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- [00:05]
A
More than 25 years ago, photojournalist Kate Garrity traveled to Timor Leste to document the struggles of the Timorese people as they wrestled back their independence from a decades long and often brutal Indonesian occupation. One devastating legacy of this struggle is a deep cultural tradition of, of withstanding pain coupled with a shame about cancer and a lack of resources. A diagnosis of cervical cancer often equals a death sentence in Timor Leste. I'm Samantha Salinger Morris and you're listening to the Morning edition from the Age and the Sydney Morning Herald. Today, photojournalist Kate Geraghty and health editor Kate Albison on the Australian medicos who are helping the women of Timor Leste fight this entirely preventable cancer. Well, morning Kate Garrity and Kate Alberson. Obviously it's the two Kates I've got to distinguish you somehow. So thanks for coming on.
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B
Thanks for having us.
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C
Thank you.
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A
Okay, Kate Geraghty, I'm gonna start with you because you first visited Timor Leste 25 years ago and this was obviously a very pivotal time for the country. This was documenting the aftermath of a 24 year war between the Timorese people and the Indonesian military and the pro Indonesian militia, you know, they wanted to stop Timor Leste from gaining independence. This was a, you know, a hugely traumatic time. So why did you want to return to the country again?
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C
Well, I think any opportunity to revisit somewhere that, you know, was, I mean, Timor Leste was, it was the first place where I had gone to document the aftermath of conflict and. Yeah, so basically to go 25 years later and see the changes, to see the people again was really important and a huge privilege really.
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A
And Kate appison, let's go to you. I mean what made you want to go, what made you want to travel there and document, you know, some pretty horrific scenes you're seeing really.
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B
Well, I just wanted to say first that it was pretty incredible getting to travel around Dilly with Geraghty because we drive down these streets and Kate would be like, oh yeah, I spent a night in there. It was a bit, had no roof, it was completely burnt out or you know, that's where the siege was on, on the US compound. And to look at the place now, it's, it's incredible what they have accomplished in 24 years, 25 years of independence after such a big brutal and bloody several decades of violence, occupation and before that colonization. So if any country is going to achieve some truly remarkable things, it's going to be Timor Leste and It's true.
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A
Of course, what you've reported on is a massive change in the health there and there is a massive health problem there, in particular with the numbers of women suffering from horrible late stage, in particular cervical cancer. So, Kate, we're going to get in just a moment to the women that you met because in Australia it's often quite treatable, right?
- [03:21]
B
Yes, it's very treatable in Australia. In fact, we are on track to completely eliminate this cancer by 2035. So, yeah, I was really keen to go to Timor Leste to see the work of a particular group of experts. They're called the Elimination Partnership in the Indo Pacific for Cervical Cancer. And Professor Deborah Bateson, who is someone I have known for years, she is a wonderful advocate for women's health. She used to work for Family Planning New South Wales and now she is the lead in the program in Timor Leste. And I was interviewing her about something else several months ago and she mentioned that she was off to Timor Leste for this program. And I just said, can I come? And essentially she said yes. I mean, it took a few months of back and forth and get everyone to sign off, but that's essentially why, I mean, I was just really taken by this group of brilliant researchers, doctors, scientists, healthcare workers who were essentially harnessing all the groundbreaking world leading work Australia has done in cervical cancer elimination and taking it to where it was needed most. Because it's frankly deplorable that in Australia we're on track to eliminating this deadly disease by 2035. And some of our closest neighbors, they still have young women, women in their 20s, their 30s and 40s, dying of this cancer who are not seeking medical treatment for this cancer until it's far too late to do anything about it. And that to me is just so perverse when this is a almost entirely treatable disease.
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A
Well, yeah, I was so struck by something that Deborah Bateson, you just mentioned her before, she is the deputy lead of this program there that you just mentioned and she said to you, everyone you meet in Timor knows someone with cervical cancer or someone who has died of this terrible disease. Often horrible deaths, stigmatized and isolated. So I guess tell us about some of the women or the families you met that really unfortunately illustrate this because there was one woman in particular, Philomena, who spoke about her mother who had died. Maybe tell me about their story.
