HPV Stigma in Women of Color

When the English celebrity Jade Goody found out she had cervical cancer at age 27, there was an outcry of sympathy in the UK, as well as a stampede of young women rushing to the clinics. Most didn't know why they were heading to the clinic, but they knew they needed a pap smear, and they hoped that if they got this procedure done, it would mean they wouldn't die of cancer.

Goody, a darling of reality TV, found out about her cancer diagnosis on Bigg Boss, the Indian equivalent of the show Big Brother. She was on the show to try to make amends for previous crass and racist statements she made about the Indian actress Shilpa Shetty. (Goody herself was mixed race--half white and half West Indian.) Once diagnosed with cervical cancer, Goody immediately flew back to London where the general public worried, empathized and supported her in her journey.

The reaction in India was completely different. Members of the public went so far as to burn effigies of Goody. Many thought that she deserved to die for insulting Shetty, and she was being punished karmically by this devastating disease. Those who knew about the link between HPV (a sexually transmitted infection) and cervical cancer suggested that she had brought the disease upon herself.

But the attitudes of Indian men and women toward Goody's disease raises questions about the kind of support available to Indian women who have HPV. Because most forms of cervical cancer are linked to HPV (which is sexually transmitted), there are moral and ethical implications for women diagnosed with cervical cancer, especially in countries or cultures where monogamy and virginity-until-marriage is the norm. A study by Cancer Research UK looked at attitudes of HPV testing among Indian, Pakistani, Afro-Caribbean and White British women, and found that all of the women were confused about whether or not cervical cancer was linked to a sexually transmitted infection (in most cases it is). While all the women surveyed said that if they were diagnosed with HPV they would suspect their husbands of infidelity, only Indian and Pakistani women surveyed expressed fears that they would be blamed for contracting the virus from a man other than their husband.

In cultures where women are expected to be virgins until marriage and monogamy from the woman is expected until divorce or death, the issue of blame is significant. Women may worry that disclosure about their HPV status may put their life at risk. In one focus group a Hispanic woman recalled how her husband reacted when he found out she had cervical cancer soon after their second child was born. She was 23 at the time. “He just flipped out when my doctor told him it was a sexually transmitted disease,” recalls Carrillo, who is now 32 and divorced. “Then he began abusing me. After I was cured, he once said, ‘I wish the cancer had killed you.'”

So how do we approach HPV screenings with populations that have different cultural expectations on the sexual and reproductive freedoms of a woman? There is no doubt that, from a women’s health standpoint, cancer screening via pap smears is an essential component of maintaining health. But in certain sub-groups of the population--particularly women of color--women will need more support. While a few women have joined together to create support groups and educate the public, this important public health issue can't remain a grassroots issue forever.

Jade Goody, on the other hand, became an unlikely advocate for women's health. The government in the UK reduced the age of routine screening and reversed a trend of declining screening numbers due to demand after Goody's cancer diagnosis. Goody died of cervical cancer in 2009 at the age of 27, leaving behind two children and a legacy as an unlikely heroine for cervical cancer awareness for women of all races.