Podcast "Let’s Talk Cancer" – Improving women’s health with culturally appropriate cancer care

This new episode of Let’s Talk Cancer highlights the importance of culturally appropriate approaches to women’s cancer care in the Indo‑Pacific region, exploring how tailored community engagement and inclusive health education can improve early detection and treatment for women across Timor‑Leste and neighbouring Pacific islands.

Cary Adams speaks with Ms Kirsty Sword Gusmão, an Australian–East Timorese activist, former First Lady of Timor‑Leste, breast cancer survivor, and Founder of the Alola Foundation, a UICC member organisation supporting women’s cancer awareness, education, and practical assistance for women seeking care.

Together, they discuss the most pressing challenges facing women with cancer in the region, including the burden of breast, cervical, and lung cancers; persistent barriers such as geography, financial constraints, and stigma; and the value of integrating culturally sensitive approaches that respond to women’s real‑world needs. The episode also looks at current initiatives – from Alola’s cancer support and awareness programmes to new partnerships such as the Elimination Partnership in the Indo‑Pacific for Cervical Cancer (EPICC) – and how collaborative, locally grounded efforts can contribute to improving outcomes for women today and for future generations.

See podcast transcript below

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Podcast transcript

Cary Adams: Welcome to a new episode of the podcast Let's Talk Cancer, the podcast where we explore the latest developments, stories and insights in cancer control worldwide through the experience of amazing individuals. I am your host, Cary Adams, the CEO of the Union for International Cancer Control, an organisation that unites and supports the cancer community to reduce the global cancer burden. In this episode, we turn our attention to women's cancers in the Indo-Pacific region and the importance of cultural approaches to prevention and care. Our guest is Miss Kirsty Sword Gusmão, an Australian East Timorese activist, former first lady of Timor-Leste. She is also a breast cancer survivor and the founder of the Alola Foundation, a UICC member organisation advocating for women's cancer care with a focus on breast cancer awareness, education and patient support. With her, we will be looking at the current situation for women facing cancer, notably the three deadliest cancers in the region: breast, cervical and lung cancers. What are the persistent barriers that women face in accessing care, and what are some initiatives underway to address them? We'll be discussing with Kirsty her work on women's rights, issues of equity for underserved populations, and the unique challenges of Timor-Leste and the other Pacific islands in addressing cancer control. We'll explore how collaborations can drive progress and the role of partnerships such as the Elimination Partnership in the Indo-Pacific for cervical cancer, so-called EPICC program. She also brings a deeply personal perspective as a breast cancer survivor. Kirsty, it's great to have you on the show. 

Kirsty Sword Gusmão: Oh, that's a pleasure. It's a great privilege. 

Cary Adams: You've been a prominent advocate for health and social issues in Timor-Leste and the region. Could you share a little about your journey and what led you to focus on women's health and cancer control? And the Alola Foundation? 

Kirsty Sword Gusmão: Well, my motivation for establishing the Alola Foundation in 2001, many years ago, was the result of my observation, even prior to independence, that women's voices were often drowned out in a very patriarchal society. Also, very specifically, I established Alola to honour one particular family from the southern coastal town of Swai, whose 15-year-old daughter was abducted immediately following the vote for independence in 1999. She was taken as a war trophy by a prominent militia leader in that area, taken over the border into West Timor and kept as a kind of sex slave. They appealed to me to do something to have her return to them because they had just in the same violence following the referendum, lost their only other child, a 13-year-old son. As a mother and as a woman, I decided I would try and do my best to help this woman to be reunited with her child. Her name is Juliana dos Santos and her nickname was Alola. So, I established Alola to honour Juliana but also the very many other Juliana's who had been victims of sexual and gender-based violence throughout that period of Indonesian occupation and leading up to independence. 

Cary Adams: What a horrifying story. How did that become cancer, then? Where did that come from? 

