The role of non-profits in the mammogram debate.

With immediate access to new information on breast cancer research, more and more people are turning to non-profits for guidance. With no template describing exactly how to find a cure for such a destructive disease, it is hard for the general public to understand all the twists and turns along the way. Non-profits play off their emotional connection to educate on the scientific side of cancer research. Women and those affected by the disease have come to rely on these organizations to find support, information, and, eventually, a cure. This perspective piece follows the non-profit world full circle to try to better understand the fondness masses have toward non-profit organizations.

The spotlight was cast on breast cancer on December 6, 2010, when it was reported that doctors had advised Elizabeth Edwards not to continue with anti-cancer treatments. Edwards had become a survival advocate as she publicly fought the disease from her diagnosis in 2004, and she remained a pillar of strength through her then-husband’s presidential campaign. Edwards died the day after the statement was released, and the loss of such a resilient woman who had so much fight in her reinforced difficult questions. As Nancy Brinker, Susan G. Komen for the Cure founder, eloquently stated, “Elizabeth Edwards’ death reminds us that there is still plenty to worry about, that our exponential progress is still not total victory over a disease that will kill 40,000 women in the United States and 10 times that number worldwide” [1].

Perhaps a major component included in the “plenty to worry about” category is the frequent change in advice given to women on when to begin getting mammograms. While new research developments are reported that prompt public discussion, contradictory advice about such things as when women should begin having mammograms can be confusing. Many women can relate to Whoopi Goldberg’s outburst on The View: “At some point, someone is going to have to make a decision about when they think it’s okay!”

Notably, in November 2009, the U.S. Preventive Services Task Force (USPSTF) assessed that there are few benefits from mammograms for women ages 40-49 and recommended that women without a high risk of breast cancer have mammograms every other year rather than annually. Less than one year later, in September 2010, the New York Times brought attention to a study from Norway that concluded that mammograms do not necessarily decrease the mortality rate of breast cancer. As new data questioning established medical protocol is reported, women are increasingly seeking clarification from such non-profit organizations as Susan G. Komen for the Cure and the Breast Cancer Research Fund (BCRF).

Since its inception in 1982, Komen has been dedicated to keeping women informed about breast cancer and releasing prompt responses to new research developments, while the BCRF is a leading contributor to genetic susceptibility research and one of the first organizations to expand its base to more than 24 countries across the globe. In response to the USPSTF’s report, Dr. Dara Richardson-Heron, CEO of the Greater New York City Affiliate of Susan G. Komen for the Cure (Komen GNYC), said on the organization’s blog, “Because we still do not know what causes breast cancer, early detection is the only hope for survival” [2]. The blog post addressed the specific claims under question and included a national statement, opinions from prominent members of Komen GNYC’s Medical Advisory Board, and statements from public officials. Komen GNYC also was flooded with questions and requests for clarification after the New York Times article about the Norway study was published. In a September 23, 2010, post on the Komen GNYC website, the Medical Advisory Board stated, “We certainly understand that mammograms are not perfect but they are currently our best tool for early detection and risk assessment. We also agree and fully support more research to identify screening tools that will be more effective, sensitive and specific than mammography” [3].

Women also turned to other trusted organizations for guidance on this ambiguous issue, including the American Cancer Society, American Congress of Obstetricians and Gynecologists, and American College of Radiology. Dr. J. Leonard Lichtenfeld, deputy chief medical officer for the national office of the American Cancer Society, encouraged women to continue getting routine mammograms: “We have a public health recommendation that we believe has saved lives, and we don’t believe the evidence is sufficient to change that position” [4]. Meanwhile, Dr. Carol Lee, chairwoman of the Breast Imaging Commission of the American College of Radiology, expressed frustration about the new questions surrounding mammography: “We have tried so hard to encourage women for years to get screening mammograms, and I’m worried that this will set back the cause and result in a decreased utilization of a tool that we know can save lives” [4].

