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Double Victims: Poor Women and AIDS a
Vivian T. Shayne PhD & Barbara J. Kaplan PhD
b
a
Director, The Social Science Research Laboratory, American University, Washington, DC b
Associate Professor, Department of Psychology, State University of New York, College at Fredonia Published online: 05 Nov 2010.
To cite this article: Vivian T. Shayne PhD & Barbara J. Kaplan PhD (1991) Double Victims: Poor Women and AIDS, Women & Health, 17:1, 21-37, DOI: 10.1300/J013v17n01_02 To link to this article: http://dx.doi.org/10.1300/J013v17n01_02
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Double victims: Poor Women and AIDS
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Vivian T. Shayne, P h D Barbara J. Kaplan, P h D
ABSTRACT. Women constitute the fastest growing group of people with AIDS; a disproportionate number of poor minority women are affected. Educat~onand prevention campaigns have not been directed at this population. Though intravenous drug users have been identified as "at risk," many American women have been identified as HIV positive only after giving birth to a child who develops AIDS. Combating AIDS in women offers a formidable challenge to social service and public health officials because it mandates consideration of intravenous drug abuse, hieh rates of unwanted and teenage pregnancies, poverty, discriminat~onand inadequate education. Currently, women constitute 9% of all AIDS cases (Centers for Disease Control [CDC], 1990). At this rate over 20,000 would be diagnosed with AIDS by 1991 (Cochran and Mays, 1988; MacDonald, 1986). Although many are alarmed by the increase of AIDS among women, the danger of AIDS to the heterosexual community constitutes a controversial subject. On the one hand, conclusions in the Masters, Johnson and Kolodny (1988) study are viewed as overly Vivian T. Shayne is Director, The Social Science Research Laboratory, American University, Washington, DC. Barbara J. Kaplan is Associate Professor, Department of Psychology, State University of New York, College at Fredonia, Fredonia, NY. Reauests for remints should be addressed to Dr. Vivian T. Shavne. Director Social 'Science ~eiearchLab, The American University, 4400 ~assach;setts Avenue, N.W., Washington, DC 20016-8019. Women & Health, Vol. 17(1) 1991 O 1991 by The Haworth Press, Inc. All rights reserved.
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WOMEN & HEALTH
alarming. At the same time, an article in Cosmopolitan (Could, 1988) reassured anxious women that they are not at risk as long as they engage in "ordinary sexual intercourse," stating that even if exposed to an infected man, women are not vulnerable as long as they do not engage in anal sex, or have an open lesion in the vagina. With such conflicting information available, it is not surprising that women constitute the fastest growing group of people with AIDS (Guinan and Hardy, 1987). Although seropositive rates for some high risk populations (like white, middle class, adult gay men) appear to be on the decline, the rate for women remains unchanged (CDC, 1987). In New York, AIDS is now the leading killer of women aged 24 to 34 (New York City Commission on Human Rights, 1986). EPIDEMIOLOGY
Most of the AIDS diagnoses reported are for women between 30 and 34 across all ethnic groups. Although the disease is generally not associated with the elderly, 10%of white women diagnosed as having AIDS are aged 65 or older (CDC, 1990). Most of these elderly women probably acquired their infection through transfusion with contaminated blood products. This is one source of viral transmission that has virtually been eliminated as a causal factor for HIV infection. About seventy-three percent (73%) of the women who have received an AIDS diagnosis are women of color. More specifically, fifty-one percent (51%) of women affected are Black and 15.6%are Hispanic; though Black women account for only about 14.7% of this country's female population and Hispanic women account for only 7%. In New York City the proportion of Hispanic women affected is much higher (32%).The cumulative incidence of Black and Hispanic women who satisfy the CDC surveillance case definition for AIDS is ten times that of White women (CDC, 1986). However, in this context, it is important to note that estimates of prevalence for nonethnic women have been more difficult to gauge because so little is known about the prevalence of HIV outside established high risk groups (MacDonald, 1986). Unfortunately, many minority heterosexuals were not adequately
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Vivian
Z Shayne and Barbara J.
Kapfan
2.3
alerted, and were unaware of their risk for AIDS until very recently. In contrast to the White population, AIDS transmission among Blacks and Hispanics poses more danger to these heterosexual populations (Eakeman et al., 1986; CDC, 1986). However, targeting Black and Hispanic women at risk may have been tempered by a need to avoid stigmatizing these groups (Allen et al., 1987). At least initially, national magazines and television advertisements featured cover photos of White teenagers, women and heterosexual couples (Daniels et al., 1987). Among women with AIDS, about 51% are intravenous drug users. IV drug use consistently emerges as the leading cause of AIDS among women of all ethnic backgrounds, except for Asians, who appear most likely to contract the disease through transfusion (CDC, 1989). Table 1 presents our knowledge of the source of HIV-infection for women as of April 1989 (CDC, 1989). Intravenous drug users are susceptible to many infections because needle-sharing practices result in contaminated needles and water. Also, substances used to "cut" heroin are good agents for bacterial and viral growth. In addition, many intravenous drug users, having fewer social and economic resources, often delay medical treatment (Shulman and Mantell, 1989). For individuals who are poorly educated, especially with regard to health and medical knowledge, fear of AIDS is just one more problem to cope with along with day-to-day problems of poverty and survival. In this context it is important to note that many people, who suspect they have been exposed to HIV infection, resort to excessive use of alcohol or recreational drugs (Wolcott, Fawzy and Fasnau, 1985). Such tendencies are likely to be exacerbated for addicted IV drug users. An estimated 30 to 50% of female intravenous drug users have engaged in prostitution (Drucker, 1986; Ginzburg, 1984). Among prostitutes - at least on the West Coast - 1V drug use is considcred to be the primary cause of AIDS (CDC, 1987). Drug-abusing women were especially likely to transmit infection to their sexual partners and their unborn children, since drug users have been generally disinclined to use contraception or engage in safe sex. While addicts have curtailed their needle-sharing bchavior, in reality this means becoming more selective in choosing a needle-sharing partner. Generally, most addicts have experienced strong social pres-
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24
TABLE 1 . Reported sources of female exposure to HIV infection Exposure catesorv
-(%)
Hemophilia Coagulation Disorder
Himanic(%)
Asian(%) -(%I
24(1)
782 (27)
Heterosexual
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-(%)
Contact Sex with IV Drug User 402 Sex vith Bisexual Male
183
Sex with Hemophiliac
44
Born in Pattern I1 Country
1
Sex with . other born in Pattern I1 country
1
Sex with Transfusion Recipient
47
Sex with person with HIV infection risk not specified 104 Recipient of Blood Transfusion
709 (25)
Other
200(7)
TOTAL
2,890(100) 5,488(100) 2,119(100)
61(100)
Numbers derived from Centers for Disease Control, January 1990.
