We have a really important episode for you as we approach World Neglected Tropical Disease (NTD) day on 30th January calling for all to act together and act now.

We are going to be talking about female genital schistosomiasis, which affects approximately 56 million girls and women in sub-Saharan Africa. Host, Kim Ozano is joined by co-host Pamela Mbabazi from the United Nations with guests; Rhoda Ndubani, who is a study manager for a female sexual reproductive health screening programme for FGS in Zambia, Christine Masong, who is a PhD student with Liverpool School of Tropical Medicine undertaking research in Cameroon, exploring how culture and the social structures affect illness experiences and treatment pathways of girls and women with FGS, and finally, Dr. Victoria Gamba, who is a gynaecologist and advocate for FGS awareness based in Kenya.

If you would like to understand more about FGS, here's some resources for you:

A call to action for universal health coverage: Why we need to address gender inequities in the neglected tropical diseases community

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7067373/

Discussion paper the gender dimensions of neglected tropical diseases from the Access and Delivery Partnership in partnership with LSTM

https://adphealth.org/upload/resource/2523_ADP_Discussion_Paper_NTDs_211119_web.pdf

Useful factsheets on FGS:

Japanese: https://adphealth.org/upload/resource/2523_ADP_Discussion_Paper_NTDs_211119_web.pdf

English: https://adphealth.org/upload/resource/2658_ADP_NTDs_and_Gender_factsheet_280120.pdf

More about our guests;

Dr. Pamela Sabina Mbabazi - Department of Control of Neglected Tropical Diseases (NTDs), WHO headquarters in Geneva

Presently, Pamela is working as a medical epidemiologist in the Department of Control of Neglected Tropical Diseases (NTDs), at the WHO headquarters in Geneva, Switzerland. Her current research interests include strengthening monitoring and evaluation for neglected tropical diseases programmes particularly in vulnerable populations with a focus on women and children, notably for female genital schistosomiasis (FGS).

She has authored several publications in peer reviewed journals, mainly related to methodologies for tracking public health gains for neglected tropical diseases and the effects of co-morbidities.

Dr. Victoria Gamba - Obstetrician and Gynaecologist, Private Practice/Ministry of Health Kenya/University of Nairobi

Passionate about participatory efforts to reduce and eliminate vaccine preventable illnesses and an advocate of gender equality and promoting sexual and reproductive health rights of women and girls, Victoria is a resident obstetrician and gynaecologist at a private health group and a part time consultant with the Ministry of Health Department of Vector-borne and neglected tropical diseases in collaboration with LVCT-health Kenya.

Rhoda Ndubani -Study Manager, Zambart 

Rhoda is the study manager at Zambart on a study called ‘Zipime Weka Schista’, a longitudinal Cohort Study focusing on Integrating Female Sexual Reproductive Health Screening in Zambia focused on one-stop self-sampling for schistosomiasis and other genital infections. The aim of the study is to develop a holistic approach for the community-based diagnosis of female genital schistosomiasis (FGS) through a comprehensive package for sexual and reproductive health screening including human papillomavirus (HPV), sexually transmitted infections (STIs), HIV and Schistosomiasis across endemicity settings (from high to low transmission) in Zambia. The duration of the study is from 2021 to 2025. And they aim to recruit 2500 women in the cohort.

The women are screened for FGS and HPV using self-sampling in the household and at the health facility. The women are provided with information and instructions on how to do the self-sampling. The study is observing high acceptability so far. The next stage of the study is to run validation of the self-samples taken at home and the ones collected in the health facility. 

Makia Christine Masong (Msc) - PhD student, Catholic University of Central Africa; MTN-OCEAC fellow

Christine is a social scientist from Cameroon, where, with the immense support from the KfW  MTN/OCEAC PhD scholarship for researchers from Central Africa sub-region is conducting research on neglected tropical diseases. She is currently completing her thesis in medical anthropology on the social representations of  FGS including the sexual and reproductive health, mental and socio-economic impacts on the lives of young girls and women in Cameroon. Christine works with community members and fore-line health workers at the primary health care level to understand the existing cultural and social dynamics which encourage the continued incidences of this gynaecological condition, and also how the response towards its management is organised within these same communities and within the formal health system.  

