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23 October 2020 | Story Nombulelo Shange and Lesego Bertha Kgatitswe | Photo Pixabay
It is #BreastCancerAwarenessMonth, and women in rural areas struggle to receive and understand the life-saving messages, as much of the awareness is predominately in English, while cancer centres and health facilitates are mostly located in urban areas.

It is Breast Cancer Awareness Month, and questions around the reach of awareness are important to ponder. Who is the awareness really for? Much of the awareness is predominately in English, while cancer centres and health facilities are mostly located in urban areas. The result – women in rural areas struggle to receive and understand the life-saving messages. Accessibility remains a huge challenge when it comes to both diagnosis and treatment. Once diagnosed, black women must contend with many other socio-economic challenges that limit them from receiving treatment, even if it is free and provided by public healthcare institutions.

Overwhelming number of black women is poor and marginalised in SA

Women in the Northern Cape and parts of North West, for example, have to travel to Kimberley to access breast cancer treatment facilities. Kuruman has a satellite facility, but with limited resources and staff. Northern Cape is the largest province in South Africa when it comes to land mass, and most poor rural black women cannot afford the cost of travelling to Kimberley because of extreme poverty. A 2019 study conducted by the Pietermaritzburg Economic Justice and Dignity Group shows that 55,5% of the South African population survives on R40,90 per person per day. South Africa is also the most unequal society in the world, with those historically marginalised by colonisation and apartheid still being the most oppressed even today. Black women make up an overwhelming number of the poor and marginalised in SA. When black women are diagnosed with breast cancer, they have the burden of having to pit their bread and butter issues against their health concerns. Transport, food, and other travel costs have the ability to push these women and their families deeper into poverty when important healthcare institutions are far and inaccessible. 

Breast cancer awareness and education needs to be scaled up in the black communities to also consider these socio-economic limitations. Greater focus on primary healthcare is also needed with regard to speedy referral for screening and diagnostic tests. These interventions are still largely lacking in black communities, partly because of the myths around who is affected by cancer. The misconception is often that cancer is a disease that only affects white people, and it still persists despite the growing incidences of cancer among black women. One of the reasons influencing this racialised idea of the illness might be the fact that there are seemingly higher incidences of breast cancer among white women than among black women.

In 2011, the National Cancer Registry reported that the overall risk for breast cancer in South Africa is 1 in 29 women, and further estimated that the lifetime risk is 1 in 12 among white women and 1 in 50 among black women. These figures, however, do not account for the black women who might never receive a proper diagnosis. Current and accurate research is not available on how these figures might have changed over the past 10 years. The 2017 Breast Cancer Prevention and Control Policy, however, attributes lower incidence of breast cancer among black women to multiple socio-cultural factors, such as universal and prolonged lactation, low use of hormone replacement therapy, late menarche, early age of first birth, and a diet low in fat and high in fibre. However, due to rapid urbanisation and lifestyle changes, there has been a significant decrease in these protective factors, making black women vulnerable to increased incidences of breast cancer and mortality.

Public healthcare system had to prioritise simultaneously 

Historically, cancer, along with other non-communicable diseases, have been understood as diseases of affluence, as they are related to economic development, consumption, and lifestyle. In contrast, infectious or communicable diseases were understood as diseases of poverty and impoverishment. These crude categorisations were central in explaining global health inequalities, but the epidemiological transitions of the past few decades have forced us to think more critically about these issues. South Africa as a middle-income country is a case in point, with a disease burden of both communicable and non-communicable diseases, which the public healthcare system had to prioritise simultaneously. Breast cancer has thus been declared a national priority, as highlighted by the Breast Cancer Prevention and Control Policy of 2017.

The policy notes that women who live in rural areas are at a disadvantage regarding access to information and services; however, little is said about the intersections of race, class, and gender in understanding the structural barriers to breast cancer awareness and knowledge. The poor or inadequate breast cancer awareness and knowledge among black women should be a call for concern.

Poor knowledge and awareness of breast cancer leads to delayed detection, presentation, diagnosis, and treatment. This results in a late stage of cancer upon diagnosis, aggressive cancer treatment, severe side effects, poor quality of life, or worse – mortality. As public health specialists often say, ‘equity in healthcare begins with equity in health education’. Sociological analysis and theorising are thus important for us to understand these structural barriers, starting with how black women’s bodies are seen and treated. Researchers around the world have highlighted how the healthcare system treats black women differently as a result of implicit racial bias, discrimination, and racism.

American critical race theorist and feminist scholar, Patricia Hill Collins, attributes the discrimination experienced by black women to vectors of oppression that intersect in black women’s lives. Poverty, lack of representation in healthcare systems/leadership, discrimination along racial and gender lines – all these vectors come together and make access to healthcare a huge challenge for black women. Systems marginalise black women for economic gain or to maintain patriarchal dominance, making even the most basic rights and institutions inaccessible to black women.

The exclusion of black women

Beyond awareness, these challenges also speak to the exclusion of black women in public spaces, in senior positions within healthcare, in leadership, and in important decision-making that can impact how they navigate the world. The lack of representation affects even the personal aspects of black women’s lives, such as how they experience illness.

Feminists tackle this challenge by turning the personal into the political. Politicising the personal is forcing the challenges that women are faced with into the public space, compelling institutions and leaders to address these challenges. Breast cancer awareness does this in part, which is one of the things that makes the movement so important. But is it leaving black women behind?  

