Breast cancer is color blind.
Unlike some diseases that are less common among certain races for biological reasons, no race has an inherent genetic safeguard against this debilitating cancer. Why, then, are African-American women 37 percent more likely to die from the disease than women of any other race?
According to the Susan G. Komen Breast Cancer Foundation, African-American women have less risk of getting breast cancer than white women, but a much higher risk of death. Diagnosis often does not occur until the cancer has moved into later stages and spread to other areas of the body, and in the past, African-American women may have been less likely to get regular mammograms.
Most experts believe that socioeconomic factors account for a large part of this disparity. Limited or no access to health care, distrust of the health care system, lack of understanding of the proper preventative measures like regular exercise and clinical screening are all possible causes mentioned by the U.S. Department of Health and Human Services.
Kathy Phifer, an African-American woman who survived breast cancer, proposed that the disparity may be rooted in minority women's "I don't want to know" attitude and, she says, "It's what you don't want to know that's going to hurt you in the long run. I think they have to get out of that mind set to more of a positive 'no, this is what I have to do.' They say change is the hardest thing to do, but people have to think about how long they want to live on this earth."
Brenda McCants, another African-American survivor and a member of African-American breast cancer support foundation the Sisters Network, has noticed a sense of shame around the disease.
"There has been, in the African-American community, a stigma about being diagnosed with breast cancer. I know quite a few women who have not even told their family, they keep it to themselves," she said.
The Sisters Network, whose motto is Stop the Silence, wants minority women to know that there's nothing to be ashamed of. McCants explains that the organization is "trying to get the word out in the African-American community that we are living, the medicine we have now is working, you are able to be a mommy to your children or a wife to your husband, you don't have to leave this earth."
Today, the rates of mammography are close to equal for white and black women, but the divide in survival rates persists. A number of studies suggest that this may be due to inadequate follow-up after an irregular mammogram. One of these studies, from the American Journal of Public Health, reported that African-American women were more likely to report either very low or very high perceived susceptibility to breast cancer they were also significantly less likely to have a friend who had ever been diagnosed with breast cancer.
These psychosocial factors suggest that breast cancer may be less at the forefront of medical concerns in the minds of black women, regardless of individual risk. The study also concluded that inadequate communication of screening mammogram results was significantly more common among African-American women.
Dr. Amber Isley, an African-American physician at the Mayo Clinic in Jacksonville, Fla., believes that the lack of proper screening and follow-up care may be related to a cultural factor similar to the one identified by McCants.
"In the Afro-American community, the matriarch of the family has to present themselves as the strong person in the family. They basically make sure everything runs correctly, make sure everybody else is taken care of, they rarely come forward with health problems. They keep it private because they want to make sure everyone else is taken care of first."
However, these psychosocial reasons, even when added to socioeconomic factors, are not enough to fully explain the increased risk.
According to Dr. Isley, "we know there's a biological factor; we just don't know enough about it."
She explains that many African-American women's breast tumors are of a particularly dangerous and less treatable variety called triple negative. Early research shows that triple negative breast tumors are similar to the types of tumors found in many people of West African descent.
Even if effective treatments are developed to tailor to triple negative breast tumors, the statistics won't change if African-American women don't start getting diagnosed and treated sooner. Her message to the family of African-American women affected by breast cancer is that it's not a death sentence, it is a curable and over 80 percent of early stage breast cancers are cured and patients live beyond five years. That's one of the best odds out there for cancer. If you catch it early and are aggressive upfront, once it's over it's over other than just routine surveillance. Hopefully, if African-American women realize that they need not fear being viewed as weak by their families, they will be more open to seeking immediate treatment and to speaking about their experience.
She says, "African-American women are notorious for not sharing their stories with their families, therefore, when their daughters or sisters or aunts come up with an abnormal mammogram they may not know that they are at an increased risk for breast cancer."
Today, many people are still waiting for better access to healthcare, and until that arrives and more is known about the biology that may make African American women more susceptible to breast cancer, the solutions lie in large part on the individual level.
Phifer urges women to be proactive if they have even the slightest feeling that something may be wrong.
"You need to advocate for yourself. It's some serious business, it's nothing to play with -- it's your life. If you don't want to do it, fine. Go and do it any ways. Get it out of your mind that you don't want to know what's wrong with you because the longer you wait the worse it's gonna get."