Much was discussed during the conference about controlling reproduction among HIV-infected and at-risk women, whereas little was said about the actual reproductive experiences of women themselves. Women have fertility desires and intentions. However, they face incredible social, ethical, and clinical issues surrounding childbearing and motherhood, such as the stigma of HIV and pregnancy and how to prevent the transmission of HIV to their babies. Despite the tremendous difficulty of making the decision to have children, not enough research has been dedicated to these issues. Women are saturated with information about contraception and how to protect themselves, their children, and partners from HIV by controlling their fertility desires and avoiding reproduction. In contrast, when they intend the same prevention outcomes in the context of intentional conception, the conscious decision to plan and conceive children, they find limited research information. It is imperative to broaden the narrow focus on fertility regulation to a more inclusive reproductive choice research agenda that takes into account the experiences of HIV-infected and at-risk women who plan motherhood.
Such a research agenda is timely and significant because forecasts indicate a growing trend towards intentional motherhood and the demand for HIV fertility services1–3. Women represent 30% of the 900 000 Americans living with HIV/AIDS, and nearly all test HIV positive during their childbearing years, confronting issues around reproductive decision-making3,4. For years, having HIV often meant eliminating motherhood, as transmitting the virus to the baby or leaving the child an orphan was unthinkable. Many healthcare providers and commentators questioned the morality of pregnant HIV-infected women, and often advised them to terminate pregnancies or take medical measures to prevent future pregnancies5. However, with rapid medical advances in HIV care6, the improved prevention of vertical transmission of HIV from mother to baby7, and people with HIV living long healthy lives8, increasingly women with HIV/AIDS are considering motherhood1,2 and finding a more, although not completely, supportive medical environment9–12.
Despite the growing importance of fertility issues for women with HIV/AIDS, relatively little was discussed at this conference about how fertility experiences have changed since medical advances in HIV care. Only three sessions out of approximately 26 covered these issues: Dr David Kanouse presented data on the growing prevalence of fertility desires and intentions among HIV-positive men and women; a roundtable discussion with Dr Mark Sauer, Dr Suniti Solomon, Rebecca Denison with World – an AIDS Service Organization for Women, and Ann Duer with the Center for Disease Control spoke of the role of artificial insemination and HIV intentional pregnancy experiences in India and the United States; and a summary session that presented the perspectives of HIV-positive and at-risk women themselves who proudly stated ‘we are birth mothers, adoptive mothers, and future mothers who have desires and intend motherhood and grandmotherhood!’
If the increased numbers of HIV-infected and at-risk women intentionally having children has not adequately articulated the need for research in this area, listening to the voices of these women at the conference has certainly driven the message home. Perhaps the most convincing voice came from Dr Suniti's presentation of Aruna, a young woman from India who proclaimed ‘I would rather be HIV positive than a barren woman’. Voices like Aruna are revealing of the way many infected and at-risk women feel about motherhood in both developing and developed countries.
I became HIV positive soon after entering my childbearing years. In the 1980s and early 1990s I grieved over the loss of the children I would never have because of my status. With advancements in the medical management of HIV/AIDS, the possibility of motherhood suddenly became an increasingly socially accepted option for me and the thousands of other women who are privileged to have access to HIV therapies. It is time to state clearly and forcibly that HIV-positive and at-risk women have fertility desires and intentions. The current research agenda on contraception and HIV prevention rarely takes these desires, intentions, and behaviors into account, and therefore often does not reflect the lived experiences of women themselves. I ask the scientific arena to appeal to the actual lived experience of women; whether to have children is among one of the most sacred, emotional, and private decisions that at-risk and HIV-positive women must make. It is time that we, as researchers, broaden our agendas to incorporate fertility desire, intention, and behavior variables into fertility regulation models. Including these variables will provide the kinds of information necessary to positively to inform HIV family planning intervention and prevention efforts, and legal and ethical policies towards intentional pregnancies among HIV-infected women. This will enable existing resources to meet the fertility and family planning needs of women living with HIV/AIDS more effectively and to improve fertility outcomes for HIV-affected fathers, mothers, and babies.
1. Chen JL, Phillips KA, Kanouse DE, et al
. Fertility desires and intentions of HIV positive men and women. Fam Plann Perspect 2001; 33:144–165.
2. Stukin S. Baby love. POZ December: 2002:30–35.
3. Vandevanter N, Thacker AS, Bass G, Arnold M. Heterosexual couples confronting the challenges of HIV Infection. AIDS Care 1999; 11:181–193.
4. National Institute of Health, Office of AIDS Research. Women and girls and HIV/AIDS. Available at: http://www.nih.gov/od/oar/about/research/women/oarwomen.htm
5. Faden R, Kass N, editors. HIV, AIDS, and Childbearing: Public Policy, Private Lives. New York: Oxford University Press; 1996.
6. Bartlett J, Finkbeiner A. The Guide to Living with HIV Infection. Baltimore: The Johns Hopkins Press; 1998.
7. The International Perinatal Group. The mode of delivery and the risk of vertical transmission of human immunodeficiency virus type 1 – a meta analysis of 15 prospective cohort studies. N Engl J Med. 1999; 340:977–987.
8. Business Week. Is the AIDS news as good as it looks? 1997; 3527 (19 May):42.
9. Weigel MM, Kremer H, Sonnenberg-Schwan U, et al
. Diagnostics and treatment of HIV-discordant couples who wish to have children. Eur J Med Res 2001; 6:317–321.
10. Apoola A, tenHof J, Allan PS. Access to infertility investigations and treatment in couples infected with HIV: questionnaire survey. BMJ 2001; 323:1285–1287.
11. Ethics Committee of the American Society for Reproductive Medicine. Human immunodeficiency virus and infertility treatment. Fertil Steril. 2001; 77:218-222.
12. McCreary LL, Ferrer LM, Ilagan PR, et al
. Context based advocacy for HIV-positive women making reproductive decisions. J Assoc Nurses AIDS Care 2003; 14:41–51.