A version of the following will be published soon in India Currents magazine.
by Dr Ophira Ginsburg and Dr Raywat Deonandan
Ophira Ginsburg is an oncologist, a scientist at the Toronto Women’s College Research Institute, and an Assistant Professor at the University of Toronto’s Dalla Lana School of Public Health. Raywat Deonandan is an epidemiologist and Assistant Professor in the Interdisciplinary School of Health Sciences at the University of Ottawa.
“When I told my husband I had breast cancer he said I don’t want anything to do with you. You can go die.” These are the words of a 45 year old divorced and homeless woman in Bangladesh. When we think of breast cancer, our image is usually of brave women seeking treatment in American hospitals, or of loved ones participating in those many fundraising runs that have popped up around the country. It’s rarely of the already destitute and downtrodden women of the developing world being further denigrated or cast aside. Yet it is in the slums and villages of the world’s poorest places where scientists are only now realizing that breast cancer is a hidden epidemic. While high-income countries have begun to celebrate significant recent progress toward curing women with breast cancer, the extent and severity of this disease has only begun to be recognized in poorer countries. And the nations of South Asia are particularly at risk.
Once considered a problem of affluent, Western societies, breast cancer has emerged as the most common cancer among women in most countries worldwide. Breast cancer is second only to cervical cancer in some of the more remote populations of South Asia. With improved access to cervical cancer screening and treatment, as well as the recent availability of low-cost vaccines against human papilloma virus (HPV, the primary cause of cervical cancer), breast cancer will soon emerge as the most prevalent cancer and commonest cause of cancer-related death among all women in South Asia.
It is estimated that each year 76,000 women die of breast cancer in South Asia, and over 50,000 in India alone. The prevalence of breast cancer in the region is expected to grow due to a combination of population explosion and, perhaps ironically, some of the more positive effects of economic development, including increased life expectancy, delayed child bearing and smaller numbers of children. Add to this the decreased duration of breast feeding and the adoption of “Western” lifestyles (higher fat diets, overweight and obesity, and reduced activity), and it is projected that global breast cancer cases will grow from 1.4 million in 2008 to over 2.1 million cases by 2030, due in large part to the increase in cases in South Asia.
South Asian women living in North America are also at risk. When families migrate to the US or Canada, beliefs and attitudes about breast cancer, as well as women’s roles and responsibilities remain, making women from South Asian countries particularly vulnerable to undiagnosed breast disease. South Asian women in North America are among the least screened populations for both breast and cervical cancer. But at least in America, the surrounding culture is encouraging of the seeking of care; the same cannot be said for the culture surrounding women’s health in South Asian nations.
Despite the high quality of cancer care in some urban centers, such as the Tata Memorial Hospital in Mumbai, where more than 70% of patients receive treatment at almost no cost, many people suffering from cancer in India are simply unable to attend such a facility. A recent, high-profile study of Indian cancer mortality highlighted key differences in cancer deaths between urban and rural settings. Distance, education, language, awareness and even psychological barriers persist in preventing those suffering from seeking and receiving appropriate care. Misconceptions about the origins and implications of cancer abound, muddying any potential public education initiatives. Much like other diseases discussed openly in the West, in many South Asian communities, stigma remains a daunting barrier to both measuring the problem and treating it.
Inconceivably, unfairly and tragically, shame has entered the equation, often preventing sufferers from acknowledging their conditions or even sharing their status with loved ones. This is all the more tragic for breast cancer because it is a treatable and often curable disease.
Our recently published work in rural Bangladesh, in a region of about 15 million people, just 80 miles from Kolkata, taught us that most women do not seek care for a serious breast problem until it is too late. More than 80% of new cases we see at our small breast centre– “Amader Gram” (“Our Village” in Bengali)– present with very advanced, generally incurable disease. When we asked these women why they apparently waited for months and even years before seeking care, most said that they were aware that they had a serious problem, even a life-threatening disease, but told us they had “no choice” to seek care. Almost all reported a financial, geographical, or family-related obstacle to seeking care. And most of them viewed breast cancer as a curse and a death sentence, a sentiment seemingly shared by their communities, since women who do seek treatment often risk divorce or abandonment. As a consequence, many women die without ever seeking care.
