From CATIE's Positive Side, Dr. Lisa Barrett:
"What it means to live with HIV and to be on treatment varies
dramatically depending on how and when you were diagnosed."
Monday, 17 October 2016
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.
Une version française est disponible ici.
Read more articles from Positive Lite, here.
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