By Margaret Gyapong (Ghana Health Service)
It was really useful for me to attend the recent meeting in South Africa on Female Genital Schistosomiasis. I have never worked on Schistosomiasis before. Most of my work has been on Lymphatic Filariasis and Neglected Tropical Disease but I moved about a decade or so into malaria, Demographic Surveillance, maternal health and other areas of research. In recent times however, I find that I am being drawn back into Neglected Tropical Diseases. Hence my attendance at this all important meeting on Female Genital Schistosomiasis, and I find the emerging discussions intriguing. Clearly there are many research questions that still need to be answered on the relationship between schistosomiasis, reproductive health and HIV. Work needs to be done to get this issue on the radar of decision makers and scientists. To support this there is a lot that we can learn from the journey we took in Ghana to put Lymphatic Filariasis on the national and international health agenda.
There is evidence that more than a decade ago scientists were drawing attention to Female Genital Schistosomiasis so why is it not on the agenda? 25 years ago there was no Lymphatic Filariasis programme in Ghana and a lot of effort had to go into convincing the decision makers in the health sector that the disease was a problem and needed attention.
Work on Lymphatic Filariasis started kind of by mistake when in the early 1990’s some of us were posted to the north of the country to work on a Vitamin A supplementation trial. During field work we noticed a lot of people walking around with big legs and baggy pants (that were clearly disguising scrotal swelling, technically known as hydrocele). Coming from the South of Ghana, this was unusual and we decided to explore the issue in more depth.
Gathering the evidence
A survey we conducted in 1995 with lay field workers using local terms for the disease showed that over 12% of households reported at least one person with a big leg (lymphoedema (tissue swelling) or elephantiasis (skin/tissue thickening) of limbs). We spoke to the powers that be in the Ministry of Health at the time but the response was very much, “The disease doesn’t kill and there are many more burning issues such as malaria that needed urgent attention.”
Luckily for us the World Health Organisation’s TDR, the Special Programme for Research and Training in Tropical Diseases, was putting out calls for proposals at that time and we linked up with other countries and scientists to gather further evidence. From 1996-2001 we aggressively collected evidence on the epidemiology of the disease in the entire country and showed the highest prevalence in the north of the country, the number of working days lost due to disability from the acute phase of the disease, and varying cultural beliefs and practices about Lymphatic Filariasis. This enabled us present a much more complete picture to national policy makers.
But evidence alone wasn’t enough to provoke change, and we also engaged in activities which could more accurately be classed as advocacy. We realised that at the international level there were many people doing disease modelling who had probably never met a person with the condition. So we showed photos of people from the field – and to be honest many of them were pretty gory. But they got people’s attention. We also thought it was important for people affected by the condition to tell their story. Photovoice methodologies enabled community members to describe their lives before and after becoming disabled by Lymphatic Filariasis. We took one woman with us to a meeting in Geneva. This had a personal impact on scientists and policy makers. The photovoice stories on Lymphatic Filariasis moved some of the female policy makers almost to tears because they could relate to the way that women described their relationships with their bodies and the impact of Lymphatic Filariasis on their family and intimate relationships.
Why hasn’t their been more action on Female Genital Schistosomiasis
In 2005 my colleague and I did a review on gender and Neglected Tropical Diseases and I realised from the document (when I was preparing for the Female Genital Schistosomiasis conference) that as far back as 1992 issues related to Female Genital Schistomiasis had been documented. Scientists had indicated that sequelae from Female Genital Schistosomiasis such as infertility have an important social and pathological impact. They had also indicated that conditions may be undiagnosed because women would be more likely to present to a gynaecologist than an infectious disease specialist probably because Female Genital Schistosomiasis is not well recognised. Another interesting observation at the time was that Female Genital Schistosomiasis increases the risk of HIV infection because the lesion provides easier access to deeper vaginal cell layers during intercourse with an infected partner.
Why are we still talking about it today rather than acting?
Like Lymphatic Filariasis, schistosomiasis is a disease of poverty. It effects people living around rivers – people earning a living through their interaction with water, their children playing in water bodies and households rely on this water in their domestic lives. I think that if schistosomiasis was a disease like Ebola which anyone could get then perhaps something would have been done about it.
We also have to think about the social-cultural context. The people suffering are marginalised and find it hard to speak about issues related to their sexuality. Who can they talk to? How does a child have the words to describe what is wrong? We need to start listening to their stories. They will be graphic, but they are necessary.
Blood in the urine in certain cultures means you are a strong man and mature. Women may just think that they are bleeding between periods and that it is not important. When women bleed after sex because they have schistosomiasis (that is if they know it is schistosomiasis related) can they talk about it with their partners? What about when it causes infertility? In many cases the woman will be the one who is blamed and she will go through unnecessary tests. Then when she remains undiagnosed and unable to conceive she may well suffer stigma and possibly be abandoned. There are major gaps in our understanding of the genital manifestations of schistosomiasis including a lack of data on the possible psychological effects of dyspareunia and post coital bleeding in women with genital lesions.
Rolling out and scaling up
It is time to act on what we know and skill up health workers so that they can diagnose Female Genital Schistosomiasis either in the clinical context or during Mass Drug Administration. We need to think carefully about how and when integration into other services occurs. Integration at community level can only occur with joined up thinking at the top. Our task now is to ensure that an approach is taken that takes account of the health system as a whole rather than bombarding communities with a host of new vertical interventions.
And in all of this we need to remember that we are dealing not just with blood or urine samples, but with people who have names and faces and their suffering is unnecessary.