25(100)
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T. Shayne and Barbara J. Kaplan
25
sure to continue sharing needles. The "shooting partner" may be the most significant social relation in the drug use sub-culture. Often such partners are also sexual partners (Des Jarlais et al., 1987). .Only recently has the threat of AIDS provided the impetus to' change these norms. Although some authorities consider them recalcitrant to treatment, the proportion of intravenous drug-using women with AIDS actually declined in the 1983-1986 interval, while the proportion of AIDS for male intravenous drug users and homosexual or bisexual males remained stable (Guinan and Hardy, 1987). This is all the more remarkable since treatment facilities are used tocapacity and maintain long waiting lists. However, while drug-abusingwomen account for substantial numbers of AIDS cases among women, the proportion of women with AIDS through heterosexual contact has also been steadily increasing. It is still increasing, up from 12% in 1982 to 20% in 1986 (Guinan and Hardy, 1987). Currently, about 30% of women with AIDS have been infected through heterosexual sex in contrast to 2% heterosexual contact for men (Cochran and Mays, 1989, CDC, 1990). This is probably happening because more men are infected than women, so heterosexual women are more likely to encounter an infected male partner, while men are less likely to encounter an infected female partner. Additionally, HIV may be transmitted more efficiently from men to women than the other way around. Many women are unaware of their exposure to a partner who is an IV' drug user or bisexual (Guinan and Hardy, 1987). IV drug users are the principle transmitters of AIDS to the heterosexual and newborn populations (Des Jarlais et al., 1986; 1987). In almost 13%of the AIDS cases among women reported to the Centers for Disease Control, the individual was exposed to more than one risk factor. In such cases CDC tries to identify a primary risk factor, although it is not possible to determine with any certainty which factor was the actual source of infection (CDC, 1989; 1990). The descriptive statistics on women who have contracted AIDS may differ significantly from the one currently comprised of asymptomatic HIV-infected women. There are also indications that wom-
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WOMEN & HEALTH
en are more susceptible to AIDS Related Complex (ARC) than men, so that the actual prevalence of AIDS infection understates the magnitude of the health problems that women face (Novick, Berns et al., 1989).
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PREVENTION AND THE SOCIAL CONTEXT
Many American women have been identified HIV positive only after giving birth to a child who exhibits symptoms of AIDS much sooner and more profoundly than they themselves do. This pattern has also been observed in France, where in a recent study of 274,647 women, two births or abortions per day involved HIV positive women (Coles, 1988). One-third of these infected women had no idea they were at risk. In surveys of sexual behavior among heterosexuals at risk for AIDS, many individuals appeared disinclined or even resistant to changing sexual behaviors (Siegal et al., 1988; Siegal and Gibson, 1987). Denial occurs frequently in an effort to avert the anxiety which would result from a more realistic appraisal of vulnerability. Others felt they were not at risk because they did not engage in anal sex or because they were selective in choosing sex partners who were not affiliated with known risk groups. An estimated 120,000 current or former IV drug using males live with women in heterosexual relationships in New York City alone (Staver, 1987). The risk reduction factors that influence men and women differ. Cochran and Peplau (1989) found that women appear to be influenced more by past experience such as treatment for a sexually transmitted disease, while men seem to be influenced by more internalized factors such as level of homophobia or perception of being at risk. Few of the women most vulnerable to AIDS take the necessary precautions to prevent infection (Cochran, 1988; Mays and Cochran, 1988). According to Mays (1987; Mays and Cochran, 1988), many women are fearful that the demand for safe sex will drive away a man. They have been socialized to feel that if they do not have a man in their life, they have no life. It is not enough to inform women about the importance of using condoms to avoid contracting the AIDS virus, women need to learn how to discuss safe sex with
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their partners. Although women purchase 40% of all condoms sold (Mengies, 1986); many women still find it difficult to initiate condom use in safe sex oractice. Women are much less likely than men to question their husbands and lovers about their sexual or drug use habits or preference, yet .this is the advice contained in popular writing on sex for singles (Cochran, 1988). And, of course, there is no guarantee that sexual oartners will tell the truth. Educating poor women at risk carries with it formidable challenges. Safe sex is an economic compromise for many poor women who rely on sex as a source of employment, as a means to establish ownership or proprietary rights in relationships, or as a means of simply getting tangible supports, generally short in supply (Mays, 1987). Risk reduction appears especially difficult with intimate sexual partners. In studies of this population, prostitutes were more vulnerable to infection from sexual encounters with boyfriends, or through intravenous drug use, than from their sex work activities (Mays, 1987). In fact, the impact of AIDS prevention information directed at the general public has proven counter-productive for many groups of women who only feel more frightened, isolated and powerless to change their circumstances. Armstrong (1988) suggests that in many cultures the women who suggest using condoms for contraception are degraded, considered "loose," or even beaten; and these reactions are likely to be exacerbated when condom use to supplement contraception is advocated. Expressed concern over AIDS is often considered indicative of a lack of trust and often serves only to provide grounds for hostile suspicions. Even professional journals have featured articles that have been criticized for possibly misleading inferences. In one recent medical publication, choice of sexual partner was singled out as the most important AIDS risk factor-by several orders of magnitude over other risk factors (including failure to practice safe sex with a condom; Hearst and Hulley, 1988). The authors conceded that it is not always possible to know a partner well enough to be sure that the partner is not at risk for AIDS. However, helping professionals who are most inclined to make prescriptions based on these findings, should not forget that many women at risk really know compara-
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WOMEN & HL4LTH
tively little about their sexual partner's behavior, and are often discouraged from making inquiries for fear of potentially hostile or abusive reactions from their partners. Women who have multiple sexual partners need to know that simply reducing the number of sexual partners they have does not eliminate risk (Goedert et al., 1986). The HIV virus has been acquired through a single exposure (Friedland and Klein, 1987). Risk also appears to vary substantially as a function of geographic locale (Friedland and Klein, 1987). Although the information available on the relation between specific heterosexual practices and seropositivity is inconclusive, anal intercourse is clearly not required (Fischl et al., 1987), Often, by the time women find out about their vulnerability to AIDS, they are themselves very sick, or have a baby who is very sick, or both. Women infected with HIV are the major source of infection of infants with AIDS. Trends in AIDS in women will determine future trends for pediatric cases. The number of children with AIDS in New York City is doubling every 8 to 9 months. Right now the outlook is fairly dismal. Experts project a five- to ten-fold increase in pediatric AIDS by 1990 (American Medical News, 1987). Anonymous involuntary testing of infants in New York City led to the discovery that 61 out of every 1000 babies born was infected. As many as 1.5% of all pregnant women in New York City may be HIV positive. Many of these women may be described as "second generation" cases who acq~iiredthe infection from intravenous drug using sexual partners (Redfield, 1987). A third generation will acquire the disease through sexual contact with such second gencration cases. Thus, the spread of the disease is likely to be more difficult to track as the number of infected individuals grows: the risk categories are likely to broaden and become more diffuse (Cochran and Mays, 1989). As with men, women with AIDS may be subject to abandonment and discrimination by friends and family (Siebert, 1987). They have lost friends and family, jobs, apartments and rapidly depleted limited resources. In this context, it is important to remember that poor minority women generally suffer from inadequate quality or inaccessible health care. Poor women with AIDS often experience a profound sense of isolation and are desperate for support from fam-
Vivian T. Shayne and Barbara I. Kaplan
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ily, friends and community. Means of sexual expression are limited, while disclosure of health status often exacerbates this isolation.
