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Autonomy in Healthcare Decisions
Women Living With HIV: Advocating for Autonomy in Healthcare Decisions

Released: March 02, 2020

Expiration: March 01, 2021

Sequoia Ayala
Sequoia Ayala, JD, MA
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Women of childbearing age who are living with HIV want meaningful healthcare counseling that empowers them to play a central role in medical decision-making based on their unique needs and life goals. We are at an interesting time in the HIV epidemic, especially when we consider that women living with HIV are now living as long as persons without HIV. It’s time to question previous guidance that left few options for these women.  

In the past, women living with HIV were often advised and even coerced to undergo sterilization or to make other reproductive choices that didn’t necessarily take into account their own health outcomes and desires for their life. However, we now live at a time when we are nearing the end of the HIV epidemic, when we have the knowledge that maintaining undetectable viral loads by adhering to effective HIV treatment renders a person’s HIV untransmittable to others (undetectable = untransmittable U=U). With the availability of highly effective ART options, the rate of mother-to-child HIV transmission has been dramatically lowered and nearly eliminated. In addition, HIV prevention medications are available to women at risk of acquiring HIV, including during pregnancy. We have now shifted the paradigm for women living with HIV who want to have children from “why do you want to have children?” to “let’s talk about how you can have children.”

My initial reflections on recent data that have called attention to the issue of ARV safety during the periconception period focus on the need for including women with HIV in decisions related to their own health and the health of their children. Women who are pregnant or planning pregnancy, whether living with HIV or not, should be the central drivers of their medical decisions, particularly those that are informed by a limited overall evidence base as is often the case when it comes to pharmacologic treatments during pregnancy. However, explaining potential medication risks in a way that puts them in an understandable risk/benefit context remains a challenge; it is essential that healthcare providers do not make assumptions about perceptions and acceptability of risk for the patient. In my experience, the risk/benefit analysis often looks different to the patient than to the provider, who may not offer the full range of available options because of high risk aversion. When it comes to safety issues in pregnancy, the potential risk of an intervention may loom larger than the potential risks of not providing that intervention (eg, do no harm). We need to walk patients through what we know and what we do not know about the risks and the benefits of a particular treatment option and empower them to decide how this information influences their individual situation.

Optimizing HIV therapy for women improves women’s health and reduces the risk of mother-to-infant HIV transmission during pregnancy, labor, and delivery. In the United States and across the world, discussions related to women’s health decisions during pregnancy too often place the mother’s and the infant’s health in opposition to each other, in many cases prioritizing protection of the fetus to the exclusion and detriment of the mother’s health. When counseling women on drug contraindications during pregnancy or potential risks to the unborn child, we can also counsel on the general lack of pregnancy safety data for many medications and provide women with the widest range of options. Many pregnant women must take medications that lack substantial data on safety during pregnancy for a variety of health reasons. This can lead to stigma against the mother because the unborn child is part of a protected class, but this stigma disregards the fact that maintaining maternal health is also essential for the health and vitality of the fetus.

More than one half of the HIV epidemic is made up of women living full lives. There are now many women in their 20s and 30s who were born with HIV and have been receiving ART all of their lives, but our understanding of how life-long ART affects women’s reproductive health over time is limited. Their concerns about how ART affects reproduction and family planning differ from women who contracted HIV later in life. Expanding research to include more women of all ages living with HIV and their infants will allow us to better understand and educate on risks and benefits of different ART options. 

In summary, healthcare providers should present a full range of HIV treatment options alongside the available safety and efficacy data as well as current gaps in our knowledge so that women of childbearing age who are living with HIV are able to make informed decisions about their own care. In my experience, treating women with respect and dignity and empowering their autonomy in healthcare decisions results in better outcomes for both women and their children.

To add your thoughts and experiences on caring for women of childbearing age living with HIV, answer the polling question and join the discussion by posting a comment.

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