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.

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.

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.' 

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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.

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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.

Last reviewed May 2017.

Last updated May 2017.



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