Times
are changing
The information that Positively
Aware has provided me over the years has probably saved
both my partner and my life many times over. I will always
be grateful. I know that HIV has no preference for any race,
religion, ethnic group, etc., and I may not know about other
parts of the U.S., but most of your core readers here in Houston
are responsible, not “barebacking.” Most are not prisoners,
pregnant or incarcerated women, women incest survivors, women
with self-esteem problems or IV drug users. In The Buzz, Dem
Bones? Is this a typo for Them Bones? Or should I be reading
up on Ebonics to understand the very obvious cultural differences
that have taken place in your publication lately?
What I’m trying to say is,
what happened to helping us average black, white, Hispanic
Joes out there who are the real core readers of Positively
Aware? I realize these problems exist and education is
essential, but they aren’t seeking Positively Aware’s
help. We are! Help those of us who can read. I see so many
idiots who have no clue what medication they are taking. All
they can tell the pharmacy is that it’s a yellow or blue pill.
Cut the political crap.
Name Withheld,
Houston
Editor’s Note: In fact,
we frequently need to edit letters from prisoners into plain
English because their knowledge is so highly technical. Many
are sophisticated readers who are obviously obtaining HIV
information from a wide variety of sources, including medical
journals. There was only one instance of “barebacking” (sex
without a condom) mentioned in Positively Aware, and
the partners were both HIV-positive and they quickly switched
to condoms. Writing about pregnancy has been near and dear
to my heart because I do not expect general newspaper and
magazines to provide the details HIV-positive women need to
hear. Our magazine is written specifically for ALL positive
people, so I provide those many details as they are discovered.
I also find some positive former drug-users who read everything
they can about HIV, and some HIV-positive white, middle-class
gay men who read very little medical information about the
disease. That was a big lesson for this writer—don’t make
assumptions. Finally, Buzz columnist Dr. Daniel Berger took
“Dem Bones” from the title of a song. I was thrilled to see
him write a catchy phrase for his column, since doctors can
be so boring.—EV
It must be true. The more
things change, the more they stay the same. I am growing increasingly
disgusted with the HIV-positive gay white men I encounter
who feel compelled to express their “retro” views of Positively
Aware. As a gay white male and a former director of programs
at Test Positive Aware Network (parent organization of Positively
Aware), some who I encounter—when advised of said facts—feel
compelled to lament the recent and current—God willing future—editorial
direction, content and focus of Positively Aware. “Why
have they focused so much attention on prisoners?” “Why so
much time covering women and children?” “Why so many articles
on Africans—and African Americans—living with HIV/AIDS?” “What
happened to covering the issues affecting core Positively
Aware readers?” To all I say: “Because!” Because Positively
Aware is continuing the long held—and demonstrated—commitment
to informing, empowering and educating those most in need
of the same. Because it is right to re-focus and alter course
as the need arises. I ask: “Why in God’s name aren’t all of
us connected, informed and empowered ‘longtimers’ doing the
same?” Why aren’t we all looking back, left and right, up
and down to make sure we have left no one—no one—behind in
a cloud of fear, confusion and need? Bravo to Positively
Aware, for holding fast and true to the notion of education,
empowerment and advocacy.
JP Womble,
Fort Lauderdale
Treatment
interruptions
I wanted to comment
on a few confusing points in Stephen Fallon’s “Sloppy
Treatment Impulses” (September/October issue). By the
“newly infected” he is probably referring to preliminary results
from studies of treatment interruption in people who began
HAART [highly active anti-retroviral therapy] during their
acute infection. These studies are the only ones so far to
show any promising immune-enhancing benefit from STIs [structured
treatment interruptions]. However, they should be clearly
distinguished from studies seeking immune control from STIs
in people with chronic infection. Those have produced spotty
data at best. There also seems to be some confusion about
when the maximum impact of new meds can be enjoyed. HAART
is capable of suppressing virus at any time after infection,
although the recent trend is to delay starting therapy until
disease progression has become evident by lowered CD4 counts.
It could be argued that the maximum impact of HAART is felt
when symptoms have already occurred and one is pulled back
from the brink, but that’s too long to wait. Treating during
acute infection is part of an experimental technique to improve
immune control after treatment is stopped; few would suggest
starting lifetime therapy at that point.
The information about the
National Institutes of Health trials of SIT, or structured
intermittent therapy, is also confusing. It should be made
clear that the NIH is studying SIT to see if virus can be
controlled with less toxicity and fewer resources— enhancing
immune control is not part of the hypothesis. The latest news
from Anthony Fauci is that drug resistance had been observed
with the month-on/month-off schedule, but that those on the
7 day on/off cycle have sustained viral suppression while
showing improvements in blood lipid levels. These results
are promising and should be confirmed with larger studies.
