Addressing Female Genital Schistosomiasis (FGS), a Health Crisis for Women and Girls in Africa

In honour of International Women’s Day on March 8th 2023, we share a story about the work that Oriole Global Health, a member of our Network has engaged in to address on key NTD in Africa – Female Genital Schistosomiasis. FGS is a common infection affecting an estimated 56 women and girls in Africa that often goes undiagnosed and untreated. It 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 infected with the parasite. It can have devastating consequences for those affected, including infertility, ectopic pregnancies or miscarriages, genital ulcers and tumours.  Women and girls with FGS are also three times more likely to contract HIV due to the open sores and inflammation resulting from their infection.

Despite these devastating complications, and the ready availability of a safe and effective treatment, FGS remains largely undiagnosed as an unrecognized condition amongst clinicians and health care workers. It is frequently mistaken for an STI, and women and girls often face stigmatization and social exclusion.

The Accelerate Resilient Innovative and Sustainable Elimination of Neglected Tropical Diseases (ARISE) programme, the Children’s Investment Fund Foundation funded emergency programme led by Crown Agents and Oriole Global Health, has been supporting the Ministry of Health in delivering their schistosomiasis treatment programme at the Kenyan coastal region. Complementing these control programme efforts, the MOH were keen to pilot an intervention to integrate FGS screening and treatment into female reproductive health services. The intervention would be a ‘proof of concept’ for integrating NTD control into mainstreamed primary healthcare services.

Therefore, between May and July 2022, as part of a collaborative partnership between the Division of Vector Borne and Neglected Tropical Diseases (DVBNTD) within the MOH; Stawisha (a USAID-funded programme in Kwale), and ARISE integrated FGS screening, diagnosis and treatment into an existing cervical cancer screening programme in Kwale county in Kenya. Teaching materials adapted from existing WHO materials were disseminated at the health facility level, alongside awareness generation and FGS diagnosis and treatment training for local clinicians, nurses and healthcare workers. Commenting on the challenge of addressing FGS, Dr Victoria Gamba, a gynaecologist and obstetrician supporting the integrated programme through Oriole Global Health says:

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

So far, 53 health workers and clinicians from 20 facilities in the region have undergone a 4-day training in the detection, diagnosis and treatment of FGS and cervical cancer. These workers returned to their health centres to provide on-the-job training and mentorship in FGS and cervical cancer screening to healthcare workers and to raised awareness of FGS among health management teams.

But healthcare training and high-level advocacy alone will not be sufficient to address the burden of FGS, as community members themselves are unaware of the signs and symptoms and rarely seek diagnosis and treatment themselves.  Therefore, to complement the training activities, improve health seeking behaviour and encourage uptake of FGS service, awareness of FGS amongst the broader community was shared through radio, media and local discussion group and community dialogue. Village elders, religious leaders, chief administrative officers, country level NTD coordinators and clinic personnel were also targeted for advocacy to raise the profile and awareness of the disease, to reduce stigma, and to promote FGS integrated services.

Reflecting on the impact of the FGS integration pilot initiatives also conducted in Homa Bay, Dr Gamba remarks:

“An estimated 56 million women and girls are affected by FGS and its effects, but due to the 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 conduct an evaluation study to assess how the integrated training and screening programme was perceived by the healthcare workers, how any follow-on services have been impacted, and whether there is an improved understanding and knowledge of FGS and the importance of seeking treatment among affected communities. These findings will provide insight into how to improve the intervention prior to scale up within Kenya.

For any additional information about the initiative, please contact Dr. Laura Appleby

FGS community sensitization
Photo Credit: Martin Owino, Crown Agents

Sub-county advocacy on Schistosomiasis, with a focus on Female genital schistosomiasis, October 2022