“It would have been better if I had never known”: why Swazi women avoid cancer screening

"I went for the biopsy two weeks ago. Yesterday I went for the results and they gave me this envelope, and said I must take it to the doctor. I’m waiting for the doctor… if he says I have cancer, what will happen?" 

Lindiwe[1] sat next to me outside the cervical screening clinic at a major hospital in Swaziland, her voice barely a whisper. It was noon. She had been waiting for the oncologist since 6 a.m. When I asked, gently, how she was feeling, her answer was heart wrenching: “I’m scared. I have heard of so many dying from cancer. There is no treatment here. You have to go to South Africa... if you can get the money to go.” Then, her hands shaking, she handed me the sealed envelope containing her biopsy results, “Can you read it? Tell me, is it really cancer?”

I could never bring myself to open that envelope. Nor would I ever forget the fear that had overwhelmed Lindiwe. Many of the women I interviewed during the three months I spent researching cervical cancer screening in Swaziland echoed that fear: the fear of dying from a disease that seems incurable because of treatment inaccessibility and expense. In a country that has the world’s highest HIV/AIDS prevalence rate, women told me that cancer is worse than HIV.

I grew up in Swaziland. All throughout my childhood and youth, HIV was the thing to fear, akin to a death sentence. Notwithstanding the fact that challenges and stigma remain, Swaziland has made significant strides. HIV testing and counselling programs are widely available, and antiretroviral treatment (ART) is offered free of charge at hospitals across the country. One can actually live with HIV, and live a long, hopeful life.

For cancer, however, that kind of hope is hard to find. Hysterectomies to treat cervical cancer are routinely done in Swaziland, but there is no chemotherapy or radiotherapy readily available in the country. Cancer patients needing chemotherapy or radiotherapy seek treatment in neighboring South Africa, where costs are prohibitive. While some have the social connections and support to navigate the arduous process of applying for government funding for out-of-country treatment, others are not so lucky. Some die while waiting for treatment funding.

Lindiwe later told me that she regretted ever coming to the cervical screening clinic in the first place: “It would have been better if I had never known.” Many echoed her sentiment, telling me they would not attend cervical screening due to the lack of accessible and affordable treatment options. This avoidance is understandable and logical.

In discussing global health challenges in African contexts, there is a tendency to problematize African women and their cultures — to assume that women’s patterns of avoidance are always rooted in cultural fears, taboos, or traditions; to blame women for noncompliance; or to perpetuate colonial prejudices about disease and sexual contagion among African women.[2] I would be remiss to say that culture never influences health behaviour patterns. However, universally problematizing sexualities and cultures — plural because culture and sexuality are themselves subject to interpretation — is unfair, condescending, and misleading.

Swaziland has high levels of HIV/AIDS programming and funds, from both local and international actors. However, cancer, along with other non-communicable diseases, has long been neglected in global health programming in Africa.[3] While the multiple factors that contribute to this relative neglect in Swaziland merit further study, its consequences are felt in the lived realities of women’s experiences — including insufficient treatment options and cancer screening avoidance.

What if, rather than make easy scapegoats of women or their cultures, we paused long enough to appreciate the complex web of political, economic, and social factors that produce fear and constrain women’s choices? Those local logics, the factors that situate women’s cancer screening decisions, are not always easy to understand, and are even harder to solve. Yet, to ignore or trivialize them is to do injustice to the very women we seek to help.

Nomthandazo Malambo is a program management officer in the Maternal and Child Health program in IDRC’s Inclusive Economies program area, and the lead author of “Worse than HIV”: the logics of cancer screening avoidance in Swaziland.

[1] Not her real name

[2] Comaroff, J. (1993). The diseased heart of Africa: medicine, colonialism and the black body. In S. Lindenbaum & M. Lock (Eds.), Knowledge, power and practice: the anthropology of medicine and everyday life (pp. 305-329). Berkeley: University of California Press.

[3] Allen, L. and Feigl, A. (2017). What’s in a name? A call to reframe non-communicable diseases. Lancet Global Health, 5(2), e129-e130;  Livingston, J. (2012). Improvising medicine: an African oncology ward in an emerging cancer epidemic. Durham, NC: Duke University Press.