Women's Health and Cancer Advocates Press for Implementation of the Breast Cancer Patient Education Act of 2015

Despite increase in mastectomies, women not aware of their reconstructive rights

May 17, 2016
American Society of Plastic Surgeons (ASPS)

With the number of mastectomies is increasing significantly, advocates and experts fighting for improved treatments for invasive breast cancer today called for swift action by Congress and the Obama Administration to implement the provisions of the Breast Cancer Patient Education Act of 2015 (BCPEA) so women will understand their reconstruction options at the time of diagnosis.

At a briefing on Capitol Hill, women's health and cancer advocates celebrated BCPEA's enactment as an important victory but urged rapid implementation because many women remain unaware about their reconstruction rights. Accordingly, the Society for Women's Health Research (SWHR) urged Congress to appropriate the funds necessary for the Department of Health and Human Services (HHS) to fulfill its responsibilities under BCPEA, which mandates a national education campaign on the availability and insurance coverage of breast reconstruction and prostheses. Since passage of the Women's Health Care and Cancer Rights Act in 1998, health plans that offer breast cancer coverage are required to provide coverage for breast reconstruction and prostheses.

Along with action by Congress, SWHR called on HHS to take the initial steps to implement BCPEA, such as updating existing materials created by the Office of Women's Health and the Office of Minority Health and disseminating this content through the websites of relevant federal agencies.

"Passing BCPEA, frankly, is the beginning of the journey, not the end," said Phyllis Greenberger, MSW, President and CEO of the Society for Women's Health Research (SWHR). "That is why we are calling for action to implement BCPEA on an expedited basis." Underscoring the need for BCPEA implementation, David Song, MD, MBA, FACS, President of the American Society of Plastic Surgeons (ASPS), reported that many women are unaware of their reconstruction rights, including those of racial and ethnic minorities. This is particularly concerning for African American women under age 40 and Hispanic women who are at increased risk for invasive breast cancer. Among the more than 230,000 women diagnosed annually with invasive breast cancer, a recent assessment from the Agency for Healthcare Research and Quality (AHRQ) finds that mastectomies increased 36% between 2005 and 2013 while the number of doubled mastectomies tripled. Yet, even with higher rates of mastectomy, ASPS puts the overall rate of breast reconstruction among these women at well below 25%.

"Today, there are many reconstruction techniques available that restore a breast to near normal shape, appearance and size following mastectomy," Dr. Song said. "When it comes to invasive breast cancer, women, and especially those of minority backgrounds, should not be left without proper knowledge of their reconstruction rights so they can learn about their treatment options and make informed decisions."

Echoing the call for quick action, Tracy Posner, a patient advocate who opted for a full hysterectomy and a preventative double mastectomy after learning she has the BRCA gene mutation associated with an increased risk of developing breast and ovarian cancers, said that despite working in the medical field, trying to get answers about reconstruction can be harrowing. While she successfully underwent reconstructive surgery in 2016, Posner struggled to find adequate information to help her and is now speaking out so other women anticipating mastectomy can make the best choice for their care.

"You shouldn't have to work in the healthcare system to have access to information about the availability and coverage of breast reconstruction options," Posner told policymakers. "It is in everyone's interest for women to understand their treatment options, which includes access to breast reconstruction."

At the Congressional briefing, Debra L. Monticciolo, MD, Chair of the Commission on Breast Imaging for the American College of Radiology (ACR) and a Professor of Radiology at the Texas A&M Health Science Center, also stressed the importance of early detection through breast imaging so women will have greater treatment options and an improved chance for a full recovery.

"Breast cancer is a serious concern for all women but early detection and information on treatment options are powerful weapons for the best outcome," said Dr. Monticciolo. "It is extremely important that women have access to thorough and understandable information on their reconstructive rights."

The Breast Cancer Patient Education Act, which was passed on December 18, 2015 as part of omnibus spending legislation, was introduced by Representatives Leonard Lance (R-NJ) and Kathy Castor (D-FL) in the House of Representatives and Senators Roy Blunt (R-MO) and Sherrod Brown (D-OH) in the Senate. The education campaign mandated by BCPEA will inform women that breast reconstruction is possible at the time of mastectomy or after treatment is completed and if women choose not to have reconstruction, prostheses or breast forms are covered options.