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DETECTION AND THE COURSE OF ILLNESS
Historically, diagnosis and treatment of HIV infection in women has been problematic because women are typically regarded as a low-risk population (Gentry, 1987). Comparatively few AIDS prevention and service programs were created to meet the special needs of women. Women with HIV infection did not have an organized network of support and service advocacy. Much of the literature and many programs were almost pathetically irrelevant to the realities confronted by the poor, minority women at greatest risk (Staver, 1987). It was difficult for women to find primary care physicians, obstetricians, gynecologists, sex counselors, abortion counselors, and other health-related personnel to provide needed services (Gentry, 1987; Wofsy, 1987). About 73% of mothers with children who have AIDS are recipients of public assistance. The mean income of the fcw employed mothers is about $10,000 per year. Even comparatively stable families require substantial assistance to care for a child who has AIDS. Pediatric AIDS is extremely costly ($86,000 per year, compared to $55,000 per adult case per year). In fact, a total of $3.3 million was expended on care provided to 37 children with AlDS who were hospitalized in a Harlem hospital (Citizens Committee for Childrcn of New York, 1987). For both women and children, AlDS is likely to express'itself inpneumocystis cariniipneumonia (PCP) (Rothenberg et al., 1987). PCP has been more costly to treat, more devastating, and the onset of morbidity is swift, particularly for black women (Rothenberg et al., 1987). A substantial proportion of the PCP diagnoses among women across all ethnic groups involve older women. Women who are 3039 years of age account for about one-fourth of such diagnoses. In addition, women aged 30-39 account for about 43% of all wasting diagnoses, and 44% of all esophageal candidiasis cases reported occur for women in the same age bracket (CDC, 1989). The advent of AIDS has forced health care practitioners to con-
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WOMEN & HEALTH
front a series of entirely new problems. For example, there is some evidence suggesting that pregnancy may accelerate the progression of disease for HIV infected women (Landesman et al., 1989; Selwyn et a]., 1989). Subsequent to the birth of the first child, about one-third of HIV-infected women studied in Miami came down with AIDS (Scott et al., 1984, 1985). In one study, pregnancy associated AIDS deaths occurred an average of 113 days after diagnosis (Koonin et al., 1989). Immune system functioning is naturally suppressed during pregnancy. Moreover, pregnancy can mask symptoms of HIV infection. Fatigue, anorexia, and weight loss, which are early nonspecific symptoms of AIDS, are also common in early pregnancy (Minkoff et al., 1987). This is particularly problematic when women are not receiving medical care, or when they are receiving care but it is not administered by a practitioner expert in distinguishing the symptoms of pregnancy from those of ARC and AIDS (Koonin et al., 1989). Early evaluation of even minimal symptoms may be crucial to the health of pregnant HIV infected women and their offspring. By and large, pregnant women with AIDS are identified by asking them if they belong to a high-risk group or engage in high risk behaviors with individuals who belong to a risk group. However, this identifies.only a small proportion of cases. Various reasons for this procedure's lack of accuracy have been advanced. Some women, particularly addicts or prostitutes suspicious of institutions, are reluctant to admit to illegal or socially unacceptable behavior. Others may be unaware that their partners were infected. In one study of HIV infected women attending a clinic for sexually transmitted diseases, half did not acknowledge any high risk behavior (Quinn et al., 1988). This was especially pronounced for seropositive women under 25 years old. In areas like inner-city neighborhoods with significant HIV infection rates, broader counseling and testing programs may be needed to effectively contain the escalating rate of infection. Family planning decisions of HIV infected women constitute another area of concern. Of course, many women are unable to make informed decisions because they are unaware of pregnancy until it is too late, or because they are simply unaware of their HIV status.
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However, the provision of adequate counseling for women who find themselves in this circumstance~is.a'controversialundertaking. For many women, having a child is a desperate attempt to combat death and to leave a living legacy. The birth of a child may serve as a bond to a continuing relationship with a man (Mays, 1987). Moreover, pregnancy for addicted women often provides a positive incentive to change. For many, it is the first time they feel good about themselves. In'fact, many IV drug using women appear healthier during pregnancy because they have stopped using drugs (MacCallum, 1987). Although, many HIV positive women who do get sick during pregnancy miscarry or decide to have an abortion (Calvelli, 1987). Pregnant womcn with AIDS appear to suffer many obstetric complications -especially preterm delivery (Koonin et al., 1989). Not surprisingly, many of the women choose not to terminate pregnancy (Staver, 1987). Knowledge of HIV infection status does not appear to influence women's reproductive decisionmaking (Selwyn et al., 1989). For some, strong social prescriptions to have children dictate their course of action (Cochran and Mays, 1989; Wofsy, 1987). Yet, anywhere between 20-65% of these childrcn will acquire AIDS and will subsequently die (Selwyn et al., 1989). Both minorities and IV drug users have refrained from visiting test sites (Grabau, Truman, and Morse, 1988). Even in areas with high rates of AIDS among these groups, their numbers constitute a comparatively small proportion of clinic attenders (14-22%) at such facilities. This suggests a great need for more educational efforts and better mechanisms for clinic referrals. Addicted women also appear to be stigmatized more than their male counterparts (Rosenbaum, 1981; Sandmaier, 1981). When addiction appears to impede a woman's fulfillment of her nurturant role obligations, such biases may be exacerbated (Gomberg, 1982). The association of female addiction to prostitution is also a deterrent to sympathy (Inciardi, 1986; Rosenbaum, 1981). Female addicts are less likely to receive parental support than male counterparts, suggesting their stigmatization may be both more enduring and alienating (Rosenbaum, 1981). Perhaps because they are more easily stigmatized, women are more likely to conceal substance abuse (Robbins, 1989). Overall, substance abuse among women appears more strongly related to psychological problems like de-
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WOMEN & HEALTH
pression, distrust, and feeling upset, while men appear more socially impaired (Robbins, 1989). Men's addiction is likely to be detected because of problems which are manifested in school or on the job, while driving, with finances or the law, or when they seek emergency medical help. This type of societal response to drug use is especially problematic in the context of an AIDS crisis because helping professions do appear to convey, albeit in a subtle manner, strong prejudices against substance abusers (Moodley-Kunnie, 1989). For example, nurses may disapprove of doctors spending too much time with substance abuse patients. Abusers may even terminate treatment as a result of such expressive overtures (Soverow, et al., 1972). Treatment failure in this population has been attributed to staff rejection rather than abusers' lack of motivation-which constitutes a common explanation for the recalcitrancy of substance abusers (Sussman, 1966). Substance abusers who experience stigmatization or scapegoating may also react by accepting this lower status or role, and by seeking comfort from others with similar pathologies.
