Breast Cancer “Standard of Care”: Standard for All?

When we look at the progress that has been made against breast cancer over the last twenty years, an essential measure is mortality, how many lives are actually being saved.

The big picture story is that mortality from breast cancer for the U.S. population as a whole has declined somewhat, but not nearly as much as might have been expected given the emphasis on screening over the last twenty years.

But looking deeper reveals an even more disturbing story.

In a recent article about Breast Cancer Awareness Month, Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society, said this:

What we don’t talk about during this month is that too many women in this country still don’t have access to quality mammography, or to quality treatment, which itself may have as much to do with dropping death rates as early detection. Many women simply can’t afford to get screened or get treatment, and the programs that are designed to address that lapse are woefully underfunded–to the point that in my home state of Georgia only one in five women in need has access to a program that can provide that basic part of their medical care. Or they work all day, all week, and can’t get to a mammogram facility on nights or the weekends because those facilities aren’t open except during normal business hours Monday through Friday. Bottom line: they may get the message but they can’t get the care.

Dr. Lichtenfeld describes in these vivid terms the result of this inability of women with treatable breast cancer to obtain adequate care:

How important is this disparity? Let me offer you a stunning fact: Back in the 1970s there was no difference in breast cancer mortality between white and black women. Now there is, with white women having increasingly lower mortality rates from breast cancer compared with black women. This gap only developed once mammography and more effective treatments became available. How can we ignore that fact? How can we in this country where hope and pink abound accept the fact that a large segment of our population isn’t realizing the lifesaving potential of these breakthroughs —  which in fact aren’t really breakthroughs anymore but generally accepted standards of care?

Some facts on breast cancer disparities

Breast cancer incidence rates are actually higher in white women than in African American women for most age groups, according to the American Cancer Society (ACS).* But when it comes to mortality the story is very different. In 2010, breast cancer death rates were 41% higher in African American than white women. In addition, African American women are diagnosed more often before the age of 40, and are more likely to die from breast cancer at every age, the ACS reports.

Interestingly, by 2010, according to the Centers for Disease Control and Prevention (CDC),  breast cancer screening rates were actually about the same for African American and white women in the United States. But screening rates for Hispanic, Native American and Asian women were notably lower, particularly for Asian women.

When it comes to breast cancer treatment, the CDC points out these striking differences between the experiences of African American and white women in the United States:

• When a mammogram shows something that requires follow-up, more African American women experience follow-up times of over 60 days (20%) compared with white women (12%).
• When breast cancer is diagnosed, only 69% of African American women start treatment within 30 days, compared to 83% of white women.
• Fewer African American women receive the surgery, radiation and hormone treatments they need compared to white women.

Other populations within the United States have lower incidence and mortality rates, but these broad statistics can obscure the fact that those that are diagnosed tend to have poorer outcomes. For example, the Dr. Susan Love Research Foundation points out that Hispanic women are significantly more likely to be diagnosed at a later stage with larger tumors that are hormone-receptor negative, which are more difficult to treat.

In addition, members of less affluent socioeconomic groups are underrepresented in clinical trials, and this suggests that factors specific to these populations are not adequately taken into account in the development of new treatments. This problem has been recognized for a long time but progress in addressing it has been slow, as a recent study reaffirmed.

What can be done to change this story?

Programs that provide patient navigators to guide newly diagnosed individuals through the often complex process of breast cancer treatment have been found to make a difference. For example, Harold P. Freeman, past president of the American Cancer Society, describes a pilot program at Harlem Hospital in New York that provided both breast cancer screening and patient navigation–the program, he says, raised the 5-year survival rate there from 39 percent in 1990 to 70 percent in 2000.

More recently, a large study compared patient navigation with usual care to find out what the impact of patient navigation was on time to diagnosis or time to treatment for participants–mostly minority–with breast, cervical, colorectal or prostate screening abnormalities and/or cancer between 2007 and 2010. The study found that patient navigation was beneficial in improving timeliness of follow-up or care, especially in centers that had the greatest delays under usual care.

The need for action

The reasons behind the much higher breast cancer mortality rate for African American women are understood to be complex and more research is needed to fully understand some of them, such as why women in this group (and other populations as well) are diagnosed more often at younger ages and more often with the triple-negative sub-type, which is more difficult to treat.

But there are steps that can be taken based on what we already know that will make an enormous difference, including more widespread use of patient navigation programs, dedicated efforts to include broader participation across socioeconomic groups in clinical trials and ensuring adequate funding for programs at the state level that are designed to cover those in need.

One of the essential messages of true “awareness” about breast cancer and its impact is that many women in the United States diagnosed with breast cancer are not receiving treatment that meets what is considered to be the standard of care right now. Surely most would agree that this situation is simply not acceptable. We must do what is necessary to change this story.

*Source: American Cancer Society, Breast Cancer Facts & Figures, 2013-2014

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