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SEA-AIDS,
August 4, 1998 From
"Ditch" Townsend, Malaysia
Thank
you once again to Dr. Frerichs for his interesting and useful posting regarding
HIV antibody screening policies and related issues. I was particularly glad to
see his discussion of a couple of recent items that should prove very helpful to
others, namely, Beyrer's new book, "War in the Blood". I'd like to
respond to just a couple of Frerichs' points.
He
said "when
people are not able to identify those who are infected by using accurate HIV
antibody tests, they rely on less accurate methods such as avoidance of those
who they think might be infected."
My
response is, yes, that may be true, but it still leaves off the hook the
purported "accuracy" of HIV antibody tests, which just plainly and
simply is not as easy a matter as words imply. Accurate in terms of what? Fourteen different
"strains" of "HIV"? Certain health outcomes? The manual's
claims? Likely outcomes? Predictors of anti-virals taking?
After
over one decade's experience with ELISAs of varying kinds, after so much
struggle over the competing principles of "sensitive" tests and
"specific" tests, after such variation has been documented with
regards to how tests are interpreted and translated into health outcomes, I
should think that all of us would be "more" skeptical, not apparently
less so, about how and why to use them, much less how to interpret them.
Also,
as a social scientist, my mind just swims with the possible meanings and
consequences of the phrase "avoidance of those who they think might be
infected," particularly since this is apparently negatively juxtaposed with
an HIV antibody test's purported "accuracy." First of all, it is
"our" responsibility, if we are harping on "avoidance
behaviors" anyway, when people somehow are seen to be avoiding the
"wrong" (that is, possibly uninfected) people or avoiding the
"right" (that is, infected) people but for the wrong reason (say, for
fears of contagion, moral failure, and so forth).
Second
of all, when "avoidance" is linked with a technology (an ELISA,
for instance) and a technique (testing, counseling, and so on), not with a
change in social structure, then it becomes easier to see why HIV antibody
testing doesn't lead to the kinds of individual behavioral changes
"we" seem to want "them" to make.
It
also probably doesn't come as a surprise to list members (even though I haven't
seen mention on here since I've joined the list) that there are greatly negative
consequences of "positive" HIV antibody tests and policies. Let me
mention just one of many. Uli Schmetzer, for instance, reported in the Chicago
Tribune (April 5, 1993, p. 2, Section 1) on the basis of her attendance at
the Coalition Against the Traffic of Women conference that spring that "25
Burmese women who had worked [sexually] in Thailand [sex industries] were
fatally injected with cyanide by Burmese health officials to prevent the women
from spreading the AIDS virus at home. Thai social worker Christine Mahoney said
the women had been liberated from a sex den by Thai police. All had been
deported to Burma after they tested HIV [antibody] positive". This
apparently had happened during the first week of 1992, and there was no denial
by either "health officials" [some euphemism, there] or
military/governmental officials. Bare minimum, some discussion needs to occur on
these issues before HIV antibody testing widens in scope and deepens in meaning
and consequence. Again, this is just one example.
Dr.
Frerichs then mentions Beyrer's interesting finding that "This
is probably not going to work, but it represents an incredible change in the
social structure of San Sai's villages. Local women know what may happen when
they marry -- HIV infection -- and are opting, at least for the short term, for
not marrying rather than risk exposure."
I
believe that in some ways this is a good thing, and that we could do more to
make sure women can in fact "opt" not to marry, around the world,
without any negative social and particularly economic consequences. My sense is
that this situation Beyrer describes is incredibly rare, though yes, astounding
and positive in many senses. It's a complicated issue, to be sure.
Dr.
Frerichs then goes on to say "Rather
than developing understanding or caring attitudes towards high risk groups such as commercial sexworkers, intravenous
drug users, or homo- or bisexuals,
the general public in the absence of knowledge on HIV status will likely
be more fearful of people in these groups, rejecting them outright."
In
my opinion, none of the so-called "groups" (e.g., "Commercial
sexworkers," "homo- or bisexuals [the latter of which actually
includes heterosexuals, by the way, though few, epidemiologists included, will
say so]," etc., are as homogeneous as is usually implied. Also, without
further unpacking what "high risk" means, it's difficult to tell
whether the author means "people who pose high risks to others" or
"people to whom others pose high risks." It's really easy to stack
against negative portrayals many, many cases of low HIV antibody seroprevalence,
that is, in prostituted women. As well, not to include members of such groups,
if they are members of groups, in the designation "general public" is
discriminatory and prejudicial. Obviously, most epidemiologists and
anthropologists disagree mightily about what such terms as "risk
group" means, but "general public" is not only an empirically
unfounded category, but inflammatory, too. What does "general public"
really mean? Are you suggesting that sex workers aren't members of the general
public? That lesbians aren't?
