Bridging the Timor Gap: Dreams of equity for women with breast cancer in the Southeast Asia region’s newest nation.

A Guest Post by Kirsty Sword Gusmão

I am delighted to share this insightful and inspirational feature by Kirsty Sword Gusmão. To set the scene, I wrote about the incredible synchronicity which connected us in “A small, inequitable world”.  I am hopeful that this will be the first of many contributions from Kirsty.

Kirsty was born in Melbourne, Australia and grew up in Melbourne and Bendigo. She attended Melbourne University where she completed a Bachelor of Arts (Honours), majoring in Indonesian and Italian, and a Diploma of Education.

In 1991, after working as an Administrative Secretary with the Overseas Service Bureau (Australian Volunteers International), she joined the Refugee Studies Program at Oxford University as Assistant to the Development Coordinator. During 1991, she travelled to East Timor as the Researcher/Interpreter for the Yorkshire Television documentary film (In Cold Blood: The massacre of East Timor) on political and social developments in the territory.

From 1992 to 1996, she lived and worked as a teacher and human rights campaigner in Jakarta, Indonesia. It was during these years that her work for the East Timorese independence cause intensified and brought her into contact with the independence leader, Xanana Gusmão, who was serving a 20-year sentence in a Jakarta jail and whom she married in July, 2000.

She has lived in East Timor since October 1999 and is the founder and chairwoman of the Alola Foundation which she established in 2001 to address the needs of East Timorese women and their families.

Kirsty was appointed as Goodwill Ambassador for Education in October 2007. She is Chair of the Timor-Leste National Commission for UNESCO and also heads up the National Commission for Education. She is passionate about the issue of language policy and language of instruction in schools in Timor-Leste and is presently spear-heading initiatives aimed at giving a role to the country’s some 30 local languages in the education system.

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Bridging the Timor Gap: Dreams of equity for women with breast cancer in the Southeast Asia region’s newest nation.  

By Kirsty Sword Gusmão

Last month I watched, along with millions of viewers around the world, the images of the Duchess of Cambridge emerging radiant from a London hospital with a healthy newborn baby cradled in her arms. In the lead up to the birth, the big question on the lips of the thousands of commentators and journalists related not to whether or not mother and baby might live through the labour, but rather what the future King’s name would be. And yet, the reality of childbirth for the world’s poor and underprivileged mothers, including those in my adopted homeland of Timor-Leste, is that giving birth is one of the most dangerous undertakings a woman can embark upon. At the time of independence in 2002, only some 10% of women opted to have their babies in a health facility, the vast majority giving birth at home in the presence of family members or, at best, a traditional birth attendant. As a result, rates of infant and maternal mortality are amongst the highest in the region, and whilst there have been vast improvements in health facilities and services ever since, women continue to die from haemorrhaging and other post-natal complications virtually unheard of in the developed world.

My thoughts turn to the case of another high profile celebrity whose health and body have been in the news in recent times. Angelina Jolie announced a couple of months ago that she had had a double mastectomy as a means of ensuring she did not succumb to breast cancer for which she has a genetic predisposition. The question of the costs involved in being tested to determine the extent of a woman’s vulnerability was raised in articles and commentary around the world, and the issue of equity of access to care and treatment leapt to the fore in my thoughts as I pondered the situation of women in my country of Timor-Leste.

It is not known how many East Timorese women die each year from women’s cancers, including breast cancer. The country’s fledgling health service has not yet honed its data collection systems and methods, and since the poorest and most vulnerable citizens live in remote locations without easy access to health and other government facilities, many rely on traditional medicine and the intervention of “matan dok” or witch-doctors to heal them when ill. Anecdotal evidence at least suggests that the vast majority of cancer sufferers present to western-trained doctors only when traditional remedies fail and, hence, when their cancer is advanced and too often beyond cure. I can surmise that, as with childbirth, women experiencing symptoms of breast or ovarian cancer, feel too shy to speak with a physician about a condition involving private parts of their anatomy, and hence they suffer in silence until it is too late.

In May this year, my husband, Prime Minister Xanana Gusmão, visited me in Melbourne where I have been receiving treatment for breast cancer diagnosed in December 2012. I have had the very good fortune to have access to one of the region’s most impressive and professional cancer hospitals in the city of my birth, Melbourne. The Peter MacCallum Cancer Centre is where I have received surgery and chemotherapy for the hormone-receptor positive lobular cancer detected by my GP at the time of a Christmas visit late last year.

In the course of his May visit, my husband shared with me the story of a woman he encountered during a short stay a month earlier in the town of Ainaro in the mountains some 70 kilometres south of Dili. He was in Ainaro to share details of the government’s decentralisation plan and to highlight the important role of local government in supporting the country’s burgeoning democracy. Having spent many years directing the resistance from the mountains surrounding Ainaro, Xanana’s visit provided many locals with a rare and long-awaited opportunity to reconnect with their leader and to share with him some of their most pressing needs and aspirations.