Kirsty Sword Gusmão: Well, the evolution of the Alola Foundation and its work went sort of on a parallel course with my own personal journey. In 2013, I was diagnosed with breast cancer myself. I had the very good fortune of being an Australian by birth and having access to excellent high quality cancer care and treatment in my hometown of Melbourne. So, I was able to go through my treatment successfully in 2013. When I returned to Dili later that year, I was very curious to know what the experience of Timorese women in relation to cancer was. It hadn't been anything that had crossed my mind up until that point. I started making inquiries and discovered that there was very little data on cancer statistics, breast cancer or other women's cancers. I decided to establish a group of women survivors to promote awareness amongst East Timorese women of the importance of early detection, how to do breast self-examination. Alola's Maternal and Child Health program doesn't provide a clinical service, we're all about health promotion. In recent years, it's interesting to see and talk to oncologists at Dili National Hospital who say that since the Haliku program was established, they have seen so many more patients. 

That just highlights how vitally important education is. Then about two years later, Haliku, as it was called, which stands for Ha'u hili atu kura, in Tetum, which means I choose to get better or I choose to recover. It became an official part of the Alola Foundation's Maternal and Child Health program. You can see some synchronicity when we're going into communities and we're talking about the importance of breastfeeding; we can also talk to women about how easy it is to do a breast self-examination. We just recently, in September last year, inaugurated a Women's Cancer Support Centre as part of the Alola Foundation's commitment to better cancer care and treatment. It's an accommodation facility for women from the rural areas who may suspect that they have breast cancer and don't have the means to support themselves whilst in Dili for diagnosis and for ongoing treatment. 

Cary Adams: That's amazing. It seems that every time a tragedy hits you, you're straight away solving a society problem. 

Kirsty Sword Gusmão: Well, exactly. It was a question for me: how can I turn this bitter, unfortunate personal experience I've had with breast cancer into a silver lining and help other women. It was part of that whole journey of the Alola Foundation's work, sort of mirroring circumstances in my own life. 

Cary Adams: I guess in some ways you're lucky to have such a relationship with Melbourne. I mean, the cancer treatment centre is a VCCC there and they're fantastic, way, way ahead of many parts of the world. 

Kirsty Sword Gusmão: Yes, absolutely. 

Cary Adams: Let's talk about it more broadly then. We've got Timor-Leste, but what about the Indo-Pacific region: is what you're seeing in your own country similar across the region? 

Kirsty Sword Gusmão: Yes, I would say that many of the challenges facing women patients and health systems are very similar. I guess one of the major challenges that we face in reducing the burden of cancer for women in Timor-Leste is, as I mentioned already, education but traditional cultural beliefs, shame and poverty, and geographical barriers as well. Timor is quite a mountainous country; populations are very dispersed. So, it's not easy for women, particularly in rural areas without financial means, to get to the nearest referral hospital, much less to the national hospital in Dili. 

Cary Adams: Is your reaching out to the community working? Do you feel that you are getting into those communities and people are aware and they do try to self-examine and they try to get into the centre? 

Kirsty Sword Gusmão: Yes, we have conducted hundreds of workshops and seminars across the country since Haliku was established. We generally focus on high risk groups, and that includes female members of the clergy, a lot of young people – I think the incidence of breast cancer and other women's cancers in young people has really increased a lot in the region, and certainly Timor-Leste is no exception. So, we do a lot of work just talking to students, young female students and we find that a lot of them report that they return home and they talk to their mothers, they talk to their aunties, other female family members and the word gets out and, as I mentioned, has translated into quite a significant increase in the numbers of cancer patients and women reporting to Dili National Hospital getting a diagnosis and subsequently treatment. 

Cary Adams: Of course, the ambition is to get them in stage one or two when treatment is far more effective. It's a common problem around the world, stage shifting, getting people to present early. We know that it's not just breast cancer, there's cervical cancer and lung cancer that are major issues for women. Is that the same in the Pacific Islands? 

Kirsty Sword Gusmão: Yes, I believe that breast cancer, cervical cancer and lung cancer are amongst the biggest killers, not only in Timor-Leste but across the region. 

