It's Personal and Political: Stigma and Cancer

Stigma against cancer is personal and political, and, if neglected at the community, national and global level, it will be perpetual, too.
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President Grover Cleveland liked to go on fishing trips. He had a trusted friend with a seaworthy vessel, and when he boarded it on July 1, 1893, the American public likely believed that the president had indeed packed his fishing pole and bait.

Instead, while on board the yacht for five days, Cleveland had a malignant tumor removed from the roof of his mouth in a radical procedure that required the skill and care of six doctors who had been sworn to secrecy.

The president had cancer and, as journalist and historian Matthew Algeo notes in his recent book, The President is a Sick Man, the stigma attached to cancer at the end of the 19th century was so powerful and pervasive that devising a wild nautical scheme and deceiving the public was vastly preferable to revealing his condition.

It's tempting to consign this astonishing story to the distant past and assume that we have generally retired our suspicion, fear and secrecy when it comes to cancer. But an appraisal of the landscape of personal and political stigma associated with cancer is not yet reassuring to an advocate for its prevention or patients.

Even today, In countries around the world, stigma silences and marginalizes people living with cancer.

For example, a LIVESTRONG-sponsored study conducted in Mexico just a few months ago found that one out of three respondents believe that a person with cancer "will die an awful death."

Researchers have found the same results in studies conducted across borders and cultures. Cancer diagnoses provoke fear, ostracism and shame. For too many people, it might as well be 1893.

Meanwhile, the number of people facing cancer is growing at an alarming rate. By 2030, 27 million new cancer cases will occur each year worldwide. Experts predict that 70 percent of the global cancer burden will be endured by people in the developing world, where cancer fatality rates are higher and stigma tends to be particularly entrenched. Of course, it is also in the developing world where prevention and treatment services are often scarce.

Herein lies the challenge. Stigma thrives when misinformation and anxiety are unchecked by community education efforts or where health services are limited or nonexistent. In the absence of awareness, prevention and treatment options, more people succumb to cancer -- and the stigma is thus reinforced.

So, effective public health intervention can diminish stigma. But, while the populations of low- and middle-income countries endure a disproportionate burden of cancer morbidity and mortality, they receive only five percent of global resources dedicated to cancer and other chronic diseases.

This distribution of resources is due to many factors, but one of them is surely the stigma that political leaders have against responding to what they perceive as insurmountable, complex and expensive health challenges. This was also true of HIV ten years ago, before heads of state summoned the necessary political will to finally confront that epidemic -- which has resulted in fewer new infections every year and many lives saved.

Stigma against cancer is personal and political, and, if neglected at the community, national and global level, it will be perpetual, too.

Fortunately, there are at least two events this week that promise to weaken stigma and advance global health.

First, this week LIVESTRONG is expanding the Comparte Tu Historia -- or, "Share Your Story," -- Campaign to promote the real stories of twelve cancer survivors from across Mexico. We are collaborating with NGOs and health authorities in Mexico to reach as many people as possible in an act of hopeful rebellion against the silencing power of stigma. By illuminating the strength and courage of real survivors, we can reset attitudes about what it means to live with and survive cancer, empowering current and future cancer patients.

Second, LIVESTRONG will be among the civil society groups gathered at the United Nations High-level Meeting on Noncommunicable Disease to advocate for the 28 million people living with cancer around the world right now. We will share with heads of state our practical recommendations to provide safe, affordable, effective cancer prevention and treatment services in even the most resource-constrained settings. These reasonable guidelines are already supported by evidence gathered in places like Rwanda, Jordan and Haiti, where lives are being saved and extended with basic cancer care.

This week, patient's voices and needs, from Rwanda to Guadalajara, will finally get the attention they deserve, from communities across Mexico and to a global stage in New York City. Both efforts deny personal and political stigma an opportunity to flourish. We are asking communities to support their neighbors when they face cancer, and government leaders to defend the health of their citizens. And, if they are with us, let's hope they don't keep it a secret.

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