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Women and AIDS:

The Ethics of Exaggerated Harm


Mary Ann Sushinsky, University of Massachusetts, Dept. of Philosophy, USA

David Mertz, University of Massachusetts, Department of Philosophy, USA

Udo Schüklenk, Monash University, Centre for Human Bioethics, Australia


Introduction.

The amount of money and public resources spent in the last ten years for the fight against AIDS is unique. Last year a record $2.5 billion was approved by Congress for AIDS prevention and research.[1] No other disease in history, killing relatively so few people, has generated such a large amount of research monies, so much public attention, nor so many new professional journals, as AIDS has done.[2] AIDS is a predominantly male disease in all so-called First World countries, restricted to limited risk-groups.[3] It will remain so limited, since, as we show below, there is no significant First World pattern of heterosexual transmission of AIDS. Political calculations, not epidemiological warning signs, have led to the pervasive ideology of the imminent eruption of a heterosexual AIDS epidemic and thereby the inevitable extension of AIDS to large numbers of women.

Both scientific and popular literature have exaggerated the significance of the number of women with AIDS, and of the epidemiological danger of sex for women. We argue that many feminist ethicists have accepted these exaggerations, and have used them in supporting the view that women are victimized by a system of oppression which permeates the medical and political establishments. However pervasive oppression of women may be in medicine and politics, this conclusion is not supported by reliance on the faulty premises AIDS ethicists have employed. We further argue that these incorrect assertions about AIDS, and their endorsement by women's advocates, are concretely harmful. Current AIDS ideologies and policies cause resources to be wasted, rather than used efficiently to alleviate the sufferring of those with AIDS and to prevent its spread among those who are truly at risk. Psychological harm is additionally done to women who are needlessly encouraged to identify as victims, and to fear and avoid sexuality.

Inventing the epidemic of women with AIDS

Variations on the theme "women are the fastest growing risk-group for AIDS" appear virtually everywhere, in the scientific no less than the popular press. Sometimes these statements are literal untruths; at other times they merely insinuate untruths in their equivocation between rates of disease and rates-of-change in population-specific disease rates.

For example, the medical journal The Lancet [4] asserted in a 1993 article that "Women are the fastest growing group with HIV infection in the USA." But the basis for this claim is obscure. Estimates of the prevalence of HIV infection are well-known to be unreliable, and have been continually revised downwards. In 1990, the CDC estimated that 1 milllion Americans were infected with HIV. This 1 million figure represents a reduction from earlier CDC estimates of 1.5 million.[5] The latest report from the CDC puts the number at approximately 600,000 to 800,000.[6]

The claim that women are the "fastest growing group," whether of the HIV-infected or of AIDS patients, is misleading and alarmist to the lay reader. Wording that obscures the distinction between proportional rate of growth and absolute increase is often made by popular articles stressing the size or urgency of the problem among women. For example, Suki Ports[7] states that, "the fastest growing numbers of AIDS cases are among women." Other writers merely insinuate patterns that don't exist, without outright misstatement. A Panos Institute[8] book informs us, "where HIV has so far spread mainly among gay (homosexual) men and injecting drug users [IDUs]--women now account for just over 10% of AIDS cases." One should observe that a contrast is drawn between hitherto spread "mainly among gays and IDUs" and the current 10% among women. Even leaving aside the fact that most of those 10% of female cases are IDUs themselves,[9] 90% continues to constitute "mainly" by anyone's definition. Nothing has changed according to the Panos Institute statement, and yet that very fact is used to indicate an imminent epidemic among women.

If we look at the figures for total AIDS diagnoses, we see that although women show a percentage growth rate higher than other broad categories of people with AIDS, they still represent a small proportion of the increase in numbers of people with AIDS in the latest reporting period. Many times more men are newly diagnosed with AIDS each year than are women (hence the actual increase in cumulative AIDS cases is greater among men than among women). Compared to the 6,153 women in October 1991-September 1992 and 14,792 in October 1992-September 1993 who were diagnosed with AIDS, 36,833 and 81,707 men were diagnosed in the respective intervals.[10] In Australia the percentage increases over the same period among women are higher than among men, but the numerical increases are still less than those among men by an order of magnitude.[11]