Along with the confusion of trying to understand cancer’s complexity, many are confused by the constant reporting of such findings. “The truth is: science is not exact,” Anita McFarlane, Director of Grants and Public Policy at Komen GNYC, points out, and that leads to continuously evolving research findings. The USPSTF is “simply reporting findings. As a government-funded organization, they have to report the data they find and we have a right to know their progress.” Richardson-Heron agrees, stating that “informing the general public can shed light on the confusion and eliminate much of the anger that results from it.” Making research reports public has shown many benefits, including allowing others to see the process in its entirety, opening the floor to collaboration, and bringing light to additional questions that can be researched further.

To some, it is hard to believe that a non-profit organization has achieved this level of prominence with the public and the media alike. As to how it does this, McFarlane says, “Komen is transparent with a compelling story that resonates with every woman. Since it is focused on one cancer, it can focus all our attention on hitting it from all angles. Most importantly, we provide access through more than one mean: education, awareness, grant-funding, and advocacy.” Richardson-Heron adds, “The money is where the mouth is, and it shows in the gains made through research, in legislation, and the increase number of survivors.” Meanwhile, the BCRF is praised for its grants geared toward scientific progress. In the fiscal year 2010-2011, “the Foundation is proud to be funding 172 of the most brilliant scientists who are developing innovative ideas at every level to build upon their individual discoveries and to find new synergies to advance breast cancer research” [5]. Hand-in-hand contributing to scientific progress and encouraging survivors and their families, Komen and BCRF prove that finding a cure is a combined effort. With access to new information, more contributors can collaborate and the hope for a cure seems more possible.

However, not all breast cancer experts agree with these organizations. In her article titled “Why You Might Not Need a Mammo” in the October 2010 issue of Health Magazine, Ginny Graves profiled Dr. Laura Esserman, a nationally known breast surgeon at the University of California, San Francisco (UCSF) Medical Center. Esserman had published an article in the Journal of the American Medicine Association in October 2009 regarding routine mammograms. “Routine mammograms,” Graves wrote in the Esserman profile, “find too many unusual-looking clusters of cells that turn out to be benign, leading to unnecessary biopsies. . . .What’s more, all of our intensive screening efforts result in many women being treated for tumors that might never have become life-threatening” [4]. Esserman believes that “if we take a watch-and-wait approach to more patients who have low-risk findings on their mammograms, we can probably do a third fewer biopsies. . . .The goal is to be able to personalize choices, explain the options, and let women decide how much intervention they’re comfortable with” [4].

Awaiting science’s ability to provide concrete evidence on the success of new methods, women and their families continue to rely on the tools non-profits are able to provide in the interim. Terri DeMartis was 38 when she was diagnosed with breast cancer. For 15 years, she battled a cancer that spread throughout her body, and the DeMartis family turned to non-profits to learn more about her condition, treatment, and progress. Her daughter Laura, who was 7 when her mother was diagnosed, said, “We immediately got involved with Gilda’s Club (now affiliated with Cancer Support Community and the Wellness Community), the American Cancer Society, Susan G. Komen for the Cure, SHARE. My mother preferred American Cancer Society because of their fun activities such as Look Good . . . Feel Better and various support groups she attended. Gilda’s Club (located in Hackensack, N.J.) was another non-profit that she looked to in the early years of her diagnosis. There, she went to support groups and received support for her and our family.”

Laura and her family remained involved after Terri died on April 11, 2009. “After she passed, these same organizations helped me just because I was still able to stay focused on them and stay surrounded by those affected by cancer,” Laura said. “Non-profits help so much because they exist to help others by providing information and making the information as available as possible.”

The DeMartis family is a prime example of why non-profits are so important in the progress toward finding a cure: People are drawn to the emotional help that they offer. Actually seeing and meeting survivors and families who have suffered a loss paints a more accurate picture of the effect this disease has. “Non-profits brought and continue to bring clarity to me about the importance of life,” Laura said. “They provide perspective. Non-profits bring me clarity because they bring me back to reality if I begin to slip on seeing what is really and truly important in life.” Though there are no recorded numbers of how many people turn to a non-profit in a time of need, Komen sponsors more than 122 races throughout the United States with more than 1.3 million annual participants, clearly showing how many people believe in its mission. This emotional bond has built a trust that is often relied on when innovation is reported.

As non-profit organizations fund scientists who discover new information through their research, reports on that research by several different circuits can make progress seem far more confusing than intended. The search for clarity continues to send floods of women back to the non-profits they love and trust.