Cary Adams: What do you think are the biggest challenges then? Is it education to women? I mean, you've mentioned some of the logistical challenges, the financial challenges. What about government support? Is there government support to women to help them? 

Kirsty Sword Gusmão: Yes, the government provides funding to help cancer patients travel abroad. There are only very basic chemotherapy services available: no public system, mammography, no radiotherapy. In many cases, there is no option for women but to travel abroad. The government does provide support for that but, obviously, can't help every single cancer patient. This is where the question of equity comes in that obviously better off women can fund their own medical evacuation to, whether it be, to Malaysia or Indonesia or to Australia. However, if you're a poor woman from a rural village, you don't have that option. I mean, it costs $50 to do a biopsy and to have the results of that analysed in Indonesia. For many women, that itself is prohibitive, let alone, you know, the costs of travelling abroad and receiving comprehensive treatment that often requires follow up visits as well. It really is quite beyond the reach of the vast majority of Timorese women. 

Cary Adams: It's a story we hear around many parts of the world, to be honest, about the poor being unable to secure the treatment needed for their disease. What about culturally appropriate programs? These are the phrases that we use, is that something which you think is important in ensuring that more women come forward in terms of presenting early and understanding the issue? You mentioned the church and other things like that; how do you work out what's the best way to reach out into those communities? 

Kirsty Sword Gusmão: Yes, obviously being sensitive to culturally specific impediments to women availing themselves of cancer screening and treatment is really important. For example, Alola's Halikuprogram doesn't suggest to women patients that they completely abandon the use of traditional medicines, which is very widespread, but instead that they complement traditional remedies with Western medical approaches to treatment. We talk to them about the cases we see of women relying for extended periods of time on herbal remedies and then presenting at hospital with stage four cancer when little can be done to save their lives. It's also about designing specific interventions which respond to specific challenges faced by the most vulnerable women. For example, the Haliku Women's Cancer Support Centre that I mentioned. For a lot of women, even being able to leave their families for a couple of days to travel to Dili for a diagnostic appointment is very difficult. Who's going to look after their small children? Our centre can accommodate not only a female patient, but a carer and her children. We have a kitchen and the women can cook for themselves or have their meals prepared for them. In terms of working with female members of the clergy, one of the female cancer survivors who helped me establish Haliku is a female member of the clergy diagnosed around about the same time as me. We make use of her to tell her story, to explain risk factors and to try and remove some of the fear and the stigma associated with cancer. There's a lot of superstition. There's a belief that if you've got cancer, you've been cursed and women are often ostracised, or not only women because this applies to men's cancers as well, and often denied support because there's a belief that someone has put the evil eye on them and that they need a traditional healer to cure them. 

Cary Adams: It seems horribly unfair, isn't it? Someone who's unfortunately got cancer suddenly has the additional stigma attached to it and everything else? We ran a campaign on World Cancer Day called Upside Down, which is “cancer turned my life upside down” and you hear so many stories where it literally did turn their life upside down right across the world. It's sad. We talked about the government earlier, are these programs that you're running embedded in national strategies or are you running them purely as a foundation? Do you have government support for doing these? 

Kirsty Sword Gusmão: Not very much in the way of financial support. Haliku is funded principally from philanthropy, from private sector donations, but we do have regular communication and coordination with the Ministry of Health. We established a breast cancer committee very soon after we set up Haliku, and on it sits oncologists and surgeons from Dili National Hospital, as well as Ministry of Health officials. We do make sure that we stay in regular contact. We inform them of what we're doing, invite them to participate in our programs and encourage them as far as possible to integrate the work that we're doing into their own programming. As you can imagine, there's a lot of serious primary healthcare challenges in the country that the government is still struggling to address. Having said that, there have been vast amount of progress as well. Malaria has been eradicated from Timor-Leste. There's a far lower rate of infant and maternal mortality. There's been tremendous progress across many areas, but I would have to say that I think cancer care is not particularly front of mind. That's why I think our ongoing reminder to the government about the terrible toll that this disease takes on individuals, on families and on the fabric of society is vital. 

