously you have to feel right as well (about taking medication) because there is definitely a psychological thing about taking pills every day.'

The role of AZT (Zidovudine)

Some gay men we interviewed had lived through the earlier failure of AZT therapy (used on its own) to prolong life in the 80s and early 90s and were cautious about the new anti-HIV drugs when they first became available in 1996. They needed to see for themselves the evidence that the drugs were effective - either by talking to friends and people in waiting rooms, or observing the effects of the drugs on other people. One man initially 'Fought tooth and nail about going on protease inhibitors… because that seemed to me it was the next thing to death.' 

 

Talks about how he discovered that the new treatments work.

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Age at interview: 57
Sex: Male
Age at diagnosis: 39
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Went to the [name] clinic, oh back in, God knows how many years, seven years' was it seven years ago? And I met an old friend there who was absolutely booming. And I said, 'Well what happened? Last time I saw you, you could barely walk and you were gasping and you were booking funerals.' He said, 'Oh I'm taking the pills. They're wonderful.' And I thought well heavens above, this guy's 10 years older than I am and if this is what they're doing for him, then I'm going to have some.

AZT therapy is now an important part for both pre-exposure prophylaxis (treatment given to prevent HIV) and post-exposure treatment to reduce of mother-to-child transmission of HIV during pregnancy, labor, and delivery.

Working with doctors

People felt that was important to have a connection with their doctor, that you can trust the doctor, and feel cared for. Without the 'human touch' it is difficult for people to feel good about their treatments.

 

Compares an encounter about treatment with a HIV consultant and a counsellor.

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Age at interview: 38
Sex: Male
Age at diagnosis: 24
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I can remember him (the HIV consultant) saying we did another test and we've measured your T cell count, your T cell count is 400, that indicates that your immune system is on the brink. Now I clung to the fact that it took ten years for' ten years for you to progress from initial infection to AIDS and death. But here was I finding my immune system was already half gone' and I was like oh my God, I didn't have a clue what a T cell count was. And then he said you'll probably have to start AZT immediately and then it was explained you know' then I was like out of his office and there was obviously the counsellor who was actually completely different you know, he was much more sympathetic and human. He took some time to explain things and make an appointment, a follow-up appointment for me. And you know I mentioned the AZT and he just said don't worry about that you know'

The value of the human touch was highlighted when people saw their doctors as 'like friends.' Some had even chosen their doctors because they thought like themselves: 'He had a conservative approach which suited me very well,' said one man. If people feel a human connection to their doctor they can be more open to treatment advice and sometimes persuasion: 'I trust him enough to think well, if he's saying this, he cares about me, and he has an interest. I am not just another number coming in.' Another man said, 'If I trust a person, and feel I'm in sympathy with the way they think about things, then I'm very happy to accept their advice.' Sometimes people did not mind their doctors taking the lead in treatment decisions, especially if they were happy with their care. However, some doctors were not seen as skilled in involving their patients in decisions.

 

Her doctors were good at communicating with her so she was happy to go along with their decision...

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Age at interview: 44
Sex: Female
Age at diagnosis: 44
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But I think the most helpful I've found is just the talking to me. I think it did a lot of good. I thought both teams, my, my tropical doctors ones and my TTP (Thrombotic thrombocytopenic purpura) ones, they were very good at communication. They were really, really good. Like they disseminated results of bloods in time. I don't think I had any problems. And they kept me up to date as to what was going on.

Why is that important?

Well, because I suppose that helps your planning and focusing as well. And looking forward to the next day. Like one example I'd give you is like when they told me they had found HIV, that I was HIV positive. And the next thing they told me was, 'We're going to start you on retrovirals.' And the following day they started me on the retrovirals. Which I thought, this is quick. They only diagnosed me yesterday, and today they're, they're starting me these tablets. I thought that was quick. It was done very quickly. And they… I thought that was good. Because, as they say, that they need to treat the HIV… start treating the, the HIV so that they can treat the TTP as well, you know.

 

He was used to collaborating in treatment decisions with his HIV consultant and felt his...

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Age at interview: 37
Sex: Male
Age at diagnosis: 24
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And then my oncologist came in. Now the oncologists at that time, unlike HIV doctors, were still on rotation. And so I'd had this particular one for six months and he was very much an old school doctor where I prescribe - you take. He didn't really work very well with me on the level that I had been used to. And he said well you know the one that you have had hasn't worked and we are going to switch you now to this one other option. I cannot think what it was called, but it was something that had been used in the States. I think it had been used for ovarian cancer, it is highly aggressive and he said you know, he said we think that it may work for KS, there have been some trials in the States and it does seem to be working for KS. Now it is much more aggressive than the other ones you have, he said. So you know it will have quite a negative impact on your white blood cells, and you will lose your hair, and this, and he went through this list of side-effects' these are the possible things that could happen. And he's standing there telling me this at my bedside and my clinic doctor is there standing next to him making notes. 

And he finishes up and [name of HIV consultant] my doctor turns to him and says what, and you really think he is going to take that? And ugh [name] the oncologist says 'Well. Yes' He looks at me and I look back and look at him and I just laugh and [name of HIV consultant] laughs back, and I said, 'No I won't take that.'  He said that you have to because it's your only choice. I said, 'No, no, no it's not the only choice.' What I will take is the medication you were giving me before. But I will take it again at three weekly intervals, not four weekly. He said that doesn't make any difference, he said, me moving it a week wouldn't have made a difference. I said you moving it a week made the difference, I tell you. I know my body. I know how I felt after every three weeks when I had the chemotherapy, the soothing effect of that I felt.

 

She was distressed about the side effects of her medication, but the doctor focused on the...

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Age at interview: 33
Sex: Female
Age at diagnosis: 27
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In-grown toenails… The nails, instead of growing outwards, they can grow back in and it's very, very painful. And it won't stop doing that unless you stop taking the medication. So I had to go for surgery for my toes, that's a really… they had to pull it out and cut off a big chunk of it, it was quite… it was very problematic. So I had to complain to the doctor. I would say my doctor was slightly difficult, I know she was just aiming at a very good CD4 count but I was really suffering... every time I went, I complained about the headaches, the rash, my skin really got bad. She explained again that it's… again because my immune system's going up, so that's why I was getting the rash. I was tired, breathless as well. I used to get breathless, yeah. But when I really had the ingrown toenail I really couldn't take it anymore, I said no that will have to change…

Last reviewed May 2017.

Last updated May 2017.

 
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