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Trial Participant and Courageous Advocate: This year’s winner of the Falobi award

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AVAC
Friday, November 9, 2018
General

Without women like Gcobisa Madlolo, it’s impossible to see how HIV prevention would advance. As a young South African woman, she learned about a study called EMPOWER (Enhancing Methods of Prevention and Options for Women Exposed to Risk), which was investigating a combination prevention strategy that included PrEP for young women in Tanzania and South Africa. Madlolo enrolled. She became an early adopter of PrEP and began to speak out about her experience—a loud and proud champion of PrEP, of HIV prevention, and of sexual health rights for women.

Gcobisa Madlolo

When EMPOWER ended in 2017, Madlolo, a mother of twins and a writer and activist, doubled down on her commitment to find and support interventions that work for herself and her community. She transitioned from EMPOWER to a demonstration project known as POWER (Prevention Options for Women Evaluation Research), which is helping to inform the introduction of oral PrEP among African women. Madlolo continued her advocacy too, seizing opportunities to talk openly about PrEP and why it makes sense for her and others.

“I take PrEP because I cannot put the keys to my own health in someone else’s pocket – I want young women and men everywhere to realize that they have to take control of their health,” she said.

For her courageous and inspiring voice and her commitment to participate in these HIV prevention studies, Madlolo was awarded the 2018 Omololu Falobi Award for Excellence in HIV Prevention Research Community Advocacy. A group of HIV prevention advocacy organizations—African Microbicides Advocacy Group, AVAC, IRMA, Journalists Against AIDS and NHVMAS—gives the award, established in 2008, in memory of Nigerian activist Omololu Falobi, a talented journalist, social justice activist, and advocate for prevention research. Falobi put a spotlight on the importance of Africans taking ownership of their own HIV care and prevention. This was the first time the Committee sought nominations of young people who were study participants and/or early adopters of new prevention interventions and who used that experience to advocate for prevention rollout and inclusion of other voices.

In nominating Madlolo, Professor Sinead Delany-Moretlwe of the Wits Reproductive Health and HIV Institute (Wits RHI), which sponsored EMPOWER and POWER said, “She’s a real powerhouse, and truly the present and future of women’s HIV prevention advocacy. Gcobisa grabs every opportunity to share her PrEP journey, the importance of support, how she is able to adhere to PrEP and how going on PrEP was a life-changing decision for her.”

For young women to consider and ultimately embrace strategies for HIV prevention the role of women like Madlolo, who stands at once as peer, role model, leader and advocate, is indispensable. Madlolo told an audience at the awards ceremony at the Research for HIV Prevention conference in Madrid in October that she too understands how important her voice can be.

“This recognition means that I must go out there even more, more especially to the communities where young women have very limited resources to share, and inspire and encourage them to make the right health choices. I am more determined than ever to be the face of PrEP. I want to go out there to every village, every town, every city and talk to other young people about the importance of protecting themselves.” she said.

Manju Chatani-Gada, Director of Partnerships & Capacity Strengthening at AVAC said, “Omololu was a visionary leader, journalist and HIV prevention activist, who accomplished much in his too-short life. He dedicated himself to HIV prevention research advocacy in Nigeria, Africa and worldwide and to championing the voices of civil society. Omololu would be so proud that the award is celebrating the contributions of trial participants and he’d be even prouder of Gcobisa and her fierce advocacy on behalf of herself and other young women.”

The world needs many thousands of women like Madlolo to widen the road toward prevention….and they are beginning to make themselves known, for which we should all be grateful. Among them, the award committee honored two other women who participated in studies and used that experience to inspire others:

  • Ruth Nahurira, a former participant in the ASPIRE (A Study to Prevent Infection with a Ring for Extended Use) trial and the HOPE (HIV Open Label Prevention Extension), two studies of the dapivirine vaginal ring. Ruth has used her personal story and experience to help sensitize communities – those close to her home in Kampala, Uganda and even globally – about the importance of HIV prevention research, particularly for women. Within the trials themselves, she mentored other study participants, encouraging them to use their assigned rings and to comply with study procedures.
Ruth Nahurira
  • Mercy Mutonyi Wafula is a passionate advocate and one of the earliest adopters of oral PrEP in Kenya. Mercy has been part of the PrEP journey from trial phase to someone who has chosen PrEP as her intervention of choice for HIV prevention. Her work with sex workers earned her an opportunity to not only work as a lead PrEP Ambassador, but also as a co-investigator of a PrEP demonstration project. She is also the coordinator of a DREAMS Innovations Challenge project at the Bar Hostess Empowerment & Support Programme (BHESP) that is focusing on creating awareness and demand for PrEP among sex workers in Nairobi.
Mercy Wafula

Since 2008, the Omololu Falobi award has been presented as an ongoing legacy that recognizes his commitment and lasting contributions to HIV prevention research advocacy and honors those who follow in his footsteps. Madlolo received support to attend HIV R4P along with a cash award to help advance her advocacy work for prevention options for young people. The runners up also received a cash award. Profiles of Madlolo and the two runners up as well as more information about the award, Falobi, and previous recipients are online at www.avac.org/falobi. Click to watch the presentation ceremony at the HIV Research for Prevention Conference.