Our Rights - Our Lives - Our Decisions! A Brief about ARV Choices for Women and Girls Living with HIV as a Human Right, with Dolutegravir as a Focus

"Engage us as active participants. Listen to us. Respect our autonomy. Give us the information we need, enable us to make informed choices - and support us in those choices, whatever they may be."

Produced by networks of women, including young women, who are living with HIV and Salamander Trust colleagues around the world, this advocacy brief articulates the right of women to access life-saving antiretroviral therapy (ART), with a focus on Dolutegravir (DTG). It is about the rights of women living with HIV in all their diversity and across their life stages to access informed, supportive choices regarding HIV treatment, contraception, and other sexual and reproductive health and rights (SRHR)-related information, education, and services.

Thd advocacy brief sets out to explain why advocates call for more effective and ethical strategies for decision making about HIV treatment options for women living with HIV in all their diversity, at all levels, moving forward. It begins by exploring the impetus for this brief. Antiretrovirals (ARVs) like DTG are listed in the World Health Organization (WHO)'s model list of essential medicines that must be made available and affordable to all. However, in May 2018, a WHO HIV Department warning (known as a "signal") cited a potential risk of neural tube defects (NTDs) for babies born to women taking DTG during conception and pregnancy in Botswana. The WHO statement, based on its 2016 ARV guideline, recommended that pregnant women already on DTG should "not stop their ARV therapy" but that ARV therapy for women of childbearing age, including pregnant women, "should be based on drugs for which adequate efficacy and safety data are available; an efavirenz-based regimen is a safe and effective firstline regimen".

In response, some countries have entirely banned access to DTG for women reproductive age (i.e., between 15 and 49 years), or have limited it if healthcare providers consider that they are not able to access and use consistent and reliable contraception. As a result, as these advocates argue: "Our access to DTG is now solely defined by our potential, or an assumed, biological capacity to have children - a huge issue for women of reproductive age in all our diversity....The relationship between treatment, women’s choice, and giving birth to healthy babies should not become a zero-sum game where our rights are violated and we are left with no choices." (Since May 2018, research (outlined in the brief) has shown results that should pave the way for wider use of DTG in pregnancy throughout the world.)

The 2017 WHO Consolidated Guideline on Sexual and Reproductive Health and Rights of Women Living with HIV (see Related Summaries, below) outlines a woman-centred approach that these advocates endorse as they think through what happened in the DTG case. They are on board with an approach to health care that sees women as active participants in and beneficiaries of trusted health systems that provide information and options to enable women in all their diversity to make autonomous choices. Figure 2 on page 13 shows the dimensions of each woman's life, depicted by each outlying circle, that at least need to be considered when discussing ARV choices with each individual woman who is expected to place herself in the care of healthcare providers. These are in addition to intersectionalities such as age, race, disability, ethnicity, key population status as women who use drugs or engage in sex work, sexual orientation and gender identity (SOGI), livelihood, economic status, the way society and law regulate and criminalise certain behaviours, and many other variables.

These advocates contend that one ramification of this DTG experience is that women's trust in global and national leadership needs to be rekindled. In the spirit of rebuilding this trust, they make (on pages 15-19) a series of recommendations to United Nations (UN) partners (WHO and the Joint United Nations Programme on HIV/AIDS, or UNAIDS), governments, researchers, and donors. To cite only one: "The WHO HIV Department must ensure that firm procedures are in place moving forward, so that it meaningfully researches WITH us our options, realities and treatment priorities, and takes these onboard, BEFORE warnings are issued that have serious implications for women living with HIV in all our diversity."

To access a full repository of key resources on DTG, including statements and advocacy conducted by women living with HIV and other members of civil society, click here.