Excerpts from Sacrificing Our Selves for Love
Chapter 10: The Costs of Physical Love
Problems with Treatment
We cannot take advantage of medical care without medical facilities that are available and accessible to us. Unfortunately, most government money allotted to treatment of sex-related diseases goes to public clinics that primarily serve men, not women and adolescents. And these few public clinics are overextended by the increasing spread of sexually transmitted diseases. The few family planning and community-based clinics that do provide comprehensive sexually transmissible disease screening generally do not treat an infected woman's partners. Simultaneously, money and resources have shrunk, so that clinics have had to reduce the numbers of people they see each day and even turn some away.
Although Congress has authorized programs to increase outreach to and screening of women, it has not appropriated any money except for a few small model programs. Funded programs show that outreach can be effective. In the northwest states, clients of public clinics had about 50 percent less chlamydia after the clinics instituted a program using a combination of systematic screening, training of family planning and sex-related disease professionals, and treatment.103
In addition, lack of drug treatment programs also hinders the presentation and treatment of sexually transmissible diseases, especially AIDS. Drug abuse treatment programs are all currently in need of funding and increased availability, and programs for pregnant women are almost non-existent. American doctors have believed that stopping drugs during pregnancy could harm the fetus, but a program in Scotland has demonstrated that this is not true, and that pregnant women are often highly motivated to stop drug use, making these pro- grams more likely to be successful.104 Drug treatment for women, however, must take into account that women are usually the primary caregivers for children, elderly, and disabled family members. Care for their dependents must be provided, possibly at the drug treatment site or nearby.
If drug users were not punished or discriminated against they would be less likely to go underground, where they are much harder to reach for treatment and continue to remain contagious or to engage in risky behaviors. Also, programs that allow drug users to exchange used needles for new ones are vital for reducing the spread of HIV. One-third of all HIV cases are transmitted by dirty needles, which spread the disease to the drug users, their sexual partners, and the babies born to them.
Money, Education, and Access to Medical Care
Lack of income and a poor education hinder access to medical care. Poor medical care or none at all magnifies all of the problems women have in avoiding sex-related diseases and getting tests and treatment. Whatever our skin color or ethnic background, if we lack information and money, we are more vulnerable to the effects of sexually transmissible diseases.
Through poverty, minority status, or drug abuse a woman can find herself on the fringes of society. The more "marginal" categories a woman falls into, the less likely she is to get medical care.105 Social neglect is a frequently overlooked contributor to the different rates of sex-related diseases between communities. The limited availability and poor quality of medical services to those of us in poor communities further increase our vulnerability to sex-related diseases. The United States has a long history of providing inadequate services to prevent and treat all curable sexually transmissible diseases among poor people, most recently contributing to HIV infection. For example, policy makers have simply accepted higher rates of sexually transmitted diseases among African-Americans (who tend, in this country, to be poor) as the norm, thus denying their responsibility to help lower the disease rates, and implicitly blaming those infected for their illnesses.106
Those of us who have low incomes are unable to afford medical insurance unless we qualify for Medicaid or have our insurance paid by an employer.107 Even if we can afford medical insurance for ourselves and our children, we may be denied coverage for HIV or AIDS. Probably one-quarter of all people with AIDS have no medical in- surance.108
Furthermore, poor people are disproportionately women of color, who often have a harder time getting medical care because of transportation problems, childcare needs, and long waits at a clinic. The time it takes to get medical care takes time away from other needs, such as food, shelter, personal safety, and caretaking, so seeking medical care becomes a priority only in a health crisis.
And those of us who are socially disadvantaged are more likely to be wary of institutions such as hospitals, and of the professionals associated with them. African-American women in particular may be suspicious of government motives behind offers of medical care because in the past the Public Health Service has been known to lie to African-Americans about the services it was delivering.109
I hate going to the doctor, especially the while male doctors. They make me feet stupid. The foreign doctors aren't so bad. The doctors talk to me very loud because they think then I'll understand. But when I get sent for tests they never tell me why. They never explain anything.
-Woman from Puerto Rico who speaks accented English
Lack of access to appropriate sex education and to medical care are two possible reasons why poor women have higher rates of sexually transmissible diseases. Not surprisingly, statistics suggest that African- American women, more likely to be poor, have a higher risk of developing PID than white women.110 This is also true for HIV/ AIDS.111
Data show that women who have medical insurance, a higher level of education, and are employed are more likely to have Pap tests, demonstrating a clear relationship among money, social standing, and early detection of cervical disease. Medicare did not begin covering the Pap test until 1990, so that many of us were unable to afford the test until then.