Relevant links:

WHO road map for NTDs: https://www.who.int/publications/i/item/9789240010352

ipime Weka Schista! (Do self-testing sister!): https://www.lshtm.ac.uk/research/centres-projects-groups/zipime-weka-schista

https://journals.plos.org/globalpublichealth/article/file?id=10.1371/journal.pgph.0000007&type=printab

le https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463188/

https://www.eliminateschisto.org/blog/gsa-celebrates-international-womens-day

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Hello and welcome to the Connecting Citizens to Science Podcast.

I'm Dr.

Kim Ozano.

This is a podcast about how communities and people join with researchers and scientists to

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We hope you enjoy!

Hello listeners and welcome to the Connecting Citizens to Science Podcast.

We have a really important episode today.

We are going to be talking about female genital schistosomiasis, which affects approximately 56

I am here with co-host Pamela Mbabazi from the United Nations and guest Rhoda Ndubani, who is a study manager for a female

Victoria Gamba, who is a gynaecologist based in Kenya.

So let's start by saying hello to co-host Pamela.

Hi Pamela.

What is FGS?

The easiest way to describe it, it's a damage of the female genital tract that results from the deposition of tiny

This may sound like a big word, but more commonly people will know this as bilharzia, that's the easiest way to remember it.

And how do women and girls come across the parasite?

The infection occur when women, girls, or even any individuals, uh, get in contact with infested water.

So you may be out, going for a swim and, um, in a fresh water body that's infected, you could be going to do your regular chores, washing

Just the fact that you have skin contact with an affected water body source where this parasite resides, it

And that's how you get the infection.

It is not a sexually transmitted infection despite the word, uh, female genital schistosomiasis, seeming to imply

It is not.

It's an infection that's acquired by getting in contact with infected water.

I know that there's stigmatisation around FGS because of the area where the infection occurs.

What is the impact of that stigmatisation, especially as often it's misdiagnosed as a sexually transmitted diseases.

What's the impact for women in the areas where it's prevalent?

The main thing is that because of the anatomy that's affected, it's a private, intimate part of a human being.

This is an aspect of our human existence as females for which we are valued in most social cultural contexts, your reproductive potential

Stigma is a real issue.

Related to that, of course, is mental health and several other consequences that accompany that.

Just to name a few of those consequences to set up the rest of the episode; I understand that it can

Is that right?

That's absolutely right.

I'll use one explanation to show you how terrible this infection is when you have it.

Is that for every pair of worms that are circulating in your blood system, on average, each

Just imagine if you have like 200 worms, now multiply that by 500.

If you have 300 worms, a thousand worms, just keep the maths going and that equates into the equivalent of

Every day.

So just imagine what that would be like for you.

It's a terrible, terrible condition to have.

Yeah, I think that analogy's really important to understand the severity and also to recognise that it's

Thank you for highlighting that.

But the good news is there is global action on FGS, and we have three great guests with us today, which I'm gonna

Victoria, what do you know about FGS in the course of your work and how has this changed your own practice?

Very good question.

I'm an obstetrician and gynecologist practicing in Nairobi, Kenya.

First and foremost, we knew about neuro genital schistosomiasis, all the way from undergraduate studies.

However, the genital aspect has been very silent in most of the textbooks.

You don't get to see exactly how it looks like.

And even as we continued just doing our usual screening tests or speculum examination, the only thing we knew how

If you don't know what it is, as long as it's not on the bad end of the spectrum, you allow the women to go home.

At that point we still didn't know exactly how FGS presents or looks like during speculum examination, but then through our

I think now it has influenced our practice to be more aware about how FGS looks like, whenever you're doing any screening

Clearly you as a professional have had to address some misconceptions about, the disease.

