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Using metaphor to deal with human immunodeficiency infection and infertility

2001; Elsevier BV; Volume: 75; Issue: 5 Linguagem: Inglês

10.1016/s0015-0282(01)01703-4

1556-5653

Kenneth J. Ryan,

Adolescent Sexual and Reproductive Health

In the preceding article, “Human immunodeficiency virus and assisted reproduction: reconsidering evidence, reframing ethics” by Anne Drapkin Lyerly and Jean Anderson, a strong case is made for not categorically excluding individuals with HIV infection from infertility services (1Lyerly A.D. Anderson J. Human immunodeficiency virus and assisted reproduction reconsidering evidence, reframing ethics.Fertil Steril. 2001; : 843-858Abstract Full Text Full Text PDF PubMed Scopus (55) Google Scholar). In the past year Howard Minkoff and Nanette Santoro (2Minkoff H. Santoro N. Ethical considerations of the treatment of infertility in women with human immunodeficiency virus infection.N Engl J Med. 2000; 342: 1748-1750Crossref PubMed Scopus (55) Google Scholar) as well as Deborah Anderson (3Anderson D.J. Assisted reproduction for couples infected with human immunodeficiency virus type 1.Fertil Steril. 2000; 72: 592-594Google Scholar) have made similar arguments for changes in public policy and practice. In the past, the reasons for advising HIV-positive patients against unprotected intercourse, pregnancy, and childbirth or infertility treatment were straightforward and made sense. When acquired immune deficiency syndrome (AIDS) was first confirmed in the United States in 1981, it was a poorly understood, fatal disease with no known treatment or cure. Sexual partners could infect one another while trying to conceive, and the disease was transmitted from mother to infant in over 25% of pregnancies—and the prognosis of the infected child was poor. Thus, pregnancy seemed ill advised: not only did the infected patient have a short life expectancy, but conception involved the possibility of infecting both the partner and the offspring with the fatal disease. The fear of accidental infection of health care workers and other patients, and the possibility of contamination in the laboratory have also been factors. Universal precautions and years of experience with good safety records have quieted but not dismissed these concerns. In the early years after it was first recognized, HIV infection was associated largely with male homosexuals and intravenous drug users. Concerns about reproduction were not a high priority. Now heterosexual intercourse appears to have become a major route of HIV infection. Women at reproductive age make up a large number of new disease cases, and many of these patients are getting pregnant or seeking infertility services. The Lyerly and Anderson article “reframes” ethics to provide reasonable and convincing arguments in favor of new policies, but it is the facts that do most of the work. The epidemiology, treatment, and prognosis of HIV infection have changed so markedly that none of the arguments once used to justify avoiding pregnancy or infertility treatment have the force they once had. Treatment of HIV infection has improved dramatically in the past 5 years or so, lowering the death rates and improving survival. By treating both the pregnant woman and the newborn with antiviral drugs, vertical transmission from mother to infant can be reduced markedly to about 2%. When only the woman carries the virus, infection of her partner can be avoided by the use of artificial insemination with the partner’s sperm; when the man is HIV positive, processing of the semen to free it of virus is now an option. Furthermore, the Supreme Court’s interpretation of the Americans with Disabilities Act (ADA) suggests that it would be illegal to deny infertility treatment to a couple solely on the basis of one or both partners having HIV infection. Thus, cultural attitudes about those infected with HIV remain the final hurdle: HIV infection can be regarded as a metaphor. Susan Sontag’s discussion of “illness as metaphor” examined the popular depiction of tuberculosis during the 19th century and cancer for most of the 20th century (4Sontag S. Illness as metaphor. Vintage Books, New York1979Google Scholar). According to Sontag, because these once mysterious illnesses had no known cure and generally fatal outcomes, a mythology developed to explain their causation and spread. All sorts of popular theories arose about the type of personality and activities that would predispose one to these illnesses. Such diseases were often considered a form of divine retribution, a punishment brought upon the victims for their moral degradation. And because the diseases were treated with fear and loathing, the victims often found themselves ostracized from their communities. Thus, at times the diagnosis of cancer was withheld from patients because it was felt that it was best for them not to know. The impact of tuberculosis on the lives and loves of the Romantic poets Keats and Shelley and the pianist Chopin helped to invest the disease with an air of romantic fatalism. Tuberculosis became associated with a romantic ideal of the bohemian life style, as illustrated by the opera characters Mimi in La Bohème and Violetta in La Traviata. Today, HIV infection has assumed the metaphoric role once held by tuberculosis and cancer. Early in its spread, HIV provided all the mystery and inevitable fatality needed for such a mythology to develop. With its prevalence in the artistic and creative community, among homosexuals, and in the drug culture, the illness seemed to fulfill popular notions about moral degradation and self-destruction. Tellingly, in 1996 the Pulitzer Prize winning musical Rent, a modern adaptation of La Bohème, substituted AIDS for tuberculosis as the heroine’s fatal disease. As Sontag points out, until both doctors and the public cease to think of illness in metaphorical terms, diseases cannot be effectively dealt with. Tuberculosis became less of a mystery after the bacillus was isolated and streptomycin became an effective treatment. As we begin to understand cell biology and the factors that control cellular proliferation and growth, cancer has become less mysterious; effective treatments have been developed for a few cancers such as choriocarcinoma and childhood leukemia. Similarly, the isolation of HIV and the study of its molecular biology have dispelled some of its early mystery and have helped in the development of antiviral drugs. Ethical analysis can help change popular attitudes, clinical practice, and public policy in dealing with HIV infection and infertility care. However, the real key lies in dispelling the disease’s status as a metaphor.