OPINION: Price we pay when diseases are neglected

Every year on World Neglected Tropical Diseases Day, we repeat the same phrase: these diseases are neglected. But what does that really mean, and who bears the cost? NTDs affect over a billion people globally, largely in communities with the least political power, visibility and access to quality healthcare. They persist because they are termed low priority, not because they are rare. In this context, neglect is structural.

In Kenya, schistosomiasis (commonly known as bilharzia) is one such disease. Bilharzia is still thought of as a childhood infection linked to swimming in contaminated water. What is rarely addressed is that it continues into adulthood and has serious consequences for women’s sexual and reproductive health. The disease is endemic in several regions of Kenya. Studies conducted in coastal Kenya have confirmed ongoing infection among pregnant women.

What makes schistosomiasis especially concerning for women is the condition Female Genital Schistosomiasis. This occurs when parasite eggs become lodged in the tissues of the cervix, vagina, vulva or fallopian tubes. The symptoms can include abnormal vaginal discharge, bleeding after sex, chronic pelvic pain and, in some cases, sub-fertility or infertility.

Many women with these symptoms are treated for sexually transmitted infections, often without improvement. In addition, Schistosomiasis in pregnancy has been associated with maternal anaemia, low birth weight and increased risk of preterm birth. These outcomes shape maternal survival, newborn health and long-term child development. Yet the disease rarely features in mainstream maternal health conversations and policy dialogues.

So, do people actually know this is a real problem in Kenya? Many health workers receive little or no sensitisation on Female Genital Schistosomiasis. Conversations around bilharzia remain focused on school-aged children, while adolescent girls and adult women are left out of the conversation. That silence is part of what keeps the disease neglected. Schistosomiasis is not only a health issue, but also a gender equity, sexual and reproductive health, and a social justice concern.

The government of Kenya is not ignoring the issue entirely. There is a National Neglected Tropical Diseases Master Plan (2023–2027), which outlines detailed strategies for controlling and eliminating diseases such as schistosomiasis. On paper, it is a strong and sensible public health approach.

But policy alone does not equal impact. The real work lies in implementation and in monitoring the indicators used to measure success. Progress should be assessed by whether women of reproductive age are systematically reached by interventions, whether front-line health workers are trained and supported to recognise and manage Female Genital Schistosomiasis, and whether surveillance data show sustained reductions in infection rates in endemic communities.

It is deeply unsettling that we have an official global category called “neglected diseases” when many of these conditions affect billions globally, including communities here in Kenya, and cause serious harm. The label does not reflect their insignificance, but the failure of systems to prioritise the lives they impact.

Medical and social justice advocate