The HIV/AIDS epidemic has been described globally as bringing a “revolution” to the patient-healer relationship and the distribution of health expertise (Epstein 1996; Barbot 2002). At first, the involvement of community-based organizations in the care of persons living with HIV when biomedical institutions were unable to provide treatment opened a field of intervention alongside biomedical care. It was later encouraged by transnational organizations and international agencies through, for instance, the promotion of the 1994 GIPA principles.² Field activities progressively included support and self-support, psychosocial and economic help, counseling related to testing or adherence to treatment, and defense against stigma and advocacy for persons “infected or affected by HIV.” In Africa, community-based organizations played a major role in organizing care and support (see TASO in Uganda), in obtaining access to treatment (see Treatment Action Campaign in South Africa), and in setting ethics for care and research (see Coalition Respect in West and Central African countries) (Eboko et al. 2011). This movement has been heterogeneous and emphasized either advocacy and the defense of rights or care and support delivery, according to organizations and country contexts.

Since its rise during the late 1980s, the HIV patients’ movement has been strong and well acknowledged in developed countries. This led to a shift regarding the relevant theoretical models for the role of the patient, who appeared as a “reformer,” while “community participation” became a necessary component in public health programs. In Africa, Nguyen considered the emergence of “therapeutical citizenship,” adapting the concept of “biological citizenship” to social mobilizations and HIV experience in Côte d’Ivoire (Nguyen 2005). This model acknowledges the shift from an individualistic difficult experience of HIV infection shaped by suffering to a collective “positive” experience emphasizing advocacy. However, ongoing discussion examines the extent to which this model can be applied to the majority of persons living with HIV in West African countries, or whether it only concerns a minority with privileged access to education and personal autonomy that enabled them to join organizations and participate as active members.

Women’s involvement as patients and as PLHIV-association members has only recently been analyzed at the local level in West Africa; a global social-science analysis is still missing (Desclaux et al. 2011). Women are usually considered as “natural caregivers” in families, especially for children, and are responsible for family compliance to biomedical prescriptions. Recent analyses in Cameroon, a Francophone Central African country, have shown that health professionals consider women living with HIV as “good patients,” compliant and able to communicate about their bodies and ailments, focused on their infants’ care rather than their own interests, and tenacious and altruistic enough to overcome social difficulties in order to get treatment for members of the family unit (Djetcha 2011). This image of “good wives and good mothers,” who are active though victims of HIV transmission, is reinforced by the high number of women involved in community care and support activities, much higher than the number of men—considered by health professionals as less compliant, vindictive, and selfish, also shown in Burkina Faso (Bila 2011).

Beyond gender stereotypes, these perceptions fit with the model of care and patient role that puts forward compliance to medical prescriptions following patients’ “therapeutic education” about biomedical knowledge. According to this model, women would apply health professionals’ prescriptions and adapt their social context to the requirements of pharmaceutical treatment, without any critical opinion or expertise: their role as patients would be defined by obedience and hope (Blystad and Moland 2009). Are Senegalese women living with HIV “therapeutic citizens” or “compliant patients needing to be educated and convinced?” The social effects of and reactions to the WHO 2009 recommendations regarding infant feeding and HIV provide an opportunity to document this issue; this will aid in understanding the experience of HIV-positive women living in West Africa.

Before considering recent women’s reactions, it is necessary to present the history of international recommendations regarding infant feeding and HIV and the role they assign women in addition to women’s attitudes and interpretations until 2009.

The first phase in international policies—ignorance of a public health issue—lasted 13 years: though HIV transmission through breastfeeding was discovered in 1985, it was only in 1998 that United Nations agencies published the first international recommendations for prevention.³ These recommendations opened the second phase—prevention based on behavioral change—and proposed a variety of feeding options (formula feeding, reducing the duration of breastfeeding, resorting to a wet nurse, pasteurization of breast milk, use of animal milk, and so on). Mothers were supposed to apply the option that presented the lowest risk in each individual case and contextual setting. In 2001, these recommendations were simplified: formula feeding and exclusive breastfeeding with early and rapid weaning (between 4 and 6 months) were the only “informed choice” options for mothers; in other words, women living in developed countries would use formula to avoid any HIV risk, and women living in resource-poor countries would select an option by “weighing risks” in their own setting. They would then “stick to their choice” and faithfully practise risk reduction in addition to applying behavioral control of breastfeeding through methods such as exclusiveness of breast milk use, care for nipples and infant mouth candidiasis, and care for infant nutrition and development. In 2003, the options were prioritized, and the required conditions for formula feeding were more narrowly defined.⁴