PROGRAMS, RESOURCES AND THE FUTURE People with AIDS have been isolated or disconnected from friends and family. They often become recipients of blame and shame simply for having contracted the disease. As a result, many of these individuals resort to denial which in turn can result in avoidance of medical care or involvement in unsafe sex. The need to empower persons with AIDS has become a recurrent theme among advocates who provide support and counsel to this population. In addition to being vulnerable to this disease, AIDS is of special concern to the many women who will invariably become caretakers for others who may be afflicted with AIDS. The Women and AIDS Resource Network (WARN) was organized to address the specific needs of women and children affected by AIDS. It is dedicated to the provision of services and education for women and children affected by AIDS. Increasingly, more outreach programs are being developed to
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3.1
reach individuals at risk, many of whom are not accessible through conventional programs. Women at risk are in need of special reassurances to counter a fatalistic perspective. Women at risk have been successful in the exercise of preventive measures. At least one large cohort of prostitutes who used condoms and did not share needles had a low level of HIV infection (Alexander, 1987). In addition, consideration must be given to involving sexual partners of women targeted for educational intervention because women may be reluctant or even unable in some cases to consider alternative sexual practices without enlisting cooperation of their partner. Combating AIDS in women offers a formidable challenge to social service and public health officials because it mandates consideration of IV drug abuse, high rates of unwanted and teenage pregnancies, poverty, discrimination against people of color and lack of education. Educational programs aimed at reducing risk for AIDS need to be sensitive to socio-cultural differences when targeting minority women. To a large extent, this entails a sensitivity to very different conceptions of risk. Addicts already risk their lives every time they inject drugs. Prostitutes are also well aware of life-threatening risks as part of their activities. Living in urban ghettos entails innumerable risks; AIDS is just one more risk. Because the communities hardest hit are often the most impovcrished they typically lack resources needed to care for this complex syndrome. In many urban communities, the funds are simply not available to cover the costs of prevention and treatment. Although the number of women with AIDS is growing, their problems continue to be neglected. They must compete for the attention of agencies already overburdened by the problems of other poor women-victims of domestic violence, pregnant teens, cocaine addicts, runaways and adolescent prostitutes, women who need housing, medical assistance, child care and jobs. The lack of interagency cooperation, material resources and simple awareness of the reality confronted by these women continues. The track record of human service agencies in resolving such problems is poor. The problems of women with AIDS are monumental. Meanwhile, it is all too apparent that the virus is spreading, and the dangers it poses affect us all.
WOMEN & HEALTH
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REFERENCES Alexander, P. (1987). Women of the Sex Industry. Paper presented to the National Conference on AIDS, San Francisco. CA, November 6. Allen, J., Bullough, V., Colton, H. et al. (JuLAug. 1987). Speaking out on AIDS: A humanist symposium. The Humanist, 21-38. American Medical News. (1987). AIDS support group aims at women. Nov. 6. Armstrong, D. (1988). Management of infectious diseases in patients with the acquired immunodeficiency syndrome. Kansenshougaku Zasshi. 62 suppl., 247-86. Bakeman, R., Lumb, J.R., Jackson, R.E., Smith, D.W. (1986). AIDS risk group profiles in whites and members of minority groups. New England Journal of Medicine, 315, 192, July 7. Calvelli, T. (1987). Perinatal studies show outcomes vary widely for infected women. AIDS Alet?, Oct. Centers for Disease Control. (1986). Acquired immunodeficiency syndrome (AIDS): Among blacks and Hispanics-United States. Morbidity and Mortality Weekly Repot?, 35, 655-666, Oct. 24. Centers for Disease Control. (1987). Antibody to human immunodeficiency virus in female prostitutes. Morbidity and Morraliry Weekly Repot?, Mar. 27. Centers for Disease Control. (1988). Public Access AIDS Tape (Available from the Centers for Disease Control, 1600 Clifford Road, Office of AIDS, AIDS Program, Public Service, Atlanta, GA 30333), Oct. 3. Centers for Disease Control. (1989). Public Access AlDS Data Set (Available from the Centers for Disease Control, 1600 Clifford Road, Office of AIDS, AIDS Program, Public Service, Atlanta, GA 30333), April. Citizens' Committee for Children of New York, Inc. (1987). The Invisible Emergency: Clddren and AIDS in New York. 105.East 22nd Street, New York, NY 10010. Cochran, S.D. (1988). Risky behavior and disclosure: Is it safe ifyou ask? Paper presented at the American Psychological Association, Atlanta, GA, August. Cochran. S.D. and Mavs. V.M. (19891. Women and AIDS-Related Concerns: ~ o l efor s ~ s ~ c h o l o &ink el pin^ h e Worried Well. American Psychologist. 44(31. ,, 529-535. Cochran, S.D. and Peplau, L.A. (1989). Sexual risk reducrion behaviors among young heterosevual adults. Manuscript under review. Coles, P. (1988). AlDS prevention in pregnant women in France: Cause for worry. Nature, 333, June 9. Daniels, M., Wodarksi, J.S. and Davis, K. (1987). Education for community mental hcalth practice with Blacks. Journal of Social Work Education, Winter. Dcs Jarlais, D.C., Friedman, S.R., Casrield, C., and Kott, A. (1987). AlDS and preventing initiation into intravenous (IV) drug use. Psychology and Health, 1 , 179-194. Des Jarlais, D.C., Friedman, S.R., and Strug, D. (1986). AIDS and needle\
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sharing within the IV drug use subculture. In D.S. Feldman and T. M. Johnson (eds.). The Social Dimensions of AIDS, New York: Praeger. Drucker, E. (1986). AIDS and addiction in New York City, American Journalof Dmg and Alcohol Abure, 12, 165-181. Fischl, M.A., Dickinson, G.M., Scott, G.M.,Klimas, N., Fletcher, M.A., and Parks, S.W. (1987). Evaluation of heterosexual partners, children, and household contacts of adults with AIDS, Journal of the American Medical Associa: rion, 257, 640-644. Friedland, G.H. and Klein, R.S. (1987). Medical progress: Transmission of the human immunodeficiency virus. The New England Journal of Medicine, 317(18), 1125-1135. Gentry, J.H. Women and AIDS. (1987). Paper presented at the American Psychological Association, New York, Aug. 31. Ginzburg, H.M. (1984). Intravenous drug users and the acquired immune deficiency syndrome. Public Health Reports, 99, 206-212. Goedert, J.J., Biggar, R.J., Weiss, S.H. et al. (1986). Three-year incidence of AIDS in five cohorts of HTLV-111-infected risk group members. Science, 231, 992-995. Gomberg, E.S. (1982). Historical and political perspective: Women and drug use. Journal of Social Issues, 38, 9-23. Gould, E. (1988). Reassuring news about AIDS: A doctor tells why you may not be at risk, Cosmopolitan, Jan. Graubau, J.C., Truman, B.I. and Morse. (Feb. 1988). A serioepidernic profile of persons seeking anonymous HIV testing at alternative sites in Upstate New York. New York State Journal of Medicine, 59-62. Guinan, M.E. and Hardy, A. (1987). An Epidemiology of AIDS in women in the United States, 1981 through 1986. Journal of the American Medical Association, 257(15), 2039-2042. Inciardi, J.A. (1986). The Waron Drugs: Heroin, Cocaine, Crimeand Public Policy. Palo Alto, CA: Mayfield. Hearst, N., and Hulley, S.B. (1988). Preventing the heterosexual spread of AIDS, Journal of the American Medical Association, 259(16), 2428-2432. Koonin, L.M., Ellerbrock, T.V., Atrash, H.K. el al. (1989). Pregnancy associated deaths due to AIDS in the United States, Journalof !he American Medical Association, 261, 1306-9. Landesman, S.H., Minkoff, H.L., Willoughby, A. (1989). HIV Disease in Reproductive Age Women: A Problem of the Present; Journal of the American Medical Association, 261, 1326-27. MacCallum, L.R. (1987). Perinatal studies show outcomes vary widely for infected women. AIDS Alert, Oct. MacDonald, D.I. (1986). Coolfront report: A PHS plan for the prevention and control of AlDS and the AIDS virus. Public Heahh Reports, 101, 341-348. Masters, W.H., Johnson, V.E., and Kolodny, R.C. (1988). Crisis.: Heterosexual behavior in the age of AIDS. New York: Grove Press.