How Research Has Skewed Our Understanding of Sex-Related Diseases
In research on diseases related to sex, women are often seen as reservoirs or vectors of diseases that can infect men. In other words, according to this bias, we are important as transmitters of diseases to men and to fetuses, but the diseases' effects on us are not relevant. The implication that we are to blame for infecting others leads to the study of pregnant women, for example, as infectors of their children, without equal study of the impact of the disease on the women themselves. For example, in one government-funded study, women were given AZT, a drug that seems to slow down the replication of HIV, in their second and third trimesters of pregnancy to see if the drug would affect the rate of transmission of HIV to the fetus. Once her baby was born, however, each study participant was denied further free AZT treatment.
An inordinate amount of the research on sexually transmissible diseases in women has been done on commercial sex workers, who are assumed to infect men who then might bring diseases back to their communities. The historical roots of this research stem from early twentieth century attempts to lock up sex workers with sex-related diseases in order to protect middle-class men and their families. Often investigators have trouble imagining that men who hire sex workers may be more likely to give sex-related diseases to the sex workers than the other way around. Researchers have tended to see sex workers as reservoirs of disease that they inflict upon unsuspecting customers and their families. In fact, because women are more susceptible to sexually transmissible diseases than men, commercial sex workers are more likely to catch a disease from their clients than the other way around. Sex workers are also likely to protect themselves in business transactions whenever possible, at the same time protecting their customers. 112
When the media report on the results of research that implicitly blames women for infecting others, our own perceptions of sex-related diseases may begin to include assumptions of blame. This faulty thinking is harmful to our self-esteem and discourages us from standing up for ourselves.
Our health has repeatedly been compromised because research has not studied the questions most useful to women. For example, the effects of the menstrual cycle on sexually transmissible diseases are for the most part unknown and unstudied. No studies exist on whether tampon use increases vulnerability to a sex-related disease. No one knows exactly how PID inflammations begin, how our tissues are injured and scarred, or what treatment is best to prevent tubal damage. During the 1980s, a number of researchers who applied for federal money to study the course of HIV and AIDS in women were repeatedly turned down. At the same time, funders refused to provide money for studies that would either enroll women in clinical trials on HIV treatments or provide women with gynecological exams. Questions about women's early HIV symptoms were not asked, and no data to document differences from men's symptoms were collected.
In addition, bias can lead researchers to incorrect conclusions. For example, preconceived notions of the sexual practices of African-American girls and women determine what is considered useful for research. Research on the sex lives of African-American women in the United States has concentrated on the sexual activity and contraceptive use of teenage girls, with little research on how sexual practices change over a lifetime and how women negotiate sexual relationships under varying circumstances. Similarly, preconceived notions have led to official "exposure categories" for HIV/AIDS. Each woman with AIDS is assigned to one category, even though she could have been infected in a number of ways. The categories are ranked based on ideas about the relative likelihood of acquiring the disease in that way. Thus, if a woman uses injection drugs and has sex with either a man or a woman, she is placed in the injection-drug category. As a result, the number of women infected through sex with men or women may be underestimated through the assumption that injection drug use is always more likely to transmit the disease than heterosexual or lesbian sex. Men, however, are placed in a category that allows for more than one possible way of exposure, a more realistic and useful approach.
We need more community, religious, and national leaders who will speak out to create an atmosphere supportive of our efforts to protect ourselves and stop the spread of sex-related diseases. We also need to recognize social inequalities in our own lives and join together with other women to explore ways to change our situations and to support each other in these changes.
We can make ourselves heard at agencies that set public health policies and research priorities on sexually transmissible diseases by writing or calling:
- The Centers for Disease Control and Prevention: (1) to increase the number of HIV exposure categories for women, including multiple exposure such as sex with a man and drug injection and categories that include sex with a woman; (2) to change the definition of AIDS to include more gynecological symptoms. (See "Resources" for address and telephone numbers.)
- Congressional representatives to increase funding for: (1) drug-abuse treatment for women, especially pregnant women (treatment sites should have provision for children or other dependents); (2) a more active program under the Public Health Service to prevent and treat sexually transmissible diseases. We can also urge them to support greater research on methods to control the spread of such diseases, especially methods under women's control. (Call the local chapter of the League of Women Voters to find out who your representatives are and how to reach them.)
- Director of the National Institutes of Health: to urge more funding of research on birth control methods that protect against diseases, as well as disease-prevention methods that allow conception to take place
- Private agencies that develop and promote methods of birth control, such as the International Planned Parenthood Federation and the Population Council: to urge them to emphasize birth control methods that also control sexually transmissible diseases
- Local school boards: to support ac- curate, explicit sex education in schools. Sex education should be mandatory for each new generation of children as they become old enough to be sexually active.
We can also:
- Support activist groups by working with them and by donating money if possible. (Your local health department may be able to give you the names of any groups in your area. For HIV/AIDS groups the National AIDS Information Clearinghouse [see "Resources"] can also help. Existing groups focus on HIV/AIDS. Talk with friends about starting a group to increase attention on other sexually transmissible diseases.