A November 1993 CDC report shows a change in new AIDS cases among male injecting drug users from 8,621 in October 1991-September 1992 to 19,142 in October 1992-September 1993.[12] This is an increase of 10,521 AIDS cases, most of them due to the extended 1993 surveillance definition.[13] Female IDUs go from 2,815 to 6,891 new AIDS cases in the same interval, an increase of 4,076. Combined, this is an increase of 14,597 cases among IDUs of both sexes. As stated above, adult/adolescent women as a whole go from 6,153 to 14,792 cases, an increase of only 8,639 during the same interval. While this increase among women is still, perhaps, cause for alarm, it is numerically less than the increase among male IDUs, let alone IDUs in general. Even men who have sex with men went from 24,334 cases to 46,025 cases in the intervals mentioned, an increase of 21,691. These increases are largely an artifact of the changed 1993 surveillance definition, which reflects an underlying net decrease under constant definition; however we report them to show that even according to the official numbers, the growth of AIDS cases among women is small compared with the increases in other groups.

AIDS Ethicists

Christine Overall, a distinguished Canadian philosopher with a remarkable record of publications in practical ethics, has also attempted to make the case that the AIDS threat to women has not been sufficiently addressed.[14] The central claim of her article, "The (Hetero)Sexual Politics of HIV Infection," is that "little attention has been paid to misogynous themes in AIDS policy, commentary, and education, which are rendered virtually invisible by the almost exclusive focus on men."[15] She goes on to lament the fact that "the situation of men with AIDS is taken to be the norm, and the issues that concern women--particularly with respect to reproduction and sexuality--are regarded as specialized, marginal, and less significant."[16] Overall wants to establish that AIDS policy should focus more on the problem of heterosexual AIDS transmission to women.[17] She therefore purports that the official figures "may well under-represent the number of female Canadians with full-blown AIDS."[18]

On all of these points, we disagree with Overall. When we examine the actual numbers of women vs. men with AIDS, it appears less plausible that it is "misogyny" that led to the focus on men with AIDS as the "norm," than that it is a realistic appraisal of the situation. As of January 1991, about a year after the time we assume Overall's article to have been written, 4,647 persons (mostly gay men and injecting drug users) had contracted or died from AIDS in Canada. Of these, 175--approximately 3.76%--were women, the vast majority of whom had reported injecting drug use as their AIDS risk category.[19] Such is not really a good argument for the significance of "the heterosexual politics of HIV infection," as Overall's use of the title implies.

The actual Canadian data, in failing to support her argument, leads Overall to her speculation that the reported number of women with AIDS must be too-low to be true. She, however, offers no empirical evidence for this claim. Empirical science allows no way to disprove the a priori assumption of underreporting, made by those, like Overall, who do not accept the officially published numbers. By postulating an unobserved, and unobservable, empirical reality, Overall makes her arguments unfalsifiable. Nonetheless, there are considerations which diminish the plausibility of Overall's claim. Overall's committment to the view that there are many women with unreported AIDS assumes that a major mode of transmission is heterosexual intercourse. Yet, medical scientists all over the world have been paying close heed for ten years for the first signs of a heterosexual epidemic, but have failed to announce one. In fact, as we have pointed out elsewhere, the heterosexual AIDS epidemic has effectively been called off by epidemiologists and health authorities of most Western countries.[20]

Another consideration to bear in mind when assessing the risk of heterosexual transmission to women involves the notion of "tertiary transmission." Primary transmission is transmission of HIV within a primary risk group; secondary transmission is from a member of a primary group to his or her sexual partner. Tertiary transmissions involve the spread of the disease out of the secondary non-high-risk-group to another non-high-risk-group individual. According to Michael Fumento, "One key indicator of whether AIDS was becoming epidemic among heterosexuals would have been the amount of tertiary transmission. Yet, at the height of the media heterosexual AIDS flap, the concept of tertiary transmission was ignored by both the media and public health authorities. . . . The media simply assumed the existence of such transmission."[21] However Fumento, in examining the health department records of cities including New York and San Francisco was unable to discover a single case of documented tertiary transmission.[22] Given the rarity of tertiary transmission, the belief that most women are at risk for AIDS is unfounded.

