Putting Patients First: BCA’s Information and Referral Service

by Mary DeLucco

The requests for help flow into the Breast Cancer Action office at a steady rate. They come as e-mails, letters, and phone calls to BCA’s Information & Referral service, and they come looking for the same things: information, referrals to resources, support. Almost all come from women who have been diagnosed with breast cancer, or from the people who love them.

“We get calls from people from all walks of life, all socioeconomic and educational backgrounds,” says BCA’s Zoë Christopher, who handles the majority of the inquiries. “Cancer is a great leveler.” In a typical day she not only answers questions and provides information but also lends an empathetic ear to women who pour their hearts out and share their often dire circumstances.

“When I hear the stories, they compel me to find answers,” she says. “Sometimes it’s painful, but it’s very real. And if there’s any way to alleviate some of the pain and frustration, or to empower people to make good choices for themselves, then I’m happy to help. In a single day, my emotions can run the gamut from heartbreak and frustration to a sense of triumph and purpose.”

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“If there’s a way to alleviate some of the pain and frustration, or to empower people to make good choices for themselves, then I’m happy to help.”

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The Information & Referral service has been part of BCA’s outreach since its beginning in 1990. The women who founded BCA began by posting notices in hospitals, clinics, and other public areas, inviting women with breast cancer to meetings. The discussions and presentations at those meetings were reported in a newsletter, and it was just a matter of time before people who had read it or heard about it started calling with questions. As BCA grew and began hiring staff, the original emphasis on providing information and support continued. Today, the calls, letters, and e-mails come from all over the world.

Christopher, who also serves as BCA’s office manager, is uniquely suited to handling the numerous requests for help. She came to BCA in February 2007 after spending more than 20 years working in crisis intervention. While earning a master’s degree in psychology, she co-directed a national referral program focused on psychiatric crisis and directed a retreat facility that provided alternatives in psychotherapeutic support. She considers handling the Information & Referral service a logical step in a lifetime of striving to empower others.

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“Between our staff, our board of directors, our Scientific Advisory Board, and our National Advisory Council, we provide accurate and useful information or refer the caller to someone who can help.”

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“We know that knowledge is power, but there is so much information out there, much of it confusing or conflicting, and so we try to cut through that,” she says. “Between our staff , our board of directors, our Scientific Advisory Board, and our National Advisory Council, we provide accurate and useful information or refer the caller to someone who can help.”

As an example, Christopher recalled a woman who contacted her with concerns about the effects radiation applied to her left breast would have on her heart. Christopher contacted radiation oncologist Mark Rounsaville, who is on BCA’s Scientific Advisory Board. He responded within a few hours with information on the current best practices and advice about the questions the caller should ask her oncologist.

Christopher says she wishes those engaged in the debate on national health care could hear what she hears. A number of the calls concern insurance coverage. Many are from women who have insurance but find their coverage is less than expected or excludes testing or treatment that’s been recommended. Many have lost or could never afford coverage in the first place.

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“…with all the involuntary exposure to known carcinogens in our environment, it’s shameful that anyone is forced to go without quality medical attention.”

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“That’s my greatest frustration—when I talk to women who can’t get the care they need because they don’t have insurance, or their insurance companies simply won’t cover the costs of their treatment,” she says. “Particularly, with all of the involuntary exposure to known carcinogens in our environment, it’s shameful that anyone is forced to go without quality medical attention.”

Christopher related the story of a woman with stage 4 breast cancer who wrote to BCA recently. In spite of her diagnosis, the woman moved from her longtime home in New Jersey to care for her mother in North Carolina, who was suffering from Alzheimer’s. The woman lost her insurance because of the move and went on disability. As a result, she didn’t qualify for additional assistance and could no longer afford the treatment she needed for her breast cancer. And she continued to care for her mother. Christopher explored every avenue, every possibility she and the BCA staff could think of to find help for her, only to hit a dead end. Still not ready to give up, she urged the woman to contact her congressional representatives about her problem and to testify at congressional hearings on health care in Washington, D.C. “That was a difficult situation,” Christopher acknowledges. “Sometimes I have an incorrigibly idealistic attitude that there’s always an answer out there somewhere.”

Not surprisingly, any time breast cancer is in the news, which is often, the number of calls and e-mails spikes. When a study was presented at the American Society of Clinical Oncology’s annual meeting last May regarding the effect certain antidepressants might have on tamoxifen’s ability to reduce the risk of a recurrence of breast cancer, calls and e-mails poured in. And Christopher was there, doing her best to provide answers.

“As we always do, we urged the callers to do research. We suggested web sites, publications, and other resources that might be helpful, and we stressed the need for them to talk openly with their doctors,” she said. “And if they weren’t comfortable asking questions and challenging assumptions, we suggested they find an oncologist they were comfortable with. We didn’t give medical advice, but we gave them the information they needed to make informed choices about their treatment.”

To get in touch with Zoe, email her at info@bcaction.org or call toll-free: 877-2STOPBC.

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