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Frerichs, R.R. Acceptance of personal HIV screening.

SEA-AIDS Network, August 6, 1998.

Posted in response to:

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.

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 " 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.