Author’s Note: I would like to dedicate this piece to the One Billion Rising Bangladesh campaign that is going to culminate on VDay, Feb 14, 2013. While violence against women is much more conspicuous forms of rape, domestic abuse and workplace discrimination, lack of healthcare access, especially in the case of breast cancer given its unique nature and targeted population, serves to show the underlying prejudices held against women in the country.
Breast cancer remains the leading cancer type among the global female population with 1.35 million new cases every year (1). It is also a significant contributor to the global cancer burden – in 2008, it accounted for 23% of all new cancer cases and 14% of total cancer deaths (2). The distribution of these cancer cases vary depending on the socioeconomic status of countries, but it is estimated that 69% of breast cancer deaths occurred in developing countries (3). In Bangladesh, the rate of breast cancer occurrence is estimated to be 22.5 per 100,000 females of all ages, compared to 124.8 per 100,000 females worldwide. For Bangladeshi women aged between 15-44 years, breast cancer has the highest rate of occurrence – 19.3 per 100,000, compared to any other type of cancer; cervical cancer comes in second for this age group at 12.4 per 100,000 (4).
However, the incidence rate remains a murky business, largely due to a lack of diagnosis and poor record-keeping infrastructure. Based on cancer registry data from Karachi, Pakistan, and Kolkata, India, Story et al estimates an annual incidence rate of 35-40/100,000, giving an approximate of 30,000 cases in total per year (5). The first-ever national cancer registry (6) that tracked newly diagnosed cases, started in 2005 at the National Institute of Cancer Research and Hospital (NICRH), was published in 2009 and demonstrated a steady increase in incidence rates – 10.3% in 2005 (n= 5,411), 11% in 2006 (n= 6,492) and 12.3% in 2007 (n= 6,926). The Bangladesh maternal mortality survey 2010 (7) cited breast cancer to be responsible for 21% of all women’s deaths between 15 and 49 years of age. Regardless of variations in available data, it is plainly observable that breast cancer is fast becoming a major cause of concern, not only for women, but also as an overall public health concern.
The official fight against cancer in Bangladesh can be attributed to the founding of the NICRH in 1982 as part of Dhaka Medical College, although it did not become a functional treatment unit till 1995 when it first brought in radiotherapy (8). In the last decade or so, non-governmental agencies have joined the initiative, in both rural and urban areas of the country at various scales of operation. Adhunika, a grassroots non-profit focused on empowering women, started its breast cancer awareness programs in Sajida Hospital, Keraniganj in 2011 (9) while the prominent Dhaka Ahsania Mission (DAM) established a cancer detection and treatment hospital back in 2001 and has promised to expand it to a 500 bed hospital by the end of 2013 (10). DAM also hopes to open a cancer center in each division of the country and to that end, has found a 42 bed hospital in Dhaka that supports both diagnostic and treatment facilities (11).
The case of breast cancer in Bangladesh has also attracted the attention of global agencies such as the International Breast Cancer Research Foundation (IBCRF), who partnered up with the local NGO Amader Gram back in 2006 to create four breast problem focused clinics and one specialty treatment center in Bangladesh (12). Amader Gram is an IT non-profit which focuses on using technology to alleviate the poverty burden of the rural population (13) and has developed an electronic medical record system that provides a data recording infrastructure as well as better treatment and diagnosis for patients and the country’s first free walk-in breast clinic in Bagerhat, Khulna (12). The ultimate goal of this partnership is to establish a model program to improve outcomes from breast cancer, mainly in rural bangladesh (5, 12).
However, even with such great initiatives, the future of this battle against breast cancer remains bleak. Dr. Richard Love, director of the ICBRF, estimated that 80% of all new cases will result in death (14). Field studies done in Khulna from 2007 -2008 show that 87% of new cases are Stage III+ breast cancers (where the cancer has spread to other regions) and are incurable (12, 14). The majority of these tumors were determined to be triple negative in terms of hormone receptor status (estrogen, progesterone and HER2/neu), for which treatment options are rare, inefficient and very expensive, especially in a low resource country such as Bangladesh.
