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Oncology Times:
doi: 10.1097/01.COT.0000287229.90184.50
Advocacy Insight

Amy Langer on Life Post‐NABCO

Rosenthal, Eric T.

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Eric Rosenthal founded the NCI-designated Cancer Centers Public Affairs Network; works with Vital Options International TeleSupport Cancer Network and The Group Room cancer radio show as senior correspondent and news features editor; has organized conferences about the media and medical/cancer communications issues; and is a member of the NCI Director's Consumer Liaison Group, a 15-member chartered federal advisory committee that advises and makes recommendations on issues relevant to people with cancer, their families, and the cancer advocacy community.

When the story about the closing of the National Alliance of Breast Cancer Organizations (NABCO) appeared in the March 10th issue, a caption announced that then-Executive Director Amy Langer had just been named the William L. McGuire Memorial Lecturer at the Charles A. Coltman, Jr. San Antonio Breast Cancer Symposium.

At the meeting in December, I heard her presentation, which she titled “The Fruits and Frustrations of a Decade (and Four Years) of Breast Cancer Advocacy,” and spent some post-speech time with her catching up on elements of life after NABCO that hadn't been part of her lecture.

Her business card now reads: Patient Advocacy and Education, and Former Executive Director, National Alliance of Breast Cancer Organizations.

Since June she's been working on a future business plan that realistically addresses what can and cannot be done in advocacy under current political and economic conditions, and she continues to work on several National Cancer Institute and private projects.

Ms. Langer said she thought Charles Coltman, MD, Co-Director of the Symposium, President and CEO of the Cancer Therapy and Research Center (until his retirement at the end of 2004), Senior Adviser to the San Antonio Cancer Institute, Chairman of the Southwest Oncology Group, and honored namesake (since 2003) of the SABCS, was kidding when he called her in the beginning of 2004 with news about the McGuire lectureship.

“At first I thought Chuck was making a sympathy play, linked to NABCO's closing, but he assured me the selection had been unanimous and based on what my colleagues and I had accomplished in breast cancer advocacy,” she said.

“I was especially touched, since I had a fond connection to Bill McGuire, who helped launch the Symposium 27 years ago,” added Ms. Langer, who's been attending SABCS since 1989 and was the first layperson to present a plenary session in the early 1990s.

The formal presentation's bitter-sweet fruits-and-frustrations theme told the tale of breast cancer advocacy from 1991 to the present, including accomplishments and goals that still remain to be fulfilled.

Introduced by the Symposium's other Co-director, C. Kent Osborne, MD, Director of Baylor College of Medicine's Breast Cancer Center, Ms. Langer was cited for her leading role in raising public awareness and raising money for research, with her contributions to changing the course of breast cancer likened to those of “the scientists before her who have won this award.”

Figure. Amy Langer s...
Figure. Amy Langer s...
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She spoke of “The Crucible for Change: The ‘Big C’”—when women's fear about breast cancer turned into their getting mad, and then organizing to turn their anger into action.

Using the AIDS model—the first to encompass health and consumerism—breast cancer advocates launched an effective campaign that led to empowerment, more funding for research, and increased access. She noted that NCI funding for breast cancer research increased from $81 million in 1990 to $475 million in 2002, with additional funding from the Department of Defense.

But today, 14 years later, Ms. Langer said there was still much to be done, especially in training advocates, matching advocates to appropriate job descriptions, and fundraising—or “attending to mission while paying the rent.”

Other frustrations included the “lifestyle of a maturing cause” that made breast cancer yesterday's news and corresponded to “organized abandonment”; the reality that terrorism has replaced cancer as a national concern, and funding for cancer research and services is flat to down; and “other short-sighted or poorly understood policies that threaten the provision of quality cancer care.”

Ms. Langer also lamented that with “little interest and fewer resources, we're facing a fight to hold on to advocacy's progress over more than a decade.”

“We're competing with other wars, with promises broken, with lack of humane values and lack of scientific insight.” She concluded, “It's worth fighting for continued discovery, patient-centered quality care, prevention options and treatment choices, as well as survival despite poverty.”

Her lecture was noteworthy not just because she was the first lay McGuire lecturer, but also because listening to her advocacy speech qualified physicians for CME credit.