- Write or call television stations and production companies that make television dramas and situation comedies, as well as advertisers who sponsor such shows, to encourage them to include explicit messages on safer sex. (People who oppose mentioning birth control and disease prevention are already pressuring sponsors to withdraw from shows containing such messages.)
- Join other concerned women and men to help promote, make, and distribute videotapes geared to different audiences to be shown in schools, community health centers, on television, and to be made available in video rental stores. Subjects could include how sexually transmissible diseases spread, how to use female and male condoms and other barrier methods, and self-assertive behavior for women. Also call a local cable-TV network about guidelines on filming public service announcements
- Join projects that use innovative and creative ways to teach safer sex. Some examples are street theater projects; education projects that include going to clinic waiting rooms, to offer information; and organizing safer-sex-information parties in homes. Where no such project exists, organize one. (See "Resources" for ideas.)
- Support social programs that indirectly reduce sex-related diseases by enabling low-income people to focus on longer-term health needs rather than immediate survival. Such programs include low-income housing and medical insurance for everyone.
- Organize politically to increase our power to command government resources and change discriminatory laws.
However, we do not have to join a group or be politically active to make an impact. We can simply talk about sexually transmissible diseases and safer sex with family, friends, coworkers, and other people in our day-to-day lives. The more we all discuss information and issues, the less embarrassing and "unmentionable" these topics become, and the more comfortable we will be with self-assertion for our own health's sake.
End of Chapter
1. Jean Baker Miller, Toward a New Psychology of Women (Boston: Beacon Press, 1976), p. 83.
2. Ibid, p. 107.
3. Mary Guinan, M.D., personal communication, 25 September 1992.
4. Modified from exercises developed by Denise Ribble. See one version in Cynthia Chris, "Transmission Issues for Women," in ACT UP/NY Women and AIDS Book Group, Women, AIDS, and Activism (Boston: South End Press, 1990), p. 17.
5. Teri Randall, New Tools Ready for Chlamydia Diagnosis, Treatment, But Teens Need Education Most, Journal of the American Medical Association, 269 (no. 21, June 2, 1993):2718.
6. Nancy Padian et al., Female-to-Male Transmission of Human Immunodeficiency Virus, Journal of the American Medical Association 266 (no. 1, Sept. 25,1991):1665.
60. Routine Screen Misses Many HIV-Infected Women, AIDS Clinical Care 3 (no. 5, 1991):39. p.40
61. Tedd Ellerbrock et al., Heterosexually Transmitted Human Immunodeficiency Virus Infection among Pregnant Women in a Rural Florida Community, New England Journal of Medicine 327 (no. 24, Dec. 10, 1992):1704.
62. Cobb. I Am the Future, quoting Karen Clifford.
63. "Sex in the 90s: Some Findings of the Janus Report," Boston Globe, 23 February 1993.
64. "Study Finds Many Heterosexuals Are Ignoring Serious Risks of AIDS," New York Times, 13 November 1992.
65. Teri Randall, "New Tools Ready," Journal of the American Medical Association 269 (no. 21, June 2,1993): 2716 and 2718.
66. Patricia Donovan, Testing Positive: Sexually Transmitted Disease and the Public Health Response (New York: Alan Guttmacher Institute, 1993), p. 9.
67. A. Eugene Washington, Willard Cates, Jr., and Judith N. Wasserheit, "Preventing Pelvic Inflammatory Disease," Journal of the American Medical Association 266 (no. 18, Nov. 13,1991):2575-2576.
68. A. Eugene Washington et al., "Assessing Risk for Pelvic Inflammatory Disease and Its Sequelae," Journal of the American Medical Association 266 (no. 18, Nov. 13, 1991): 2583.
69. Elias and Heise, "The Development of Microbicides," p. 63.
70. Ibid., p. 60.
71. Patty Doten, "Her Cheating Heart," Boston Globe, 14 July 1992.
72. Family Planning Perspectives 22 (no. 2, March/April 1990): 90.
73. Felicity Barringer, "Rate of Marriage Continues Decline," New York Times, 17 July 1992.
74. Editorial, "Trends in Sexual Behavior and the HIV Pandemic," American Journal of Public Health 82, (no. 11, November 1992): 1460.
75. Gina Kolata, "Panel Recommends Adding Vitamin to Food to Prevent Birth Defect," New York Times, 25 November 1992.
76. Charles C. J. Carpenter et al., "HIV Infection in North American Women: Experience with 200 Cases and a Review of the Literature," Medicine 70 (no. 5, 1991): 307-325.
77. Laura Rodrigues, "Heterosexual Transmission of HIV," Journal of the American Medical Association 269 (no. 7, Feb. 17, 1993): 870.