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Mays, V. (1987). Women and AIDS. Paper presented at the American Psychological Association, New York, August 31. Mays, V.M., and Cochran, S.D. (1988). Issues in the perception of AIDS risk and risk reduction activities by Black and HispanicLatino women. American Psychologist, 43, 949-957. Mengies, H.D. (1986). Back to basic contraceptives, New York Times, Jan. 5. Minkoff, H.L., Nanda, D., Menez, R, et al. (1987). Follow-up of mothers and children with AIDS. Obstetrics and Gynecology, 258, 288-291. Moodley-Kunnie, T. (1989). Attitudes and perceptions of health professionals toward substance abuse disorders and substance abuse dependent individuals. International Journal of Addictions, 23(5), 469-75. New York City Commission on Human Rights. (1986). AIDS and People of Color. (52 Duane Street, New York, NY 10007) Nov. Novick, L.F., Berns, D., Stricof, R. Stevens, R., Pass, K., Wethers, J. (1989, March 24) HIV seroprevalence in newborns in New York State, JAMA, 261 (12). Piot, P. and Carael, M. (1988). Epidemiological and sociological aspects of HIV infection in developing countries. British Medical Journal, 44(1). Quinn, T.C., Glasscr, R.O., Cannon et al. (1988). Human immunodeficiency v i m infection among patients attending clinics for sexually transmitted diseases. New England Journal of Medicine, 318, 197-203. Redfield, R. (1987). Comments. In: T. Dondero (Chair), Heterosenral fransmission of the AIDS virus. Roundtable discussion conducted at the Third International Conference on AIDS, Washington, D.C., June. Robbins, C. (1989). Sex Differences in psychosocial consequences of alcohol and drug abuse, Journal of Health and Social Behavior, 30, 117-30. Rosenbaum, M. (1981). Sex roles among deviants: The woman addict. Internotional Journal of the Addictions, 16, 859-77. Rothenberg, R., Woclfel, M., Stoneburner, R.'et al. (1987). Survival with the acquired immunodeficiency syndrome. The New England Joumal of Medicine, 317(21). Sandmaier, M. (1981). The lnvisible Alcoholics, NY: McGraw Hill. Scott, G.B., Buck, B.E., Letterman, J.G.et al. (1984). Acquired Immunodeficiency Syndrome in infants, The New England Joumal of Medicine, 2, 76-81. Scott, G.B.,Fischl, M.A., Klimas, N. et al. (1985). Mothers of infants with the acquired immunodeficiency syndrome: Evidence for both symptomatic and asymptomatic carriers. Journal of the American Medical Association, 253, 363. Selwyn, P.A., Schoenbaum, E.E., Davenny, K. et al. (1985). Prospeclive study of human immunodeficiency virus infection and pregnancy outcomes in intravenous drug users, Journal of the American Medical Association, 261, 128994. Shulman, L.C.and Mantell, J.E. (1988). The AIDS crisis: A United States health care perspective, Science and Medicine, 26(10), 979-988.
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Siebert, 1. (1987). Pediatric AIDS. Paper presented at the American Psychological Association, New York. Siegal, K., Bauman, L.J., Christ, G.H. et al. (1988). Patterns.of change in sexual behavior among gay men in New York City. Archives of Serwal Behavior, 17(6), 481-497. Siegal, K. and Gibson, W.C. (1987). Barriers to the modification of sexual behavior among heterosexuals at risk for acquired immune deficiency syndrome. Soverow, S., Rosenberg, C.M. and Ferneau, E. (1972). Attitudes toward alcohol and drug addiction: Patients and staff. British Journal ofAddictionr, 67, 195-8. Staver, S. (1987). Minority women grappling with growing AIDS problem. American Medical News. Nov. Sussman, M.B. (1966). Editor's Introduction, in H.M.Trice (Ed.). Alcol~olistnin America. New York: McGraw Hill. Wofsy, C.B. (1987). Human immunodeficiency virus infection in women. Journal of the American Medical Association, 257(15). Wolcott, D.C., Fawzy, F.T., and Pasnau, R.O.(1985). Acquired Immune Deficiency Syndrome (AIDS) and Consultation-liaison psychiatry, General Hospital Psychiatry, 286-292.
Women & Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wwah20
Double Victims: Poor Women and AIDS a
Vivian T. Shayne PhD & Barbara J. Kaplan PhD
b
a
Director, The Social Science Research Laboratory, American University, Washington, DC b
Associate Professor, Department of Psychology, State University of New York, College at Fredonia Published online: 05 Nov 2010.
To cite this article: Vivian T. Shayne PhD & Barbara J. Kaplan PhD (1991) Double Victims: Poor Women and AIDS, Women & Health, 17:1, 21-37, DOI: 10.1300/J013v17n01_02 To link to this article: http://dx.doi.org/10.1300/J013v17n01_02
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Double victims: Poor Women and AIDS
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Vivian T. Shayne, P h D Barbara J. Kaplan, P h D
ABSTRACT. Women constitute the fastest growing group of people with AIDS; a disproportionate number of poor minority women are affected. Educat~onand prevention campaigns have not been directed at this population. Though intravenous drug users have been identified as "at risk," many American women have been identified as HIV positive only after giving birth to a child who develops AIDS. Combating AIDS in women offers a formidable challenge to social service and public health officials because it mandates consideration of intravenous drug abuse, hieh rates of unwanted and teenage pregnancies, poverty, discriminat~onand inadequate education. Currently, women constitute 9% of all AIDS cases (Centers for Disease Control [CDC], 1990). At this rate over 20,000 would be diagnosed with AIDS by 1991 (Cochran and Mays, 1988; MacDonald, 1986). Although many are alarmed by the increase of AIDS among women, the danger of AIDS to the heterosexual community constitutes a controversial subject. On the one hand, conclusions in the Masters, Johnson and Kolodny (1988) study are viewed as overly Vivian T. Shayne is Director, The Social Science Research Laboratory, American University, Washington, DC. Barbara J. Kaplan is Associate Professor, Department of Psychology, State University of New York, College at Fredonia, Fredonia, NY. Reauests for remints should be addressed to Dr. Vivian T. Shavne. Director Social 'Science ~eiearchLab, The American University, 4400 ~assach;setts Avenue, N.W., Washington, DC 20016-8019. Women & Health, Vol. 17(1) 1991 O 1991 by The Haworth Press, Inc. All rights reserved.
