Tackling FGS - A priority for equality

Kim Ozano: 00:00:04

Hello and welcome to the Connecting Citizens to Science Podcast.

Kim Ozano: 00:00:06

I'm Dr.

Kim Ozano: 00:00:07

Kim Ozano.

Kim Ozano: 00:00:08

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

Kim Ozano: 00:00:15

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Kim Ozano: 00:00:24

We hope you enjoy!

Kim: 00:00:29

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

Kim: 00:00:32

We have a really important episode today.

Kim: 00:00:35

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

Kim: 00:00:43

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

Kim: 00:01:08

Victoria Gamba, who is a gynaecologist based in Kenya.

Kim: 00:01:12

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

Kim: 00:01:15

Hi Pamela.

Kim: 00:01:16

What is FGS?

Pamela: 00:01:17

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

Pamela: 00:01:35

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

Kim: 00:01:42

And how do women and girls come across the parasite?

Pamela: 00:01:45

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

Pamela: 00:01:53

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

Pamela: 00:02:07

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

Pamela: 00:02:17

And that's how you get the infection.

Pamela: 00:02:19

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

Pamela: 00:02:29

It is not.

Pamela: 00:02:29

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

Kim: 00:02:33

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

Kim: 00:02:39

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

Kim: 00:02:46

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

Pamela: 00:02:50

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

Pamela: 00:02:57

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

Pamela: 00:03:12

Stigma is a real issue.

Pamela: 00:03:13

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

Kim: 00:03:18

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

Kim: 00:03:31

Is that right?

Pamela: 00:03:32

That's absolutely right.

Pamela: 00:03:33

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

Pamela: 00:03:38

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

Pamela: 00:03:49

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

Pamela: 00:03:53

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

Pamela: 00:04:05

Every day.

Pamela: 00:04:06

So just imagine what that would be like for you.

Pamela: 00:04:08

It's a terrible, terrible condition to have.

Kim: 00:04:11

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

Kim: 00:04:22

Thank you for highlighting that.

Kim: 00:04:24

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

Pamela: 00:04:33

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

Victoria: 00:04:40

Very good question.

Victoria: 00:04:42

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

Victoria: 00:04:47

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

Victoria: 00:04:54

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

Victoria: 00:04:59

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

Victoria: 00:05:03

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

Victoria: 00:05:24

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.

Victoria: 00:05:30

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

Victoria: 00:06:03

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

Pamela: 00:06:15

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

Pamela: 00:06:22

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

Pamela: 00:06:31

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

Rhoda: 00:06:46

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

Rhoda: 00:06:57

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

Rhoda: 00:07:08

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

Rhoda: 00:07:13

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

Rhoda: 00:07:21

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

Rhoda: 00:07:26

Also resources are also lacking in these public health facilities.

Rhoda: 00:07:32

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

Pamela: 00:07:48

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

Rhoda: 00:08:03

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

Rhoda: 00:08:11

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

Rhoda: 00:08:17

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

Rhoda: 00:08:21

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

Rhoda: 00:08:27

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

Pamela: 00:08:37

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

Pamela: 00:08:42

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

Pamela: 00:08:51

Do you see that becoming a possibility in the future?

Rhoda: 00:08:54

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

Rhoda: 00:09:05

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

Rhoda: 00:09:10

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

Rhoda: 00:09:22

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

Rhoda: 00:09:29

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

Pamela: 00:09:40

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

Pamela: 00:09:43

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

Pamela: 00:09:56

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

Victoria: 00:10:05

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

Victoria: 00:10:11

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

Victoria: 00:10:20

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

Victoria: 00:10:25

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

Victoria: 00:10:52

For sure that woman won't come back.

Victoria: 00:10:54

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

Pamela: 00:11:03

mm-hmm.

Victoria: 00:11:04

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

Pamela: 00:11:13

mm-hmm.

Victoria: 00:11:14

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

Victoria: 00:11:19

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

Victoria: 00:11:43

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

Victoria: 00:11:48

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

Pamela: 00:11:52

Indeed.

Pamela: 00:11:52

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

Pamela: 00:12:10

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

Pamela: 00:12:15

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

Pamela: 00:12:21

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

Christine: 00:12:47

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

Christine: 00:13:00

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

Christine: 00:13:08

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

Christine: 00:13:17

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

Pamela: 00:13:27

Again, we know that knowledge is power.

Pamela: 00:13:29

We need to empower women.

Pamela: 00:13:32

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

Pamela: 00:13:43

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

Rhoda: 00:13:53

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

Rhoda: 00:14:05

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

Rhoda: 00:14:14

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

Rhoda: 00:14:21

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

Rhoda: 00:14:27

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

Rhoda: 00:14:33

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

Rhoda: 00:14:39

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

Rhoda: 00:14:50

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.

Rhoda: 00:14:59

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

Rhoda: 00:15:09

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

Rhoda: 00:15:19

It's also good to engage the community leaders.

Rhoda: 00:15:22

The men were also invited.

Rhoda: 00:15:24

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

Pamela: 00:15:28

mm-hmm,

Rhoda: 00:15:29

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

Rhoda: 00:15:43

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

Pamela: 00:15:47

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

Pamela: 00:15:55

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

Pamela: 00:16:02

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

Christine: 00:16:06

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

Christine: 00:16:20

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

Christine: 00:16:24

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

Pamela: 00:16:40

Thank you so much for all your insights.

Kim: 00:16:42

Thanks Pamela.

Kim: 00:16:43

That was a wonderful conversation.

Kim: 00:16:44

Rhoda.

Kim: 00:16:45

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

Rhoda: 00:16:50

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

Rhoda: 00:16:54

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

Rhoda: 00:17:01

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

Rhoda: 00:17:17

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

Rhoda: 00:17:31

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

Kim: 00:17:37

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

Victoria: 00:17:41

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

Victoria: 00:17:56

It brings about continuity.

Victoria: 00:17:58

It allows you to penetrate further into the communities.

Victoria: 00:18:02

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

Victoria: 00:18:05

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

Victoria: 00:18:15

What are their challenges?

Victoria: 00:18:17

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

Kim: 00:18:27

Great.

Kim: 00:18:28

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

Kim: 00:18:32

Wonderful.

Kim: 00:18:33

Mm-hmm.

Kim: 00:18:33

and Christine, one piece of advice, please.

Christine: 00:18:36

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

Christine: 00:18:52

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

Christine: 00:18:59

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

Christine: 00:19:13

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

Christine: 00:19:18

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

Christine: 00:19:20

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

Christine: 00:19:27

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

Kim: 00:19:46

And finally, to take us home.

Kim: 00:19:47

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

Pamela: 00:19:50

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

Pamela: 00:19:59

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

Pamela: 00:20:08

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

Pamela: 00:20:29

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

Pamela: 00:20:42

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

Pamela: 00:20:45

Treat people with Praziquantel.

Pamela: 00:20:47

Don't wait for diagnosis.

Pamela: 00:20:48

Treat upon suspicion.

Pamela: 00:20:50

Treat water and sanitation.

Pamela: 00:20:52

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

Kim: 00:21:13

Thank you Pamela.

Kim: 00:21:14

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

Kim: 00:21:20

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

Kim: 00:21:26

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

Kim: 00:21:36

Thank you very much, and bye for now.

Kim: 00:21:38

Bye everyone.

Rhoda: 00:21:38

Bye.

Rhoda: 00:21:39

Thank you so much.

Rhoda: 00:21:40

Bye-bye.