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Addressing Female Genital Schistosomiasis (FGS) to Reduce HIV Risk: A Call to Action

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Poverty and lack of access to clean water puts young women and girls at an increased risk of the NTD schistosomiasis, which also increases vulnerability to HIV infection. Photo credit: Merck & Global Schistosomiasis Alliance, photographer Marcus Perkins.
Poverty and lack of access to clean water puts young women and girls at an increased risk of the NTD schistosomiasis, which also increases vulnerability to HIV infection. Photo credit: Merck & Global Schistosomiasis Alliance, photographer Marcus Perkins.

By Caroline Pensotti, WI-HER Technical Advisor

Female Genital Schistosomiasis (FGS) is a neglected tropical disease (NTD) with profound implications for health and well-being, particularly for women of reproductive age in sub-Saharan Africa. FGS is caused by Schistosoma haematobium infection, a species of parasitic flatworm found in freshwater, and is estimated to affect over 56 million women and girls worldwide.

Infection occurs when communities come into contact with contaminated water, leading to chronic inflammation and lesions in the female genital tract.  Symptoms of FGS are often non-specific (vaginal discharge, pain, bleeding) and can mimic those of a sexually transmitted infection. If left untreated, FGS can lead to infertility, stigma, and social isolation. Despite the scale and severity of FGS, lack of knowledge of the disease among community members and healthcare workers means that it is largely undiagnosed and underreported and is often misdiagnosed as an STI or early-stage cervical cancer.

The Connection Between FGS and HIV

In sub-Saharan Africa, communities with high rates of schistosomiasis also often face high HIV prevalence. Research indicates that FGS increases vulnerability to HIV infection by causing inflammation and erosion that disrupt the vaginal and cervical epithelium. Additionally, schistosomiasis can alter the body’s immune response to HIV.

This elevated risk disproportionately affects young women and girls, who already face high HIV rates in endemic regions. The effects are compounded by social determinants, such as gendered roles, poverty, and lack of access to clean water, which increases exposure to schistosomiasis. Without intervention, FGS silently undermines HIV prevention efforts, affecting communities already vulnerable to socio-economic, health, and environmental risk factors.

Barriers to Addressing FGS

One major barrier to FGS prevention and treatment is a lack of awareness within healthcare systems and affected communities. Many healthcare providers lack training to recognize FGS, and affected women may not seek help due to social stigma around reproductive health issues. Additionally, current health services often treat NTDs and HIV separately, failing to address the specific vulnerability of women affected by both diseases. While preventive chemotherapy using praziquantel is effective at treating schistosomiasis, it is rarely delivered as part of other reproductive health services or HIV screening, missing a crucial opportunity to protect women at high risk for both FGS and HIV.

The Path Forward: Integrated Health Interventions

Health systems within countries endemic for schistosomiasis must adopt integrated, cross-sectoral approaches that prioritize women’s health to tackle the dual impact of FGS and HIV. Cross-sectoral approaches require coordinated action across three main fronts:

  1. Education and Awareness: The first step in any intervention is raising awareness about the importance of early diagnosis and treatment. Training healthcare workers to recognize FGS symptoms, coupled with community health education, can enable women to seek care and reduce stigma.
  2. Integrated Health Services: Healthcare systems in affected regions should combine FGS screening, HIV testing, and reproductive health services with a “one-stop shop” approach. Health workers can reduce the risk of infection while also improving patient trust in health services by offering preventive chemotherapy alongside HIV prevention and testing during the same visit. Crucially, access to integrated services ensures that women’s unique health needs are addressed holistically rather than in a fragmented way.
  3. Policy and Investment: To improve health outcomes, governments, NGOs, and global health organizations must not only recognize FGS as a pressing women’s health issue but also fund targeted, integrated initiatives. Investments should focus on addressing the root causes and consequences of FGS by increasing drug access, strengthening healthcare infrastructure, and improving access to clean water and sanitation. The FGS Integration Group (FIG) is a coalition of organizations working together across sexual and reproductive health and rights, HIV, NTD, and WASH sectors to mobilize resources, political will, and commitment toward addressing FGS.

Why Addressing FGS Matters

When addressing FGS becomes a priority, we can create stronger interventions that have far-reaching implications for HIV prevention and health equity, enabling women to take care of their health and well-being. Tackling FGS directly reduces HIV vulnerability in high-risk populations and offers broader benefits to affected communities, creating a healthier, more equitable future where all women can access the health services they need.

We can protect millions from the dual burden of FGS and HIV when we bring FGS to the forefront of public health. When we better understand the connection between HIV and FGS, integrated inventions will allow the health community to fulfill the promise of universal health coverage and improve the lives of women and girls worldwide.

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