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WOMEN & HEALTH
alarming. At the same time, an article in Cosmopolitan (Could, 1988) reassured anxious women that they are not at risk as long as they engage in "ordinary sexual intercourse," stating that even if exposed to an infected man, women are not vulnerable as long as they do not engage in anal sex, or have an open lesion in the vagina. With such conflicting information available, it is not surprising that women constitute the fastest growing group of people with AIDS (Guinan and Hardy, 1987). Although seropositive rates for some high risk populations (like white, middle class, adult gay men) appear to be on the decline, the rate for women remains unchanged (CDC, 1987). In New York, AIDS is now the leading killer of women aged 24 to 34 (New York City Commission on Human Rights, 1986). EPIDEMIOLOGY
Most of the AIDS diagnoses reported are for women between 30 and 34 across all ethnic groups. Although the disease is generally not associated with the elderly, 10%of white women diagnosed as having AIDS are aged 65 or older (CDC, 1990). Most of these elderly women probably acquired their infection through transfusion with contaminated blood products. This is one source of viral transmission that has virtually been eliminated as a causal factor for HIV infection. About seventy-three percent (73%) of the women who have received an AIDS diagnosis are women of color. More specifically, fifty-one percent (51%) of women affected are Black and 15.6%are Hispanic; though Black women account for only about 14.7% of this country's female population and Hispanic women account for only 7%. In New York City the proportion of Hispanic women affected is much higher (32%).The cumulative incidence of Black and Hispanic women who satisfy the CDC surveillance case definition for AIDS is ten times that of White women (CDC, 1986). However, in this context, it is important to note that estimates of prevalence for nonethnic women have been more difficult to gauge because so little is known about the prevalence of HIV outside established high risk groups (MacDonald, 1986). Unfortunately, many minority heterosexuals were not adequately
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Vivian
Z Shayne and Barbara J.
Kapfan
2.3
alerted, and were unaware of their risk for AIDS until very recently. In contrast to the White population, AIDS transmission among Blacks and Hispanics poses more danger to these heterosexual populations (Eakeman et al., 1986; CDC, 1986). However, targeting Black and Hispanic women at risk may have been tempered by a need to avoid stigmatizing these groups (Allen et al., 1987). At least initially, national magazines and television advertisements featured cover photos of White teenagers, women and heterosexual couples (Daniels et al., 1987). Among women with AIDS, about 51% are intravenous drug users. IV drug use consistently emerges as the leading cause of AIDS among women of all ethnic backgrounds, except for Asians, who appear most likely to contract the disease through transfusion (CDC, 1989). Table 1 presents our knowledge of the source of HIV-infection for women as of April 1989 (CDC, 1989). Intravenous drug users are susceptible to many infections because needle-sharing practices result in contaminated needles and water. Also, substances used to "cut" heroin are good agents for bacterial and viral growth. In addition, many intravenous drug users, having fewer social and economic resources, often delay medical treatment (Shulman and Mantell, 1989). For individuals who are poorly educated, especially with regard to health and medical knowledge, fear of AIDS is just one more problem to cope with along with day-to-day problems of poverty and survival. In this context it is important to note that many people, who suspect they have been exposed to HIV infection, resort to excessive use of alcohol or recreational drugs (Wolcott, Fawzy and Fasnau, 1985). Such tendencies are likely to be exacerbated for addicted IV drug users. An estimated 30 to 50% of female intravenous drug users have engaged in prostitution (Drucker, 1986; Ginzburg, 1984). Among prostitutes - at least on the West Coast - 1V drug use is considcred to be the primary cause of AIDS (CDC, 1987). Drug-abusing women were especially likely to transmit infection to their sexual partners and their unborn children, since drug users have been generally disinclined to use contraception or engage in safe sex. While addicts have curtailed their needle-sharing bchavior, in reality this means becoming more selective in choosing a needle-sharing partner. Generally, most addicts have experienced strong social pres-
WOMEN & HEALTH
24
TABLE 1 . Reported sources of female exposure to HIV infection Exposure catesorv
-(%)
Hemophilia Coagulation Disorder
Himanic(%)
Asian(%) -(%I
24(1)
782 (27)
Heterosexual
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-(%)
Contact Sex with IV Drug User 402 Sex vith Bisexual Male
183
Sex with Hemophiliac
44
Born in Pattern I1 Country
1
Sex with . other born in Pattern I1 country
1
Sex with Transfusion Recipient
47
Sex with person with HIV infection risk not specified 104 Recipient of Blood Transfusion
709 (25)
Other
200(7)
TOTAL
2,890(100) 5,488(100) 2,119(100)
61(100)
Numbers derived from Centers for Disease Control, January 1990.
25(100)
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T. Shayne and Barbara J. Kaplan
25
sure to continue sharing needles. The "shooting partner" may be the most significant social relation in the drug use sub-culture. Often such partners are also sexual partners (Des Jarlais et al., 1987). .Only recently has the threat of AIDS provided the impetus to' change these norms. Although some authorities consider them recalcitrant to treatment, the proportion of intravenous drug-using women with AIDS actually declined in the 1983-1986 interval, while the proportion of AIDS for male intravenous drug users and homosexual or bisexual males remained stable (Guinan and Hardy, 1987). This is all the more remarkable since treatment facilities are used tocapacity and maintain long waiting lists. However, while drug-abusingwomen account for substantial numbers of AIDS cases among women, the proportion of women with AIDS through heterosexual contact has also been steadily increasing. It is still increasing, up from 12% in 1982 to 20% in 1986 (Guinan and Hardy, 1987). Currently, about 30% of women with AIDS have been infected through heterosexual sex in contrast to 2% heterosexual contact for men (Cochran and Mays, 1989, CDC, 1990). This is probably happening because more men are infected than women, so heterosexual women are more likely to encounter an infected male partner, while men are less likely to encounter an infected female partner. Additionally, HIV may be transmitted more efficiently from men to women than the other way around. Many women are unaware of their exposure to a partner who is an IV' drug user or bisexual (Guinan and Hardy, 1987). IV drug users are the principle transmitters of AIDS to the heterosexual and newborn populations (Des Jarlais et al., 1986; 1987). In almost 13%of the AIDS cases among women reported to the Centers for Disease Control, the individual was exposed to more than one risk factor. In such cases CDC tries to identify a primary risk factor, although it is not possible to determine with any certainty which factor was the actual source of infection (CDC, 1989; 1990). The descriptive statistics on women who have contracted AIDS may differ significantly from the one currently comprised of asymptomatic HIV-infected women. There are also indications that wom-
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WOMEN & HEALTH
en are more susceptible to AIDS Related Complex (ARC) than men, so that the actual prevalence of AIDS infection understates the magnitude of the health problems that women face (Novick, Berns et al., 1989).
