Two
to Tangle...again?
I feel compelled to
respond to Barbara Renthal’s letter [“Two to Tangle?,” May/June,
2001] which was in response to my reply [“Sex Ethics,” January/February,
2001] to Jim Pickett’s article, “Give Us Morality or Give
Us Death,” published in the September/October, 2000 edition
of this journal. My original letter was clearly in response
to Mr. Pickett’s piece despite Ms. Renthal’s claim that I
did not name the article. I entitled my essay, which was severely
edited, “Towards the Opening of a New Dialogue: A Response
to Jim Pickett and an Essay in Applied Ethics”.
I wholeheartedly agree with
Ms. Renthal that we, as a society, have a moral obligation
to further the debate surrounding “safe” sex, and I said so
in my original, unedited essay. Moreover, in spite of Ms.
Renthal’s implicit characterization of me as unhealthy, dismissive,
and angry, I would further agree with her that there is, or
at least ought to be, universal AIDS education, including
specific, uncensored teaching of risk reduction techniques
and age-appropriate comprehensive sexuality education beginning
in kindergarten. Whether we as a society can reach some universal
conclusions regarding the content of AIDS education, however,
is another matter altogether. Despite the fact that modes
of HIV transmission do not respect borders, the legal system
in the United States does make distinctions based on local,
“community standards”. It is precisely because of this legal
distinction, that I oppose the use of laws to coerce persons
into behaving “responsibly” as defined by lawyers or legislators
(most of whom have little to no experience of the lives of
those persons presently at highest risk of infection).
As I stated in my original
letter, I do not believe there is any really useful role for
law in the prevention of HIV transmission in an open, democratic
society. It is on this ground that I object to Ms. Renthal’s
analogy of human sexuality to drunken driving laws. Having
sex, for me, is simply not analogous to driving a car regardless
of the state of mind of the driver. And, Ms. Renthal’s attempt
to characterize my lover’s death to “a few unlucky souls [who]
perish in” car crashes was offensive and personally hurtful.
I mentioned that fact as an illustration of my own responsibility
for my becoming infected by my own freely-chosen actions with
my partner who, sadly, did not know his HIV status in 1987.It
was not intended as an invitation to impugn my, or his, motives,
or our feelings about each other.
While I do not have the space
to share with you here my personal views on barebacking, circuit
parties, party drugs, indifference and misinformation, I will
point out that they are not, by any definition that I know,
“vessels.” They are, in fact, activities, a thing, an attitude,
and a state of mind; all of which are important in HIV risk
reduction efforts, but not “vessels carrying this virus.”
Nonetheless, the human immuno-deficiency virus is carried,
as its name implies, by the human vessel. Because we are dealing
with human beings, human sexuality, and human rights (or,
human responsibilities, as Ms. Renthal would, no doubt, remind
me), I disagree with her statement that “the only way…to get
the upper hand is to simply prevent transmission.” It is exactly
this notion that HIV prevention (or, as I would more accurately
label prevention efforts, as risk reduction techniques) is
just a simple matter, like choosing what flavor of ice cream
to taste, that has caused our national AIDS prevention efforts
to fail.
Finally, while those of us
who are HIV-positive sit blissfully awaiting fruition of this
pharmacist’s assurances (which I honestly believe are sincere
and well-intended) that “enormous effort and resources are
being allocated to find better, faster, safer ways to kill
the virus,” I would not disagree that the continuation of
this dialogue, and opportunities to correct misinterpretations,
are currently our best hope. I believe, however, that an even
better hope would be devoting yet more resources towards finding
a “medical” solution (for example, microbicides, morning after
pills, and genetic interventions). My thanks to Barbara Renthal,
Jim Pickett, and Positively Aware for allowing me the opportunity
to engage such a discussion.
Keith Carson
Absecon, NJ
Positive
Mom
I am the mother of
two HIV-positive children. Many people already know the status
of my children, but it is still mostly a big secret. If I
was the only one to feel any repercussions I think I would
let the world know and face whatever was thrown my way. I
worry about the children suffering. I think living the secret
does nothing to help those infected. There is no emotional
support, no understanding to receive. The secret promotes
the disease as being distant in people’s lives. They have
little reason to think of it. I sometimes feel guilty when
they have a playmate, wondering how their parent would react
if they knew. Sometimes I wonder what to tell the new babysitter.
When the children were a year old we were tossed out of our
playgroup. When I wanted to go back to work I had a difficult
time finding daycare for them. The children needed to be given
meds. Now my children are in school. I worry complaints that
my son touches kids too often have a hidden meaning. My children
are doing very well with their disease and that’s a relief.
I wish I could do more about making this illness less frightening
and ugly for others.
Via the Internet
From
a mom
I read your article
with many tears [article not identified]. I am always looking
for info for my son. He is beginning to suffer from dementia
and it’s very hard to keep his spirits up. To all of you out
there who suffer, please don’t have unprotected sex. It isn’t
just you who carry the disease. Your loved ones carry it with
you.
