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Medical Forum / Diseases and Disorders / AIDS / October 2005

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Stigma

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GMCarter - 03 Oct 2005 15:50 GMT
http://www.health24.com/medical/Condition_centres/777-792-814-1762,32574.asp

Understanding HIV stigma essential
There is a need for more effective interventions in dealing with
HIV/Aids stigma as education is not enough – legal measures and
activism are necessary to challenge the power relationships that
sustain stigma and discrimination.

This is according to the first report, Understanding HIV/Aids stigma
– a theoretical and methodological analysis, emanating from a Human
Sciences Research Council (HSRC) study designed to develop stigma
research in southern Africa.

The report points out that there are hundreds of people who go to
their deathbeds without admitting to their friends and family that
they have HIV/Aids. There are equally hundreds who seek help under
cover of darkness, or far away from their homes, as they are deeply
ashamed of their plight.

Unless the stigma surrounding HIV/Aids is better understood, it will
continue to be a serious barrier to the testing, treatment and care of
people living with HIV/Aids (PLHA). Its negative effect will
increasingly affect public health campaigns, and society as a whole.

Assistance in management of HIV/Aids
Through reviewing literature on disease stigma, that focuses on but is
not restricted to HIV/Aids, the monograph aims to assist management of
the HIV/Aids epidemic by:

   * developing more sophisticated theoretical approaches to
understanding stigma;
   * developing research methodologies that better understand the
historical and cultural specificity of stigma and its impact; and
   * informing the development of better anti-stigma interventions.

Key to this report is the very definition of HIV/Aids stigma itself.
The authors point out that stigma has been used to describe an entire
range of obstacles to HIV/Aids management, from restricting the
rollout of antiretrovirals (ARVs) to lack of condoms in schools.

Instead, they choose to define stigma as an ideology, one which links
a biological illness to negatively-defined behaviours or groups, for
example, linking HIV/Aids with promiscuity, or commercial sex workers.
In short, disease stigma is “negative social baggage” associated with
a disease.

Several issues explored
Working from this premise, the first seven chapters feature analyses
of recent academic work on disease stigma, and include research that
explores:

   * Prejudice and the relationship between racism, sexism,
disability, HIV/Aids and other medical conditions;
   * The link between stigma and power;
   * Self-stigmatisation;
   * Differential treatment and discrimination; and
   * Instrumental and symbolic stigma.

The remainder of the report looks at practical proposals arising from
the research.

Firstly, it suggests steps to develop a research agenda with a
specific focus on HIV/Aids stigma in southern Africa. Particularly,
how HIV/Aids stigma has local histories and meanings, how this impacts
on PLHA, and thus how research queries should be structured.

Methodological approaches proposed
The report further proposes a variety of methodological approaches.
For example, conventional tools such as interviews and surveys could
be integrated with alternative methods like body and stigma mapping,
and diary-keeping.

Finally, the need for more effective interventions in dealing with
HIV/Aids stigma is recognised. As the authors point out, education is
not enough – legal measures and activism are necessary to challenge
the power relationships that sustain stigma and discrimination.

As with racism and sexism, there is no magic bullet that can eliminate
stigma. The report aims to significantly strengthen the base of future
research in this area. It makes a crucial contribution to the
discussion of HIV/Aids stigma and, ultimately, towards management of
both societal attitudes and the disease itself. – (Health24)
Fondoo - 03 Oct 2005 19:05 GMT
  This is a very good point. The last thing sick people need is fear and
shame thrown on top of there sickened bodies.
  My wife was diagnosed AIDS 10 years ago with 3 T-Cells and she went
thru the pain of that label.
  She went thru breast cancer a couple years ago. Had Chemo lost all her
hair the works, but thru it all she laughed saying things like "wow when
you have cancer people buy you flowers, call you, and come visit. When I
had AIDS people changed there phone numbers".
DavidT - 06 Oct 2005 08:14 GMT
"wow when you have cancer people buy you flowers, call you, and come
visit. When I
had AIDS people changed there phone numbers".

Good points.

Fondoo, just out of interest - has your wife/you had HIV therapy? I'd
be interested to know how/why you decided to start treatment if that
was the case (and why you might have stopped)
Fondoo - 07 Oct 2005 01:03 GMT
   Hi David,
I tested + about 15 years ago. At the time I had no clue I should doubt
what my doctor laid on me (T-Cells 350)  "You are a fast progressor and
will likely die an AIDS death in about 3 years" Zowie I though, I tested
because I had lost another business and realized it was the drugs I played
with. A drug addicts denializm is an amazing thing. Well after that news I
decided to stay high. I did go on AZT but as an addict I was flaky so I
would go long periods of 1 year + without treatment.