The
alternative to this traumatic social evolution is to promote more testing,
thereby bringing the disease out in the open where the problem can be addressed.
My
opinion is that testing is an alternative (and not a good one), but definitely
not the alternative. Thinking this way closes off whole approaches and
perspectives. Without changes in the underlying social structure, HIV antibody
testing will almost surely, in my opinion, make matters worse and do more damage
per square inch than without.
I
heartily concur with Dr. Frerichs' calls to elicit more responses from members
of Southeast Asian communities. I'll shut up now on this issue!
Lawrence
Hammar
5445
S.E. 43rd
Portland,
Oregon 97206 U.S.A.
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R.R.
Frerichs Posting
While waiting for comments from local scientists in Southeast Asia,
I would like to respond to several issues raised by Mr. Hammar in his posting
of August 4. In the past I have not wanted to address the broad issue of
whether positive HIV antibody tests are predictive of HIV infection and
subsequently of AIDS disease. Yet Mr. Hammar is not alone in raising this
issue. There are others here in the United States and elsewhere who share
his views (I will be debating some of them on August 12), and have solicited
support in the gay community of persons who would just as soon not believe
that the virus they carry is harmful to others.
It is difficult accepting
that a wife, husband or lover will die because of a transmitted virus,
especially troublesome if the person knew ahead of time that he or she
carried the virus. With no knowledge, however, there is less guilt. If
the antibody test is worthless, then that too reduces guilt. Thus the message
that HIV antibody tests are not indicative of infection, and offer little
prophesy with respect to transmission is popular to some. For public health
officials, however, the message offers nothing but despair since such officials
recognize that more people with such beliefs will become infected, more
will pass the disease on to others, and more will die. All because of denial
or ignorance.
The current issue of the
British Journal of Obstetrics and Gynaecology
has an interesting article that documents the benefits that come when testing
become widespread and health officials address the virus in a biologically
relevant manner. The abstract, posted earlier today on the Internet, speaks
clearly (see below).
"Zidovudine has markedly reduced vertical HIV transmission rate in Europe"
WESTPORT, Aug 04 (Reuters)
Data from The European Collaborative Study suggest that more than 90%
of HIV infected pregnant women enrolled in the study received zidovudine
during pregnancy resulting in a decreased vertical HIV transmission rate,
according to a report in the July issue of the British Journal of Obstetrics
and Gynaecology.
Dr.
M.L. Newell of the Institute of Child Health in London
and colleagues surveyed obstetricians from 54 centers to obtain information
about management practices in place "...to reduce the risk of vertical
transmission of HIV." The investigators found that zidovudine use is widespread,
with more than 90% of infected pregnant women taking the drug. In all centers
participating in the study, infected women have been advised to avoid breastfeeding.
Nearly 30% are offered elective cesarean section and 21% of centers have
a policy of routine vaginal lavage for HIV infected women. Zidovudine plus
avoidance of breastfeeding "...have had a major impact on mother to child
transmission of HIV," the authors state, with the rate of transmission
having dropped from 15% to 9%.
What is still unknown, they comment, is
how early in pregnancy therapy should be initiated and how long it needs
to be continued in the neonate. "Lack of knowledge has led to centre-specific
ad hoc management and there is a need for a standard approach and pooling
of experience." The authors note that an ongoing obstacle to further reduction
of vertical HIV transmission is the lack of awareness of HIV status among
pregnant women.
Dr. Newell and colleagues note that 80% of infected women
are unaware of their HIV status at the time of delivery. Antenatal screening
programs need to be implemented and their effects monitored, the investigators
write. Br J Obstet Gynaecol 1998;105704709.
The two main points that the authors make
are: 1) the enormous benefits
of treatment and care, and 2) the perils of lack of awareness. They recognize,
like many others, that there can be no treatment benefits without testing.
What they did not emphasize (but likely feel) is that the benefits of prevention
are also reduced by lack of testing. Those who are able to accept the importance
of testing, early detection, early prevention and early care will have
a greater chances to do good by protecting the society and helping infected
persons. Those who want to remain general in their focus, obscure in their
understanding of biologic principles, and unaware of the devastating trends
of the epidemic may remain blissful, but will not be servants of public
health.
So how do others in Southeast Asia feel about his issue? Many have written
to SEA-AIDS asking for information or assistance. How about assisting others
with observations about what is occurring in your local society where testing
is likely becoming increasingly common.
What paths are people taking to avoid becoming infected? What efforts
have they made to save their unborn infants from near certain death when
the mother is infected? Are there tales of public health heroics out there,
or only stories of frustrations and failures?
Please speak out if you live and work in Southeast Asia.
We need to hear from you.
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