Via the Internet
Juice
meal
In “Complementary Therapies
for People Living with HIV,” adapted from CATIE (January/February),
it is irresponsible to close with “Think of juice as a meal.”
Of course nutrition has both objective and subjective components
as does anything else. However, I absolutely do not want any
of my patients thinking they can consume juiced foods as a
meal. Food and water safety and the basics of nutrition are
not to be dismissed. Show me some scientific basis for your
claims. I do indeed use a juicer myself, but your excerpt
is far from providing adequate information.
Jeannene Davis, dietitian
via the Internet
Editor’s Note: Ms. Davis’s comments were
forwarded to CATIE (Community AIDS Treatment Information Exchange).
However, we can say that juice packs more sugar and less fiber
than fruit. It also has more calories. While juice provides
vitamins and minerals, you need to be careful because of the
concentrated fruit sugars in it.
Prison
Pen Pals
Your letter regarding
our Prison Pen Pals just reached me (we’re volunteers working
in different states, so the frequency of picking up and forwarding
the mail varies). Yes, we still have Prison Pen Pals, at P.O.
Box 1217, Cincinnati, OH 45201. We list the names and addresses
of all prisoners who write to us, but we are not able to reply
to them ourselves, or acknowledge their letter. Nor are we
able to include any descriptive information, just their name
and address. We list an average of 5,000 prisoners a year
and can’t keep up with the volume enough to do anything further!
As to names of other pen pal services for prisoners, we do
have a small list we have put together, which we try to verify
every couple of years.
Joy Perry
Freedom Through Christ Prison Ministry
via the Internet
Thumbs
Up on Positively Aware
I always enjoy every
issue of your well-informed magazine. On behalf of my positive
peers here at Central California Women’s Facility, I thank
you for printing articles about women living with HIV/AIDS
and HBV/HCV in prison. Since I’m one of the women who spoke
at the hearing in October 2000 in front of [California State]
Senator Polanco’s committee, seeing some of our testimonies
in Positively Aware brought tears to my eyes. Thank you.
Beverly Henry
CCWF
Chowchilla, CA
Thank you for running
my article (July/August). I loved it. You made my dream come
true. Now I can die in peace ‘cause I chipped in for the AIDS
cause—I put my pebble in.
Kevin Lisboa
Cayuga Correctional Facility, New York
The prison issue is amazing.
Really great information layered with sad and horrifying stories.
I sent an all-staff e-mail out recommending that everyone
pick up a copy.
Bob Huff
Gay Men’s Health Project, New York City
I recently decided
to let go of the HIV stigma and get some much needed help
for my health. I read your article (November/December 2000)
on women and HIV and it’s as if you have been watching me
for the last nine years. Thank you for the wonderful directory
and all of the great services that you make public to the
community! I am glad to know that I really don’t have to face
this alone, and I would like to begin anew. Thank you for
writing down all of the things that “we” are ashamed to say
aloud. I plan to repay my debt to all of the people who are
dedicated to AIDS and HIV as a way of life by using my talents
to make a difference in some small way. I believe life throws
these curves to test our spirituality and your agency has
helped me to see (after a long time) that it’s not only about
me. I was the one who needed to get in the game. Thank you!
Veronica E. Howard-Sims
Chicago (Look, Ma, I came out!)
I receive PA as an
indigent HIV-positive inmate of African descent who is very
active in prison issues affecting PWAs [people with AIDS].
There is a dearth of information available to the inmate population
here and the medical staff is not “inmate-friendly.” This
is a total “lock down” prison which has a death row as well.
Needless to say, PWAs receive only the most basic medical
attention. Positive doctor-patient relationships are all but
non-existent. Were it not for your magazine I would not have
the insights that I do now. The May/June issue was filled
with updated information and compelling stories and interviews
that are sure to empower your readers. I understand the financial
challenges you face and how lack of funds affect your efforts
to do a social good. I pray that readers and agencies who
can will do the right thing and donate. Thank you so much—your
labors are not in vain.
Willie Green
Florida State Prison,
Starke, Florida
Thumbs
Down on Positively Aware
I read some of your
articles on TheBody.com
from time to time about living with HIV, if they are not too
depressing, that is. It would be nice if you would write about
ordinary couples (my wife and I in my case) and their lives.
Everything is not gloom and doom. I married my wife knowing
that she was pos. (She had the bad fortune of believing in
the wrong person.) We live in Europe. I am American and she
is Czech. She gets all her treatment paid for by the state,
thank God. I have never been so happy in my life. She is my
soul mate and we really enjoy life together. We don’t spend
a lot of time talking about it. We don’t belong to any support
groups. We just go about living and she considers it just
another disease that she happened to get. She holds no bitterness
against the person who gave it to her. It is getting old only
reading about gays or former drug users and HIV. She is none
of those and really is a very up beat and happy person despite
everything. I wish I could be as positive about life as she
is.
