An Op-Ed Written by Nwadiuto Okwuniru Azugo
For centuries, medicine has treated pain differently depending on whose body it lives in. When a man falls ill and cannot work, the problem is seen as economic. It affects productivity and demands response.
When a woman experiences pain during sex, bleeds without explanation, or struggles to conceive, her suffering is moved to the private sphere. It becomes sensitive, cultural, too delicate to address, very easy to ignore. This is not a series of unfortunate oversights.
It is a pattern built into how medical research is funded, how health systems are designed, and how policy priorities are set. Long before Female Genital Schistosomiasis (FGS) was formally classified as a neglected tropical disease, it had already been rendered invisible by this structural indifference.
Schistosomiasis was first described in the 1800s, and signs of the disease in women’s genitals were recorded as early as 1899. But for most of the twentieth century, the way the medical world looked at this disease was shaped by how it affected men. In rural fishing communities, men who spent their days in the water showed clear symptoms.
They came to clinics with blood in their urine and bladder damage. Their illness was seen as a problem because it affected their ability to work. What it did to women’s genitals remained a side note, mentioned in case reports but never made a priority. Official recognition came slowly, and despite studies showing that women with genital schistosomiasis are three to four times more likely to acquire HIV, the disease is still not properly integrated into sexual and reproductive health programmes.
The question is not whether we have enough evidence. The question is why the evidence has not been enough to inspire action.
The scale alone should make inaction impossible to justify. An estimated 56 million women and girls in sub-Saharan Africa are at risk of FGS, according to the World Health Organization. That is more than the population of South Africa and roughly equivalent to Kenya.
In effect, it is as if an entire country of women and girls is living with the risk of a disease that affects their reproductive health and long-term wellbeing, yet that “country” barely registers in policy.
In Nigeria, the burden is equally stark. Studies in Ondo and Kebbi States found that four in every ten women examined had visible genital damage from the disease.
A 2024 study in Anambra State reported that one in seven adolescents had urogenital schistosomiasis. Among girls specifically, the rate was even higher: one out of every six. Nearly one out of every thirteen had heavy infections requiring urgent treatment.
These are not rare cases. Yet most health workers in these same areas have never heard of FGS. Even when a health worker does know about the disease, the simple medicine that can treat it, a drug called praziquantel, is often not available at local clinics, despite being free.
This invisibility is sustained by the conditions in which the disease thrives. Like many NTDs, FGS is a disease of poverty. It thrives where infrastructure is weak, clean water is scarce, and survival depends on daily contact with contaminated rivers.
The parasite lives in freshwater. To be infected, you must enter it. And who enters those waters? People with no choice. In many communities, women wash vegetables in streams before taking them to market. If they do not wash them, they cannot sell them. If they cannot sell them, their families do not eat. Water contact is not a choice. It is survival.
Consider Onyinyechi, a 17-year-old girl who declined a clinical examination for genital damage. Not out of fear or stigma, but because attending meant losing a day’s income by the river. No sales meant no food. To her, a disease without immediate economic consequence was not worth that loss. Who could fault her logic?
This is why education and awareness matter. When a woman learns that her bleeding may be caused by a treatable parasite, that knowledge changes things. Now her suffering has a name. Now she has a reason to seek care. But awareness only works if the system is ready to receive her. Imagine Onyinyechi learns about the disease. She finds money for transport, leaves her chores behind, and travels to a clinic, only to meet a nurse who has never heard of FGS. There is no medicine, and she cannot afford further examination. She goes home. She does not return. Her effort becomes a burden instead of a pathway to care.
This brings us to a fundamental contradiction. Nigeria is actively pursuing Universal Health Coverage through the National Health Insurance Authority Act of 2022 and the Health Sector Renewal Investment Initiative, with a clear promise: access to care should not depend on ability to pay. But where does a disease like FGS fit within this system? If UHC is to mean anything in endemic communities, it must reach those currently excluded. Existing schistosomiasis control focuses on school-based treatment, but this often neglects out-of-school girls and adult women—those who often bear the greatest burden.
The barriers are not scientific but structural. Treatment exists, and delivery platforms already exist. The problem is organisation. Funding is split across neglected tropical diseases, HIV, and maternal health, each with separate targets that discourage integration. Even routine care that screens for HIV, cervical cancer, and other STIs rarely includes genital parasitic infections like FGS, so women move through services without being fully assessed. FGS is also largely absent from health information systems, leaving its burden undercounted, underfunded, and underprioritised. What is not counted is not funded, and what is not funded does not exist.
The solutions are straightforward. No new science or drugs are needed, only better use of existing systems. The Basic Health Care Provision Fund should ensure praziquantel is consistently available in endemic areas. Training must include FGS. Routine sexual and reproductive health services, including integrated screening for HIV, cervical cancer, and STIs, should also assess for FGS where risk is high.
Mass drug administration must extend to adolescents, since a 16-year-old exposed daily to infected water is not protected by programmes that stop at age 14. These are failures of priority, not capacity.
Universal Health Coverage must be measured by who is actually reached. It must include women whose symptoms are dismissed and girls never counted. FGS is not only a neglected disease. It is a test of whether universality is real.