Trusting Women, Shared Decision-making & The Possibility Of PrEP

Co-authored by Dominka Seidman, MD
Photo credit:

Worldwide, approximately one million reproductive-aged women were diagnosed with HIV in 2013. 60% of new HIV infections in individuals under age 25 were in women and girls. Globally, 40% of pregnancies are unintended. There is significant overlap between areas with higher rates of HIV and unintended pregnancies.

Pre-exposure prophylaxis (PrEP) is a highly effective HIV prevention method, currently a one-pill once-a-day regimen, with the potential to dramatically impact new HIV infections. The historic 2015 World Health Organization's (WHO) early release guidelines on PrEP recommend offering PrEP to individuals at substantial risk as part of a combination of HIV prevention services.

In order for PrEP to be effective in curbing the disproportionate rates of HIV acquisition among women, clear normative guidance needs to include women's reproductive health intentions including women who are pregnant and breastfeeding. As countries, clinics and providers grapple with how to best offer PrEP to women throughout their lifetimes, we suggest a strengths-based approach, rooted in trusting women.

Share decisions.
Patients are experts in their own vulnerabilities to HIV. Shared decision-making is a collaborative process that allows patients and providers to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient's experiences, values and preferences. In situations where there are options with no clear answer, and where there are pros and cons to each choice, shared decision-making provides an ethical and woman-centered approach. Clear PrEP guidelines inclusive of women's reproductive intentions are required to offer choices incorporating women's values and preferences.

Contextualize risk. When weighing risks and benefits of PrEP during pregnancy and breastfeeding, consider women's priorities and goals. Clinicians may be concerned about providing a certain level of safety or decreasing risk to zero. But what is the woman's desired outcome? Women vulnerable to violence, housing instability, and hunger balance these risks alongside concerns about HIV acquisition. For some women, the greater risk may be NOT having a child.

Offer choices. Presenting options allows for choice - an opportunity to opt into care. Offering, rather than recommending, is critical in shared decision-making. Choices are empowering, and provide flexibility as a woman's experiences, values and preferences change over time. We often hear, "should PrEP be recommended to her?" We offer PrEP, and information about other HIV prevention options, to all women, including those who are pregnant and/or breastfeeding. By eliciting a woman's preferences and priorities, and confirming her preferences are based on evidence rather than myth, we affirm her process, in turn providing the space for each woman to choose.

Respect change. Priorities and desires naturally change, as do vulnerabilities to HIV. There is a spectrum of desired, undesired, planned and unplanned pregnancies; women's perspectives may change over time. There is also a spectrum of risk and readiness to engage in prevention strategies. Developing comfort with change and ambiguity is key to supporting women as they navigate natural fluctuations in preferences, capabilities and priorities. Decisions about HIV prevention with women are necessarily an ongoing conversation.

Women make hard decisions every day. In matters of sex, safety, relationships, pregnancy, and breastfeeding, women are highly experienced at making difficult decisions, balancing competing interests and priorities. Women's health advocates know the antidote to this dilemma: trust women. Women are adept at making nuanced decisions, and we can empower them in that decision-making capacity with evidence-based information and choices. Let's set up HIV prevention counseling, including offering PrEP during pregnancy and breastfeeding, to engage women in the decision-making process, and ultimately trust women to make their own best decisions.

PrEP is a disruptive innovation in the HIV prevention dialogue, introducing choice and the possibility for shared decision-making. We have the opportunity to develop a prevention approach responsive to women's reproductive and sexual preferences and values across a lifetime. Let's take advantage of it.

Global SHARE is a Global Community for Sex, HIV And Reproductive Health, a group of clinicians, advocates, researchers and community members in dialogue and debate sharing best practices and lessons learned for safer conception implementation. Join the conversation!