In Many Countries, Cancer Patients Face Stigma, Misperceptions

The last thing a person needs after receiving a cancer diagnosis is to feel ostracized by friends or fear being left by a loved one.

But in many countries, the stigma attached to cancer and the perception that cancer equals death creates great social costs for patients.

Claire Neal, senior director for mission at the Lance Armstrong Foundation, which is researching cancer stigma around the globe, told the NewsHour that patients often voice fears of being blamed for the diagnosis, and that some survivors have shared stories about husbands who left when they learned of the disease.

“We’ve seen that in Mexico, we’ve actually heard that in quite a few countries,” Neal said.

A survey of nine countries,  including Japan, Mexico, Russia, Argentina, China, France, India, Italy ad South Africa, conducted by the foundation and highlighted at the International Conference on Global Health this week found that 25 percent of respondents believe cancer patients brought the disease on themselves. More than half of respondents in China and India agreed with the sentiment. About 500 people were polled in each country.

The numbers rang true to Jesmin Shafiq, a doctor and epidemiologist from Bangladesh who now works in Australia and was attending the conference. Her sister-in-law in Bangladesh died of breast cancer because she refused to go to a doctor.

“She thought it was a shame on her, so she kept it to herself, that led to her advanced condition and that led to her death,” Shafiq said.

Feelings of guilt, that the patient did something wrong and will be a financial burden to their families also contribute to people not wanting to seek medical help, Shafiq said.

Stigma around cancer is a relatively untapped field, while much research has been done around HIV/AIDS and mental health, which are often highly stigmatized.

Research conducted in South Africa, presented by Christine Claypoole from John Snow Inc., found that 70 percent of 800 surveyed households said a cancer diagnosis indicated lower fertility or virility and meant the person was less of a man or woman.

About a third of respondents also said they would not marry someone with cancer and would not allow their children to marry someone who was diagnosed.

Different cancers can carry different perceptions as well, said Anita Chandra of RAND Corp., who is developing a global index of cancer stigma for the Lance Armstrong Foundation.

“All cancers are not sort of created equal in terms of how people view them,” Chandra said. Cervical and testicular cancers might carry perceptions on sexual health or behavior she said, while something like lung cancer could be attached to some sentiments of blame.

While cancer activism is highly visible in the United States, Neal said it’s only in the last decade that people have really become open about talking about cancer diagnoses here. She said survivors sharing their stories, showing that they continue to thrive after treatment, is part of the key to dispelling stigma in all countries.

Dispelling the idea that cancer can only mean death is also vital to encourage people to take preventative measures and seek care, she said. If they believe there is nothing to be done for the disease, they won’t take steps to save themselves.