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B
Yeah, I mean, she's really a testament to. There is no one in Timor Leste who has not had some experience with this cancer, whether it's a mother Or a sister, a friend. We happened to be talking to Philomena's aunt about her breast cancer diagnosis and she mentioned that her relative Maria had died of cervical cancer. And, you know, within a few minutes, Philomena came riding up on her scooter to Maria's front porch with her four year old daughter Grace in her lap. And she was kind enough to take us to her mother Maria's grave site, which was beautifully tended and she cared for it with just this really, really lovingly. And what was really heartbreaking about that was here we have three generations of women. We have Maria, who has died of cervical cancer only the year before. She was a nurse, she had more health literacy than almost most people in Timor Leste. And she still delayed for years getting her symptoms seen too. There's this real culture in Timor Leste and in other countries across the Indo Pacific of seeing traditional healers first who have their pastes and tinctures. And so people often don't go and see a medical doctor until sort of all other pathways are lost to them. And even then, cancer is such a terrifying prospect in countries where there aren't a lot of treatments. So when Maria did finally get a diagnosis, she was sent overseas for treatment and she was essentially given the all clear. But when she came back, she was far weaker than she was when she left and something still wasn't right. And so her family went in search for answers and no one could really help until there was a Chinese medical ship, which they called it a Chinese ferry that was docked in the port of Dili. So they took her there and she had an MRI and it turned out that no, absolutely not, her cervical cancer was now advanced. And despite going back overseas for treatment, Maria was sent home and told to prepare for her death. And this was, I mean, it goes without saying, heartbreaking for Philomena. But it really galvanized Philomena's resolve that she would be screened for cervical cancer when she was 30 and her daughter Grace, who is only 4 now, would be vaccinated as soon as she was 11. And this would not be possible without Epic, because Epic is doing the three things that the World Health Organization say is necessary to eliminate cancer. They want 90% of all girls vaccinated. They want 70% of all eligible women. So women from age 30 to 49 screened twice for HPV and 90% of women who have pre cancerous cells or invasive cancer treated. And this is the way that the world is going to eliminate this cancer. EPIC is the only program that is operating across all three pillars.
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A
And so, Kate Geraghty, I'm just gonna turn to you for a moment because this incredible feature over the weekend that you both have produced, it features really some heart wrenching photographs that you have taken. In particular, there's two women. Maya Dominguez is one woman who's being treated in a clinic in Dilley. And Olga Guterres, she is also being treated, both of them, for advanced cervical cancer. So what struck you about these two women and what was it like to meet them?
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C
Yeah, the two ladies were wonderful to meet. And especially in such a circumstance where they're obviously in pain and they're in hospital, so they're sitting on their beds in a ward surrounded by other women. There is, you know, afternoon light filtering through the window. It kind of touches the sides of their faces. And they sat there and quite humbly spoke to both Kate and I about their experiences, a little bit about their daily life. They're both mothers and always when you meet people like Olga and Maya in situations like this, it breaks your heart. Like you can't photograph or meet people like these ladies without walking away and feeling, you know, something could have been done earlier or it's preventable and you wish them all the best and you hope that, yeah, they have some peace.
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A
And Kate, I wanted to turn to you as well because there was one quote in your story. This was a doctor who was either treating Olga or was there with her. This was Dr. Zito, a man that you interviewed there. And he seemed to be sort of frustrated and at one point said he couldn't interpret what Olga was saying anymore. Because Olga has said, my doctors have said good things to me, encouraging me to continue to follow the Bible and pray hard to my Jesus so that I can return to good health. So is that anecdote, I guess, is that just a testament to, I don't know, I guess the desperation, the frustration of doctors there dealing with a crisis that perhaps they feel like they shouldn't be in.
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B
Dr. Zeto is someone who is going to stay with me for a while. He's a gynaecologist and he works really closely with epic. They brought him to Sydney on a fellowship to see what it's like here to treat cervical cancer, which just must have been such a confronting thing to see in a country that has the healthcare system. We have the hospital care, we have the surgical capabilities, the chemo, radiation, like this is just worlds away from where he works in Dilly and Timor Leste. And he has been treating women with cervical Cancer for years, years and years. And he broke down at one point and just said to us, I cannot keep seeing women die. I just can't keep experiencing this. And he was very kind to translate for Olga when we were speaking to her. And Olga was describing to us that she had a cancer, a sickness, and she kept sort of holding her abdomen and Zeto was translating, but also saying she, she doesn't comprehend what a cervix is. There is not that knowledge. So she's talking about having a cancer in her womb. And she was talking about the fact that her doctors were telling her to prey and that they hoped that they could send her overseas for treatment because they do not have the treatment options in Timor Leste to treat the later stage cervical cancers, the kind that Olga has. And this is what Epik is hoping to avoid by picking it up earlier. But Olga doesn't have a passport, she doesn't have a birth certificate and what's called a junta medica, a medical council of doctors will determine whether she can go overseas. And then the Health Ministry have to determine whether there's enough in the healthcare budget to send her. Like these are, these are obstacles that should not exist and they certainly don't exist in Australia. And so I cannot imagine what it's like for someone like Dr. Zeto, who is trained to treat women, to not be able to do that and to stand there with me and with Kate Geraghty and to translate for Olga. I can't imagine the helplessness he would have felt. And to hear him talk about what Epik's achieving, I think that really gets to the heart of it. He's just so grateful, he's just so grateful for the help and the assistance that EPIC is offering doctors like him and the Health Ministry to eradicate this and that. That's really at the heart of this. Like this is entirely possible to do, entirely possible to do, like it's going to happen. And it just means that women who could be in Olga and Maya's position in the future perhaps won't exist because they would have been picked up so early or they would have been vaccinated. After the break, it comes down to the people. It really does. There is such a will, such a will to save these women's lives and they will stop at nothing. It's really remarkable.