It would have been easy to just put majority of the blame on lack of awareness and early detection and part of it on lack of public health infrastructure, but that is not necessarily the case, especially in the rural areas of Bangladesh. The much-heralded Westernized notion of “Awareness and early detection” does not fit the cultural context of Bangladesh where women, especially in rural areas, face more than just organizational barriers (complex healthcare system, understanding of the disease, communicating with medical staff) to healthcare (5, 15). They face psychological barriers such as fear of cancer, denial of fatality, conscious choice of not seeking care, and sociocultural barriers such as religious barriers to screening, structural violence and oppression, financial constraints and gender discrimination (5, 15, 16). Anecdotal evidence shows lack of support from male partners and family, avoidance of diagnosis and treatment due to financial burdens, widespread superstitious beliefs about cancer and its origins and sometimes ineffective treatments such as homeopathy, spiritual healing and ayurvedic medicine (5):
“It’s a curse from God for wrong doings.“; “It is evil. Once it visits your house it kills.” – Focus group participants in Rampal, Khulna
“When I told my husband I had breast cancer he said I don’t want anything to do with you, you can go die.” – 45-year-old divorced and homeless interviewee, Jessore
“The homeopath prescribed me many drugs and gave me some injections…but my breast lumps ["chakas"] didn’t go away” – 28-year-old interviewee from Rampal, Khulna
“It’s true men are not always supportive… cancer is costly, so they won’t take us to the hospital [for treatment].” – Focus group participant, Sreefaltola, Khulna
“The costs add up in people’s minds. My wife had a caesarian section and then a thyroid nodule. Even when you are a good person these thoughts cross your mind…if the costs are too much, maybe I should separate?” – Male community group discussion participant in Rampal, Khulna
Added to this mix are lack of access to healthcare, discontinuous treatment regimens that may give rise to resistant cancers, lack of female doctors (since 1971, a total of 23% of all medical graduates are female) and doctor absenteeism and malpractice (reported to be around 70% in rural clinics) (5, 17), all of which point towards unfavorable outcomes for Bangladeshi women at risk of breast cancer.
Even with such adverse conditions, all hope is not lost. Progress is being made, albeit slowly, in improving such outcomes. Reports show that the hormone receptor status, which is essential in determining treatment, has been affected by improper handling of patient breast tissue sample (5). When handled properly, 72% of samples were found to be positive, which drastically expands treatment options for such patients and increases survival rates for them (5, 18). Studies are already underway to test the effectiveness of both hormonal and non-hormonal therapy for breast cancer in Bangladeshi samples, through the international collaborative project setup by IBCRF (19). Besides clinical advances, public health approaches have been taken in terms of self-screening and palliative care, such as easy to use pain chart as developed by Dr. Rumana Dowla (20). On the social side, female health care workers are being trained (21), a more detailed registry is being built (12), awareness is being spread through fundraising, folk songs and other culturally suitable media (23, 24, 25, 26). All of these initiatives are in accordance with the recommendations developed by the Breast Health Global Initiative for low-resource and middle-resource countries (27) and the guidelines of the cancer control continuum.
Breast cancer is not only a public health issue in Bangladesh, it is also an issue of human rights and social development. A potentially fatal disease that is intertwined with the multisymbolic organ of femininity, and whose origins are shrouded in superstition and fear and connotations that reach far beyond its biological understanding, breast cancer has taken the form of the metaphorical illness as described by Susan Sontag (15, 28). In order to reduce mortality rate, improve available treatment options and outcomes of breast cancer, there needs to be dispelling of myths surrounding cancer and its origins ["as long as a particular disease is treated as an evil, invincible predator, not just as a disease, most people with cancer will indeed be demoralized by learning what disease they have" - Susan Sontag, (28)], better healthcare infrastructure, more social accountability by both the people and the government and collaborative research between international organizations, local institutes and pharmaceutical companies. But before all of that can happen, the social status of women in Bangladesh must be elevated to the level of any other male as equals, violence against women and gender discrimination must be ended, and women should be given the equal priority for their lives as any other human being. For “women are not dying because of untreatable diseases. They are dying because societies have yet to make the decision that their lives are worth saving” (29). And it is high time we step up to give the proper respect to women that they deserve.