During the last week of January, a shockwave hit the cancer community with the news that the National Alliance of Breast Cancer Organizations (NABCO) was planning to cease operations permanently on June 30th.
A “Dear Friends of NABCO” letter announcing that, co-signed by Executive Director Amy S. Langer and Board of Directors President Larry Norton, MD, noted that the decision by the 18-year-old organization came after more than a year of intensive evaluation.
Almost everyone contacted for this column expressed surprise and sadness when asked about their initial reaction to the news, with all speaking highly of NABCO's numerous contributions to breast cancer education, outreach, and advocacy, and its role as one of the pioneers involved in helping spur the breast cancer movement in the 1980s.
Most acknowledged this was the first time they could remember an established advocacy organization making the decision to end its own existence, without morphing into another identity by changing its mission (such as the March of Dimes' switch from polio to babies' health), or attempting to perpetuate itself for the sake of self-survival.
Some also complimented NABCO for having the courage and wisdom to see the handwriting on the wall and making a conscious effort to go out with grace and dignity and on its own terms.
Amy Langer, who has been Executive Director since 1990 and first became involved in NABCO as a breast cancer survivor volunteer when the organization was only nine months old, brought not only leadership and vision but also her background and experience as a Harvard MBA and successful Wall Street executive.
Other advocates and oncology professionals discussing Ms. Langer never fail to comment on her intelligence and the important voice she has brought to cancer advocacy. Although neither she nor the others cared to speculate about her formal role in breast cancer advocacy following NABCO's demise, most believe she will still be involved in some way in the cancer community.
In an interview, Ms. Langer said that for the next several months, she and NABCO will focus on a comprehensive plan to transition the programs and services, including completing current projects and commitments, phasing out of existing services, and working with others to address continuing needs.
Information and updates about these changes will be posted on NABCO's Web site (www.nabco.org) as well as guidance and referrals to resources and programs provided by other breast cancer organizations.
Changing Economic Environment
Ms. Langer spoke about the changing economic environment that does not always offer mature organizations the funds needed to continue ongoing labor-intensive programs, such as NABCO's highly individualized, case-management approach to helping people make decisions.
She also commented about the now-crowded breast cancer community that offers many duplicative services—and little differentiation when competing for dwindling financial resources. “Five years ago we couldn't have made this decision. It wouldn't have been a good or ethical decision.”
“There weren't enough resources and places for people to go to make informed decisions, but now there are,” she said, noting how the Internet helped contribute to the information flow. “But it's not as convenient to go all around and look for information. It's been more comfortable looking for a single voice.”
“The decision to close was a team effort,” she continued, “a collective process involving our board and staff and the needs of patients. It took more than a year looking thoughtfully at alternatives, and what we kept coming back to was that, no matter what we did, it would cause NABCO to become a fund-raising organization rather than a program-driven organization.”
Larry Norton, MD: ‘Particularly Close Relationship with NABCO’
Dr. Norton, Deputy Physician in Chief for Breast Cancer Programs at Memorial Sloan-Kettering Cancer Center, has been NABCO Board Chair for longer than he can remember, he said. Although he has been involved in numerous organizations, he said his relationship with NABCO has been particularly close.
“For as long as I've been attending board meetings, I've always seen NABCO place patients first by looking at what patients need and what the organization could do to meet those needs. Survival of the organization was never our paramount goal. We made the decision to close because to remain a viable organization would require changes and a major fund-raising initiative.”
Ties with Other Breast Cancer Organizations
NABCO's ties to the breast cancer community have been wide and deep.
Susan Braun, President and CEO of the Susan G. Komen Breast Cancer Foundation, noted that it has been a difficult economic time for both nonprofit organizations and for-profit corporations, but said that Komen's event-based, fund-raising model with 75,000 active volunteers and 118 affiliate chapters hosting Races for the Cure has allowed the Komen Foundation to be both a fund-raising and fund-granting organization.
“NABCO helped start the breast cancer movement by bringing together advocates, institutions, and providers when no one else was talking about breast cancer,” she said.
“NABCO has always had such a strong and important voice in breast cancer and I find it difficult to lose such a clear voice. But it's really very important for the rest of us to maintain the sense of urgency in breast cancer and not to let others forget the mission is still very urgent and viable.”
Diane S. Blum, MSW, Executive Director of Cancer Care Inc., reminisced that NABCO was originally housed at Cancer Care when she, Nancy. Brinker (founder of the Komen Foundation), Rose Kushner—“the original breast cancer advocate”—and health writer Ruth Spear in 1986 founded what started as an alliance and later became a resource for providing quality information about breast cancer.