78. Gena Corea, The Hidden Epidemic: The Story of Women and AIDS (New York: HarperCollins, 1992), p. 86.
79. Randall, "New Tools," p. 2718.
80. Felicity Barringer, "I in 5 in U.S. Have Sexually Caused Viral Disease," New York Times, I April 1993.
81. Susan Cochran and Vickie Mays, "Sex, Lies, and HIV," New England Journal of Medicine 322 (no. I 1, March 15,1990): 774.
82. Stamm and Holmes, "Chlamydia," p.182
83. Cates and Wasserheit, "Genital," p.1773
84. "Sex in the 90s."
85. Editorial, "Stop Meddling in AIDS Education," New York Times, 1 June 1992.
86. "Teenage Sex: Despite Aids, Many Take Risks," Medical Abstracts Newsletter, September 1992.
87. Jack Morin, Anal Pleasure and Health, 2 ed. (Burlingame, CA: Yes Press, 1986), p. 9.
88. D. M. Upchurch et al., "Behavioral Contributions to Acquisition and Transmission of Neisseria gonorrhoeae," Journal of lnfectious Diseases 161 (no. 5, May 1990): 938-941.
89. J. Malcolm Pearce, "Pelvic Inflammatory Disease," British Medical Journal 300 (no. 28, April 1990):1091.
90. Washington, Cates, and Wasserbeit, "Preventing," p. 2-577.
93. Marsha Goldsmith, "'Invisible' Epidemic Now Becoming Visible as HIV/AIDS Pandemic Reaches Adolescents," Journal of the American Medical Association, 20 (no. 1, July 7, 1993):18.
94. Clifford Levy, "Fifth Graders Get Condoms in New Haven," New York Tiimes, 28 July 1993.
95. Berer and Ray, Women and HIV/AIDS, p.157
96. Goldsmith, "'Invisible' Epidemic," p. 18.
97. Mann et al., eds., AIDS in the World, p.187
98. Bob Rawson, "Survey Yields Snapshot of Student Health," Cambridge (MA) Chronicle, 22 October 1992. Based on student surveys in 1989 and 1992.
99. Penelope Wilson, "Clinic Connects with Teens Worried about Sex, AIDS, Health," Somerville (MA) Journal, 25 November 1992, p. 7.
100. Washington, Cates, and Wasserheit, "Preventing," p. 2578.
101. Elias and Heise, "The Development of Microbicides," p. 45. See also M. J. Rosenberg and E. L. Gollub, "Commentary: Methods Women Can Use That May Prevent Sexually Transmitted Disease, Including HIV," American Journal of Public Health 82 (1992): 1473-1478. Also the critique of this article: W. Cates, Jr., F. H. Stewart, and J. Trussell, "Commentary: The Quest for Women's Prophylactic Methods--Hopes vs. Science, American Journal of Public Health 82 (1992):1479-1482.
102. See Betsy Hartmann, Reproductive Rights and Wrongs: The Global Politics of Population Control (Boston: South End Press, 1995).
103. Peggy Clarke, president of the American Social Health Association, personal communication, 12 August 1993.
104. Berer and Ray, Women and HIV/AIDS, p. 64.
105. Janet L. Mitchell, John Tucker, Patricia Loftman, and Sterling Williams, "HIV and Women: Current Controversies and Clinical Relevance," Journal of Women's Health I (no. 1, Spring 1992): 38.
106. Evelynn Hammonds, "Missing Persons: African American Women, AIDS and the History of Disease," Radical America 24 (no. 2, 1993):7-24. Contains an analysis of the media portrayal of African-American women and explores the roots of their higher rates of AIDS.
107. As of 1991, 32 percent of Hispanics and 20 percent of blacks did not have medical insurance. See "Blacks, Hispanics, Middle Class Lose Health Insurance," Boston Globe, 22 December 1992.
108. Mann et al., eds., AIDS in the World, p. 224.
109. One notable example, of course, is the Tuskegee experiment (1930s-1970s), in which medical personnel examined and kept records on poor, mostly illiterate African- American men who had syphilis. The men were not treated, even after effective treatment for the disease was discovered. Only after this study received public condemnation was it ended and the surviving men and their families treated.
110. Sevgi 0. Aral et al., "Self-Reported Pelvic Inflammatory Disease in the United States," Journal of the American Medical Association 266 (no. 18, Nov. 13, 1991): 2572.
111. As of March 1993, black non-Hispanic women made up 53 percent of women with AIDS in the United States (white non-Hispanic women are 25 percent, and Hispanic women are 20 percent of the total). Department of Health and Human Services, "HIV/ AIDS Surveillance Report," p. 8.
112. Mann et al., eds., AIDS in the World, p.4.
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