While awareness might be lacking for black women with breast cancer, it is important to note that some women have exercised their agency to advance breast cancer awareness. Mama Lillian Dube, for example, used her public platform to talk about her experiences of breast cancer, demystifying the illness, and advocating for quality healthcare services for women. We also need to tap into existing structures and initiatives; community healthcare workers have done great work in the past to create awareness around HIV/AIDS. Similar strategies should be considered for breast cancer awareness to ensure that no woman is left behind.  

Opinion article by Nombulelo Shange, Lecturer in the Department of Sociology, University of the Free State, and Lesego Bertha Kgatitswe (Lecturer in the Department of Sociology at Sol Plaatje University)  

 


News Archive

Higher than expected prevalence of dementia in South African urban black population
2010-09-22

 Prof. Malan Heyns and Mr Rikus van der Poel

Pilot research done by University of the Free State (UFS) indicates that the prevalence of dementia, of which Alzheimer’s disease is only one of the causes, is considerably higher than initially estimated. Clinical tests are now underway to confirm these preliminary findings.

To date it has been incorrectly assumed that dementia is less prevalent among urban black communities. This assumption is strongly disputed by the findings of the current study, which indicates a preliminary prevalence rate of approximately 6% for adults aged 65 years and older in this population group. Previous estimates for Southern Africa have been set at around 2,1%.

The research by the Unit for Professional Training and Services in the Behavioural Sciences (UNIBS) at the UFS and Alzheimer’s South Africa is part of the International 10/66 Dementia Research Group’s (10/66 DRG) initiative to establish the prevalence of dementia worldwide.

Mr Rikus van der Poel, coordinator of the local study, and Prof. Malan Heyns, Principal Investigator, say worldwide 66% of people with dementia live in low and middle income countries. It is expected that it will rise to more than 70% by 2040, and the socio-economic impact of dementia will increase accordingly within this period. 21 September marks World Alzheimer’s Day, and this year the focus is on the global economic impact of dementia. Currently, the world wide cost of dementia exceeds 1% of the total global GDP. If the global cost associated with dementia care was a company, it would be larger than Exxon-Mobil or Wal-Mart.

The researchers also say that of great concern is the fact that South Africa’s public healthcare system is essentially geared toward addressing primary healthcare needs, such as HIV/Aids and tuberculosis. The adult prevalence rate of HIV was 18,1% in 2007. According to UNAIDS figures more than 5,7 million people in South Africa are living with HIV/Aids, with an estimated annual mortality of 300 000. In many instances the deceased are young parents, with the result that the burden of childcare falls back on the elderly, and in many cases elderly grandparents suffering from dementia are left without children to take care of them. “These are but a few reasons that highlight the need for advocacy and awareness regarding dementia and care giving in a growing and increasingly urbanized population,” they say.

Low and middle income countries often lack epidemiological data to provide representative estimates of the regional prevalence of dementia. In general, epidemiological studies are challenging and expensive, especially in multi-cultural environments where the application of research protocols relies heavily on accurate language translations and successfully negotiated community access. Despite these challenges, the local researchers are keen to support advocacy and have joined the international effort to establish the prevalence of dementia through the 10/66 DRG.

The 10/66 DRG is a collective of researchers carrying out population-based research into dementia, non-communicable diseases and ageing in low and middle income countries. 10/66 refers to the two-thirds (66%) of people with dementia living in low and middle income countries, and the 10% or less of population-based research that has been carried out in those regions.

Since its inception in 1998, the 10/66 DRG has conducted population based surveys in 14 catchment areas in ten low and middle income countries, with a specific focus on the prevalence and impact of dementia. South Africa is one of seven LAMICs (low and medium income countries) where new studies have been conducted recently, the others being Puerto Rico, Peru, Mexico, Argentina, China and India.

Mr Van der Poel says participating researchers endeavour to conduct cross-sectional, comprehensive, one-phase surveys of all residents aged 65 and older within a geographically defined area. All centres share the same core minimum dataset with cross-culturally validated assessments (dementia diagnosis and subtypes, mental disorders, physical health, anthropometry, demographics, extensive non-communicable risk factor questionnaires, disability/functioning, health service utilization and caregiver strain).

The local pilot study, funded by Alzheimer’s South Africa, was rolled out through an existing community partnership, the Mangaung University of the Free State Community Partnership Programme (MUCPP).

According to Mr Van der Poel and Prof. Heyns, valuable insights have been gained into the myriad factors at play in establishing an epidemiological research project. The local community has responded positively and the pilot phase in and of itself has managed to promote awareness of the condition. The study has also managed to identify traditional and culture-specific views of dementia and dementia care. In addition, existing community-based networks are being strengthened, since part of the protocol will include the training and development of family caregivers within the local community in Mangaung.

“Like most developing economies, the South African population will experience continued urbanization during the next two decades, along with increased life expectancy. Community-based and residential care facilities for dementia are few and far between and government spending will in all probability continue to address the high demands associated with primary healthcare needs. These are only some of the reasons why epidemiological and related research is an important tool for assisting lobbyists, advocates and policymakers in promoting better care for those affected by dementia.”

Media Release
Issued by: Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt@ufs.ac.za  
21 September 2010

 

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