Currently estimated to affect 56 million women and girls in Sub-Saharan Africa, female genital schistosomiasis (FGS) remains one of the most neglected sexual and reproductive health diseases in the region.

A complication of schistosomiasis, an infection caused by a parasitic worm that lives in fresh water in subtropical and tropical regions, FGS is noted as the most common gynaecological condition in schistosomiasis-endemic areas, occurring in up to 70% of women affected by the disease. It can have devastating consequences for those affected, including infertility, miscarriage, ectopic pregnancy and genital ulcers. Women and girls with FGS are also three times more likely to contract HIV, due to the open sores and inflammation resulting from FGS infection.

This year, the Children’s Investment Fund Foundation (CIFF) funded Accelerating Resilient Innovative Sustainable Elimination of NTDs (ARISE) programme, worked with colleagues from the Global Schisto Alliance, to bring FGS to the attention of the international Annual Neglected Tropical Disease NGO (NNN) Conference. Bringing together NTD practitioners, government leaders public health physicians, researchers, policymakers, and other stakeholders from over 50 countries, NNN is one of the largest global NTD-focussed events.

Gynaecologist and Obstetrician Dr Victoria A Gamba shared her experience of working with the ARISE project (led by Crown Agents and Oriole Global Health), on one of the first global initiatives aiming to mainstream FGS screening, diagnosis and treatment into existing public primary healthcare initiatives in Kenya.

Commenting on the challenges of this health issue, Dr Gamba says:

“Health professionals across sub-Saharan Africa are not trained on how to recognise FGS, as it is not well described in the medical textbooks or nursing curricula in any of the countries where schistosomiasis is endemic. As a result, FGS is often misdiagnosed as a sexually transmitted infection (STI), hence the patients do not receive the timely curative treatment with praziquantel that would reduce their suffering. In addition, on the international stage, FGS has long been a neglected aspect of NTD related morbidity, and has not been a priority for the Neglected Tropical Diseases (NTD) community, leaving women and girls extremely vulnerable.”

In Kenya, ARISE and LVCT Health, a Kenyan NGO, spearheaded efforts to mainstream NTD control into primary health care by combining cervical cancer screening with FGS examination. So far, 83% of the women who attended their appointment showed signs of FGS and could receive treatment.

FGS not only affects a person’s physical health but can also affect their mental health. Across sub-Saharan Africa, FGS is commonly mistaken for a STI, and affected women and girls often face social exclusion and fertility issues, harming their mental health and quality of life. Through community sensitisation via radio, media and local discussion groups, awareness of FGS amongst the broader community was also spread alongside this campaign, reducing the social stigma surrounding it.

Commenting on the impact of the pilot initiative, Dr Gamba remarks:

“According to the WHO, we know that an estimated 56 million women and girls are at risk of FGS, but due to the lack of awareness and misdiagnosis of the disease this number could be far higher. This healthcare intervention in Kenya is the first step to increasing FGS awareness and is key to increasing advocacy to include FGS within existing medical training across sub-Saharan Africa.”

The next steps will be to an evaluative research piece to assess the impact of the intervention on FGS diagnostic in targeted clinics. The results of the research will inform adaptation and possible scale up.

Beyond the successful Kenya integration pilot, Crown Agent and Oriole Global Health have been supporting FGS initiatives for the past three years, including knowledge, attitude and practice surveys on FGS in Tanzania and Zanzibar and the development of health worker training materials.

For more information contact Elodie.Yard@orioleglobalhealth.co.uk