Throughout Africa approximately 200-220 million people are living with schistosomiasis – also known as bilharzia - and 600 million people are at risk of being infected. Schistosomiasis is a waterborne disease, caused by worms that use aquatic snails as their intermediate hosts, and is particularly common in communities living near freshwater lakes, ponds and streams. Owing to the close association with water for washing, bathing and drinking, infection can be a daily occurrence but it can also occur in seasonal drier environments where people are made more vulnerable through necessary and life giving interactions with infested water.

Urogenital schistosomiasis - also referred to as female or male genital schistosomiasis (FGS and MGS) - is common, and even universal in some communities. It is thought that between about 100 and 120 million people are suffering from FGS and MGS which is causing damage to their urinary and reproductive systems. Adolescent girls and women with FGS can experience bleeding and stigmatising discharge from the vagina, genital lesions, nodules in the vulva as well as general discomfort and pain during sex. The damage that FGS causes also include sub-fertility, miscarriage and can effect vulnerability to HIV and the Human Papilloma virus.

Misunderstood, under-researched and under-reported

Peter Hotez estimates that globally there are approximately 67-200 million cases of S. haematobium infection among girls and women. Further estimates that between 33% and 75% of girls and women with S. haematobium infection also suffer from FGS in their lower genital tract would indicate that between 20 million and 150 million girls are affected, possibly making it one of the most common gynaecological conditions in sub-Saharan Africa. But unfortunately it is misunderstood, under-researched and under-reported to the extent that we have little concrete information on prevalence in different countries, inadequate diagnostic systems, and little guidance on how to prevent, manage and treat it.

We know that FGS is estimated to reduce a woman’s fertility by up to 75%. The links between FGS and HIV are also well established. Stoever and colleagues argue that up to 75% of girls and women infected with FGS develop often irreversible lesions in the vulva, vagina, cervix, and uterus, creating a lasting entry point for HIV. Their appraisal of Eryun Kjetland’s research in Zimbabwe showed that women with FGS had a threefold increased risk of having HIV. In a recent review of the evidence Pamela Mbabazi and colleagues argue that:

“Studies support the hypothesis that urogenital schistosomiasis in women and men constitutes a significant risk factor for HIV acquisition due both to local genital tract and global immunological effects.”

Hotez believes that preventing female genital schistosomiasis in sexually active women throughout many rural areas of sub-Saharan Africa could have a significant effect on HIV transmission.

The situation in Ghana

In Ghana schistosomiasis increased with the development of the Upper Volta Dam. The Ministry of Health’s Neglected Tropical Disease Programme has a mandate to tackle schistosomiasis, which it does through the distribution of the medicine praziquantel through schools, community programmes, and health centres. But detailed clinical research on urogenital schistosomiasis in Ghana is limited. In 2011 a survey conducted by Yirenya-Tawiah et al to determine the prevalence of FGS in people that live near rivers in the Volta Basin calculated prevalence at 10.6% (42/395). Their study also looked at the problems that women with FGS were experiencing. Vaginal discharge and itching were the most frequently cited reproductive health issue, other symptoms included lower abdominal pain, irregular menstruation, post-coital bleeding, pain during and after sex, miscarriage and infertility.

Why hasn’t more been done?

Given the number of people affected, and its harmful effects, it is astonishing that there hasn’t been more of a focus on this urogenital schistosomiasis before. Diseases that affect the poorest and the most marginalised tend not to be high on the agendas of policy makers. If you couple this with the fact that tackling urogenital schistosomiasis means discussing intimate issues such as sexuality and stigmatised areas of health such as infertility the reluctance to deal with the issue is clearer. Nonetheless such dialogue is needed to determine the full extent of the problem on-the-ground.

In Ghana we can see promising signs that there is an openness to tackling urogenital schistosomiasis. But we can foresee some challenges in taking this work forward. The Neglected Tropical Disease programme receives funding from the government (primarily for salaries), and from donors including USAID (in part via technical support channelled through FHI 360, the Volta River Authority and Sightsavers). This is often linked to donor priorities and as yet no donors are championing FGS. Donor norms sometimes require systematic reviews of the evidence prior to action. In this case the need is arguably great although the evidence – from Ghana at least – is limited. Other major challenges are the up hill task of integrating FGS into the public health system and getting enough praziquantel tablets to cater for all endemic communities. This can range even to the provision of treatment to pre-school-aged children where first signs of FGS can be found.

Health workers at all levels - from district health officers, to front line health workers such as community health workers and volunteers - are often over stretched and juggling multiple responsibilities. FGS and it multiple manifestations is one more ball to keep in the air. Furthermore action in this area would mean that different areas of the health sector would need to work together in a concerted fashion which is currently lacking. A call for greater cross-sectoral action is very clearly needed.

FGS is potentially a sensitive, private, and possibly stigmatising condition and messaging needs to be geared to the realities of women’s gendered experiences. This requires in-depth research to explore the context and community discourse surrounding FGS symptoms and the development of appropriate referral and treatment strategies that are accessible to all women and girls regardless of where they live or how much money or resources they can access. In so doing, strengthening the surveillance and tailored interventions of reproductive health services is something we should all welcome.

A future agenda for action

In January an International Scientific Workshop on Neglected Tropical Diseases brought together world leaders in the field of schistosomiasis, HIV and paediatrics –with a view to keeping a spotlight on urogenital schistosomiasis in Ghana. This will include:

- Bringing different communities together for action: Engaging all directors of health services, including the Public Health, Family Health (Reproductive Health) and Institutional Care divisions of the Ghana Health Services in the country through presentations and dialogue. Developing joint action so that maternal, sexual and reproductive health and HIV services have the skill set to prevent, diagnose and treat FGS.

- Training: Advocating for the inclusion of FGS in training sessions at national, regional, district and community levels including in in-service training and refresher trainings for health care workers.

- Getting FGS on the radar: Ensuring FGS is on the radar of relevant health staff such as clinicians, public health officers, obstetricians and gynecology consultants, nurses and community health workers.

- Action at the community level: Conducting research to explore how women understand the symptoms of FGS, who they consult and their treatment seeking pathways. Developing appropriate community messaging and engagement strategies through women’s groups, queen mothers, Traditional Birth Attendants and networks of Community Drug Distributors and community health workers to maximise appropriate referral, identification and treatment.

- Starting treatment younger: Periodic and regular treatment with praziquantel from when children are first infected should prevent the development of genital lesions due to urogenital schistosomiasis. But at the moment most praziquantel treatment programmes are focussed on school-aged children and there may be a need to start even earlier than this and make sure people of reproductive age get the care that they need.

- Making available diagnostics, surveillance tools and resources for management of urogenital schistosomiasis: Given how little we know about the illness this will include working with counterparts in other countries to share learning.

- Intensifying multi-sectoral collaboration: For example working with the Ministry of Water Resources, Works and Housing, The Ghana AIDS Commission and the education sector.

We hope that those working on health in other similarly affected countries will take up the challenge, and that donors can be persuaded to investing more in investigating this neglected issue which has the potential to touch many lives.

The following people also contributed to this article: Benjamin Marfo, Mike Yaw Osei-Atweneboano, Kate Hawkins, Sheila Addei, Alexander Adjei, Adriana Opong, Russell Stothard and Samantha Page.