Oddly, despite previous warnings
about stopping meds, the article concludes by advising readers
to “If you want to reap those benefits, be sure that you stage
a structured treatment interruption.” Better advice might
be to suggest that readers who are considering stopping treatment
for any reason— fatigue, toxicity, stress, or because they
think they started too soon—should discuss it with their doctor
and consider enrolling in a clinical trial. The message that
STIs are experimental and should not be undertaken lightly
is reasonable. But this piece mixes up holidays with interrupted
and intermittent therapy to warn readers away from the notion
altogether.
Bob Huff,
Editor, GMHC Treatment Issues,
New York City
Editor’s Note: See “Stopping
Therapy” in News Briefs in this issue.
From
a positive ex-offender
I was a prisoner with
HIV in New York from 1985 to 1988. The care I received was
excellent. In1985/86 I was incarcerated in Albion Correctional
Facility. Our staff physician was Dr. Fernandez. His treatment
of me was outstanding. He greeted everyone equally with a
“How much more time ya got?” I was allowed to go to the clinic
whenever I wanted. He prescribed drugs that I needed, and
not just for life-threatening illnesses. We had one inmate
with AIDS at that time. Yes, we all knew, but he was treated
with respect and concern. He was able to eat extra portions
of food and have Ensure [dietary supplement] or whatever he
needed. The food here was top notch. In 1986 I was transferred
to McGreggar Correctional Facility. The food was better than
what I used to eat on the outside. We also had great medical
care even though the doctors rotated. I was diagnosed with
shingles and was quarantined. However, I was offered an HIV
test, which came back positive, and after that was offered
counseling and the drug available at that time, AZT (Retrovir).
Here we had adequate medical care and support groups under
the direction of Fr. Peter Young, a legend in the capital
region. I was treated with the utmost respect by the prison
staff and correctional officers. After my quarantine everyone
was aware of my medical condition and treated me no differently—from
the staff to my fellow inmates. Although I was discriminated
against with regard to employment while there, I attributed
this to the ignorance of the lay people at the warehouse where
I worked and not to the prison staff or my fellow inmates.
All in all I feel that New York has responded well to the
epidemic and I thank their programs for teaching me how to
live a clean, safe and fruitful life. I hope that all the
correctional facilities can live up to the high standards
set by Dr. Fernandez and Fr. Young. Thank you for printing
a positive piece.
Duke 85C480 (full name withheld),
via the Internet
Prison
letter
Your July/August issue
was one of the best I’ve read yet on HIV/AIDS in prison. While
it’s still true that at many correctional centers (as well
as prisons) many inmates are called on to go to the medical
units to receive their meds, here at Western Illinois we are
fortunate to have Deborah Fuqua, R.N., C.C.H.P. and health
care administrator, along with Paula Flesner, L.P.N. and high-risk
nurse, as well as Dr. Judith Terrell, in our corner. Through
many talks with them, they felt compassion and the need for
change, and we now have our meds brought to us and are allowed
to keep the bulk of our medicines in our cell. I’ve also been
for nine years the prison peer educator who has spoken to
thousands of inmates on prevention. We’re not (as Mr. Larry
Harris stated) “double-damned.” We educate each other and
have a loud voice when it comes to choosing a regimen that
works for us and our bodies. Positively Aware, POZ, AIDS
News and many other HIV/AIDS information services help
us to know how to talk to our health care staff and doctors
and tell (or ask) what’s new that we can receive. Like Dr.
William Rankin mentioned, many inmates cry “wolf” and it’s
an art to really know what one needs and has to have. We do
(in my small opinion) get better care sometimes than people
on the outside. We’re sent to some of the best specialists
out there.
Kenneth W. Dorsey, #B12192,
P.O. Box 2000,
Mt. Sterling, IL 62353
Facial
wasting
The following was among dozens
of e-mails sent to The Buzz columnist Dr. Dan Berger.
I am writing with great
interest in response to your article regarding polylactic
acid (New-Fill)
in the Sept./Oct. issue. I am a 38-year-old female who was
diagnosed with HIV in 1995. I have been suffering from lipodystrophy
and facial atrophy for about four years. I have been taking
human growth hormone for the past three years, with minimal
results. I would certainly appreciate any information you
might be able to provide, including clinical trials and use
in women. This is by far the most promising thing I’ve heard
regarding treatment for facial atrophy.
Thanks for taking the time
to research and write this article. With a T-cell count above
600 and a manageable viral load, I am by most accounts a healthy
33-year-old guy. But when I look into the mirror I often feel
that my facial features belie my good health, so I was very
encouraged by your article. The fact that I live in San Diego
made it even more encouraging. I have tried calling the phone
number of Dr. Jorge Tagle in Tijuana, 011-526-681-3626, but
could not get an answer. Can you confirm that number? I am
very eager to find out more on this procedure and whether
I can benefit from it. I have been waiting for news like this
for a long time.
Dr. Berger responds: Thanks
for your kind words. Many individuals have e-mailed me with
similar comments. It’s especially gratifying to provide so
many with the option to a problem that has been so frustrating.
Many individuals have worked so hard at maintaining their
health; their facial representation has not allowed feeling
good about themselves. The number is correct, but know that
the office closes for a siesta during mid-afternooon.
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