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Demanding Better

U-M's Breast Cancer Advisory & Advocacy Committee members work to improve care for future survivors

Every October, the world glows pink with Breast Cancer Awareness Month. That pink is as synonymous with breast cancer as orange is with Halloween wouldn't have been possible without the tireless advocacy of breast cancer survivors.

Each year, millions turn out to support efforts to put an end to breast cancer. We talked with Ruth Freedman and Maria Lyzen, co-chairs of the University of Michigan Comprehensive Cancer Centers Breast Cancer Advisory and Advocacy Committee, to find out what can be learned from the power of the pink ribbon movement.

Q: Let's start by talking about what kind of work the Breast Cancer and Advocacy Committee does.

Maria: The committee was formed to provide input to University of Michigan researchers as they design new studies. Our goal is to represent the patients' point of view: How can we make it easier for patients to participate in a clinical trial? Could a researcher consider reducing the number of scans required for a study so that a patient would only have to travel to the Cancer Center three times instead of four times?

Ruth: We see our role as working on projects to improve breast cancer care as a whole. For example, we learned from an excellent U-M occupational therapist that many insurance companies don't provide adequate coverage for treatment of lymphedema, a common side effect of breast cancer surgery that causes painful swelling in the arms. We worked with this occupational therapist to gather scientific evidence to show that certain interventions to treat this condition should be covered by insurance. We convinced the University of Michigan to include this coverage for its employees -- both going forward and retroactively. We hope that this will become a model for other insurance programs.

Q: Breast cancer survivors, in general, seem to be leading the charge in terms of advocacy. Why do you think this is?

Ruth: We're all assertive women and not afraid to speak up about issues that are important to us. We owe a lot to the founders of the National Breast Cancer Coalition (NBCC), a grassroots organization formed 20 years ago to raise awareness, provide scientific and advocacy education for the lay person, lobby for increased research funding and participate in scientific and regulatory decisions impacting breast cancer survivors.

Maria: Also, women are often the pillars of their families. Sometimes we've seen that women with breast cancer don't get the support they need from spouses or children, so women have bonded to form a support network to help other women.

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This article first appeared in the Fall, 2011 issue of Thrive.

Print Thrive Magazine; Fall, 2011