Amongst the citizens waiting patiently for an audience with the Prime Minister was a middle-aged woman and judge from Suai called Francisca (name changed to protect her privacy.). She had made the long journey from the southern coastal town, taking leave from her job at the Suai district court, with the intention of raising her health concerns with my husband. To begin with, she spoke of a stomach ailment for which she had received treatment at the Guido Valadares National Hospital in Dili. She was distressed that the medication had caused her to lose her hair and teeth. The only food she could eat was rice porridge. When the Prime Minister, suspecting that Francisca was not disclosing the full story of her health status, pressed her to provide more detail, she revealed that she was also experiencing swelling and hardness in her breasts, with an unpleasant smelling liquid issuing from her nipples. Fresh from a visit to Melbourne to visit me following my lumpectomy, Xanana was perhaps a little more mindful of the signs and possibility of breast cancer than he otherwise would be, and hence he quizzed Francisca as to whether she had considered that she might have breast cancer. Her response was a downcast look and a shrug. Upon his return to Dili, my husband made arrangements for Francisca to travel to Bali and to be given a medical assessment at a private hospital there. Some months later, Francisca sought my husband out again, this time at his office in the imposing Government Palace in Dili. Xanana was rather dismayed to learn that she had failed to make mention to the Balinese doctors of her concerns about her breasts, possibly as a result of shyness. Francisca revealed to the Prime Minister that she had been taking traditional medicines made available by members of her family in Suai, and that she was confident that there had been an improvement in the condition of one of her breasts. Subsequently my husband got in touch with Timor-Leste’s Consul-General in Bali and requested that a consultation with a breast cancer specialist be organised for Francisca. The results of this consultation are unknown as yet, nevertheless it would appear likely that Francisca has suffered for some years with undiagnosed breast cancer.

According to World Health Organisation statistics, breast cancer deaths in Timor-Leste account for less than 1% of all deaths caused by disease, with tuberculosis, malaria and infectious diseases rating significantly higher as potential killers. It is not surprising then that establishment of cancer treatment facilities and services are not on the top of the priority list of the Ministry of Health at the present time. Nevertheless, as a direct result of receiving my own treatment at the highly regarded Peter MacCallum Cancer Centre in Melbourne, the Board and staff of the Centre are keen to establish a collaborative partnership with Timor-Leste in the months and years to come. My women’s NGO, the Alola Foundation, will lead the charge in the all-important health promotion work that needs to be done to raise awareness of the importance of breast care and breast self-examination leading to early detection.

It is my hope that with the vast experience and technical expertise of Peter Mac made available to our own fledgling health services, an important step may have been taken in ensuring that future generations of East Timorese women like Francisca can be diagnosed early, treated and cured of cancer in their own country and therefore surrounded by the love and support of friends and family.

Kirsty Sword Gusmão
7 August, 2013

Kirsty and her family are preparing to return to Dili in the next few days, following her own breast cancer treatment, taking with her these plans and dreams.  These are early days.  Steadily, possibly slowly, but surely we are chipping away at these inequities.

Thank you, Kirsty, for such an informative, and critical insight into the situation for women in Timor Leste.

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6 thoughts on “Bridging the Timor Gap: Dreams of equity for women with breast cancer in the Southeast Asia region’s newest nation.

  1. Pingback: Equity – Moving the conversation forward | Feisty Blue Gecko - a tail of the unexpected

  2. Kirsty, thank you for educating us on the situation of inequitable health care in Timor Leste. This post brought tears to my eyes; I am heartbroken for these women. So many of us are lucky enough to have quality — and often covered — health care.

    • Thank you for reading Kirsty’s post – and for “getting it”, Beth. There is so much to be done. Be sure that the shouting will continue! I am also really looking forward to hearing Kirsty’s updates on progress now that she is just back in Dili.

  3. Pingback: A meeting of like minds and hearts | Feisty Blue Gecko - a tail of the unexpected

  4. My research project for my Masters degree at the University of Technology Sydney relates to early detection of breast cancer in Mexico. It appears to me that the situation in Timor Leste is even worse than it is in Mexico. As Kirsty would know, and research indicates, early detection is vital in order to achieve the best outcome. The interesting thing which is common to both Timor Leste and Mexico is the cultural factor – the feeling of embarrassment and shame that many women feel, and acceptance of their destiny i.e. death. Let’s hope that this can be changed.

    • Thank you for your comment and insights. Your research sounds very interesting and I would be keen to know more. The situation in may countries, Timor Leste and my own experience in Myanmar highlights the disparities and challenges in detection and treatment of breast cancer. I will ensure that Kirsty sees your comment too – perhaps we can follow with a conversation?

      Warm wishes to you from a very rainy Yangon.
      Philippa

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