November 17, 2021
No Woman Left Behind - Frances Reid
Program Director at World Ovarian Cancer CoalitionGuest
Hundreds of thousands of women are diagnosed with ovarian cancer each year. With no official screening program and symptoms often spotted late, the burden especially falls on lower to middle-income countries.
Frances Reid, program director at the World Ovarian Cancer Coalition joins us on World Gynecologic Oncology Day to discuss the launch of the new adaptation of the Every Woman Study – the first-ever study of its kind looking at lower and middle-income countries.
By giving a voice to women internationally, the coalition’s ambitious goal is to close the gap between high and low-income countries and build a better future for women with faster diagnosis and access to the best possible care.
“Over the next 20 years, the burden of ovarian cancer will be felt disproportionately by lower and middle-income countries.”
HANNAH LIPPITT: Hello and welcome to the Totally Clinical podcast brought to you by Teckro. Totally Clinical is a deep dive into the freshest trends, big-time challenges and most excellent triumphs of clinical trials. I'm Hannah, your host. Join me as I chat with industry experts, trailblazers, thought leaders and, most importantly, the people benefiting from clinical research. So, tune in, settle back and don't touch that dial. It's time to get Totally Clinical.
HANNAH LIPPITT: Back in November 2021, Francis Reid, program director at the World Ovarian Cancer Coalition, joined me for an update on the Every Woman’s Study, the first ever study of its kind, addressing the evidence gap relating to the experiences of women with ovarian cancer around the world. Now the goal of the study is to ensure every woman has the best chance of survival from this deadly disease no matter where she lives. Well, today, Francis is back for another update on the study's progress and what we can expect in 2023.
Welcome, Francis. Thanks so much for being here. I touched on the purpose of the Every Woman's study just now in the introduction, but could you explain to the listeners a bit more about the study's history and objectives?
FRANCES REID: Thank you, Hannah. And it's lovely to be back. So, yes, in 2018, we wanted to establish a patient experience evidence base, as you've described. And we developed and ran an online survey, which was completed by over 1,500 women in 44 countries. And it gave us a clear direction on the core challenges, if you like, that women face in terms of being able to survive and live a good life. But it also gave us opportunities. And what was really interesting was that despite these common issues, each country where we were able to show there were country differences had a different mix of the problems. So, for example, in some countries, early diagnosis wasn't such an issue. It was quite a bit easier to achieve. But in other countries it took a lot longer. But maybe in the country with early diagnosis, they had problems accessing the best possible care for women. So, it really gave us this picture that by looking at what was going on within a country and comparing it to other countries, it would give us opportunities for progress. So that was the 2018 study. However, there was a great big caveat, and that was that 95% of our respondents came from high income countries. And in actual fact, only 30% of the women in the world live in high income settings. So, it meant there was a real data gap for low- and middle-income countries. And we know anyway, from literature and from commentary that data on cancer isn't sufficient in many low- and middle-income countries to assist with things like planning and advocacy and so forth. So, we really wanted to try and address that issue. So, we partnered with the international gynecological cancer society, and we've developed a low- and middle-income edition. It's also really important because ovarian cancer is on the rise. So, there are around 314,000 cases a year now and 210,000 deaths a year globally. That's set to increase 40% by 2040. But actually, when you look at where the biggest rises are going to be, they're much, much bigger in developing countries. So, for example, I know in Zambia because I was looking at the figures just a couple of days ago, their cases are due to increase by 122% in the next 20 years. And this - contrasting with the falls, the expected falls in cervical cancer by 2040 through the amazing work of the cervical cancer elimination strategy, it’s likely to mean that ovarian cancer will be, in fact, the biggest gynecological cancer killer in the world. So, it's something that we feel we really need to start looking at now, and we need to start developing that evidence base and helping countries determine what their best course of action is going to be.
HANNAH: How have you changed the study to make it more accessible in the countries you’re targeting?
FRANCES REID: So, we've altered the study to make it achievable in low- and middle-income countries. So, before it was online. And it was a very lengthy survey. Now it can be done on paper in a clinic. It's been run through hospitals, and it can be done by email or WhatsApp links, and it can be done with a researcher interviewing a woman as well. So, it's really opening up accessibility. It's in 31 languages, we have teams working to try and implement the study in 24 low- and middle-income countries and we have around about 110 and 115 hospitals involved around the world. So, it's actually turned into this mammoth project, but we hope will actually really help develop a solid evidence base for the global picture. But also importantly, we're trying to get enough data from each country that each country will have its own standalone picture and can use that to help advocate for change and to prioritize what they're going to work on.
HANNAH LIPPITT: Before we go into some of the results from the study so far, could you explain more about why the disease is so difficult to diagnose? Because I think this is something that makes it, you know, so deadly because initial symptoms are so difficult to diagnose.
