Most people with HIV start taking HIV treatment (sometimes called antiretroviral therapy, ART or HAART) sooner or later. Maybe you are preparing to start, or maybe you know someone who is. Part of getting ready is thinking about how treatment may affect your life. Here we suggest some questions to consider. And two HIV-positive women share their stories of walking the HIV treatment road. View or print our handy ART Start Checklist, which identifies some of the issues you may face when starting treatment.
HIV treatment reduces the amount of HIV in the body, allowing the immune system to partially recover. More importantly, by taking ART and staying on ART, your chances of living for many years are tremendously increased. We are now learning that ART can lower the risk of HIV passing to sex partners in certain situations. For some people with HIV, this is a reason to start treatment. But the most important reason to start treatment is to maintain your health.
Treatment can mean different things to different people. You may see the need to start treatment as a sign that your health has deteriorated. Or you may think of treatment as a positive step that you're taking to maintain or improve your health.
To keep your treatment working, you must stick to your pill-taking schedule (this is called adherence). Skipping doses can lead to drug resistance, which will cause your treatment to stop working and, ultimately, will limit your treatment options. Before you start, you want to be sure that you're ready to take pills every day as directed.
Taking medication on a daily basis will have an effect on your life and your lifestyle. Think about your daily routine and whether you'll have to make any changes to accommodate your pill-taking schedule.
Who knows your HIV status? Could taking meds or having them around your home or workplace reveal your status to anyone? If this could be a problem, think about how you might be able to manage it.
Side effects don't affect everyone the same way -- for some people, they may be barely noticeable, but for others, side effects can interfere with daily life. Look at the most likely side effects of the drugs you're considering. Are you more worried by the prospect of some side effects than others? Before starting treatment, try to learn as much as you can about these side effects and how to cope with them. Usually, there is quite a bit you can do. The good news is that medications commonly prescribed today for people starting treatment are generally well tolerated.
Antiretroviral drugs are expensive. Some people with HIV have private insurance, often through their job, that can cover some or all of the costs of antiretroviral drugs. Other people rely on provincial or territorial assistance programs to cover their prescription drug costs. Talk to your doctor and your pharmacist about this issue. You can also check out Federal, Provincial and Territorial Drug Access Programs.
Feel free to discuss these questions with your doctor. You could even take this ART Start Checklist to an appointment and use it to discuss your treatment options.
Living with HIV since 2005
At the end of 2010 I found a new HIV doctor, around the same time that I started to think about treatment. My previous doctor had never suggested treatment, and I was content with his position because I felt fine. I wasn't for or opposed to taking treatment, I was just happy that I was in good health.
In contrast to my previous doctor, my current one talked about treatment during our first visit. I supposed that he was preparing me for the eventuality of starting medication. This immediate in-depth talk on medical options had an impact on me: It made me think about the seriousness of having HIV. During our talk, he discussed the importance of sticking to treatment after starting. As he spoke, he referred to a chart of antiretroviral drugs on the wall in his office, explaining the different families of drugs and exploring options for me.
At that time, my CD4 count was between 400 and 450 and my viral load was around 100,000. These counts were standard for me. I have never been overly concerned with counting the numbers. My approach to managing my infection has been to be aware of how my body feels. I attribute this approach, in part, to Tom, the amazing support worker I met soon after my diagnosis. He encouraged me to listen to my body and not become obsessed with the numbers.
Recently, my HIV doctor talked to me about research that suggests that it's better to start treatment earlier rather than later. So I thought more about treatment, and I talked to a few trusted friends who live with HIV, including Tom (he is no longer my support worker, but rather, a dear friend). They suggested that it was a good time for me to start therapy. Having these people weigh in on the situation has been instrumental in my decision-making process.
At the end of 2011, I passed a milestone: I completed my graduate studies. With that stressful journey behind me, I feel that now is a good time to start my life with medicines. I have worked to get myself on my partner's work health insurance program. When Tom recently asked me whether I was ready to start -- one of the most important steps in preparing to start -- I answered, "Yes."
I am confident that I will be able to stick to my med schedule. I do not want to experience drug resistance, so this is a motivator to keep on track with taking my pills on time. Some of my family members have serious diabetes and they inject insulin several times a day. They manage their lives with a difficult, chronic, medicine-dependent condition. Moreover, other family members do not have access to medicines for life-threatening ailments. So, I tell myself that if they can do it, I can do it too. Above all, I'm grateful to live in a place where I can get the drugs that I need to stay alive.
Living with HIV since 1989
I was diagnosed with HIV one month after my partner died of AIDS from a blood transfusion. When I was diagnosed, they said: "Get your affairs in order. You have about two years left to live." It was horrible.
I felt cheated and angry with my partner, even though it wasn't his fault. I figured that there was no point in going to a doctor because I was going to die anyway. I had always done the right thing and my life had been boring, so I said to myself, "Now I'm going to have a good time. I'm going to party, do everything I want to do, live life and then die." I didn't see another doctor until 1997.
I heard one night on the radio that they had found meds that could save people with HIV. When I finally got my blood tests done, my viral load was 2,000 and my CD4 count, 795. My counts stayed high until 2011. Then, during a very stressful time, they dropped from 459 to 79 in just two months. With that, my doctor said, "You have to start meds today."
It was stressful not knowing how I would pay for my meds because I had no health benefits and no disability insurance. Also, I feel that I didn't get the support I needed, which was really hard. Maybe it was because I worked in the health sector and people didn't think I needed it. So I turned to my family for support and did my own research.
I had one serious complication with starting treatment. My doctor told me that I'd have to stop the steroids I take for my asthma because they interact with the HIV meds. I did, and I developed serious breathing problems as a result. I repeatedly told my doctor that I couldn't breathe. He just kept telling me to lose weight. Then one day last September, I was having such trouble breathing that I went to the hospital. They immediately put me in the intensive care unit because my blood oxygen level was so low. I almost died.
Otherwise, I haven't had many problems with ART side effects. I was tired for the first month but now I have no problems at all. The main issue is with my breathing.
I take my pills with my supper. If I'm eating out, I bring them with me. It's not like people know they're HIV meds; they could be anything.
Overall, I've found it pretty easy to be on treatment and I wish people hadn't made it sound so scary. For me, the side effects weren't as bad as people made them out to be. Hopefully, some people will hear my story and think, "Well, maybe treatment is not so bad." For me, it isn't -- and it keeps me alive.
For more information about starting and staying on HIV treatment, check out A Practical Guide to HIV Drug Treatment. You can also order print copies through the CATIE Ordering Centre or by calling 1.800.263.1638. The guide is free for people in Canada.