Overreporting of Heterosexual Risk for AIDS

In the USA, the nation with the largest number of AIDS cases,[23] adult and adolescent women have made up 40,702, or 12% of the cumulative 334,344 AIDS cases as of November 1993.[24] However, within these forty thousand cases, the cases of heterosexual transmission have been exaggerated and are far disproportionately discussed in the popular press and by bioethicists. Overall's title is merely one example. Many books and articles contain similar language on "heterosexual AIDS in women."[25] Heterosexual transmission, however, makes up a minority of female AIDS cases, with injecting drug use constituting the majority of transmissions. For the most recent reported interval from October 1992 to September 1993, 6,891 female cases with injecting drug use as mode of transmission were reported, while 5,545 were reported with heterosexual contact as the risk-category.[26] This still may seem like a large number of heterosexual transmissions, but if we look beneath the surface of these figures, we find reason for doubt.

Of the allegedly heterosexually-transmitted female AIDS cases, where the risk category of the male partner was identified, the majority of the partners--2,474--were IDUs. Only 423 of the male partners were bisexual men, while 2,131 of the male partners were HIV-infected persons with unspecified risks.[27] Is it reasonable to accept that all these women partners of IDUs could have contracted AIDS only via heterosexual transmission as they reported? Particularly in light of the argument we have made elsewhere[28] that there is substantial overreporting of heterosexual risk category in men, we strongly suspect that many of the female reports of heterosexual risk-category are misreports. For all the same reasons that other people lie to doctors about stigmatized activities, such as male-male sex, women with AIDS lie about use of injected drugs.[29] It therefore seems highly likely to us that a substantial number of the reported cases of heterosexual transmission in the partners of injecting drug users, in particular, are themselves injecting drug users.

Evidence that misreporting occurs lies in the fact that the majority of women who report heterosexual transmissions claim to have been infected by male IDUs. While men who have sex with men account for over twice as many AIDS cases as men who use injected drugs, the heterosexual transmission reports assume them to be about six times less likely to transmit AIDS to women (see above discussion).[30] A cumulative 183,344 men who have sex with men have developed AIDS in the USA, while a cumulative 80,713 injecting drug users have developed AIDS.[31] If the above mentioned 2,474 female AIDS cases actually contracted AIDS via heterosexual transmission from their intravenous drug-using partners, as reported, then either (A) HIV/AIDS is significantly more heterosexually transmissible by IDUs than by bisexual men; or (B) no more than 1/12th of men who have sex with men also have sex with women. In the absence of a plausible biochemical explanation, we must reject (A); (B) contradicts familiar sexological surveys from Kinsey on.[32] Studies have consistently shown that most men who have sex with men also have sex with women. Our conclusion, therefore, must be that there is underreporting of non-heterosexual risk among partners of IDUs. None of this demonstrates that women are at less of an overall risk than CDC data suggest; it does, however, suggest that the AIDS risk to women is not in significant part the risk of heterosexual intercourse so widely publicized popularly and professionally.

Feminist Ethics' Misleading Focus on Sexuality

Despite the relative rarity of sexually transmitted AIDS in women, indicated above, articles by feminist ethicists frequently stress sexual risk for AIDS. Ironically, Overall herself is aware that increased sexual activity does not in itself translate into increased risk for AIDS. According to Overall, the focus by the AIDS establishment on prostitutes as possible "vectors of transmission" overlooks the low incidence of AIDS in this group and further causes an ideological belief that it is only "bad" (i.e., promiscuous) women who get AIDS. Overall correctly reminds us that it is not the number of partners that increases risk, yet she goes on to assert that it is heterosexual activity that women must fear. Women are put at risk, according to Overall by ". . .the kinds of sexual activities engaged in: a woman could easily be infected by one HIV-positive individual with whom she has a long-term unprotected monogamous relationship."[33] Even here, what is crucial is not "the kind of sexual activity," but with whom, a fact which Overall obscures. Since most women are not involved in "long-term unprotected monogamous relationships" with IDUs or bisexual men, the risk of heterosexual acquisition of HIV/AIDS is slight to most women.