FRANCES REID: Yeah, that is correct. It's very difficult to diagnose. We know from our first study the average time to diagnosis from a woman experiencing symptoms was 31 weeks. Which you know, well over half a year. And we know time makes a difference and it might impact on the stage of diagnosis - it certainly impacts on a woman's ability to start and tolerate treatment. And we know that actually many women don't even get as far as treatment because they're diagnosed when they're so poorly and in such a bad condition. Overall, five-year survival rates, even in high income countries, are below 50%, and most women are diagnosed at advanced stage. That all sounds terribly depressing and gloomy. There's no screening trial for it. But what we do know now is we know more about the symptom profile for the disease. So, the symptoms are symptoms that women can easily attribute to other conditions and doctors can easily attribute to other conditions, things like bloating. But it's important to realize it's persistent bloating. It's not bloating that comes and goes. It's bloating. It's bigger and bigger and bigger. It's actually abdominal distension in a woman needing to pass urine more frequently, more urgently, and it gets worse and worse. And these patterns of symptoms, abdominal pain, pelvic pain and difficulty eating feeling full very quickly not being able to eat meals like you used to at all.
But women need to know something is up or recognize something is up with their bodies, visit their doctors. If they can work out that it's possibly ovarian cancer, it's worth mentioning it. But just knowing something is wrong and going to your doctor and persisting and if need be, mentioning ovarian cancer would be a great first step. And it's really important that doctors realize the symptoms of ovarian cancer as well and when to start initiating of the tests. And so, yeah, it's a difficult thing, but there are possibilities for progress. You know, we in our first study, we showed differences...you know, it took half the time in Germany to be diagnosed that it did in the United States, United Kingdom, you know, we can do better. We absolutely can do better on getting women diagnosed as quickly as possible.
HANNAH LIPPITT: So now let's move to an update on the study. Could you summarize where you and the team are with data collection?
FRANCES REID: Looking at where we're at with the Every Woman Study, the lower-middle-income edition, we're in the midst of data collection as we speak. So, we have 24 countries involved. Not everybody is collecting data yet, at least not online. But we're hopeful that most will get through to that point fairly quickly now and on our data capture system. We have over 800 entries already of women's survey responses. We know in some countries, they are collecting on paper and uploading afterwards. So, we're really going to try and achieve at least 1,500 women, which is what we achieved before and ideally go a bit higher as well so that we've got a really robust data set going forward. Our data collection is due to carry on until the end of June. But we are already extending the deadline in some countries where they've had the most challenging times getting things going. You know, it's been quite a learning experience and for a whole variety of reasons it can take time to get things off the ground, and particularly for those in the lowest resource settings. It's really important we give them every chance to participate. So, we have countries spread across the whole globe and split between low, lower-middle, and upper-middle income countries. So, it's a really, really diverse mix.
HANNAH LIPPITT: So, I know that you've experienced a number of barriers so far. Obviously, this is to be expected with this study this large and diverse. It would be great to hear more about these challenges.
FRANCES REID: Some of the challenges we faced, I suppose, is to be expected. You know, you're talking countries that are low-income, lower-middle, upper middle-income countries. They themselves are quite diverse in terms of infrastructure, health, infrastructure. And how commonly these teams are used to working together within a country or internationally can impact...you know, we've got, for example, 12 hospitals in Nigeria who are participating. They have a national Gynecological Oncology Society. And this is the first big collaborative project that they've done that contrasts very starkly with, say, in Zambia, where we have the cancer diseases hospital. So, it's just one hospital. And the people who are leading the study there are also treating women with breast cancer and people with bowel cancer and so on. So, it's very diverse in who is involved and what experience they have and working within a country team, within an international team. There are differences in approach to ethics approvals in different countries. And we've had different hurdles to overcome, different time frames, we've had ethics committees abandoned, we've had some wanting large fees to participate, others demanding that the patients are paid because that's what's normal in their country. Whereas in other countries that's a real no-no. So, all of these things we've had to work through with our Oversight Committee in a really pragmatic way to try and make sure we can enable the country teams to participate. So those are some of the structural issues, if you like, I’ve mentioned workloads as well. But we've also had, you know, the impact of the pandemic, we've had clinicians who've been ill, we've had one of our country leaders had to go into hiding with her family because there were a lot of local kidnappings of nurses and doctors and young children in her area. We've had people who've ended up emigrating from that country. So, there's a lot of challenges to doing a project on such a scale in this country. And, you know, it also takes time for us to build a rapport with a country team and for us to learn from them and for them to understand where we're coming from. So, you know, we've in some cases met with members of the ethics committee in that country and to try and sort of encourage movement forward so that we can find a sort of common ground. So, it's been quite a challenge, really, but I suppose in a sense it's nothing really in comparison with the challenges that some of the women face.
You know, this study will only address the experiences of women who make it as far as a diagnosis and treatment. We don't allow the survey to be carried out on the day somebody is given a diagnosis. So, these are women who have come back for surgery, for chemotherapy, for follow up. And I think it's important to realize in many of these countries where diagnostic tests may not be free, treatments certainly may not be free, that actually many women never make it that far. Or even if they get diagnosed, they can't afford to go and get treatment, so they drop out of the system. So those are some of the challenges, very real challenges that are being faced as we go forward.