Cary Adams: That's something that is around the world. There's been a lot of focus on the infectious diseases, Malaria, TB, HIV, AIDS and maternal-child health, and quite rightly. I mean, probably from the beginning of the century, that's been a big focus of global funding. I think we're getting to a stage now where the non-communicable diseases are becoming more prevalent. People are aware of them, governments are moving towards them, there's more national cancer control plans. I'm hopeful that we'll see more investment in health systems for cancer in the future. Let's cross our fingers. 

Kirsty Sword Gusmão: Absolutely. I mean it's quite tragic to see. I think it's about 30 or $40 million a year that is spent on sending patients abroad for treatment. I think it would just make so much more sense to spend at least part of that money on improving services, better training for individual health workers, for specialists, so that those women who can't afford to even get a passport for themselves are not missing out. 

Cary Adams: Now, I think you're involved with the Elimination Partnership in the Indo-Pacific for Cervical Cancer, the EPICC project. The program is run by the amazing Karen Canfell, who we all absolutely love. How important do you think that is across the region? What's your involvement? 

Kirsty Sword Gusmão: I don't personally have any direct experience of working with the EPICC team on the ground in Timor where it's conducting cervical screening. It's something I could only have dreamt about ten years ago, but I and the Alola team have had a lot to do with the Deputy Lead Professor, Deborah Bateson, and we're in complete awe of her drive and passion. In just three weeks, 90% of girls aged 11 to 14 received the HPV vaccine. I believe that this is even better than Australia's current HPV vaccination rate of 81.1%. That's extraordinary work and too many women are dying in Timor and across the region of cervical cancer. This is just tragic, absolutely tragic. 

Cary Adams: It is tragic but thank God it's one cancer that we know we can eliminate over time. It's a very compelling story, isn't it? You can vaccinate early, detect and treat before it becomes a cancer. I noticed that Timor-Leste has recently joined ASEAN. What opportunity do you see with that for Timor-Leste? 

Kirsty Sword Gusmão: Indeed, this is only a very recent development. Timor-Leste joined ASEAN only in October last year. Timor-Leste shares a lot in common with other ASEAN member states in terms of their populations, limited access to essential diagnostic imaging and molecular testing, especially outside capital cities. I'm sure that there's a great potential for collaboration and mutual support, perhaps even a bit of funding. 

Cary Adams: Well, it seems that whenever you see an opportunity, you go for it 100%. What are your next plans for what you're going to do in the region beyond Timor-Leste? Do you have any plans to improve the way in which women are supported and educated through cancer, as you have done in Timor-Leste? Do you see yourself having more of a regional role? 

Kirsty Sword Gusmão: My focus over the last couple of years has been more in the education space and particularly promoting multilingual education, which again, is another area of challenge and need. Not just in Timor-Leste, but the whole Asia Pacific region is one of the most multilingual regions in the world and yet very few young people actually have an opportunity to be educated in their mother tongue. That's been a very big focus of mine over the past five or so years. 

Cary Adams: I've got a friend of mine who was a teacher and now she works in global health. She said once a teacher, always a teacher and you are living that as well. I now know two people in my life who were in teaching and then came into global health. 

Thank you very much for being part of our world, and I really appreciate you talking to us today. Thank you very much. 

Kirsty Sword Gusmão: Oh, it's a great pleasure. Thank you. 

Cary Adams: Thank you very much for listening to this episode of Let's Talk Cancer. If you like this podcast, please give us a rating and subscribe for more content every month. If you want to know more about UICC work, visit UICC.org or follow us on social media. Women's cancer is particularly important to UICC, and it's a focus of attention over the next few years, and it will feature at the World Cancer Congress that we run over those years as well. So please join us if you want to know more about what can be done on women's cancers. See you again soon.