Similarly, ethicist Nora Kizer Bell echoes the received wisdom that heterosexual intercourse is dangerous, especially for women.[34] Bell admonishes all heterosexuals to be wary, quoting those who have warned that "The message for individuals engaging in heterosexual intercourse outside of longstanding mutually monogamous relationships is clear. Human immunodeficiency virus infection is present in the heterosexual community . . . it would behoove both men and women to protect themselves."[35] Bell, like Overall, explicitly recognizes that the threat of heterosexually acquired AIDS depends upon the HIV/AIDS status of one's sex partner, but she (again, like Overall) fails to credit this fact when she stresses that heterosexual intercourse, unless it is with a "longstanding monogamous" partner, is risky.[36] Actually, the risk of heterosexual transmission is also a function of frequency of exposure. In fact, heterosexual transmission has been shown to be quite difficult, requiring upon average over one thousand, unprotected acts of intercourse with an infected partner for seroconversion to occur.[37] A woman faces a much greater risk of HIV-seroconversion from a long-term monogamous relationship with an IDU than from "promiscuous" or "casual" sexual contacts with non-IDUs. Yet, again and again, it is "promiscuous" or "casual" sex, i.e., sex outside of a longstanding relationship, which is characterized as most dangerous by bioethicists like Bell and Overall.

Just how "dangerous" is the AIDS-risk of heterosexual sex--even if we are incorrect about the degree of misreporting--when understood against the background of other public health concerns? Even if all of the 3,328 men and 5,545 women with AIDS who report heterosexual contact as their sole risk are making accurate reports, it is important to notice that these numbers would contribute only in small measure to the total health risks facing heterosexuals. These 8,873 new cases from October 1992 through September 1993, most reported under the greatly expanded 1993 AIDS surveillance definition,[38] correspond to somewhat fewer than 5,000 AIDS deaths per year. This approximate 5,000 may be put in perspective by comparison with the annual 496,000 American cancer deaths, 734,000 heart-disease deaths, 146,000 stroke deaths, or 43,500 automobile fatalities[39]--most of each occurring, presumably, among heterosexuals. The usual rejoinder to such perspectivizing is that "even one death is too many;" and of course we agree. While "one death" is indeed "too many," such an observation does not logically give AIDS a distinctive significance apart from those of other causes, as the phrase rhetorically insinuates.[40]

Lesbian Sex and AIDS

The heterosexual threat of AIDS is not the only concern expressed in bioethics and feminist literature. Extending the theme of "risky sex," much has been made of the risk of AIDS infection to lesbians. The New York City Gay Men's Health Crisis has implemented a "Lesbian AIDS Project"--presumably to avert feminist arguments about the male-dominated Gay Men's Health Crisis. The coordinator immediately started producing "lesbian safe sex kits, which will include a range of relevant products--gloves, cots, condoms, dental dams, lube and literature." The next project is said to be a "comic book illustrated by gay and lesbian cartoonists." However, the known facts do not support an ideology of fear. In fact, the risk of a lesbian contracting AIDS by means of woman-to-woman sex is miniscule. There have been only two case reports of alleged female-to-female transmission of HIV within the last decade.[41] Later reviews of AIDS cases in the USA in women who reported having sex only with other women found that all had a history of injecting drug use or receipt of blood transfusions.[42]

The lack of actual woman-to-women transmission of HIV/AIDS has not prevented feminist medical ethicists from criticizing mainstream AIDS education for not addressing what they regard as a significant problem. Nora Kizer Bell laments "that reliable safe sex information for lesbians is neither widely distributed nor widely known to be available."[43] Bell is mistaken about this. Every book we can find mentioning "women" and "AIDS" in the title has sections on AIDS in lesbians, with an inevitable section on lesbian transmission of AIDS. The book AIDS: The Women[44] predates Bell's proclamation by four years, and contains a chapter entitled All That Rubber, All That Talk: Lesbians and Safer Sex[45] whose tone clearly assumes safe sex knowledge to be ubiquitious among lesbians. Women & AIDS[46] makes the same assumption, while praising the virtues of dental dams. Lesbian magazines such as On Our Backs also provide instructional material, and moral guidance, on safer sex.[47] Our personal experience has shown largely locally produced materials urging the use of dental dams and other safe sex equipment in gay and lesbian bookstores (and similar lesbian-oriented establishments) worldwide; and we have found all lesbians of our acquaintance to be quite familiar, at least intellectually, with safe sex practices--although few feel these measures are worth personally conforming to. Given the non-existent to minuscule risks of HIV/AIDS transmission in lesbian sex, we find these judgements generally more rational than those of bioethicists like Bell.

