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Shared Decision Making
Her Life, Her Choice: Optimizing HIV Care in Women of Childbearing Age

Released: October 25, 2019

Expiration: October 23, 2020

Linda-Gail Bekker
Linda-Gail Bekker, MBChB, DTMH, DCH, FCP(SA), PhD
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I recall the early years of caring for women living with HIV. I was trying to set up a new ARV clinic in the 2000s in South Africa, and drugs were so limited and so precious that we had to ration who got them. This meant that these drugs went to people who had children and had shown “community value.” In many cases, these people were women who were bewildered by their diagnosis of HIV and faced an uncertain future. Compounding this distressing time, there was also an unspoken but pervasive sense that any more pregnancies would be considered irresponsible, not worthy of precious ARVs, and certainly not to be encouraged.

We’ve Come a Long Way…Women Now Have Choices!
So many things have changed since those early years of HIV treatment, and women are now truly living with HIV. First, with the availability of newer ARVs, we now care for women in an era when an undetectable viral load means untransmittable virus to sexual partners (U=U). We’ve heard from so many patients how incredibly liberating this is. Second, we now know how to advise patients on safer conception, even when relationships are serodiscordant, how to ensure with near certainty that a baby is born free of HIV infection, and how to lovingly breastfeed a new baby even while living with HIV. This all means that people are now free to make reproductive choices that best fit their individual situation, which can be so immensely personal for them and their families.

These choices are ever so important in light of a recent commission that advocated for defining sexual and reproductive health as not simply the absence of disease but as a state of physical, emotional, mental, and social well-being. As such, all individuals have a right to make decisions governing their body and to access services supporting that right, which includes:

  • having their bodily integrity, privacy, and personal autonomy respected
  • freely defining their own sexuality, including sexual orientation and gender identity and expression
  • deciding whether and when to be sexually active
  • choosing their sexual partners
  • having safe and pleasurable sexual experiences
  • deciding whether, when, and whom to marry
  • deciding whether, when, and by what means to have a child or children and how many children to have
  • having access over their lifetime to the information, resources, services, and support necessary to achieve all of the above, free from discrimination, coercion, exploitation, and violence

If we say that HIV is now a chronic disease in which longevity is restored, then the quality of life that goes with this must also be restored. We empower the women in our care so much when we put decision-making about their sexual and reproductive lives squarely back in their hands. This can be meaningful only when they are also given all the relevant facts and information, clearly and unambiguously. When counseling a young woman today, whether pregnant or not, whether contemplating pre-exposure prophylaxis or thinking about contraceptive options in ART, my approach is the same: clear, relevant information; a listening ear; and an open, unbiased conversation. Through this approach, we enable women to make an informed decision.

Assessing the Risks and Benefits of HIV Medications in Women of Childbearing Age Living With HIV
It is against this backdrop of dramatically improved outcomes and patient-centered care for women living with HIV that, in mid-2018, clinicians were faced with new data from the preliminary analysis of a birth surveillance study in Botswana that suddenly and unexpectedly complicated the management of HIV infection in women. The data suggested that dolutegravir, a recommended first-line ARV drug proven to be highly effective and safe, may be associated with increased risk of neural tube defects among infants born to women receiving the drug at the time of conception or in early pregnancy. The release of this interim finding prompted multiple national and international guideline panels to issue revised recommendations for dolutegravir use in women of childbearing age and during pregnancy to avoid exposure during conception and early pregnancy. An updated analysis of a larger accrued dataset involving 1257 additional births with dolutegravir exposure at conception showed a neural tube defect prevalence rate of 0.30% (5/1683; 95% CI: 0.13-0.69), much lower than the interim rate of 0.94% based on 426 birth exposures in the 2018 dataset. Although this rate is lower than previously indicated, it remains slightly higher than the 0.10% prevalence of neural tube defects observed in women receiving non‒dolutegravir-based ART during conception (15/14,792; 95% CI: 0.06-0.17).

Based on the updated findings, the WHO has reconfirmed the use of dolutegravir-based ART as preferred first-line and second-line therapies for all individuals living with HIV; the WHO also noted that for women of childbearing potential initiating ART, the benefits of dolutegravir—including better viral suppression, fewer maternal deaths, and fewer sexual and mother-to-child transmissions—likely outweigh the potential small increase in neural tube defect risk. The guidelines stress a woman-centered and rights-based approach in which women are counseled about the benefits and risks of dolutegravir to make an informed decision regarding its use.

The question of whether to use any medication in pregnancy or at the time of conception will always be a risks vs benefits one, regardless of HIV serostatus. There is no doubt that, if possible, it is best to avoid any pharmaceuticals at the time of conception and during pregnancy. However, when a medication can protect a baby from a life-threatening infection, the decision to carefully use that agent/medication/intervention comes into sharp focus. My job as a healthcare provider is to offer women the best selection of options during their childbearing years, which includes methods for preventing conception if that is their choice and the best medications for themselves and their offspring should they choose to conceive.

I have never engaged a woman who did not want to do what was best for her unborn child. When we get this process of educating women about all available options correct, then we as providers are empowered to speak about the “normalization” and the destigmatization of HIV.

Learn More
In this interactive, online educational program, we will endeavor to provide useful insights on navigating the evolving HIV treatment landscape for women of childbearing age, weighing the evidence related to HIV and potential ART risks for both infants’ and women’s health, and promoting and respecting the autonomy of women in making their own informed healthcare decisions. 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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Which of the following would you describe as your greatest challenge in providing care for women of childbearing age who are living with HIV?
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