The National Alliance of Breast Cancer Organizations (NABCO) announced in January that, after 18 years of operation, the organization will officially close its doors on June 30. During its existence, NABCO was instrumental in shaping the way breast cancer is treated in the United States, educating patients and members of the medical profession, empowering women to learn more about the disease, and developing a model of patient advocacy.
"NABCO is perhaps the mother of the breast cancer advocacy movement in that the group was begun so long ago, and breast cancer is now a rather mature issue, particularly as a patient advocacy issue," said Joann Schellenbach, a member of NABCOs board of directors, who is a consultant in medical and scientific communications.
The leadership of NABCO reached its decision after nearly 2 years of deliberations, said its executive director Amy S. Langer. Langer, who is a breast cancer survivor who began her work with NABCO in 1987 as a volunteer, said that historically NABCO had always relied on raising program and operating funds from its activities and corporate supporters. After the Sept. 11, 2001, terrorist attacks, charitable funding "completely fell apart." She said that educational causerelated marketing partnerships, an area in which NABCO was a pioneer, were "the first casualty."
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Langer, who expects to continue her work in the breast cancer community, was the first lay member of the National Cancer Institute Board of Scientific Advisers and serves as the advocate/consumer representative on the Breast Cancer Intergroup of North America, a network of clinical trials groups that conduct research in breast cancer.
Information Exchange
NABCO was cofounded by Nancy Brinker, Ruth Spear (both breast cancer survivors), Diane Blum, and Rose Kushner, an early breast cancer activist who died of breast cancer in 1990. From the start, the founders envisioned an organization with a mission of advancing knowledge and exchanging information. NABCO launched the first national breast cancer organization Web site in 1995.
"The idea that an organization should exist on a national level and be a clearinghouse for all the information that people would need about breast cancer was very important (in 1986), as was NABCOs effort to professionalize the disease advocacy movement," said Barron H. Lerner, M.D., Ph.D. "Today there are thousands and thousands of Web sites with information about breast cancer, so an umbrella organization is less crucial." Lerner is associate professor of medicine at Columbia University Medical Center in New York and author of The Breast Cancer Wars.
As an indication of how much progress has been made in the area of breast cancer and cancer in general since NABCOs founding, in 1986 cancer was often referred to as The Big C, in part because many patients and their families feared that a diagnosis was an almost inevitable death sentence. At that time, the term "breast cancer survivor" had yet to become commonly used, screening mammography was used only to a limited extent, and, since mastectomy was the standard treatment, patients and the public equated a diagnosis with disfigurement.
"When NABCO was setting up shop, the vast majority of women, in this country at least, were still getting a mastectomy," said Julia H. Rowland, Ph.D., director of the NCI Office of Cancer Survivorship. "They were still not full partners in the decision-making process; there were relatively fewer treatment options and not a lot of support groups or programs available to them for recovery or the post-treatment process."
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One such resource is NABCOs annual resource directory of information for women with breast cancer, which was an outstanding guide, Rowland said. "I hope that a commitment to continue to provide such a resource will not be lost. The Internet is not a perfect solution as, critically, it leaves out those who most need this information: minority, rural, low-income, and elderly people."
In considering the future of NABCO, its leadership determined not only that the needs of the breast cancer community had changed but also that continued fund-raising would have to become a major activity.
"The decision to shut down was a positive decision; it wasnt a defeat," said Larry Norton, M.D., deputy physician-in-chief and director of breast cancer programs at Memorial Sloan-Kettering Cancer Center in New York, and president of NABCOs board of directors. "We saw the field had changed, we saw the needs had changed and that there were a lot of other organizations that were filling those needs. To keep the name of the organization going, we would have to change the organization and change our whole approach to fund-raising. We didnt think that was appropriate. We thought what was appropriate was to continue the battle against breast cancer, and most of us are going to stay involved, but in different ways."
End of an Era
One of NABCOs cofounders, Diane Blum, who is now executive director of Cancer Care, a nonprofit organization that provides professional counseling and support to cancer patients and their families, said that NABCOs closing marked the end of an era but that the "glaring need" that was apparent in the 1980s to "bring organizations together and to provide high-quality information . . . isnt as apparent anymore."
"The other reality, and I certainly see it in my role as director of Cancer Care, is that these are more difficult times in which to raise money," she added. "The more you can carve out a specific area to focus your programs on, the easier it can be to raise money."
The question lingers of whether other organizations will face the same fate as NABCO. "As far as I know, this is the first major national organization for breast cancer to close its doors," said Barbara Brenner, executive director of Breast Cancer Action. "Will we see others? We may. But whether NABCOs closing or that of other organizations will have an adverse impact on people with or at risk for breast cancer will depend largely on which organizations continue to survive. At the moment, NABCOs departure from the breast cancer scene is not likely to adversely affect people who need breast cancer information."
People seeking such information will be able to fill that need elsewhere, but the advocacy community sees its role as much greater than one of information services.
"We still dont know what causes breast cancer, so there is a lot for all of us to continue to do," said Susan Braun, president and chief executive officer of the Susan G. Komen Breast Cancer Foundation. Braun also pointed out that, although the breast cancer incidence rate is lower among African-American women, the mortality rate is higher. She said, "We feel honor bound to change that."
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