- [14:28]
A
We'll be right back. Well, let's get into this because this is so exciting. Amidst the heartbreak, there is this incredible new project that you've referred to. It's a $35 million program. It's funded by the Australian government and also prominent business executives and philanthropists Andrew and Nicola Forrest. So tell us, what is this program exactly like? Can you break it down for us? What are they going to provide? Because it seems like in this country the challenges are just multifold, right? Like they don't have much equipment, they don't have the equipment to hand handle late stage cancers. It sounds like there's all kinds of other challenges as well. So what are they actually going to do?
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B
Yeah, so EPIC works across the Indo Pacific, it works in places like png, in Fiji, in Vanuatu, in Tuvalu. Like they are everywhere. And if you speak to Professor Karen Canfield who heads this entire program, she says we meet countries where they're at, which means we offer countries whatever they need at whatever stage of development they're at when it comes to cervical cancer elimination. So for somewhere like Timor, it's helping them set up and run a HPV cervical cancer screen and treat clinic. Which means women come in, they self collect a sample, it's tested in clinic, in this sort of little portable testing machine about the size of my home air fryer and it spits out a result within one or two hours. And about 13% of women will test positive for cervical cancer causing HPV strains. And most of them can also be treated in the clinic on the spot, which is exactly what a country like this needs to be able to just do it all then and there while the woman's in front of them. And then in other countries, EPIC might do things like help them do modelling or more technical assistance if they're so sort of further along. But in Timor Leste we could really see what EPIC could help the Health Ministry do on the ground, whether it is the screen and treat clinic, the thermal ablation treatment. They're also setting up a pre invasive clinic for women whose precancerous cells are too advanced to be treated by thermal ablation. And they're also supporting them improve their lab because that's really needed as well. Something that really struck me when we met Maya and Olga is in their medical files. It doesn't say that they have confirmed cervical cancer, it says that they have suspected CE cervical cancer, even though it's so advanced their cancer can be seen by the naked eye of a trained medical professional. There's so much waiting that goes on and delays in the lab that the histopathology results, which is the gold standard to diagnose cervical cancer, will take too long and they don't have months to wait. For treatment. They need to be treated now. So epic's helping equip the lab. It's helping train Timorese healthcare professionals to do what they do, only better, in order to help these women and also to improve palliative care and hopefully access to pain relief medications. Because, frankly, when you run a screen and treat program, you're going to pick up more women with cervical cancer, so you better help treat them as well.
- [17:47]
A
Well, that's another quote that sort of stopped me in my tracks. You spoke to Sydney PhD student Julia Da Costa, who's researching opioid access for pain management and Timor Leste, and she said, there's a lot of resilience in Timor. We've been through a lot, and there's this culture around pain that we should tough out. No one complains, but no one should suffer. I mean, that's devastating to think that there's this sort of confluence of horrible things here happening. There's lack of treatment, there's lack of pain medication, and then there's a culture where people feel like they have to toughen it out. So it really is almost a perfect storm, isn't it, in terms of what's leading so many people to suffer?
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C
So usually what we see straight after a conflict or in the aftermath of a conflict is individuals who have been injured or have an illness or a disease will endure the pain because there's bigger things at play. That's the kind of sense that I get from meeting people. There's the creation of a government. There is the security of the community or the population. There is the rebuilding of infrastructure. We have to remember that Dilly and Timor Leste was pretty much devastated at the end of 99 and the beginning of 2000. So there were, you know, there were a lot of things that kind of took a priority over individual suffering. And so that doesn't surprise me to hear that people endured and just kind of put up with a lot of pain.
