From invisible threat to possible prevention for Zambian women
Text and photos Ana Palacios from Livingstone (Zambia)
In Zambia, a silent parasitic infection endangers millions of women, increasing their risk of contracting human papillomavirus (HPV) and developing cervical cancer. Through the Schista! program, community workers bring science and hope into homes to fight disease and inequality. The Zipime Weka Schista! studio (‘Test yourself, sister!’) has introduced for the first time to vulnerable populations the possibility of self-testing for HIV and female genital schistosomiasis, a neglected tropical disease. If positive, local clinics confirm the diagnosis and begin treatment.
A few kilometers from the majestic Victoria Falls, near the triple border with Zimbabwe and Botswana, lies the community of Ngwenya, in the district of Livingstone (Zambia), an enclave of quarries where many women in the area work breaking stones for long days.
The day begins before the sun caresses the red dust of the slopes. From the first hour, you can hear the hammers hitting the stone with a constant and tiring rhythm. Sitting there, among mountains of stones, Costance Pelekelo (in the image on the left) works. He has tanned hands, strong arms and serene eyes. Every morning, the echo of the blows mixes with the wind, which raises small clouds of dirt that irritate your eyes and stick to your skin.
It was there, near her home, that she was first told about female genital schistosomiasis (FGS). “When the health workers came to my house to suggest taking the test, I said no,” he recalls. «I didn’t understand what the test was for. It scared me. But when they explained to me what it really was, it seemed good to me and I agreed. “Now I know that the disease is dangerous and I talk to my daughters so that they are not afraid.”
What Costance didn’t know then, like most women in her community, is that FGS is a neglected tropical disease (NTD) and that it is the second most dangerous parasitic disease after malaria, a disease that affects an estimated 56 million women in sub-Saharan Africa. A disease linked to poverty and lack of sanitation. A disease that lurks in rivers, ponds and puddles where women wash clothes, collect water or bathe their children daily. They submerge their feet and hands to carry out these daily tasks and a few seconds in the water are enough for the female genital schistosomiasis larva to penetrate the skin. Gloves or wellies to avoid contact would be more than enough to prevent it, but ignorance and lack of information make it easier for the disease to spread uncontrollably.
Intertwined threats
Most disturbingly, FGS opens a direct path to other threats to reproductive health. The lesions it causes in the mucosa facilitate the entry of the human papillomavirus (HPV) and increase the risk of cervical cancer, the second most lethal among African women. A disease that facilitates the transition to others if it is not treated in time.
Costance’s transformation is the result of the community awareness work integrated into the Schista! program. Through house-to-house visits and counseling sessions, trained local women demystify FGS, HPV and HIV. By offering the possibility of self-diagnosis at home, they reduce fear and increase participation, especially among women who might never visit a clinic. The tests are simple: some swabs and a small bottle for the urine sample. To carry them out, long shared moments explaining the procedure are also necessary.
The FGS is an unseen danger. The parasite penetrates healthy skin and, after a few days sailing through the bloodstream, its eggs become trapped in the tissues of the reproductive system, causing chronic inflammation, bleeding, pain, infertility and even complications during pregnancy. But most women have never heard his name. The lack of knowledge is so profound that many believe that their symptoms are related to sexually transmitted infections (STIs). In communities where stigma weighs like a sentence, the fear of being singled out paralyzes them and they do not seek medical attention.
“Before they came to my house, I didn’t know anything about this,” says Regina Mweeba, also a stonecutter in Ngwenya, “but now that I understand it, I tell my neighbors and friends so they can share their suffering.” His testimony reflects the biggest obstacle: shame. The suspicion of infidelity, the fear of rejection by their partner or the idea that an intimate illness makes them guilty or undesirable end up raising a barrier that, for many, is difficult to overcome.
An integrated response
In this context of silence and misinformation, the program Schista! emerges as an innovative response. It was born from the vision of Dr. Amaya Bustinduy, a specialist in pediatric infectious diseases and a leader in global health, who clearly saw that treating each pathology separately was ineffective. “HIV on the one hand, HPV on the other hand, cervical cancer…”, he explains. “A comprehensive model was needed to be able to serve women completely in a single visit.”
