Stigma and Silence: Unwelcome Side Effects of Cancer Around the World

Dec 06, 2012 by Claire Neal (LIVESTRONG Staff)

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The LIVESTRONG Foundation’s Claire Neal, VP of Global Strategy and Rebekkah Schear, Program Manager, International Programs, expose two side effects to cancer that are unwelcome hurdles to helping those affected – especially on a global scale. For more perspective on the fight against global cancer, tune in to this week’s series on global cancer airing on PRI the World.

More people around the world are surviving cancer than ever before, and we know through the work of partners in countries like Uganda, Mexico, Haiti and Rwanda that high quality cancer treatment and care is possible even in countries with limited resources.  Yet, increasingly we’re seeing that even when care is available, stigma often stands in the way of people receiving the treatment they need.

Five years ago, the LIVESTRONG Foundation set out to better understand how cancer is being perceived and portrayed around the world.  We found stigma wherever we went.  In interviews with cancer survivors, health care providers and community members, we learned that people view cancer as a death sentence and this belief is impacting their ability to receive treatment and support.  In countries ranging from Argentina to China to the United States, we heard story after story of people who avoided being diagnosed because they feared the results and felt nothing could be done.  In our research, 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 the incurable stage.  In fact, up to 80% of cancer in the developing world is only diagnosed at the incurable stage.

Further complicating things, those who are diagnosed often suffer from the myths and misconceptions about cancer from their community.   In Mexico, we spoke with a survivor whose neighbors poured pesticide around her house fearing the spread of her cancer.  In Italy, we spoke with a man who lost his job when his employer assumed his diagnosis meant he would no longer be able to work.  Everywhere we went, we heard stories of people who had been ostracized by their friends and neighbors after their diagnosis, people whose children had suffered from the stigma of their disease, and we heard from people who had lost their jobs and even their families due to the fear surrounding their cancer.

And this is all unnecessary suffering.

The LIVESTRONG Foundation is working to change the way cancer is perceived and portrayed around the world, so that people affected by cancer can get the support and care they need.

The voices of those who have survived cancer are one of the most powerful tools we have in fighting the stigma associated with cancer.  Sharing their stories and speaking out about their experiences, cancer survivors like those in the video have the power to dramatically change the experience of cancer for others.  In countries around the world, LIVESTRONG is working with local partners to elevate the voice of cancer survivors and challenge myths and misperceptions of the disease.