December 6, 2017
This letter comes from a group of young African women and reflects their HIV prevention research priorities. It was submitted to the National Institutes of Health’s (NIH) Division of AIDS (DAIDS) during the open-comment period concerning the structure and agenda for its next funding cycle (2021-2027).
Dear Dr. Carl Dieffenbach,
We are eight young women from South Africa, Uganda and Zimbabwe who were involved in recent consultations for planned HIV prevention trials with young women. We are interested in HIV prevention research because in each of our countries, young women are at high risk for HIV and we are so excited to hear that finally the needs of protecting young women are at the forefront of studies exploring new prevention tools. We understand that you and DAIDS are considering the research priorities for the next several years and we want to make sure that our voices are heard.
Sanele Ngulube – Zimbabwe, age 20
Irene Hware – Zimbabwe, age 22
Cleopatra Makura – Zimbabwe, age 21
Shakirah Green – Uganda, age 24
Catherine Nakkide – Uganda, age 22
Charity Twikirize – Uganda, age 22
Sinazo Peter – South Africa, age 24
Anelisa Madalane – South Africa, age 18
Please accept this as our feedback to you as you consider the research agenda that affects our future.
We have arranged our suggestions to you based on the themes we discussed together as a group. Here is what we want.
1) We want choice. The feeling that young women have when we know we have choices on how to protect ourselves, gives us power within and we get confident. The power and confidence means there are less chances that we become reckless about our sexual reproductive health. Choice frees us from slavery of any type because we are able to say yes or no, or even pick from a variety without being judged.
Most of all, we, young women, love experiencing new things and we love pushing boundaries. We want fun and exciting things and we shouldn’t be scared of using other methods because they are not of equal standard. Simply put, choice makes our life better.
2) We want products that are safe for our bodies and discrete. We, young women, are delicate, and you know how sensitive our vagina is. Not only that, but we have to fight social norms and cultures in our communities. We know that social norms should not dictate how we should take care of ourselves, but we also realise that most young women are oppressed by their partners, communities and culture.
We want something that will not attract people’s eyes and judgement. We need something that doesn’t require us to close our eyes, and clench our teeth when we use it. Again, it means we need different choices.
3) We want both systemic and non-systemic options. We have different opinions on what can work for us. Some of us like the idea of having to go to the clinic only once and be protected with a long-acting product—and it would be great if that could be for 6 months. Some of us like the convenience of systemic coverage. But others of us are nervous about side effects and the interaction with our sensitive bodies. We don’t want something that requires constant check-up. We want something that doesn’t stay in our bodies for a long time.
So, if you want to prioritise long-acting systemic methods, please make sure that it is easy and has no side effects for us. But remember our first point, that we want choices—we are all different and we want different tools at the table so we can choose what suits us best. We are all from different environments and cultures.
4) We want something other than injections. Some of us are okay with injections, but for others, injections don’t work and we want something we can take without pain. Some of us think twice about even going to the hospital when we are sick because we are scared of injections. Also, injections mean going to a clinic—and we have to deal with judgmental nurses who think we are too young for sex.
A visit to the clinic is really something else. So, if you plan on only giving us injections, it is not okay with us. We are not all good with the injections—please ensure that the research gives us something else too.
5) We want the ring: We love the idea of the ring. You insert it and you are done. It is like our secret weapon, painless but protective. We would use it because it’s in and doesn’t bother us for a while, and we can watch out for ourselves. We would even love the ring more if you added a contraceptive. We understand that DAIDS is thinking not to put more research into other forms of rings like this and we don’t think that’s a good idea. We have seen it works for some women and that’s okay that it doesn’t work for all because it’s another tool, another choice.
We want to thank you for the research you and your team have done. Thank you for the time you have put in and done for us, so far. However, we want you to know that we want more and we need more from you. We want to challenge you to do more for us and we want you to involve us more. We don’t want to be terrified of the products we are using (and please, if you come up with a new product, make it smell good). We don’t want side effects. And please, don’t forget about the potentially expensive costs of these methods. Most of all, we want products that will be safe and protect us as much as possible.
We hope our views will be heard and considered because we don’t want our issues to go unnoticed. We would love if—in the future—we were asked first about our needs instead of just coming with the products researchers think will be best and then asking us if we would use them. There is a South African saying, “it’s better to hear it from the horse’s mouth.”
—Sanele, Charity, Irene, Cleo, Shakirah, Catherine, Sinazo and Anelisa