As a country, we collectively put forth great effort to raise awareness for breast cancer. Survivors and supporters walk and run for the cause. Corporations and retailers donate proceeds to research. And, breast cancer is a hot topic on television, on social media, and in newspapers and magazines.
Which is why it's stunning that there still remains so much confusion around the disease -- especially when it comes to patient literacy about breast cancer screening guidelines. Debates in the medical community about the value of an annual mammogram contribute to an environment where women are unsure of what's best for their health.
And, frankly, that's inexcusable.
Women's voices need to be heard in this debate. Too often, what women want, expect and experience from their annual screenings receive little-to-no attention.
For this very reason, the Society of Women's Health Research (SWHR) set out to better understand women's habits, perceptions and barriers around breast cancer screening and mammograms. We conducted a survey of 3,500 women, conducted focus groups and interviews, and featured studies by expert researchers in the Journal of Women's Health to gather real insights.
All of the research findings pointed to the same core set of tensions: Real barriers to mammography exist and women want improved access to better screening technology.
The first indication that barriers exist comes from the survey's finding that women know screenings are important, but don't always act in their own best interest. More than three-quarters of women report having breast exams or mammograms routinely, yet more than 40 percent fail to make it an annual occurrence, despite the fact that guidelines from the American Cancer Society and major medical societies consistently recommend routine screenings.
According to the survey, high cost and lack of insurance are the most significant barriers to mammography. Women also report that they must factor non-medical costs, such as those for travel or childcare, into the time and effort it takes to get a mammogram.
Taken together with the fact that nearly two-thirds of women are unaware that the Affordable Care Act requires that Medicare and commercial health insurance cover preventative services like mammography at no cost sharing to the patient, these findings suggest that more frequent and effective communications are needed to help break down barriers. It's critical that we make more women aware of how they can help themselves.
Perhaps the high incidence of false positives is also a deterrent. Nearly half of the women surveyed report that they have been called back for further testing at some point in their lifetime after receiving abnormal mammogram results. These women experience feelings of fear, stress and sadness.
I'm one of these women, and I can say with absolute certainty that I felt each one of these emotions. It burdens not only women, but their families, too.
So, the status quo isn't working -- particularly not for women's mental well-being. Many might argue it isn't good for women's physical well-being, as well. Four in five women agree that access to mammograms that offer better detection and lower their chances of being called back for more testing is important.
What's more, women overwhelmingly believe that 3D mammograms, which are proven to be more accurate in finding invasive cancers earlier and decreasing call backs due to false alarms, should be covered by insurance. Two-thirds of these women say that they would consider switching insurance companies for superior technology like 3D mammograms.
This data makes it clear to me that the conversation needs to shift and policies need to change. The Department of Health and Human Services (HHS) must develop clear, concise breast cancer screening guidelines. Education about the Affordable Care Act needs to improve and Medicare and private payers must provide adequate payment for advanced breast cancer screening. Medicare and private payers must provide adequate payment for technology that improves accuracy. We know that when reimbursement for mammography does not cover the cost of a procedure, patient access suffers.
When real patients' needs -- real women's needs -- are adequately and effectively addressed is when we will stand strongest in the fight against breast cancer.
What Women Want: Expectations and Experiences in Breast Cancer Screening: Survey from the Society for Women's Health Research, September 2014