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New, Metastatic Breast Cancer Alliance Sets a Cooperative Tone

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This October, there's some encouraging news on the breast cancer front. Yes, there are new drugs in the pipeline and ongoing trials -- the same old, real progress, slow as usual. Until last week, that is, when there came a hint of meaningful change in the breast cancer community: A coalition of breast cancer charities announced the Metastatic Breast Cancer Alliance. Emphasize alliance; the new group encompasses a spectrum of "pink" and gray agencies, young and old, big and small. The shared goal is to promote the research and support needed to help the lives of people living with metastatic breast cancer.

This year, over 230,000 people will receive a diagnosis of invasive breast cancer in the United States, according to the American Cancer Society. Approximately 40,000 women and 400 men will die from the disease. Worldwide, some 458,000 individuals die from breast cancer each year, according to the World Health Organization. Almost all deaths from breast cancer occur in people who have advanced or metastatic (Stage 4) disease. The disease takes 110 lives each day in the United States and 1,255 people each day worldwide, on average. According to the Centers for Disease Control, cancer is the number one cause of death in women between the ages of 35 and 64 years. Only lung cancer accounts for more cancer deaths in U.S. women than breast cancer. It's a leading killer of middle-aged women in the United States.

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Shirley Mertz, President of the Metastatic Breast Cancer Network (MBCN), has been living with metastatic disease for 10 years. At 67 years, she goes for treatment every three weeks. She's been involved with planning the Alliance from its start, and is eager for her organization, MBCN, to work collaboratively with others. "Together, we can brainstorm and move forward," she said. "It's not about pink. The alliance is illustrated in bright gray and yellow. Look at the logo, with a carat pointing forward," she emphasizes. Representatives from different charities came to the table with different perspectives and priorities, she reflects. "There were arguments, but we worked through those. We're good now, and I think we're stronger for that discussion," she said. "Each of our organizations has different resources and strengths. I hope that, eventually, we'll bring together scientists from all different disciplines."

The 15 agencies involved in the Alliance, as of October 13, are: AdvancedBC.org, the Avon Foundation for Women, BreastCancer.org, the Breast Cancer Research Foundation, CancerCare, the Cancer Support Community, Living Beyond Breast Cancer, the Research Advocacy Network, Dr. Susan Love Research Foundation, SHARE, the Sisters Network, the Susan G. Komen Foundation, the Triple Negative Breast Cancer Foundation, MBCN and the Young Survival Coalition. The group plans, first, to carry out a landscape analysis -- a report to look at gaps in knowledge about metastatic disease, needs for research and support. The Alliance will author a "white paper" and, based on the findings, move ahead with particular projects.

Marc Hurlbert is an executive director of the Avon Foundation's Breast Cancer Crusade. That agency is supplying much of the alliance's coordination, in terms of arranging meetings and budget planning. The money, at this point, comes entirely from industry. Cellgene, Genentech and Pfizer have contributed. The total budget now is approximately $200,000, Hurlbert said. The individual participating charities have not, thus far, given funds to the Alliance, but are contributing leadership, ideas and manpower.

"Our first goal is to do a thorough landscape analysis," Hurlbert said. "We need to know what's going on in policy, patient care, and the research front for metastatic disease." He envisions, over time, a more creative approach to breast cancer advocacy and research, with "out-of-the box" thinking by advocates coming from varied perspectives.

Andrea Rader is the Managing Director for Communications at the Komen Foundation. She sees the Metastatic Breast Cancer Alliance as a continuation of her organization's prior work with scientists and other charities. "It just makes sense to us," she said. "It's what we've been doing for 32 years. "Since 2006, the Komen foundation has spent $91 million on research focused on metastatic disease" she stated. "Curing cancer is a very difficult undertaking. It takes a lot of people to end it," she said. "As the breast cancer movement goes into its 30s and 40s, we can work on our own missions and, at the same time, work together on those things that are important to all of us."

Musa Mayer, of AdvancedBC.org, has spent years advocating for the particular needs of women living with advanced breast cancer. "We hope to change policy, and change the direction of research," she said. She expects the landscape analysis will identify key gaps in knowledge. "One of my personal goals is to make metastatic breast cancer count," she said. "Those include some simple facts, like how many metastatic breast cancer patients are living with the disease in the United States and world today," she said. Another key question she'd like to see addressed -- and answered -- is how long women and men survive, by breast cancer sub-type. "What's really critical is seeing how we can extend and better the quality of lives of people living with metastatic disease."

Mayer acknowledges that some breast cancer advocates might question if the new group lacks substance. "The only thing that will tell whether this is a meaningful alliance, and if we can accomplish its ambitious goals, is time," she said. "I can well understand the skepticism that some may have, because the metastatic community has been neglected for so long. But some of us think it's really important to bring to the forefront not only awareness, but meaningful change in how agencies function," she said.

"We have high ambitions," Mayer said. The Alliance will enable better coordination of varied charities' efforts. "One of our aims is to be inclusive," she emphasized. "We are in early stages of development, but I think we're all very excited about it."