- [19:22]
A
And Kate Garrity, I guess, sticking with you for a moment, I did want to bring the listeners in on something that you mentioned right before recording because you said on a hopeful side, what was so interesting for you returning to this country 25 years after you were last there was actually how impressive it is that for a country that only gained independence 25 years ago, it's now got this plan to eradicate cervical cancer as such a high priority. Right.
- [19:47]
C
I think it's incredible. I mean, as we flew in over Dilley, I was looking down and it looked completely different. And, yeah, I did think at the time, while we were there, that on a scale of, you know, really life changing and important policies and, you know, to have the eradication of cervical cancer right up there as a top priority in a country that is, you know, had independence for only 25 years is beyond impressive. It's. Take a hat off, take a, take a bow. Timor Leste, really.
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A
And I guess to what do we attribute this? The fact that, cause this is quite amazing to me. I didn't, I had no idea, I knew that Timor Leste had achieved independence only relatively recently. But, but how has it come about that a country which sounds like it still has relatively rudimentary, I guess, medical facilities, certainly in comparison with a country like ours, how is it that it's come to have this near the top of its list of priorities so soon?
- [20:54]
B
It comes down to the people. It really does. When we visited the clinic and the hospital with the Australian members of the EPIC team, you could not shut them up when it came to singing the praises of their Timor Leste colleagues. The doctors, the healthcare workers, the midwives, the bureaucrats in the Health Ministry, right up to the Vice Minister of Health and the Minister of Health. Like there is such a will, such a will to save these women's lives and they will stop at nothing. It's really remarkable. The Australian members of EPIC would recount stories of having to have sort of telemeetings with Dr. Andy, who runs the Screen and Treat clinic, in the middle of a flood when the building was literally flooding and the water was creeping up his legs or you know, right after an earthquake. Like the, the obstacles these people face is just insane. I don't know how I would take a day off. But they don't, you know, because they know what the stakes are. And again and again we heard we will leave no woman behind. We will leave no girl behind. There is just so much resilience and, and so much commitment to the cause there. I mean, for example, this country had no HPV vaccination program. And then last year, during their first HPV vaccination drive, which was supported by an EPIC partner, they vaccinated 90% of the cohort of 11 to 14 year old girls. 90%. That is so impressive. And the health ministry is now going to continue this program like this is a new generation of girls who are going to grow up with significantly lower rates of cervical cancer because of that.
- [22:43]
A
And I guess just to wrap up, Kate, one question that's left for me is why is Australia putting so much money into this program, into The Indo Pacific. I mean, it's incredible to me that it is. But for those listeners out there, you know, wondering, because it, it is such a great story, why are we doing this?
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B
I think Australia feels like it has a responsibility to help their closest neighbours, especially when Australia is such a pioneer when it comes to cervical cancer. The first cervical cancer VACC was invented here. It was co invented by an Australian scientist called Ian Fraser. So many of the members of EPIC are pioneers in cervical cancer elimination around the world. Australia is leading the way when it comes to cervical cancer elimination. We have screening programs, we have vaccination programs, we have new data just out in the last few weeks showing that we have incredibly low rates of cervical cancer and vanishingly low death rates for cervical cancer. So I can completely understand a cervical cancer expert looking further afield than Australia and going, oh, my God, we're doing so well here. And an 85 minute flight away. Young women are still dying of it. We need to do something about this. And when the EPIC team proved that they could do this with some money that they got from Mindaroo foundation, the Australian government got on board and said, you're actually going to do this. This is so achievable, we're going to help you. And so now it has become a priority for DFAT as well.
- [24:21]
A
Well, it's such a great story and we're so lucky that you both managed to get on the ground there to report on this. So, so thank you so much, Kate Geraghty and Kate Albison for your time.
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C
Thank you so much.
- [24:32]
B
Thanks, Sam.
- [24:33]
C
And thank you to the ladies who allowed us to photograph and interview them.
- [24:37]
A
Absolutely. It's such a privilege to share their stories. For all of today's headlines and in depth analysis on what's making news today, head to our websites@the age.comau or smh.com Today's episode was produced by Josh Towers. Our executive producer is Tammy Mills and our podcasts are overseen by Lisa Muxworthy and Tom McKendrick. If you like our show, follow the Morning Edition and leave a review for us on Apple or Spotify. Thanks for listening.