Research hope for women who Reach for RecoveryMarch 28th, 2013
As one of the five BRICS economies, South Africa was extremely proud to host this conference and the raw energy, colour, optimism and tragedy of what it means to be a black South African today was stamped all over it.
The opening ceremony alone was enough to bring tears to my eyes, as dancer/choreographer John Setoli, together with a poet/narrator and a singer, performed an extraordinarily moving number celebrating all facets of life.
This conference sat squarely at the heart of the development and human rights agendas, and underscored the special significance of women in this context. I learnt that in the developing world, breast cancer is only one of many insults and injuries suffered by women and cannot be tackled without addressing this chain of events.
Throughout the three days of the conference, I was emotionally battered by tale after tale – told face to face, and in film – of the experience of breast cancer in developing countries.
A South African single mother took herself to hospital when she found she was waking up each morning with a swollen head. She was told it was nothing, and to take an aspirin. Many months later, when she was in agonising pain, she was finally diagnosed with breast cancer which had metastasised to her brain, bones and liver.
The mother of a young Malaysian woman refused to bring her in for diagnosis and treatment, because of the shame involved and also her preference for traditional medicine. When her daughter finally had no choice but to come in, she had stage 4 breast cancer.
The typical presentation of breast cancer in Third World countries is as a visible lesion, poking through the breast and chest wall. Then there are those who do get diagnosed but who cannot get the services they need.
A Serbian woman who has had breast cancer twice continues to travel hundreds of kilometres away from her family to access the radiotherapy she requires, only to regularly arrive and find the equipment is not working. A young Mexican woman, whose partner left her when she was diagnosed, manages with community support and a bag filled with birdseed as a prosthesis.
On the African continent, current incidence of breast cancer is lower than that of infectious diseases (malaria, TB, HIV/AIDS) so breast cancer is not recognised as a public health priority. However, at least one in every two women who get breast cancer will die. As African economies move from Third World to ‘emerging’ and their people live longer, a veritable ‘tsunami’ of cancer is expected. There is little or no awareness or education. There is no mammographic screening program. Medical practitioners and services are few relative to need already, and grossly under-resourced.
Large international NGOs such as the Susan G Komen, American Cancer Society and Livestrong Foundation are therefore focused on drawing the United Nations’ and other policy makers’ attention to non-communicable diseases such as breast cancer, and recognising them as a global priority for health resource allocation (for further information http://www.ncdalliance.org/campaigns).
Two other themes emerged strongly from the conference. One I was very glad to see was women with metastatic breast cancer coming out of the shadows. The notion that women live with advanced breast cancer, rather than just dying from it, is key to understanding their situation better.
There is little support offered to women with ‘mets’, as they are known; there is little research that explores what they want or need; and there is no question that early breast cancer gets far more attention. Women with advanced breast cancer – obviously, mainly women in developed countries where the resources exist to help them live – often feel they are invisible and in fact too scary for others to cope with (for further information, visit: http://advancedbc.org/ and http://www.advancedbreastcancergroup.org/ ).
The second theme was passionately articulated by the Livestrong Foundation: we need to eradicate the stigma around cancers. The Foundation surveyed media and the general public in 10 countries and found that there is a critical step before awareness. Identifying cancer survivors who are prepared to speak out about their experience is key to overcoming the shame, silence and stigma that surrounds not just breast cancer, but all cancers – particularly in developing countries.
So how did I, and how will NBCF, respond to the challenges posed by this conference? Coming from a lucky country such as Australia, and faced with such elemental needs for services when you represent research, it was hard to feel relevant.
However, what I came to understand is this. Research, and only research, can cross the boundaries of space, time, race and class. Despite all I encountered at the conference, research remains the only hope of changing the future for both the developed and the developing world – and this was acknowledged and appreciated by the delegates from 46 countries who attended.
I believe there are a couple of ways in which NBCF could make a difference within the development, human rights and women’s agendas. Firstly, we should and will urge all our supporters to advocate for the institutionalisation in policy of non-communicable diseases such as cancer as global health priorities. We know that by 2030 – the same year that NBCF aims to have zero deaths from breast cancer – 70% of the burden of breast cancer will be borne by the developing world, not the developed.
Secondly, we should and will consider funding some short-term Scholarships – perhaps co-funded with the Union for International Cancer Control (UICC) – to enable expertise transfer. Such Scholarships would enable a clinician or researcher from the developing world (with a focus on the Asia Pacific region) to visit Australia for up to three months to study and learn about any aspect of breast cancer.
Watch this space.