   Funny thing my T-cells never really changed until one time 3 years
later after a long spell on crack cocaine they were measured at 180
earning me my AIDS nametag. But my only symptoms were 1. Thinking about
death all the time 2.wanting to stay real high to cancel out #1 and 3.
Some wasting but that stopped when I again flaked out on my mono AZT.
Protease soon hit the scene and I still wasn't dead so I went and got
blood work (T-Cells 350) and started on the cocktail and shortly after
still not being dead I got sober. 8 years sober now and T-cells 350 even
sober I have flaked out on meds but when I would come back they would
still be 350. I don't mean exactly but within 50 higher/lower T-Cells.
  Having my baby girl led me to research the MD's reasons for his advice
with her and I found them to be suspect. I have now been off Chemo for
about 18 months. I stopped at first on one of my flake outs but now
continue to not take them because of a change of belief. I looked at the
dissident scientists and there views on why the data on HIV is flawed and
that made more sense to me, it “is” my choice on what theory I want to
pursue as truth and my responsibility to let other positives know there
are flaws that are known but suppressed in the media and that there are
other ways of thinking about there bodies than being victims of a
incurable desease.
  My wife was diagnosed AIDS with a T-Cell count of three about 12 years
ago. She went to get treated for a rash after working in a building where
fire proofing material was making large #'s of people get sick with a
large range of rash's and health problems. She was so far from a "risk
group" it's laughable but whatever she probably got AIDS from a dirty
toilet seat. That was around the time of protease phase 2 trials and she
got in. She has been on treatment ever since except for a drug holiday and
then to give birth (she did do AZT during birth so please don't get weird
on us) She also had nothing but improved health when not on the drugs so
to put it plainly the drugs have become "suspect" to us as well as the
entire HIV Test/AIDS theory
Gary Stein - 08 Oct 2005 00:30 GMT
>    Hi David,
> I tested + about 15 years ago. At the time I had no clue I should doubt
[quoted text clipped - 36 lines]
> to put it plainly the drugs have become "suspect" to us as well as the
> entire HIV Test/AIDS theory

Well you give a lot of info on your CD4 test results but none on your wife.
You also don't mention viral load numbers so it's real difficult to come to
any real understanding of either of your health regarding HIV and or AIDS.
How often do you have lab work done during you ARV holiday currently
underway? Are you numbers improving, staying static, or showing a movement
in the wrong direction?

I to have a CD4 count that has stayed remarkably steady and in the 350
range. But I started out with 16 CD4's at diagnosis and only achieved 350
two years after starting ARV therapy. You don't disclose your or your wife's
history or lack of it with OI's. I have had PCP 3 times each time more
dangerous and harder to treat, the last time being in 1996 when my CD4 count
was still bellow 100.

I am glad that you and your wife are doing well and hope that continues
indefinitely. But I am not sure were you stand on the HIV=AIDS issue or the
claims that the denialist make as to ARV being deadly. It would seem that
you agree HIV=AIDS but question how that has progressed in your own case. It
seems to me that your opinion on ARV is that it either works or is
irrelevant, but ARV is not deadly. If I am mistaken please clarify your
thinking for me?

Gary Stein
Fondoo - 09 Oct 2005 07:54 GMT
Hi Gary
  My wife has had medical problems including a bad case of breast
cancer, thrush, bi-lateral optic neuritis. Her T-Cells have hovered
around 300 to 500 after ARV's and she got over her initial infections
that led to her positive test. Her viral load always seemed to wonder
from 3000 to 50000 in treatment.
 When we were out of treatment the times we got blood work done viral
load would go up. That makes sense because it's well known that PCR
picks up other genetic material so if you stop taking DNA chain
terminators more cells are born and you will have more material for PCR
to pick up.
 I do think a positive test can be an indicator to health trouble down
the line but I am more inclined to use oxidative stress markers as proof
for concern than PCR tests.
 I plan on doing blood work for oxidative stress after we move Nov 1st
and will post the results if you are interested.

http://www.robertogiraldo.com/
  This Docs advice may interest you. On AIDS drugs or off he makes some
good points about looking for stress in our body besides the traditional
#'s. Also since I am not a very good writer I invite you to E-mail me
and I will give you my phone # so I can better answer your questions.
 Good luck and best of health Gary
Gary Stein - 10 Oct 2005 21:11 GMT
> Hi Gary
>   My wife has had medical problems including a bad case of breast
> cancer, thrush, bi-lateral optic neuritis. Her T-Cells have hovered
> around 300 to 500 after ARV's and she got over her initial infections
> that led to her positive test. Her viral load always seemed to wonder
> from 3000 to 50000 in treatment.

That is very common for someone who does not have good med compliance or has
some other factor that cause a sub-optimum response to ARV. I had similar
viral load numbers for the first 6 years on ARV and only since then has it
been bellow 1000 for any length of time.

>  When we were out of treatment the times we got blood work done viral
> load would go up. That makes sense because it's well known that PCR
> picks up other genetic material so if you stop taking DNA chain
> terminators more cells are born and you will have more material for PCR
> to pick up.

That would mean that a healthy non-HIV infected person would show a high
Viral Load number via PCR. This of course is simply not the case and there
are tons of research that proves that fact. HIV negative folks have been
given PCR tests as part of the controls used in validating the work done by
labs in evaluating there ability to provide consistent test results. In no
case has an HIV negative person shown high viral load counts when a properly
quality controlled lab processed the test.

>  I do think a positive test can be an indicator to health trouble down
> the line but I am more inclined to use oxidative stress markers as proof
> for concern than PCR tests.
>  I plan on doing blood work for oxidative stress after we move Nov 1st
> and will post the results if you are interested.

Talk with George about oxidative stress he is much better informed then am I
on that topic but yes it is certainly a factor in a persons health and can
help keep HIV in check but it is by no means the only or even the best
solution to treating the HIV infected.

Gary Stein
Brian Mailman - 09 Oct 2005 21:59 GMT
>     Hi David,
>  I tested + about 15 years ago. At the time I had no clue I should doubt
> what my doctor laid on me (T-Cells 350)  "You are a fast progressor and
> will likely die an AIDS death in about 3 years"

That was based on data showing a usual loss of 75-100 per year.
Apparently, that didn't happen to you (and a good thing!).  And you've
learned that statistics only predict group behavior, not the outcome for
any one individual.

B/
 
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