As you said, uh, basically a low clinical index of suspicion, which in the course of your work, you also

Rhoda, what type of innovations, do you think, uh, could be done or are necessary to be able to overcome the type of

There's a lot of challenge to diagnose FGS in most of our health facilities due to limited resources and of course equipment.

I must say, in one of studies we did on FGS, one of the things that we actually did identify was the

FGS is not something that is routinely tested in the health facility.

So if a woman presents those symptoms, the first test that will be given is either on sexually transmitted infections or UTI.

So already there is that barrier and also chances of being misdiagnosed.

Also resources are also lacking in these public health facilities.

So there's need for more resources and also more equipments that could help diagnose FGS at the moment in most of the health

How can science and research make sure that we bridge this knowledge gap such that a woman is able to get a diagnosis

I think one of the things we could do to improve on that is of course, provide the women

First of all to find out how can they get the parasite, what can they do to prevent getting the parasite?

And also where can they go to seek health services if they have FGS.

I think it's impacting that knowledge amongst community members that will help us in the long run to fight FGS.

Once the community's aware about it, they know how to prevent FGS, or they know where they can seek services for FGS, I think

One can't help but think of self-testing as well as a possible option.

The testing for Covid-19 was quite rigorous, but now it's the diagnostics and research has moved to

Do you see that becoming a possibility in the future?

In the studies that I've worked on, in the study that I'm currently working on, we are using the

This is done in the community at household level as well as the health facility.

When we go in the households to provide the self sampling tests, you have to, first of all give the women the knowledge on FGS

We've noticed in the study is that there's high acceptability of the self-test, which is very positive.

Of course there could be challenges with, uh, providing these self-test kits, the costs, those, um, limited resources, I

We hope to see that something like that actually comes into reality.

And then you can look back to us, to WHO, to work with our partners and figure out how to look for subsidies and work with governments

Victoria, which innovative ways do you see us trying to actually get the gynecologists in our type of settings to engage more on FGS?

The most important thing at this point is to remember you're dealing with women.

So when you use a human-centered approach or a human lens, when you look at that woman, she carries a lot of things.

She might have a breast disease, she might have uterine disease, she might have all this.

And I want to thank all the stakeholders that have put forward, you know, different programmes that are bit siloed at the moment,

For sure that woman won't come back.

So to ensure that continuity is there, I think number one is, leveraging on the existing programmes that are available...

mm-hmm.

...and just looking for ways where we can integrate things because I mean, um, you're a woman, going

mm-hmm.

...so you can imagine having to do like different speculum examination for each clinician that you see.

So if there's any way that we can be able to have the integrated algorithm, or this is how FGS looks like; if you're screening

Basically it's more about calls for integration and being accountable to these women.

I think, uh, we ought to give them what they deserve.

Indeed.

You have highlighted several ways in which possibly there are latent opportunities that we are underutilising,

And indeed, WHO put aside some guidelines of how this could be done over the life course.

We need to be centered on the woman as a whole, not, not an anatomy or a disease per se.

So from Christine would like to hear, what would be your suggestions from the perspective of a community social scientist; how do you see

Young girls are in a community, so the idea of this podcast being about reaching communities is important

In most cases, the young girls are either under older women or under men; husbands or fathers or uncles.

There is something important reaching out to the whole community as one, letting the information go further than just the

So I think there's a lot about sensitisation on a large community at once, not just targeting young

Again, we know that knowledge is power.

We need to empower women.

We need to empower girls, not only to strengthen the agency that they already have themselves, but also to be stronger placed to

So what are some of the ways you see this being done in a manner that's sustainable and effective in the

We use drama performances to raise awareness about FGS in the community amongst the girls and women and also to inform women

We did train a drama group in the community, the drama group went and performed drama scripts relating to FGS.