These women’s words were as heartbreaking as they were concerning. Their incorrect perception of breast cancer’s treatability is reflected in one woman’s stark statement that, “No one getting cancer gets saved.” Another suggested a demonic origin to the disease: “It is evil. Once it visits your house, it kills.” But a prevailing attitude is one of shame and guilt, as in one woman’s belief that “It’s a curse from God for wrong-doings.”
There are, of course, other reasons that South Asian women are not seeking or receiving care. One widely-reported trend is a basic mistrust of doctors, or a desire to only see a female doctor, which is difficult to accommodate. This has lead to many patients turning to alternative medicine, such as homeopathy, Ayurveda and spiritual healing, none of which has shown any success. As a 28 year old patient told us, “The homeopath prescribed me many drugs and gave me some injections… but my breast lumps didn’t go away.”
As in all communities without socialized medicine, especially those with pervading poverty, the potential for a serious disease to financially ruin a family is tangible. This may compound the stigma, as many women fear that their husbands would sooner abandon them than to shoulder the immense financial burden that cancer treatment may entail. This has accelerated the turn to cheaper, though unproven and possibly harmful alternative treatments.
Even when the husband and in-laws are supportive, the money just might not be there. As a 30 year old patient reported, “Two years ago I noticed a lump. The homeopath prescribed a paste that made my skin burn like a spice and now I can’t touch my breast because it’s so painful. My husband earns Taka 150 (US $2) per day…he wants me to go see a good doctor. But it will take time to save up for this…My last visit to the doctor cost Taka 3000 (US $43).”
Addressing this simmering epidemic is clearly problematic, when so many cultural, financial and logistic barriers conspire to deny care to those most in need. The situation is exacerbated further by structural failures in nations’ formal health systems. Doctor absenteeism, reported by one study to be over 70% at smaller clinics in Bangladesh, and doctor malpractice (either as a result of incompetence or greed) contribute to the perception that modern, Western medical care is ineffective and corrupt, and that cancer is “a death sentence”. Furthermore, services that should be very low cost or free have been co-opted by individuals seeking to make a profit from an overstressed medical system, such that many services required for standard breast cancer care are unnecessarily unaffordable by the average family. The problem of breast cancer in South Asia is a combination of cultural, social, infrastructural and political issues. It’s in the latter arena that an impact can be most immediately felt.
Tedious bureaucratic systems, lack of collaboration across the health sector, and poor governance have contributed to delaying advances in health care solutions throughout South Asia, and must be minimized for significant progress to be made. A commitment to this aim alone could have major implications for advances and cost savings in not only breast cancer care, but many other infectious and chronic diseases, as well.
Despite the gloomy picture that our story paints, there is reason for hope. In October of last year, the Global Task Force on Expanded Access to Cancer Care and Control (GTF.CCC), published “Closing the Cancer Divide,” which explores specific opportunities to affect the global burden of cancer. Over one hundred authors from 56 countries challenged myths: namely that the efforts to narrow cancer divide are unnecessary, unaffordable, unattainable and inappropriate. Similar arguments were heard a decade ago as justifications for inaction on HIV/AIDS.
The report suggests that given the projected economic losses due to cancer, we cannot afford not to address these inequities. Investment in cancer control will mitigate the burden of a wide range of diseases. Costs can be dramatically lowered with innovative financing and procurement, as the GAVI Alliance has achieved for vaccines. The report lists numerous opportunities for building on the available resources. Cancer screening for breast and cervical cancer can partner with maternal and child health, sexual and reproductive health programs; telemedicine will help all health and education programs. Furthermore, community-based solutions to reduce stigma and improve participation in cancer screening among South Asian populations living abroad can make a significant impact in survival from breast cancer.
Given the continued but fragile economic expansion of India and her neighbours, focusing on controlling a potentially economically crippling epidemic is well advised. Parallel efforts in making health care more responsive, while engaging in public health education to reduce the stigma and misinformation about breast cancer, are important broad steps to getting care for those in need. Percolating through these strategies, though, must be an awareness of the need to empower women to advocate both for their health and their deserved status in society and in the home, to better shrug off the bite of stigma. Effective and affordable treatments for breast cancer do exist. Our inability to care for so many stricken South Asian women is evidence that it is us, not they, who should be ashamed.
UPDATE: The full version of this article is now available at India Currents