In 2004, the extension of antiretroviral coverage in low-resource countries led to considering the situation of women who need treatment for their own health and launching studies on the efficacy of antiretrovirals as a prophylaxis to make breastfeeding “safe.” As study results were gradually published showing the reduction in HIV-transmission rates, more and more health-care providers experimented with “protected breastfeeding,”⁵ a French-language idiom for prophylactic use of antiretrovirals taken by the mother or by the infant during the period of breastfeeding. For health professionals, this strategy represented progress insofar as it avoids the financial costs related to formula (with pharmaceutical-related costs assigned to others), management difficulties, and the risk of stigma associated with breast milk substitutes. In November 2009, the third phase in preventive policies officially began when WHO published recommendations based on the use of antiretroviral treatment combined with a feeding option—exclusive breastfeeding for 6 months, followed by mixed breastfeeding until “12 months,” or formula feeding (WHO 2009a). The choice between these feeding options would be made at the national or regional level, rather than the individual level as done previously. The national PMTCT program would then supply formula—or not—according to national decisions. African countries opted for exclusive breastfeeding as the only strategy, sometimes with a transition period when women who had already started formula feeding their infant at the date of publication of the recommendations would continue to be supplied until weaning. By contrast, developed countries maintained infant feeding with formula for all HIV-positive women. This new strategy is part of a global “vision” that aims to eliminate mother-to-child HIV transmission in 2015 (WHO 2010a). See also Chap.​ 12 in this volume.

For 11 years (between 1998 and 2009), the preventive strategy was behavioral, based on women’s individual choice, a rather unusual concept in the field of public health in low-income countries. One may question the relevance of interpreting this attribution of the decision to women as part of the “HIV culture” emphasizing patient responsibility and community participation in health matters.

At the field level, women were informed during a “breastfeeding counseling session” conducted during pregnancy. They were then supposed to discuss options with a counselor and choose the one that best corresponded to their individual and contextual situation to reduce or eliminate HIV-related risks, while also avoiding other infectious and nutritional risks inherent to breastfeeding alternatives. Why suggest that women choose when health workers might have prescribed an option after considering individual situations? The rhetoric of women’s “informed choice” was fairly explicit in successive versions of recommendations and “guidelines” that direct their implementation, though most recent recommendations set up criteria that reinforced the guidance role of health workers. Health professionals provide various explanations for keeping choice in the international recommendations before 2009, which have been discussed elsewhere (Desclaux et al. 2005). The choice would be the following: a woman’s right, outlined in the first recommendations in 1998, that should not be refuted to avoid questioning a gender-sensitive approach; a condition holding women to one feeding option for the entire required duration; a way to articulate and adapt the “global to the local” (in other words, strategies defined on an international level for individual situations that are too diverse to be reduced to a single national standard); and a relationship model between patient and health-care services in the context of HIV that fits in with counseling as applied to testing, which assumes a voluntary approach or informed consent. Other interpretive paths can be presumed to explain the divergence between attribution of the decision to women in the South and prescription of a single preventive strategy (formula feeding) in the North. Delegating choice to women in the South reflects the inability of the health-care systems to propose measures that are effective enough and available to all. It could also be interpreted as “cultural shaping” for prevention, involving operations (individual decision, anticipation, and “rational balancing” of risks) that fit into a Western model of risk management prevailing in public health and inspiring United Nations officials (Peretti-Watel and Moatti 2009).

On the contrary, in the field of infant feeding and nutrition (not considering HIV), women’s choice is seldom at stake since all medical discourses converge to encourage breastfeeding. Besides being based on a scientifically attested and ideologically influenced rationale, the content of these local discourses is shaped by UNICEF/WHO programs such as “Baby Friendly Hospitals.” They drive an a priori opposition to formula feeding whatever the mother’s situation, inherited from the 1980s when medical discourses were fighting the influence of multinational companies that had extensively provided formula in Africa during the 1970s, leading to an increased prevalence of diarrhea and malnutrition among infants (Van Esterik 1989). Though the extension of poverty in West Africa over the last 30 years eliminates the possibility for accessing formula for the majority of women, health professionals still seem to consider that women must be educated to the benefits of breastfeeding to avoid formula, and the notion of women’s choice is not relevant in biomedical recommendations regarding overall infant feeding. In the field of mother-and-child health—and particularly regarding infant feeding—mothers are not seen as legitimate “reformers,” and health professionals’ authoritative knowledge shapes power relationships in a very different way than in the field of HIV: here, mothers take on the role of patient rather than community participant.