Long-term survivors have valuable experience
to share with new boys and girls on the HIV block, writes Rob Dawson
Illustration Raffaele Teo
The
experiences of those living with HIV have changed dramatically over the years.
Treatment and care have improved although some elements of living with HIV
remain the same.
Now HIV is increasingly considered a life-long rather than life-limiting condition,
the newly diagnosed can learn valuable lessons from those who have lived with
HIV for many years.
HIV doesn’t discriminate. People from all walks of life live with the
virus and the vast generation gaps seen in HIV clinics these days highlight
the contrasts between affected individuals.
This age gap doesn’t only occur because people can be infected at any
age but also because effective HIV treatment has helped ensure people can
now live to a ripe old age.
James was diagnosed with HIV nearly a quarter of a century ago.
“When I first found out [about being HIV positive] it was a real struggle
coming to terms with the fact that I could die at a young age. When I finally
accepted that idea, I found out there were new treatments and that I may not
die of Aids after all. I tried to enjoy life and prayed I’d make it
to 40. I’m nearly 60 now.”
James’ priorities in life have changed.
“When I was first diagnosed the only thing was to stay alive for as
long as possible so I took the drugs and hoped for the best.
“Today I don’t just want to be alive, I want to be as healthy
as I can to enjoy this extra time.”
Getting older and living with HIV has made him acutely aware of problems that
could still arise. As he continues to take his meds, new worries take the
place of his early fears of a shortened life.
“Everyone worries about getting older but when you have HIV it makes
it worse. I worry about some of the illnesses and side effects that could
make me ill, especially as some happen to older people anyway. I hope my doctor
will be able to offer me drugs that don’t harm me in the long term so
I can stay active.”
James’s advice to a younger person living with HIV is this:
“People know a lot more about HIV and its treatment today so you don’t
have to make such quick decisions about treatment.
“I’d encourage someone to really understand what their doctors
are saying and get them to explain anything you don’t understand. You
are more likely to take all of your medications if you know what they are
doing to your body both now and in the future when you get older.”
With huge advances in treatment and care, those people diagnosed more than
20 years ago may experience different emotions than those diagnosed today.
Lee, 19, explains.
“It’s different today, there are drugs you can take and you’re
told you’ll live to get old. That doesn’t mean it doesn’t
scare me though. Sometimes I forget about HIV and then I take my meds and
realise I could be popping pills for the rest of my life.”
For younger people, much of the fear lies in the medications they are taking,
rather than the virus.
“Having HIV affects my life and the kind of sex I can have which does
get me down but I worry more about side effects. You see people with thin
faces and damage to their body and I hope it doesn’t happen to me. I
worry more about that than Aids right now.”
With the focus of research shifting to improve existing drugs and look at
the side effects profiles after many years, some concerns are being addressed.
“My doctor says HIV treatment isn’t just about keeping me healthy
now, but in the future too. I’m expecting to live a long life and I
want to stay healthy to enjoy it. I think we have learnt from people who started
treatment in the past when there were fewer options. It’s no longer
just about staying alive; it’s having the best life you can on treatment.”
By understanding the long-term effects of medications, doctors can now help
plan for a healthy future for their patients. As James enters his twilight
era, the many years of HIV treatment experience behind him is helping young
people like Lee to make informed decisions about their future and plan for
a healthier life well into old age.
• This article is sponsored by GlaxoSmithKline. HIV/ART/07/30352/1
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