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What are the greatest threats to
people living with HIV today, or at least
to the kind of empowerment groups for
us that have been so important to you?
Lack of respect for the principle of
patient autonomy. This is happening
across the board, as public health becomes
militarized, disease securitized and
treatments more complex and costly.
The concept of the physician as a healer,
providing individualized treatment, has
too often given way to the physician as
an extension of and agent of the state
and the pharmaceutical industry, treating
populations instead of individuals.
You are known to be skeptical of
pharma and caution that medication
side effects are too often ignored.
Some people might ﬁnd that ironic,
given that new medications saved your
life. Is that fair?
I think skepticism about pharma, when it
was pharmaceutical treatments that saved
my life, isn't ironic but common sense.
Anti-retrovirals, like many medicines,
are powerful treatments. Anything very
powerful can be used in a negative or
positive way; the more powerful the more
important it is to be careful, cautious and
Skepticism saved my life. Had I not been
so skeptical, I would have taken more
treatments that, in hindsight, we now know
would have hurt me more than helped me.
I am alive because I was lucky or smart or
skeptical enough to refuse pharmaceutical
treatments at one point, when they were
strongly recommended to me by the
medical establishment, as well as because
they were available to me and I took them
at another point, when I needed them.
The irony isn't found in me. The irony
is that a healthcare system that purports
to heal and a scientific establishment that
purports to be interested in discovery
has so often refused to listen to or learn
from those living with the disease. Had
our voices been valued more highly, the
epidemic would never have gotten as big as
I'm a little surprised that your book
is the ﬁrst memoir by a major imprint
about those early years in New York
City and the early ACT UP era. What
do you make of the recent interest on
ﬁlm about AIDS in the 1980’s, such as
"How to Survive a Plague" and "Dallas
Enough time has past since the worst
years that those who survived can reflect
with greater objectivity. Many survivors
feel compelled to remember the dead and
bear witness to what we experienced. That
has become a sense of obligation, even a
compulsion, for many of us, particularly
as we age and realize there are fewer and
fewer of us around to speak first-hand
about those years.
For many it is a delayed grieving; when
friends were dying so fast and in such
great numbers it wasn't possible to fully
grieve them. But we filed away that pain, to
process later. Now it is later.
The explosion in cultural production in
the last few years, the films you mention as
well as books and exhibitions, is somewhat
analogous to the cultural production
following the Holocaust. Not so much in
the 40's and 50's, but by the early 60's it
had started to grow dramatically. Yet 15 or
20 years past the worst of those days, the
memories and words and testimonials start
to come forth.
But even "Dallas Buyers Club" and
other works of art haven't done well
with their bottom line. We might be
taking a look back, but it isn't exactly
a highly commercial enterprise, is it?
No, it isn't, to many people anything
about AIDS is such a downer they aren't
interested. Many gay men have created lives
that have protected them, emotionally,
from the pain of the epidemic and they
don't want to be reminded of it.
But I'm not sure we would be in any
better position in terms of addressing the
epidemic if the books and films about its
earlier years were enormously profitable.
There is an historical record that, in time,
will be vastly more important than how
many copies or tickets are sold today.
"Body Counts" seemingly has
everything, from Washington politics
to brushes with celebrity to your
own sex life, and the book had major
endorsements. I will admit I thought it
would be a bestseller, and rightfully so.
Or at least it should have been.
I suspect every author wishes their book
sold better and I'm no exception. But while
I didn't make the NY Times bestseller list,
"Body Counts" has gotten excellent reviews
--- almost across the board --- and hundreds
of people who read it have contacted me
with appreciative comments, which is cool.
The publisher early on told me she
expected the book to have a long sale and
she has been proven correct. It is getting
assigned in college coursework and
continues to sell, even though it has been a
year since the original publication date.
College kids are studying your
book? That has to be gratifying, and
it sounds like the perfect use for your
account of this history.
Yeah, that's cool, isn't it? I spoke at a
dozen colleges and universities last year
and found student audiences to be engaged,
stimulating and helpful for keeping my own
So what next for you? I know you've
been doing a book tour and events.
I want to continue working to help
people with HIV find greater agency and
empowerment, particularly through
support of and strengthening of networks
of people with HIV. In time, I think the self-
empowerment advocacy will start to blur
the lines of specific distinctions between
diseases and conditions; it will be about a
broader movement to take back healthcare
and choices about our health and bodies
from the corporate grip that has been so
damaging to the lives and health of many.
I'm increasingly aware of the march
of time. Is it too soon to ask how you
want to be remembered?
There's no question but that time
becomes more precious as one ages and
for those of us, like you and me, who have
been lucky to survive when so many of
our peers did not, it only makes that sense
It is peculiar to think about how one
would like to be remembered because, first
of all, no one wants to be remembered for
spending much time thinking about how
they would like to be remembered. What is
important is what I am doing today and if
I'm doing that well, it won't matter how I'm
Mark S. King is an award winning columnist,
author, blogger and AIDS advocate who has
been involved in gay causes since the early
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