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PREVENTION AND THE SOCIAL CONTEXT
Many American women have been identified HIV positive only after giving birth to a child who exhibits symptoms of AIDS much sooner and more profoundly than they themselves do. This pattern has also been observed in France, where in a recent study of 274,647 women, two births or abortions per day involved HIV positive women (Coles, 1988). One-third of these infected women had no idea they were at risk. In surveys of sexual behavior among heterosexuals at risk for AIDS, many individuals appeared disinclined or even resistant to changing sexual behaviors (Siegal et al., 1988; Siegal and Gibson, 1987). Denial occurs frequently in an effort to avert the anxiety which would result from a more realistic appraisal of vulnerability. Others felt they were not at risk because they did not engage in anal sex or because they were selective in choosing sex partners who were not affiliated with known risk groups. An estimated 120,000 current or former IV drug using males live with women in heterosexual relationships in New York City alone (Staver, 1987). The risk reduction factors that influence men and women differ. Cochran and Peplau (1989) found that women appear to be influenced more by past experience such as treatment for a sexually transmitted disease, while men seem to be influenced by more internalized factors such as level of homophobia or perception of being at risk. Few of the women most vulnerable to AIDS take the necessary precautions to prevent infection (Cochran, 1988; Mays and Cochran, 1988). According to Mays (1987; Mays and Cochran, 1988), many women are fearful that the demand for safe sex will drive away a man. They have been socialized to feel that if they do not have a man in their life, they have no life. It is not enough to inform women about the importance of using condoms to avoid contracting the AIDS virus, women need to learn how to discuss safe sex with
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their partners. Although women purchase 40% of all condoms sold (Mengies, 1986); many women still find it difficult to initiate condom use in safe sex oractice. Women are much less likely than men to question their husbands and lovers about their sexual or drug use habits or preference, yet .this is the advice contained in popular writing on sex for singles (Cochran, 1988). And, of course, there is no guarantee that sexual oartners will tell the truth. Educating poor women at risk carries with it formidable challenges. Safe sex is an economic compromise for many poor women who rely on sex as a source of employment, as a means to establish ownership or proprietary rights in relationships, or as a means of simply getting tangible supports, generally short in supply (Mays, 1987). Risk reduction appears especially difficult with intimate sexual partners. In studies of this population, prostitutes were more vulnerable to infection from sexual encounters with boyfriends, or through intravenous drug use, than from their sex work activities (Mays, 1987). In fact, the impact of AIDS prevention information directed at the general public has proven counter-productive for many groups of women who only feel more frightened, isolated and powerless to change their circumstances. Armstrong (1988) suggests that in many cultures the women who suggest using condoms for contraception are degraded, considered "loose," or even beaten; and these reactions are likely to be exacerbated when condom use to supplement contraception is advocated. Expressed concern over AIDS is often considered indicative of a lack of trust and often serves only to provide grounds for hostile suspicions. Even professional journals have featured articles that have been criticized for possibly misleading inferences. In one recent medical publication, choice of sexual partner was singled out as the most important AIDS risk factor-by several orders of magnitude over other risk factors (including failure to practice safe sex with a condom; Hearst and Hulley, 1988). The authors conceded that it is not always possible to know a partner well enough to be sure that the partner is not at risk for AIDS. However, helping professionals who are most inclined to make prescriptions based on these findings, should not forget that many women at risk really know compara-
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WOMEN & HL4LTH
tively little about their sexual partner's behavior, and are often discouraged from making inquiries for fear of potentially hostile or abusive reactions from their partners. Women who have multiple sexual partners need to know that simply reducing the number of sexual partners they have does not eliminate risk (Goedert et al., 1986). The HIV virus has been acquired through a single exposure (Friedland and Klein, 1987). Risk also appears to vary substantially as a function of geographic locale (Friedland and Klein, 1987). Although the information available on the relation between specific heterosexual practices and seropositivity is inconclusive, anal intercourse is clearly not required (Fischl et al., 1987), Often, by the time women find out about their vulnerability to AIDS, they are themselves very sick, or have a baby who is very sick, or both. Women infected with HIV are the major source of infection of infants with AIDS. Trends in AIDS in women will determine future trends for pediatric cases. The number of children with AIDS in New York City is doubling every 8 to 9 months. Right now the outlook is fairly dismal. Experts project a five- to ten-fold increase in pediatric AIDS by 1990 (American Medical News, 1987). Anonymous involuntary testing of infants in New York City led to the discovery that 61 out of every 1000 babies born was infected. As many as 1.5% of all pregnant women in New York City may be HIV positive. Many of these women may be described as "second generation" cases who acq~iiredthe infection from intravenous drug using sexual partners (Redfield, 1987). A third generation will acquire the disease through sexual contact with such second gencration cases. Thus, the spread of the disease is likely to be more difficult to track as the number of infected individuals grows: the risk categories are likely to broaden and become more diffuse (Cochran and Mays, 1989). As with men, women with AIDS may be subject to abandonment and discrimination by friends and family (Siebert, 1987). They have lost friends and family, jobs, apartments and rapidly depleted limited resources. In this context, it is important to remember that poor minority women generally suffer from inadequate quality or inaccessible health care. Poor women with AIDS often experience a profound sense of isolation and are desperate for support from fam-
Vivian T. Shayne and Barbara I. Kaplan
29
ily, friends and community. Means of sexual expression are limited, while disclosure of health status often exacerbates this isolation.
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DETECTION AND THE COURSE OF ILLNESS
Historically, diagnosis and treatment of HIV infection in women has been problematic because women are typically regarded as a low-risk population (Gentry, 1987). Comparatively few AIDS prevention and service programs were created to meet the special needs of women. Women with HIV infection did not have an organized network of support and service advocacy. Much of the literature and many programs were almost pathetically irrelevant to the realities confronted by the poor, minority women at greatest risk (Staver, 1987). It was difficult for women to find primary care physicians, obstetricians, gynecologists, sex counselors, abortion counselors, and other health-related personnel to provide needed services (Gentry, 1987; Wofsy, 1987). About 73% of mothers with children who have AIDS are recipients of public assistance. The mean income of the fcw employed mothers is about $10,000 per year. Even comparatively stable families require substantial assistance to care for a child who has AIDS. Pediatric AIDS is extremely costly ($86,000 per year, compared to $55,000 per adult case per year). In fact, a total of $3.3 million was expended on care provided to 37 children with AlDS who were hospitalized in a Harlem hospital (Citizens Committee for Childrcn of New York, 1987). For both women and children, AlDS is likely to express'itself inpneumocystis cariniipneumonia (PCP) (Rothenberg et al., 1987). PCP has been more costly to treat, more devastating, and the onset of morbidity is swift, particularly for black women (Rothenberg et al., 1987). A substantial proportion of the PCP diagnoses among women across all ethnic groups involve older women. Women who are 3039 years of age account for about one-fourth of such diagnoses. In addition, women aged 30-39 account for about 43% of all wasting diagnoses, and 44% of all esophageal candidiasis cases reported occur for women in the same age bracket (CDC, 1989). The advent of AIDS has forced health care practitioners to con-
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WOMEN & HEALTH
front a series of entirely new problems. For example, there is some evidence suggesting that pregnancy may accelerate the progression of disease for HIV infected women (Landesman et al., 1989; Selwyn et a]., 1989). Subsequent to the birth of the first child, about one-third of HIV-infected women studied in Miami came down with AIDS (Scott et al., 1984, 1985). In one study, pregnancy associated AIDS deaths occurred an average of 113 days after diagnosis (Koonin et al., 1989). Immune system functioning is naturally suppressed during pregnancy. Moreover, pregnancy can mask symptoms of HIV infection. Fatigue, anorexia, and weight loss, which are early nonspecific symptoms of AIDS, are also common in early pregnancy (Minkoff et al., 1987). This is particularly problematic when women are not receiving medical care, or when they are receiving care but it is not administered by a practitioner expert in distinguishing the symptoms of pregnancy from those of ARC and AIDS (Koonin et al., 1989). Early evaluation of even minimal symptoms may be crucial to the health of pregnant HIV infected women and their offspring. By and large, pregnant women with AIDS are identified by asking them if they belong to a high-risk group or engage in high risk behaviors with individuals who belong to a risk group. However, this identifies.only a small proportion of cases. Various reasons for this procedure's lack of accuracy have been advanced. Some women, particularly addicts or prostitutes suspicious of institutions, are reluctant to admit to illegal or socially unacceptable behavior. Others may be unaware that their partners were infected. In one study of HIV infected women attending a clinic for sexually transmitted diseases, half did not acknowledge any high risk behavior (Quinn et al., 1988). This was especially pronounced for seropositive women under 25 years old. In areas like inner-city neighborhoods with significant HIV infection rates, broader counseling and testing programs may be needed to effectively contain the escalating rate of infection. Family planning decisions of HIV infected women constitute another area of concern. Of course, many women are unable to make informed decisions because they are unaware of pregnancy until it is too late, or because they are simply unaware of their HIV status.
