The Importance of a Research Agenda for Female Genital Schistosomiasis

For millions of women living on the African continent, two of the greatest health concerns – schistosomiasis and HIV – overlap. In fact, research has suggested that female genital schistosomiasis (FGS) infection can increase a woman’s likelihood of becoming infected with HIV, as well as the speed with which the virus progresses to a deadly disease state.[1] Even absent HIV infection, FGS can have deleterious effects on the lives of women and girls, who suffer from pain and stigma as a result of the parasitic infection. 

These and other issues were discussed at the meeting, “FGS: Opportunities for Research,” held on September 15, 2019 in Liverpool, with support from USAID and DFID. Over the course of the one-day meeting – conducted in partnership with the Global Schistosomiasis Alliance, the SCI Foundation, Uniting to Combat Neglected Tropical Disease and COUNTDOWN and with financial and logistical support from UK aid, USAID, and RSTMH – participants received updates on the history, clinical picture, and social impact of FGS, as well as its link to HIV. 

“We had a lot of STD cases appearing in unexpected places and, after treatment, those cases were not improving,” explained Nebiyu Negussu, NTD program manager for Ethiopia’s Federal Ministry of Health, on a panel at the meeting. “We found that those areas were highly endemic with S. haematobium.”

In spite of the building evidence of FGS as a threat to the lives and livelihoods of women and girls in Africa, health care workers lack clear procedures for when they are faced with cases that appear to be FGS.

“When female genital schistosomiasis came up, it was something you were not quite looking for,” said Victoria Gamba, a resident in obstetrics and gynecology (OBGYN) at the University of Nairobi, Kenya, who was also a panelist. “Sometimes we just stumble upon a diagnosis, but as we continue we need to make it more of a programmatic approach.”

Breakout sessions at the meeting aimed at refining the research agenda to define and measure FGS, prevent and treat the disease, identify linkages between HIV and NTD programs, and engage communities to overcome the challenge of stigma. From those discussions, a series of operational research questions emerged, which addressed:

  1. The clinical picture and clinical diagnosis of FGS
  2. The social impact of the disease
  3. The link to HIV infection
  4. The potential to integrate FGS care for women and girls into existing health services

Now, with UK aid funding from the Department for International Development (DFID), the Neglected Tropical Diseases Support Center (NTD-SC) at The Task Force for Global Health is currently soliciting proposals for operational research to answer these questions. Our hope is to generate new understanding about how communities and health systems can address this disease to improve health outcomes and decrease the stigma faced by the 56 million women and girls affected.[2]  Ultimately, supported research will mitigate the profound inequity that results from this disease.


1Kristin M. Wall, William Kilembe, Bellington Vwalika, Cecile Dinh, Paul Livingston, Yeuk-Mui Lee, Shabir Lakhi, Debi Boeras, Htee Khu Naw, Ilene Brill, Elwyn Chomba, Tyronza Sharkey, Rachel Parker, Erin Shutes, Amanda Tichacek, W. Evan Secor, Susan Allen. Schistosomiasis is associated with incident HIV transmission and death in Zambia. PLOS Neglected Tropical Diseases, 2018; 12 (12): e0006902 DOI: 10.1371/journal.pntd.0006902

2World Health Organization. (2017). Schistosomiasis: WHO reports substantial treatment progress for school-age children. Retrieved from:


Image Caption: Children living in a community in Niger which was meant to receive an integrated mass drug administration (MDA) of  ivermectin, albendazole, Zithromax, and praziquantel (Alaine Knipes, CDC)

Children living in a community in Niger which was meant to receive an integrated mass drug administration (MDA) of ivermectin, albendazole, Zithromax, and praziquantel (Alaine Knipes, CDC)