HANNAH LIPPITT: You have some really illuminating anecdotes of the challenges that those in developing countries have to face accessing care. Could you share some of these?
FRANCES REID: Yes, I mean, these are the real stories that sort of get to you and stay with you. I think in a study like this. You know, for example, I'm thinking of a lady in Nepal who we found some of these stories through actually through interviews with our country leads. And our country lead in Nepal showed with this story of a youngish woman who was diagnosed with ovarian cancer, and she came for surgery to his center. Now, it was 500 miles from her home to that center, and it took 18 hours in an ambulance that she and her family had to pay for. And she received the surgery, which didn't cost her anything. And then she went home to recuperate, and the team were trying to encourage her to come back. They kept in contact with her. But the woman and her family couldn't afford to raise the money to come back. So, it wasn't about the cost of the treatment. It was about actually getting to the hospital. And the other stories are our Nigerian lead shared with us for example and our Kenyan lead stories of women who have come and got a diagnosis but then have said, “well, I can't afford treatment now. I'm going to have to go back home, you know, perhaps a day's travel away or so and wait till I can sell some land or wait till I get money in from the harvest before I can afford treatment.” Stories of women being abandoned by their partners in quite a lot of these countries where there is some health insurance but is often through the husband. A woman having come, and she had surgery and she had one round of chemotherapy and then her husband abandoned her and dropped her from his medical insurance. So, she couldn't afford any more treatment. In the end, her brother stepped in and added her to his insurance. But you have to build up the contributions for three months. So, there were delays, of quite a lot of months waiting for her to be able to start treatment. All of these factors are getting in the way of women getting good care. And they really are things that we sort of need to take into account when countries look at what the issues are in their particular country. I mean, I've just been sitting looking at the data for our Kenyan team because they've not finished collecting their data. And it was quite extraordinary. I was looking at the reasons for delays in diagnosis. And, you know, it's things like delays to lab tests and these things can be fixed. Some things are more hard. But it's really important to get a picture in a country of what those particular issues are and think about how those might be tackled, you know, over and above things like free access to diagnostics, free access to treatment that can help women, but the context in which they're living, the cultural context and the socioeconomic context, the geographic context, the fact that women are all really important, our Ghanian lead for example, and where he works, his particular hospital and the rural settings, there's a lot of reliance on shamans and alternative health practitioners. So, he actually reported to us that 70% - 70 - of the women attending his clinic have some form of scars on the abdomen where healers have tried to let out the bad spirits. And this is all going on before they ever get to the hospital and to be seen by a medic.
HANNAH LIPPITT: You mention drugs and treatment there – are these actually available to women in these countries?
FRANCES REID: The treatments for ovarian cancer, the basic treatments, the core treatments that we all know and understand, they are on the WHO list of essential medicines, so they should be available in every country. We know they are not, but they should be. And we want women to be able to access them, but also to be able to access them without, you know, horrendous impact on their finances. Again, looking at the Kenyan data this morning, something like 90% say that their family finances have been absolutely catastrophic. And because they've had to pay for treatment, they've had to pay for diagnostics and so on.
HANNAH LIPPITT: So, what has been, in your view, the biggest success of the study so far?
FRANCES REID: I think there are a couple of big successes really so far. One has been seeing teams come together sometimes for the first time in their country working on a project together like this. And it seems to have found a flame, if you like, and an enthusiasm. And many people are saying this is just the start of work that they're going to do. It also, I think has identified some real future leaders who are really committed to looking after women with ovarian cancer, to really understanding what is important for women and how that matters for them. So that they can give them the best possible care. It's amazing to see, you know, the care and attention and the thought that some of these leads are putting into how they can improve things for the women in their care. They really do feel ovarian cancer is underserved and is a forgotten cancer, if you like, with the focus being mainly on cervical cancer in their country or breast cancer. So, they're really, really committed to seeing things change going forward and I think that is really promising. We've also seen some tangible outcomes as well. For example, there is now Ovarian Cancer Malaysia set up by patients involved in the study and the country team, which is amazing. They run events, they’re spreading awareness that provide peer support, they're contributing to research studies. And we're seeing the establishment of a survivorship group in Kenya now as a direct result of the study. And for a number of hospitals, we're seeing the first ever information on ovarian cancer being developed. So those already, even without the results, the data results, are going to be quite special, really, I think.
HANNAH LIPPITT: Thank you, so much Frances for joining me today. It's been really great hearing about the Every Woman Study’s progress and all of these fascinating cultural stories.
For the listeners out there, you can find out more information about the Every Woman Study at www.worldovariancancercoalition.org - and keep an eye-out for the first results of the study to be published later this year. And Frances – I look forward to having you back on the podcast next year for a full update!
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