“Cancer Care had been the first organization involved in National Breast Cancer Awareness Week—now Month—and it made sense for us to help bring these other organizations together to form NABCO as a means of sharing resources and information.”
“Funding an organization is a relentless project that you keep working on and working on, and you have to make sure you're relevant to those who want to help you,” Ms. Blum explained, stressing the importance of finding common ground between advocacy organizations and funders, and the difficulty in raising unrestricted money for general programs and overhead such as paying rent and keeping the lights on.
Historically, NABCO and AstraZeneca go back to the late 1980s when the pharmaceutical company was still known as ICI Pharma. ICI had been NABCO's first corporate funding source and both NABCO and ICI were involved in National Breast Cancer Awareness Week/Month activities.
Steve Lampert, AstraZeneca's Public Affairs Executive Director, said, “I remember when I started in the late- '80s that it was much easier to hand over a check to an organization like NABCO…but it's not that easy internally anymore with the demands that commercial teams place on you.”
“It's becoming more and more of a challenge. More organizations have been relying on pharmaceutical industry funding, and there are fewer pharmaceutical dollars available. That equates to a trend inside companies now taking a much harder look at their investments and looking for real programs and opportunities that will ultimately have more of a benefit for the company as well.”
Mr. Lampert also said that competition among breast cancer organizations with similar initiatives has increased, and when AstraZeneca began funding NABCO during its ICI years, it had been a mid-sized oncology company that has since “morphed into a much bigger company, which although still very committed to oncology, is also invested in other therapeutic areas such as cardiovascular and respiratory diseases, mental health, and gastrointestinal-related disorders.”
Emphasis on Newer Events
NABCO's established programs do not have the same appeal to funders as new events or campaigns, which also involve publicity-driven rollouts and more “bang for the buck.”
But for organizations invested in providing quality programs and services with no-strings attached grants, merely staying afloat remains a major challenge, and one that doesn't necessarily have to take precedence over actually delivering those programs and services.
Also, when an organization is so heavily identified with a single individual, one wonders how much of the decision revolves around the organization's continuing viability without that signature leadership, regardless of how strong and capable the staff may be.
“There's been no script for closing an organization's doors when there's a lot of material available—such as NABCO's breast cancer resource list—that can still help people,” said Ms. Langer, adding that NABCO and its board are exploring ways to keep some of these intellectual properties alive after NABCO.
“When I called people to let them know about NABCO's announcement, one point really struck them—you can keep going, but it's not good business, and to continue to do so would cause us to lose flexibility, which, ultimately, would only makes things worse.”
“Some of them also told me that ‘you've made this easier for those of us who may need to follow you,’” Ms. Langer said about this potential legacy for providing a model to ending an organization's life with dignity.
Some thoughts about NABCO's closing from others in the breast cancer and advocacy communities:
▪ William C. Wood, MD, NABCO Medical Advisory Board Member and Professor and Chairman of the Department of Surgery at Emory School of Medicine: “The loss of NABCO is very great. It has been the premiere group in terms of communications at a very sophisticated level with patients, and has schooled and equipped many of the advocates who sit on many other boards and committees. NABCO does so many things so well, I fear we're only going to fully appreciate all it's done when we see all the holes in the fabric after NABCO has stopped doing all that it does.”
▪ Ellen Stovall, President and CEO of the National Coalition for Cancer Survivorship: “Amy Langer has been a real leader in the cancer community and one of the most intelligent and capable people I've worked with. NABCO has left an admirable legacy. I hope that when others also learn they've fulfilled their mission or have been out-competed, they will turn to NABCO's experience as a standard of how to treat staff and handle programs with dignity and grace. The way you say good-bye is often the thing people will remember the most.”
▪ Frances S. Visco, President of the National Breast Cancer Coalition: “NABCO was one of NBCC's seven founders and originally served as NBCC's fiscal agent. I think NABCO made a very good decision. It's a different world today—everyone wants to start their own breast cancer organizations, and it's very difficult. I have enormous respect for NABCO's making this decision. The role NABCO originally played is now being handled elsewhere. I'd venture to say there are very few organizations that will recognize when it's time not to continue beyond its natural life.”
▪ Mary Lou Smith, Co-Founder of the Research Advocacy Network and former President of Y-ME National Breast Cancer Organization: “When I was at Y-ME I had worked with NABCO on various policy issues. NABCO's staff was always very bright, caring, and experienced. They always did their homework and raised good questions and issues. We'll miss them at the table. However, NABCO's closing raises the larger issue of how to get foundations more involved in patient advocacy. If we value what advocates do, then we need to value maintaining their ongoing programs, not just funding campaigns and events.”© 2004 Lippincott Williams & Wilkins, Inc.
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