Via the Internet
Positively Aware continues
to disappoint me. The recent article by Jim Pickett, “A Crisis
Obscured” (July/August), is merely one more example. After
16 years of living with HIV, I am tired of hearing how “HIV
is a vicious ugly…and always fatal contagious disease…” Many
people with HIV have lived strong, healthy lives, some infected
greater than 20 years. HIV has not ever been shown to be universally
fatal. I do not intend to minimize the struggle and pain nor
the horrible deaths that many people with HIV have experienced
and will experience. One of my greatest struggles with HIV
has been with the stereotypes and assumptions from friends,
family and strangers that I am sick and dying. I look to TPAN
as a source of hope and inspiration and support. Unfortunately,
Positively Aware continues to remind me that I have an “always
fatal contagious disease.” I hear and deal with enough of
that in my day to day life. I don’t need it from TPAN.
Name Withheld, via the Internet
Editor’s Note: First, please accept my
sincere apologies for the mistake. HIV is a communicable
disease, not a contagious one. Secondly, I agree with
your statement about survivors. Many of HIVers have lived
well over 15 years, some on antiretroviral therapy and others
without ever taking meds. While we try to present a balanced
approach to our coverage of HIV and living with HIV, every
now and then we may occasionally publish an overly “heavy
issue.” Jim Pickett’s column is an editorial opinion. We include
Jim’s column in Positively Aware because for the most part
he provides a light-hearted, tongue-in-cheek perspective on
living with HIV, but mainly because Jim’s struggles with HIV
touch people, in positive and negative ways. He makes people
think and react.
Kaletra
trial
In response to Dr.
Daniel Berger’s article, “The Importance of Sequencing Treatment
Options” (May/June), Dr. Berger referenced a study by Abbott
Laboratories… The PLATO study is designed to determine the
impact of changing from a poorly-tolerated therapy to Kaletra
based on a patient’s quality of life… With our objectives
focused on the patient’s perception of medication side effects,
we have set the study duration at eight weeks. We feel this
timeframe will enable us to capture data regarding the patient’s
experience of side effects relative to a therapy change….
Margo Heath Chiozzi, MD,
Senior Medical Director,
Global Marketed Product Development,
Abbott Laboratories
Editor’s Note: The point of Dr. Berger’s
comment is that eight weeks is not long enough to uncover
some side effects, such as the body shape changes seen with
Norvir (ritonavir, one of the two protease inhibitors in Kaletra)
and other HIV medications. Also, it raises serious ethnical
questions about long term consequences when people are placed
on a drug and then discontinued eight weeks later.
Drug
ads
After reading your
magazine and the ads by the pharmaceutical companies, I am
convinced that two phrases would have an immediate and lasting
prevention effect. The phrases must be displayed prominently
in all pharmaceutical HIV and HIV-related ads: “Always use
a condom when having sex” and “If you’ve had sex without a
condom, contact a health care provider today.” Why? Because
condoms before and prophylaxis [preventative medicine] after
exposure is proving to be an effective way to help prevent
HIV and its spread. It’s the same message, but when added
to the pharmaceutical disclosure “HIV drugs do not cure HIV
infection or prevent you from spreading the virus,” it becomes
a powerful message that people, particularly African Americans,
will act upon now.
Keith Smith,
Aurora, IL
Privacy
issue
In regards to HIV test
kits sold online, I have encountered at least one website
company that advertises that the packaging that arrives at
your home is not marked with any obvious words describing
the contents. However, my credit card charge was billed very
blatantly as “HIV test.” Isn’t this a gross breach of privacy?
Just thought others would be interested to know that this
doesn’t exactly protect one’s privacy, which is why people
order these things online to begin with.
Anonymous,
Via the Internet
Holding
on to life
When I tested positive
for HIV in 1992, my CD4 count was 86. I had full-blown AIDS.
Six months later I got busted for sale and possession of cocaine.
I was sentenced to 35 years in prison. In 1994, I was having
severe headaches. I had cryptococcal meningitis (fungus on
the brain). I couldn’t walk. I went from 165 to 123 pounds.
I went blind in my left eye and deaf in my left ear.
I was in an AIDS ward. Every
day I saw a PWA (person with AIDS) carried out in a black
body bag. I couldn’t accept the fact that I would one day
be carried out in a black body bag. In 1995, after becoming
ill with PCP, Pneumocystic carinii pneumonia, I was given
a conditional medical release. In other words, I was sent
home to die!
I made a commitment to myself
to stop doing drugs and take my regimen (Crixivan, Viramune
and Epivir) as prescribed. Three months later my lab results
were startling. My CD4 was 93 and my viral load was undetectable.
This was the best result I’ve had in over six years. September
12, 1997 was the day I started living again.
I violated my conditional
medical release and I’m back in prison. I have educated myself
about AIDS with the help of HIV groups and magazines like
Positively Aware. After four years of true commitment to a
good diet, exercise, and taking my new regimen (Zerit, Viramune,
and Epivir), my CD4 count is 314 and my viral load is undetectable.
I hope to change the concept of individuals who believe once
you get AIDS you’re dead. It’s just not true. I’m just a PWA
prisoner, holding on to life, and living with AIDS. You can
too!
Rawleigh Byrd
Taylor Correctional Institute,
Perry, FL
|
