A while back, I worked on developing a training for ICAP at Columbia University on training on the optimization of HIV treatments. Meaning, simply, that HIV treatment has to be effective, simple to take, and affordable.
We created a series of trainings for health care workers on new HIV medications. Check it out here if you are curious! Over the course of the development of the materials, more information was coming out about risk to fetal development when pregnant women take the medication. We developed updated materials specifically about the use of the drug during pregnancy and the breastfeeding period. You can find those here if you want to get granular.
So, why is this important? Well, due to the risk, there was a moratorium in some countries on the use of the new drug in all women of childbearing potential. Some countries decided to offer the drug only to women who are on effective birth control. You can imagine that in some countries that equates to a very very few women who would be eligible. All men were eligible. But. Wait. Didn’t I just write that this drug was easier to tolerate, more effective, and more affordable. Yes. Yes, I did.
As you can imagine, this has caused a lot of consternation and, luckily, activism, too. Treatment protocols like this are linked to sexism, for sure, but even wider systematic failures to women related to the Global Gag rule which has disallowed organizations to use US funds for abortion services. You can read more about the effects of the Global Gag rule on this new drug here.
What is always remarkable to me is how people come together in solidarity to shine light on injustices and, hopefully, to change them. Women living with HIV came together in Kigali when this was happening and wrote a statement together that says, powerfully, “We, the women living with HIV at this meeting, conclude that blanket exclusions that deny women equitable access to this optimal HIV treatment are not warranted or justified.” Each woman, they wrote, is not just “a vessel for a baby, but an individual in her own right, who deserves access to the very best evidence-based treatment available and the right to be adequately informed to make a choice that she feels is best for her.”
As the story unfolded and as more data was collected and more voices were raised, the World Health Organization changed its tune and now recommends the new drug as a first- or second-line treatment in all populations. Critically, women are given the necessary information and, finally, allowed to make an informed decision with their doctors.
Stories like this, especially when I have even a teeny tiny part in them, are completely buoying to me. This work can be hard and tiring and I can feel like Sisyphus more than I wish. But, then. There are wins and those wins motivate me to work towards the next win.
What keeps you going in this work?