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However, the provision of adequate counseling for women who find themselves in this circumstance~is.a'controversialundertaking. For many women, having a child is a desperate attempt to combat death and to leave a living legacy. The birth of a child may serve as a bond to a continuing relationship with a man (Mays, 1987). Moreover, pregnancy for addicted women often provides a positive incentive to change. For many, it is the first time they feel good about themselves. In'fact, many IV drug using women appear healthier during pregnancy because they have stopped using drugs (MacCallum, 1987). Although, many HIV positive women who do get sick during pregnancy miscarry or decide to have an abortion (Calvelli, 1987). Pregnant womcn with AIDS appear to suffer many obstetric complications -especially preterm delivery (Koonin et al., 1989). Not surprisingly, many of the women choose not to terminate pregnancy (Staver, 1987). Knowledge of HIV infection status does not appear to influence women's reproductive decisionmaking (Selwyn et al., 1989). For some, strong social prescriptions to have children dictate their course of action (Cochran and Mays, 1989; Wofsy, 1987). Yet, anywhere between 20-65% of these childrcn will acquire AIDS and will subsequently die (Selwyn et al., 1989). Both minorities and IV drug users have refrained from visiting test sites (Grabau, Truman, and Morse, 1988). Even in areas with high rates of AIDS among these groups, their numbers constitute a comparatively small proportion of clinic attenders (14-22%) at such facilities. This suggests a great need for more educational efforts and better mechanisms for clinic referrals. Addicted women also appear to be stigmatized more than their male counterparts (Rosenbaum, 1981; Sandmaier, 1981). When addiction appears to impede a woman's fulfillment of her nurturant role obligations, such biases may be exacerbated (Gomberg, 1982). The association of female addiction to prostitution is also a deterrent to sympathy (Inciardi, 1986; Rosenbaum, 1981). Female addicts are less likely to receive parental support than male counterparts, suggesting their stigmatization may be both more enduring and alienating (Rosenbaum, 1981). Perhaps because they are more easily stigmatized, women are more likely to conceal substance abuse (Robbins, 1989). Overall, substance abuse among women appears more strongly related to psychological problems like de-
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WOMEN & HEALTH
pression, distrust, and feeling upset, while men appear more socially impaired (Robbins, 1989). Men's addiction is likely to be detected because of problems which are manifested in school or on the job, while driving, with finances or the law, or when they seek emergency medical help. This type of societal response to drug use is especially problematic in the context of an AIDS crisis because helping professions do appear to convey, albeit in a subtle manner, strong prejudices against substance abusers (Moodley-Kunnie, 1989). For example, nurses may disapprove of doctors spending too much time with substance abuse patients. Abusers may even terminate treatment as a result of such expressive overtures (Soverow, et al., 1972). Treatment failure in this population has been attributed to staff rejection rather than abusers' lack of motivation-which constitutes a common explanation for the recalcitrancy of substance abusers (Sussman, 1966). Substance abusers who experience stigmatization or scapegoating may also react by accepting this lower status or role, and by seeking comfort from others with similar pathologies.
PROGRAMS, RESOURCES AND THE FUTURE People with AIDS have been isolated or disconnected from friends and family. They often become recipients of blame and shame simply for having contracted the disease. As a result, many of these individuals resort to denial which in turn can result in avoidance of medical care or involvement in unsafe sex. The need to empower persons with AIDS has become a recurrent theme among advocates who provide support and counsel to this population. In addition to being vulnerable to this disease, AIDS is of special concern to the many women who will invariably become caretakers for others who may be afflicted with AIDS. The Women and AIDS Resource Network (WARN) was organized to address the specific needs of women and children affected by AIDS. It is dedicated to the provision of services and education for women and children affected by AIDS. Increasingly, more outreach programs are being developed to
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3.1
reach individuals at risk, many of whom are not accessible through conventional programs. Women at risk are in need of special reassurances to counter a fatalistic perspective. Women at risk have been successful in the exercise of preventive measures. At least one large cohort of prostitutes who used condoms and did not share needles had a low level of HIV infection (Alexander, 1987). In addition, consideration must be given to involving sexual partners of women targeted for educational intervention because women may be reluctant or even unable in some cases to consider alternative sexual practices without enlisting cooperation of their partner. Combating AIDS in women offers a formidable challenge to social service and public health officials because it mandates consideration of IV drug abuse, high rates of unwanted and teenage pregnancies, poverty, discrimination against people of color and lack of education. Educational programs aimed at reducing risk for AIDS need to be sensitive to socio-cultural differences when targeting minority women. To a large extent, this entails a sensitivity to very different conceptions of risk. Addicts already risk their lives every time they inject drugs. Prostitutes are also well aware of life-threatening risks as part of their activities. Living in urban ghettos entails innumerable risks; AIDS is just one more risk. Because the communities hardest hit are often the most impovcrished they typically lack resources needed to care for this complex syndrome. In many urban communities, the funds are simply not available to cover the costs of prevention and treatment. Although the number of women with AIDS is growing, their problems continue to be neglected. They must compete for the attention of agencies already overburdened by the problems of other poor women-victims of domestic violence, pregnant teens, cocaine addicts, runaways and adolescent prostitutes, women who need housing, medical assistance, child care and jobs. The lack of interagency cooperation, material resources and simple awareness of the reality confronted by these women continues. The track record of human service agencies in resolving such problems is poor. The problems of women with AIDS are monumental. Meanwhile, it is all too apparent that the virus is spreading, and the dangers it poses affect us all.
WOMEN & HEALTH
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