I have worked with a wide range of people with HIV since about 2000, first as a PhD student working in an HIV clinic and then later as an MD—from long-term survivors who were diagnosed in the ’80s and ’90s to those who learned they were HIV positive in the past six months, from people in their 20s to an 86 year old.
What it means to live with HIV and to be on treatment varies dramatically depending on how and when you were diagnosed. If you were diagnosed with an opportunistic infection in an emergency ward 25 years ago, HIV and its treatment are likely to represent something very different than if you found out you are HIV positive because you went to an STI clinic for routine screening while you were healthy and well.
For those diagnosed in the early days, treatment used to mean something unpleasant—dreaded side effects and countless pills. So, sometimes, when I suggest switching drug regimens, a person diagnosed years ago will at first be very hesitant to switch because new drugs back then were sure to be a bad experience, very different from new drugs today. By contrast, some newly diagnosed people take the news of an HIV diagnosis almost lightly and don’t think it’s a big deal at all. It can even be hard to convince some people that they need another appointment.
Another example of how this dramatic shift in attitude plays out is that back in the day, everybody would see our clinic psychologist after being diagnosed whereas now only half of our HIV patients take us up on that support. I’ve certainly noticed a shift even in the last five or six years.
Most people do have concerns though, especially about their sexual relationships. One young woman who was born with HIV came to our clinic shortly after moving to Canada. She had settled into her new life as a university student and was starting to think about sex, disclosure and if she was ready to have a relationship. We talked more about the facts around transmission and ways to develop relationships and deal with disclosure than about medical issues. She is gradually thinking more about her sexuality and how she wants her sex life to look, something she had written off until a year ago. Other folks who come to our clinic are much less concerned about new partners and the risks of transmission.
But we provide everyone with information on how they can reduce their risk of transmission in the context of their personal choices, and we offer to talk to people’s sex partners. If they feel it would be beneficial to them, we have a frank discussion about sexuality and HIV.
What I try to tell people is that an HIV diagnosis is significant—it’s not something to trivialize—but if you get on effective antiretroviral therapy and we work on this together, you’ll be around well into old age. We’ll both be hobbling around my office together when we’re 102!
All my patients know my pill-taking mantra: If you take this, it will work, and it will probably work forever. So let’s work together to get you (or keep you) taking your antiretrovirals every single day. Text reminders, apps, alarms, stickie notes, whatever it takes. I tell people that most of us have bigger commitments than taking a pill once a day and going for regular checkups. With effective treatment and ongoing care, HIV can be very manageable.
Dr. Lisa Barrett is an infectious diseases doctor whose work focuses on people with HIV and hepatitis C. She is also an assistant professor at Dalhousie University in Halifax and a researcher who leads a team at the university’s Senescence Aging Infection & Immunity Laboratory.
This article by Dr. Lisa Barrett previously appeared at CATIE's Positive Side, here.
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