Editor's Note: Stop the Confusion
When I came to Positively
Aware four years ago, AIDS was the issue. I was writing
about things like blindness and care of the dying. Soon AIDS
was out and HIV was in. The number of HIV drugs quadrupled
and the magazine filled with the latest potent combination
news. Stories of blindness and dying were no longer greatly
needed.
Now there seems to be the
confusion that everyone with HIV needs to be on drugs.
Sure the medications are good,
but they’re hard to take. It ain’t a “cocktail.”
It’s chemo. Sick people may benefit, but almost everyone
with HIV is pushed onto meds, often with bad results.
Then once you start, you have
to keep your viral load undetectable, but you can’t.
At least a lot of people can’t. And the ones who can
often get sick and tired of it. “Success” doesn’t
always feel so good.
Maybe that’s a new take
home message people can start to understand.
Writing for Positively
Aware, I learned something early on:
• never talk about the
good aspects of drugs so that they sound like a cure; and
• never write about drug
side effects in a way that makes people panic.
I always said if I tested
positive today, I didn’t know if I would start drugs
tomorrow. I have to say, my answer is 80% “no.”
They make you sick, plain and simple. Then you turn around
and there’s a new theory in town, and your treatment
is no longer considered to be as good. I wouldn’t go
on drugs tomorrow when I’m told you have to be undetectable—and
nobody is. Not long term, and not without illnesses from drugs
that have to be changed.
Absolutely, there are easy
regimens to take. But I wouldn’t want to get on the merry-go-round.
Not when I have several years of good health in front of me,
and knowledge of HIV will increase greatly in those years.
We write about drugs because
they’re important, not because we’re pushing them.
Back in the 80s, one of the slogans from ACT UP (AIDS Coalition
to Unleash Power) was “Drugs into body,” and they’re
no pharmaceutical company dupes. All around me here at Test
Positive Aware Network people are talking about meds. They
want to know the latest.
Mark Harrington’s statement
that no benefit has been seen from starting therapy in people
with more than 350 T-cells hit me like a ton of bricks. Even
though he’s using a very strict standard, it’s still
a point that’s not commonly recognized.
When you see the section “Stop
the Drugs” in this issue—including a personal story
and an impassioned defense of meds from a sensitive doctor—you’ll
see reasons why considering therapy early in HIV disease is
complex and even contradictory. Maybe there’s a new simple
message people can take away: HIV medications aren’t
simple.
Enid Vázquez
Interim Editor
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