The Harm of Ethics

If, as we have argued above, the belief that we are on the verge of an out-of-control epidemic of AIDS among heterosexual and lesbian non-IDU women is unfounded, one might ask whether the existence and continued promotion of such a belief really does harm. Is it not, after all, better to err on the side of caution and prudence, and to urge safer sex, less promiscuity, and less casual or uncommited sex? Perhaps the attempt by women's advocates to appropriate AIDS as a threat to all women is for women's own good.

First of all, there is a basic material injustice which is perpetuated by the current AIDS response. The policy of supporting the spread of AIDS hysteria among those not at significant risk causes more suffering to those who are at significant risk. If talent and resources are being put to use on behalf of women who don't need them, there is less to be utilized where they are needed. The belief that AIDS threatens most women fuels public policy like the following proposal put forward by Guinan and Hardy that "it is important to educate all women about their risk of sexually acquired AIDS and to encourage risk-reducing behavior."[48] The vast majority of women are simply not at risk for HIV/AIDS. In times of scarce health care resources we believe that it is an irresponsible waste of such monies to keep women who aren't at any real risk of contracting AIDS informed about it. And once again it turns out that those most shortchanged by such a policy are those who are least empowered in our society. Women are dying of AIDS, but it is not because of heterosexual or lesbian sex. Rather, AIDS disproportionately affects those women who inject drugs, and thereby largely suffer other diseases, poverty, and malnutrition. It is to these women that a just expenditure of public health care funding would go for both education and treatment--education primarily of the risks of IV drug use, not of sex, and treatment of the health problems characteristic of IDUs, male or female.

Second, women who are not at great risk for AIDS are also harmed by the current AIDS response. Many women who aren't at risk of AIDS inevitably, each time they have sexual encounters, think of AIDS. Anxiety, depression, hundreds of thousands--probably millions--of unnecessary HIV-tests, and broken relationships are the results of such campaigns. Chapman correctly questions the appropriateness of such campaigns:

Is a government program of scaring people--especially when there is little basis for them to be scared--something that public health should see as a relatively benign means to a more important end? Or is the intrusion of this concern into every sexual encounter some form of state-sanctioned mass neurosis? Is it not worth asking seriously about the social and emotional costs involved in public health efforts attempting to have all sexually active people become sufficiently anxious about acquiring HIV to insist on condoms in every sexual encounter?[49]

The amount of needless anxiety provoked around AIDS in those not at risk is truly remarkable. Women, and men, consistently tell pollsters that their fear of AIDS ranks well above that of many dangers posing much greater objective risks. One recent poll, for example, showed 32% of respondents worrying "a great" deal about getting AIDS from people they date, while an additional 35% worried "somewhat" or "a little."[50]

Third, the portrayal of women as objects of society's indifference to their suffering often contributes to an ideology of female victimization and powerlessness which is ultimately harmful to the cause of women's liberation. To exaggerate society's neglect of women's suffering is to essentialize women as victims and therefore to buy into the same gender stereotypes against which Overall and other feminist ethicists have written. Many critics now speak against this trend in the women's movement toward what Naoimi Wolf has called "victim feminism." "Victim feminism" sees women as "beleagured, fragile, intuitive angels," [51] and attempts to gain power for women primarily by advancing for them a status of moral superioriority as victims of a misogynist culture. Although it is certainly true that women have suffered, and continue to suffer many injustices, to dwell on the ways in which women are shortchanged can, at best, be a first step toward change. It is little helpful to women to overplay the ways in which society neglects and harms them--or indeed to invent harms from thin air as AIDS ethicists have done. Ultimately, this strategy cannot help but lead to the adoption of an identity of powerlessness and victimhood, an identity which, as a self-fulfilling prophecy, tends to erode further women's self-confidence and initiative. Perhaps what women need if they are to break out of the limitations on their opportunities and abilities unjustly imposed by sexism are more models of themselves as competent adults, rather than as merely imperilled and downtrodden. Although we believe that many of the articles written by feminist ethicists and women's advocates have been motivated by the desire to help women, the real results have been the misdirection of resources, the promotion of unnecessary fear and anxiety, and the fostering of victim identities.  We think the exaggeration by ethicists of the threat of AIDS to women contributes more to their oppression than their liberation.