We did get quite a good response from the women, um, after they learnt more about FGS through the drama.

And I must say that during the drama performance, you could see women, um, asking more questions.

When we talked about the symptoms for FGS, they became very attentive and asked a lot of questions about that.

Later on they would actually accept to go and be tested for FGS.

I must say that, um, you know, as we raise this awareness, as we give this knowledge about FGS to

Looking at our African context, there are times where a woman needs to get permission from their spouses, to go and have some of these tests.

So as we did the drama, we also, uh, tried to invite the men's also to come for these, uh, performances

We also engaged quite a number of community leaders, which I think is also very important as you

It's also good to engage the community leaders.

The men were also invited.

During these drama performances, we also produced brochures...

mm-hmm,

...uh, that had more information about FGS, which we gave out to the men, but also even the women, they also asked for

I would say it's very important to bring in all these strategies.

Thank you so much once again, Rhoda, for highlighting the intersectionality with several other things that

While we address these issues, we know that um, we really need our males to also step up and be part of this.

We know that to address FGS, we also need the agency and participation of males.

There is the issue around power and gender decision making is mostly in the hands of men, in most of the cultures, for

This is something the men have more of a monopoly on.

I think there is the gender dynamics and there are also other things that play a huge role there, but empowering

Thank you so much for all your insights.

Thanks Pamela.

That was a wonderful conversation.

Rhoda.

Could you give us one piece of advice for those working in FGS and trying to reach communities.

It's very important to engage communities as we do research.

One of the things is bringing on board, uh, the different community stakeholders within the community.

As you start your project, make sure that the community leaders, uh, community-based organisations are involved at the beginning of the

It is also important to make sure that you give out more information, the right information about your research to

At the end of the day, uh, it's what gives you the positive response and the best results for your research.

Victoria, please, one piece of advice for others in your position.

One of the things that I do want to bring out is, as Rhoda has said, it's mostly about engaging all stakeholders

It brings about continuity.

It allows you to penetrate further into the communities.

And at the end of the day, you also have to listen.

I know we do come up with, um, approaches that are textbook, but you also have to listen, look,

What are their challenges?

Why are they doing certain activities so that, you know, you bring about an intervention that can work and it's

Great.

So generate that demand and make sure that the programmes are sustainable long-term.

Wonderful.

Mm-hmm.

and Christine, one piece of advice, please.

The first thing is to encourage anybody wanting to work in communities, to reach out to communities, because

This means meeting the people themselves, working with their social structures, engaging with them at once.

The idea of ownership is something which is key for us in social science because I won't just come

You have the traditional health workers, you have the traditional birth attendance.

These are ladies who know the communities, they know the people.

Once you meet these women and explain what you want to do, that's already a huge step in getting access to other women.

So there's a whole mechanism, which is based within communities and just a bit of understanding, stakeholder mapping around these

And finally, to take us home.

Pamela, what piece of advice would you like to end the show on?

I would like to point out that uh, the WHO member states have endorsed a roadmap for addressing

In this we have a goal to eliminate morbidity due to schistosomiasis and female genital schistosomiasis is one of them.

This goal is very well aligned also with the intention to eliminate cervical cancer by the year 2070 so it'll be a shame

I would call on everyone to familiarise themself with the strategic document that's been put out and the

Preventive, chemotherapy, treat, treat, treat, treat.

Treat people with Praziquantel.

Don't wait for diagnosis.

Treat upon suspicion.

Treat water and sanitation.

We need to give people better water, and most importantly also for those that have established morbidity, we really

Thank you Pamela.

Wonderful pieces of information there for, for the audience to act on and, um, some calls to action as well.

So thank you to all of our guests today and the wonderful co-host, Pamela, thank you for your participation.

And to our audience and our listeners, please don't forget to like, rate, share, and subscribe so we can continue to bring the

Thank you very much, and bye for now.

Bye everyone.

Bye.

Thank you so much.

Bye-bye.