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The Elephant in the Pink Room

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By Krystin Gollihue

Metastatic breast cancer, more commonly known as stage 4 breast cancer, is often the “elephant in the pink room” says Sonya Negley, Executive Director of METAvivor, an organization dedicated to funding research on stage 4 metastatic breast cancer. It’s the only terminal form of breast cancer, spreading from the breast to vital organs in the body, and has little support from the research and nonprofit community. Funding for research typically goes to prevention programs or early stage breast cancer rather than stage 4 metastatic breast cancer, and there is an additional struggle in the cancer support community, with stage 4 cancer patients often being seen as the “impending sense of doom” among early stage breast cancer patients who might and sometimes do survive.

When METAvivor first began, its four founders didn’t want to ignore that impending sense of doom: they wanted to work with it and support those who had on average 2-3 years until death. How could they fund research and set aside money for building awareness about metastatic breast cancer and for developing a good quality of life for those living with the disease? After receiving little help from larger organizations unwilling to earmark funds for an illness that has no cure, the founders began their own organization, initially holding home tours, yard sales, and book signings to raise money. They were able to fund their first grant of $50,000 in 2009 and since have received over a million in grants.

METAvivor supports two grant programs, an early career/young investor grant and a basic translational research award. Both programs support the mission to fund stage 4 metastatic breast cancer research and help develop good quality of life for those living with the disease. Every penny of every donation goes directly to fund research, whereas sponsorships and outreach cover programs and administrative expenses.

Metastatic breast cancer is a unique disease that requires a unique model for research funding: patients often “have to change treatments frequently” because cancer cells can learn and adapt. It is critical for patients to have new treatment options in the pipeline, and therefore critical for researchers to always be innovating. As a result, METAvivor always bends toward what the patient would want as an outcome and involves patients in every aspect of research review for patient impact and organizational programming. Most of the organization’s board members are late-stage cancer patients and frequent visits to researchers who have been awarded grants allow the organization to relay the latest, best information directly to patients. Part of the organization’s charter includes a clause that any and every vote from the board must be a majority vote from patient directors. And METAvivor is currently collaborating on a PCORI Grant with the Metastasis Research Society to develop treatments, comparative effectiveness research, and a set of research priorities that includes input from the patient, researcher, and oncologist.

Transparency, says Negley, is one of the main reasons why METAvivor is so successful while not playing into the corporatism of national “pink” campaigns. “Pink awareness doesn’t go to metastatic breast cancer research or to breast cancer research as a whole. Patients feel that a lot of that money has been raised on the backs of dying people.” Instead, METAvivor centers the patients’ desires. What is important is not just giving money to research, but the partnerships with patients, oncologists and researchers that allow researchers to understand the disease from more than one perspective. This model brings everyone to a common understanding of the disease and helps each stakeholder  focus on the urgency and experiences of the terminal patients.

“The patient story is incredibly important. There’s a sense of urgency with a patient who’s advising you and might not live another year,” Negley notes. Until 2016, METAvivor was completely operated by a volunteer army mostly made up of patients. Now, with the organization’s growth, their scientific review officer and Negley herself help manage the organization. Still, patient leadership is at the core of METAvivor’s model, focusing on the ways that a funding entity can serve as an advocate and can involve the patient at every step of the process.


For more information contact METAvivor at sonya@metavivor.org or 818-860-1226.

Krystin Gollihue is a PhD Student in the Communication, Rhetoric & Digital Media program at NC State University.

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