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Gifting of NABCO Assets

Ms. Langer told me that although NABCO officially closed on June 30, the organization's legacy will continue through gifting of its intellectual property and proprietary educational materials to 12 nonprofit cancer and health organizations, and disbursement of its remaining funds to eight different nonprofit breast cancer education and service organizations that support community outreach efforts benefiting medically underserved women (see box).

Although the grant amounts won't be known until NABCO's final audit, she did hint she “expects each grant will be substantial and significant and will allow each program to do far more than they might anticipate.”

She also reflected that people often wondered “what I was doing as a Harvard MBA running a nonprofit organization?”

“Cancer, cancer awareness, and education are products, and marketing them well can make a huge difference in how people experience the disease,” she said. “People can know about it beforehand, and where to find information, receive encouragement and be connected for support. This is a skill I happen to have that I hope to continue. If you do something as we did—closing NABCO as a rational business decision rather than changing its mission out of desperation—where there is no business-model template to fall back on telling you how to end a business well, then it can serve as a comfort for others and, God forbid, if other NABCOs have to close, then maybe our model will prove helpful.”

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Current Advocacy Projects

Ms. Langer is still active as a breast cancer and cancer advocate. She is currently serving as patient advocate on a number of national initiatives and committees, including the NCI-supported Breast Cancer Intergroup; the National Surgical Adjuvant Breast and Bowel Project's Treatment Data Monitoring Committee, and its STAR Breast Cancer Prevention Trial Steering Committee; and the NCI Clinical Trials Working Group, recently formed by the NCI Director.

She is also working on a number of projects, but admits “one of the quandaries I'm struggling with is whether or not to pursue a business plan that I've been writing since June.”

“The idea was to determine some important advocacy goals that would address some of the frustrations I talked about in my speech that we didn't do as well as we could have, including training future advocates and fostering a more collaborative relationship among advocacy and informational organizations.”

“I know I can add value,” she continued, “but my worry is we're facing an environment of decreasing resources and focus on cancer, and cancer now seems a less important war to win than it was in the past.”

She said she wasn't sure whether it was ethical and correct to go out and advocate for changes that are unlikely to be put in place because of fiscal constraints and limited will to make them Congressional priorities.

She is determined that her work be effective and is concerned that the current political climate will deter that effectiveness.

“I'd like to go to a consortium of foundations to get some support for at least a pilot-program effort to see what I could accomplish,” she said.

“It might be a foundation, it would definitely be a nonprofit; I would never turn my efforts into a commercial cause. I would be freer to move if I could rally some support from foundations that are traditionally interested in cancer and health and advocacy, and the importance of quality care.”

“And,” she added, “one of the things you can always do as an advocate, if you think the passion is out of cancer, is turn your efforts to other causes that are still light years behind.”

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Recipients of NABCO Educational Materials & Cash Grants

Amy Langer said that the 12 nonprofit cancer and health organizations receiving non-exclusive rights at no cost to NABCO's educational materials, including its well-known Breast Cancer Resource List, are:

* American Cancer Society.

* Breastcancer.org.

* Cancer Care Inc.

* CDC Foundation.

* Foundation for the National Institutes of Health.

* National Coalition for Cancer Survivorship.

* National Medical Association.

* Oncology Nursing Foundation.

* Sisters Network Inc.

* Susan G. Komen Breast Cancer Foundation.

* Y-ME National Breast Cancer Organization.

* Young Survival Coalition.

In addition to using these resources to support their respective missions, the recipients have also agreed to make the educational materials available to other appropriate organizations in the future to further benefit women with breast cancer.

The eight nonprofit breast cancer education and service programs selected to receive NABCO cash grants are:

* Northeast Medical Center, Concord, NC.

* Planned Parenthood of Cameron and Willacy counties, Harlington, TX.

* The Rose, Houston.

* Scripps Health, San Diego, CA.

* Southeast Mississippi Rural Health Initiative, Hattiesburg

* I.M. Sulzbacher Center for the Homeless, Jacksonville, FL.

* YWCA of Seattle.

* YWCA of White Plains and Central Westchester, NY.

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Conference Listings on OT Web Site

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© 2005 Lippincott Williams & Wilkins, Inc.

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