The initiative, promoted together with the London School of Hygiene & Tropical Medicine and the Zambian organization Zambart, is based on a simple premise: bringing information and diagnosis to homes. There, community workers like Georgina Munkombwe travel for miles on foot, carrying self-diagnosis kits in their small portable refrigerator and infinite patience to listen and explain.
“Many believe that if they come out positive it will be the end,” says Georgina. «Others think that tests hurt. My task is to remove that fear from them. Its presence, close and unhurried, turns prevention into an act of trust.
Adolescent girls, the most vulnerable
Young women make up one of the most vulnerable groups. In her small adobe house in the Kalundu View neighborhood – located in the Kafue district, near Lusaka, the country’s capital – young Astridah Makwama listens carefully to Melisa Choongo’s instructions to learn how to perform self-diagnosis tests for HIV, HPV, STIs and FGS and give the samples to Melisa for subsequent analysis in the laboratory. Like many rural girls, Astridah lives far from health centers and lacks enough information about her own body. Their willingness to learn is, in itself, a form of resistance.
The possibility of taking tests in an intimate and private environment, such as your own home, is decisive in encouraging your participation. If the test is positive, you will go to the local clinic, where trained midwives will be able to confirm the infection and detect possible lesions caused by HPV. These are crucial visits to identify risks before they lead to cervical cancer.
In the project’s clinical laboratories, technicians explain how urine filtration, microscopic analysis and PCR tests reveal infections that could not be detected with the naked eye. In a country with limited resources, this diagnostic capacity is vital to breaking the cycle of disease. And also to detect HPV, which often progresses without symptoms and can turn into cervical cancer if not identified in time.
Treatment for FGS is simple. It is based on praziquantel, an economical and effective antiparasitic recommended by the World Health Organization (WHO). Its action eliminates adult worms and slows the progression of the disease. The difficulty is not in the medication, but in reaching women before the damage is irreversible. Access, information and trust are as essential as the tablet itself.
Women who speak and transform
Among the women who have gone through this path is Prisca Muleba. «For me it was a routine check-up due to my HIV status and because my mother died of cancer. Everything changed when I took the tests. I received treatment and now I feel stronger. It is very important to spread information about the “bilharzia”, which is what female genital schistosomiasis is known locally. Prisca is today one of the spokespersons for the program who tells other women about her personal experience with the project. Her story reveals what is at stake for so many women: health and inequality.
There is also the case of Mervis Siya Kwasiya, who has participated in the program for four years and today encourages other women: «I have been part of this study since 2022. I tested positive for HPV and had a biopsy. I am a champion of the study and I help by encouraging other women to get tested.
The community assistants talk about long walks in the sun, isolated houses and difficult conversations. But also the deep satisfaction of knowing that every door they knock can change a destiny. Because FGS is not just a medical problem: it is a direct consequence of the contexts of poverty that enhance social, economic and cultural inequalities.
Spokespeople and social workers have formed a group of community leaders, the Schista Sisters. They meet frequently to articulate and unify the discourse that they must convey to the women in their neighborhoods. They also receive detailed training on the diseases for which they will provide self-diagnostic tests, to be able to explain them better and correctly convey information about the importance of prevention and the fatal consequences if not done.
Towards a possible future
Schista! It has become a model that combines science, education and support. In a tool to dismantle stigma and rebuild trust. In a space where women can talk, ask and decide.
By 2026, the program has already assessed more than 2,500 women in Zambia since it began in 2022. The Ministry of Health is closely monitoring the project and its impact on communities. The initiative is demonstrating positive results in the identification and prevention of diseases that cut across reproductive health and is already underway in other African countries such as Ivory Coast, Malawi, Uganda, the Democratic Republic of the Congo and Ghana.
The linking of test results for the detection of FGS, HIV and HPV is part of the same reality: illness, vulnerability, stigma and inequality are intertwined. Eliminating cervical cancer by 2030 and addressing global inequalities requires a multifaceted approach that improves access to preventive services by promoting gender equality.
For the women of Ngwenya, Kalundu View and many other communities in Zambia, this intervention means much more than a diagnostic test. It is a route towards autonomy, information and survival. Facing an invisible illness requires much more than medications: it requires time, listening and presence. And Schista! offers precisely that. The program demonstrates that, with knowledge, access and support, it is possible to break this circle of invisibility that is threatening the health of millions of women.
