This is a guest post written by Loyce Pace Bass & Rebekkah Schear at the LIVESTRONG Foundation.
By now, people are aware of the growing burden of cancer and other non-communicable diseases (NCDs) around the world. Last month marked the second anniversary of a United Nations High-level Meeting that focused on this very issue, only the second time such an event has addressed global health since one on HIV/AIDS. While people often highlight the differences between NCDs and HIV/AIDS, there are some significant similarities.
Both require comprehensive programs that equally address prevention and treatment. Also, both issues benefit from strong h0ealth infrastructure and systems that allow for longer-term management of complex diseases. They even share infectious agents among their risk factors. Arguably, the most common similarity is stigma. In fact, stigma is one of the most significant barriers that communities, cultures, and countries face in the fight against cancer, and yet it is relatively unaddressed by the global health community. The story featured recently in the New York Times of Gertrude Nakigudde, whose husband left her as a result of her cancer diagnosis, depicts the social stigma that so many people affected by cancer face on a daily basis around the world.
In an effort to better understand the nature of cancer-related stigma and its impacts, the LIVESTRONG Foundation conducted 18 months of global research across ten countries and discovered that, while 78% of respondents would tell their families if they were diagnosed with cancer, only 34% would tell their friends, and only 14% would tell “everyone.” Our research illustrated that people view cancer as a death sentence and this belief is impacting their ability to receive treatment and support. In fact, the data showed that far more people chose fear of the result as the reason for not getting screened for cancer than all other answers (including lack of access to care and the cost of screening). This becomes a self-fulfilling cycle, as those who delay diagnosis often only come to receive care when their cancer is at an incurable stage.
Similar to mental health or HIV/AIDS-related stigma, cancer stigma can negatively affect medical decision-making and the provision of supportive care once someone is diagnosed; it can become a significant source of stress, and it can increase suffering. At a population level, governments are less likely to devote resources to reduce the cancer burden if individuals affected by the disease are reluctant to express their needs or to advocate for themselves or others.
LIVESTRONG Foundation has been leading the global fight against cancer stigma for the last five years, launching several innovative research studies, advocacy efforts, media campaigns, and trainings around the world with the ultimate goal of improving quality of life for people affected by cancer. In order to do this, we sought to better understand and document cancer stigma, raise awareness of the issue at the international level, and address cancer stigma by improving knowledge about cancer, changing perceptions through community education, and empowering communities to raise a personal and public dialogue about the disease.
Currently, the Foundation is implementing a series of trainings about cancer stigma and advocacy targeted towards NGO representatives and cancer survivors in developing countries, in collaboration with the Women’s Empowerment Cancer Advocacy Network (WECAN). This fall, we trained advocates from Georgia, Kenya, Madagascar, Rwanda, South Africa, Uganda, Zambia, and Zimbabwe.
In the African regional training held in Uganda last month, advocates shared a number of common myths that often deeply affect quality of life and further perpetuate stigma: that cancer is a death sentence, that it is a curse, that is caused by witchcraft, that it causes a patient to be abandoned by a spouse or never be able to get married, that it is a punishment, and that someone with cancer should be pitied. Advocates spoke of the social isolation they had witnessed and experienced as a result of cancer. We shared evidence-based methods for dispelling stigma and, at the conclusion of the training, had advocates immediately put that knowledge into practice by crafting and sharing their own strategies for addressing stigma.
One participant shared the following, as a result of the training: “. . . my passion for cancer knowledge prevention, diagnosis and treatment [is] enhanced . . . [I am] a committed, active advocate.”
These types of trainings help build and support communities of cancer survivors locally, regionally, and globally to change the way cancer and other NCDs are perceived and, subsequently, mobilize the resources necessary to address these diseases.
See what the world is saying about cancer. Help fight stigma, and empower survivors everywhere.