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9 August 2024

We’re encouraged to see The Guardian bringing attention to the critical issue of Female Genital Schistosomiasis (FGS), a condition that affects millions of women and girls, yet remains largely neglected. Below are key excerpts from an article originally published by Caroline Kimeu in The Guardian on 2 August 2024, shortly after the issue was raised at the AIDS2024 conference, highlighting the urgent need for action.

Female genital schistosomiasis (FGS) affects an estimated 56 million women and girls, mostly in sub-Saharan Africa, but remains a largely unknown, neglected condition. Easily treated if diagnosed quickly, if left untreated it can lead to reproductive organ damage, infertility, and is now associated with an increased susceptibility to HIV.

The FGS Integration Group (FIG), a global coalition set up in 2022, is campaigning for governments and donors to incorporate FGS treatment into their sexual and reproductive health programmes.

“We are in danger of regressing on HIV prevention goals,” says Yael Velleman, co-chair of FIG and Director of policy and innovation at the charity Unlimit Health. If we have this disease that is increasing threefold the risk of infection, it’s going to take a lot longer, and cost at lot more to end the pandemic.”

Data on the prevalence of the disease in Kenya is limited, but LVCT says of the 2,714 women who underwent its cervical cancer screenings in western and coastal regions since April, 11% had FGS. In a randomised study conducted in June in Junju, a small coastal village in Kilifi county, 11 out of 19 women tested positive.

“That shows that the problem is huge, that many women are suffering in silence because they are not informed about it,” says Kiti Mwangomea reproductive health researcher with LVCT.

Gynaecologist Victoria Gamba leads FGS training in Kenya and taught the team at Kilifi county hospital to spot the condition. “The medical profession has contributed to the neglect of this disease, and I want to help undo that,” she says. “Health practitioners need access to the right information and diagnostics to end the neglect.”

Read the full article here or download the pdf.