It can take time to accept anti-HIV medication, to accept a HIV diagnosis and that the medication actually works. You also need to accept that you may need the medication for the rest of your life: “I remember getting really upset, I remember sitting on my bed looking at these tablets thinking, ‘God, I’ve got to take these for the rest of my life.'”

For anti-HIV medication to work, it is vital to take the medication correctly as HIV is able to develop resistance to a single HIV drug very easily. This means taking all of the drugs prescribed (usually a combinationof three), in the right doses, at the right times each day, with or without food as instructed, and checking with the doctor that other pills (prescribed, over-the-counter, recreational drugs or herbal) will not upset your anti-HIV medication.

It was easier for people to accept their medication when they felt positive about their pills, e.g. by comparing them with taking vitamins, or seeing them as nourishing the body. People also accept their medication better when it is working, side effects are minimal and the regimen is not too difficult to follow: “I don’t find having medication morning and evening changing my life.” Another man said, “I’ve experienced being ill and I’d quite happily continue with the pills rather than not because of the consequences of not taking them.” One woman said, “I know now that I wouldn’t be well if I don’t take the medication. I take it like a vitamin pill now.” It could be difficult for people to accept their medication when they saw it as a constant, unwelcome reminder that they were ill.

Remembering to take medication

People we spoke to were very aware that they needed to be really strict about taking anti-HIV medications. Being so accurate with taking medication can stop a drug-resistant virus developing. Missing pills or taking them irregularly increases the risk that the virus will become resistant to the drugs. Some people saw being strict about medication as a matter of life and death: “I mean if you have to consume pills to stay alive you consume pills.”

But some people can have difficulties taking their medication correctly even when they know it is important. When there are complicating issues such as needing to take many tablets at different times, eating at certain times and travelling, people can run into difficulties. One man stopped taking his medication because of side effects and inconvenience: “I thought I really can’t do this anymore, I want my life to be good rather than to live for another 10 years. And then I got PCP (pneumocystis carinii pneumonia).” Another man explained why he would not give up with his medication: “I know some people that have done fairly well on drug therapies and stopped. And become ill and died. Simply because they cannot deal with taking the drugs.”

Stigma and poverty can make it particularly difficult for HIV-positive people. Some of those we interviewed were not able to afford enough food to take with their medication, and were vomiting them up. Or had to rely on soup kitchens and food provided by charities and HIV support groups to get their main meal. Others had to hide all of their medication and find secret places to take their pills so as not to attract unwanted attention.

Even people who face intense stigma and need to be secretive found ways to take their medication. “I take it with me in my purse and I don’t feel uncomfortable, I go into the ‘ladies’ and I take it.” “When someone says ‘what are you taking?’ I say, ‘I’m taking my painkillers,'” said one man.

The people we spoke to were highly motivated to overcome their difficulties in taking medication: “I did it with all my might,” said one man. Many people we talked to reported much better than 95% adherence to medication. In recent times, some combinations of anti-HIV drugs have become much simpler to take (e.g. one or two pills once a day), and people found these kinds of combinations far easier than the earlier combinations: “The feeding process and the timing process and the waking up process were just almost unliveable. But these days everything’s moved around.”

People are all different and live very different lives. Many people said you need to find a way to take medication in a way that works for you: “Tailor it to your own needs.” “It becomes easier if you begin to do things that will suit you as an individual, not a consultant,” said another. “This is actually how life is, not what the textbooks say ought to be,” said one man. While some people are very precise with their medication, other people are flexible, while still seriously considering advice from their doctor. Being flexible seems to make it easier to take medication on time: “As long as they are roughly spaced 12 hours apart that seems to work perfectly well,” said one man who had to take pills twice a day. “It’s not exactly the same time every day, sometimes it’s 10 in the evening, sometimes 9,” said another man.

Many people are good at remembering to take their medication: “I don’t know how I do it, I remember,” said one man. “It’s not an option to forget,” said another. However forgetting was a problem for a number of people. After a while, taking medication becomes automatic, and people stop thinking so much about how they do it: “I don’t use an alarm anymore, my body just works with it,” a woman said. The problem then is that you might not remember even if you have taken them: “The trouble is, I don’t think about it. And then I’ll be thinking half an hour later, have I taken one? Because I’m not even thinking about it.”

If drowsiness or memory loss is a side effect of the medication you are taking then the problem of missing medication or taking too much can be serious. One woman said, “I was confused and drugged most of the time, I was taking a lot of tablets.” “I was taking an overdose that is very dangerous,” said another woman. Putting the day’s medication into a pill box with compartments helped people remember to take their tablets.

Tips for taking HIV medication successfully

• Tell health professionals about any problems with taking medication so they can help you find a way to overcome your problems.

• Try to see pill-taking as a positive thing, e.g. like taking vitamins, having food, or as killing the HIV in your body.

• Remind yourself that many people have to take pills every day:

One man said, “My mother takes 8 different pills for various things. You know, it happens to a lot of people.” Another person said, “I took my father’s position. He has got his diabetes, high blood pressure. He is going to take those pills for the rest of his life. So there is no difference really.”

• If you are not yet taking anti-HIV medication, practise sticking to a timetable using vitamins or medication you are already taking for something else.

• If you are pregnant, think about how taking your medication will increase the chances that your baby will be HIV negative:

“I’m a bit more relaxed now, but when I was pregnant it was ‘9 o’clock’, you know – I wouldn’t miss it,” said one woman.

• Use alarms on watches, mobiles or clocks to help you remember.

• Associate pill-taking with routines like meals, brushing your teeth or putting in and taking out your contact lenses.

• Use pill boxes which group tablets into day of the week and times of the day.

• Don’t give yourself a hard time if you make a mistake since you need to make mistakes to learn how to take your medication.

• When away from home or travelling, take enough medication to cover the entire trip, and extra medication just in case (e.g. of delayed flights). Also put some medication in your hand luggage in case you get separated from your other luggage. Work out what you will do about time differences between countries.

• Check which countries you can travel to. Some countries restrict travel or residence for HIV-positive people:

The USA used to but lifted its ban in 2010 so people with HIV can now travel there without problems.

If people planned to travel abroad they got advice from others first about how to travel to such countries safely as well as not get separated from their medication.

Changing medication

People changed their combination of anti-HIV drugs for a range of reasons including if their HIV became resistant to their current combination, if they had bad side effects, or if there were combinations that were easier to take. Some worried that they would develop resistance to their current regimen and eventually run out of medication options. Those who already had a number of combinations and were resistant to several drugs took extra care in taking their medication so as to avoid developing resistance to more anti-HIV drugs.

Drug holidays

Generally, stopping HIV treatment is not recommended. Some people tried to stop taking their medication in consultation with their doctors for a period of time – this is called a ‘drug holiday’ or a ‘structured treatment interruption’. They found that their CD4 cells progressively fell and the HIV in their blood increased, and when they started to take their medication again side effects often returned.