Inflammatory Breast Cancer Advocacy
Although breast cancer is one of the most widely covered cancers in the media and is represented by innumerable advocacy groups, inflammatory breast cancer (IBC) hasn’t historically received adequate attention, leaving those facing the disease with insufficient resources and avenues of support as they battle a breast cancer with characteristics and treatment protocols that tend to differ significantly from those of other disease types.
Considered a rare form of the disease, IBC is highly aggressive and often misdiagnosed, and advocates are pointing to the disease as a formidable concern as they work to raise awareness, encourage research, and serve those currently affected. Such is the goal of two pioneering organizations—the Inflammatory Breast Cancer Research Foundation and IBC Support—both of which are actively changing the face of IBC advocacy and support resources from a grassroots level.
The Inflammatory Breast Cancer Research Foundation
Officially established as the Inflammatory Breast Cancer Research Foundation (IBCRF) in 1999, the volunteer-powered, 501(c)(3) nonprofit organization was formed to advance research into the causes of IBC and effective treatments and to increase awareness of symptoms for earlier and more-accurate detection. Maintaining both missions is essential, explains IBCRF executive director and 13-year IBC survivor Ginny Mason: “Research and education must be combined. The two need to happen together for progress to be made,” she says of the interdependence between growing awareness and research.
The structure of the IBCRF indeed speaks to the fact that the scope of its influence on research is only as strong as the IBC community, which supports these efforts with volunteer work, monetary donations, and a willingness to make contributions spanning from information about personal IBC experiences to tissue samples for research purposes. Fortunately, the strength of this community is proving to be formidable.
The IBCRF’s efforts to raise awareness about IBC are guided by the motto You don’t have to have a lump to have breast cancer; and its educational materials—including brochures, bookmarks, and T-shirts—all spread the word that symptoms other than a lump can signal breast cancer. Possible signs of IBC that advocates urge people to look out for include swelling and itching of the breasts and nipple retraction. The foundation also spreads its message of awareness through various avenues on the Internet and offers information through a toll-free number: (877) STOP-IBC. And to stay in step with current research, the IBCRF maintains a presence at conferences where IBC is—or should be—a noteworthy topic.
Integral to the IBCRF’s goal to increase IBC research are efforts to directly encourage researchers to include IBC biospecimen samples and patients in their studies. The foundation has taken a giant step to facilitate this research with the creation of the IBCRF BioBank, which Ginny says is the most significant accomplishment to date and one that, in its proactive nature, propels research advocacy to a new level. Drawing on existing relationships within the advocacy community to generate contributions (an outstanding example of the interdependence between research and awareness), the BioBank is a secure, privacy-protected collection of biological specimens from patients diagnosed with IBC. Also included are clinical data and information from a comprehensive questionnaire as well as specimens from individuals not diagnosed with IBC, which may serve as controls in research studies. All specimens and accompanying information are protected under rigorous industry standards of confidentiality and management. Visit www.ibcresearch.org/biobank for more information about this exciting initiative.
Of the way the IBCRF BioBank has accelerated research advocacy, Ginny explains, “Prior to its creation, we were knocking on doors, looking for researchers who might be interested.” Now, in what she describes as “an incredible turn of events,” researchers, aware of the depth of information and access to biological specimens, are actually seeking out the IBCRF, which is now well respected within the research community as a voice for the disease.
The campaign to promote and expand the BioBank, and with it IBC research and awareness, remains a major focus of the foundation. As enrollment grows, a new computerized database will continue to enhance the BioBank’s ability to effectively make accessible its ever-increasing contents. It’s also important to note that this technological upgrade was funded by an award from the National Breast Cancer Coalition Fund—the 2006 Best Practices in Breast Cancer Advocacy—in recognition of IBC’s innovative and high-impact strategies, such as the BioBank.
With its research advocacy and its education and awareness campaign—and with the success of each resting on the support and the participation of those affected by IBC—the IBCRF is bringing IBC forward from relative obscurity in the breast cancer community. As the disease gains attention in research settings, medical offices, and on a personal level, those diagnosed, along with their loved ones, are not only gaining a community of support but are also taking an active role in research, thereby influencing the focus and the nature of these critical studies.
The IBCRF is a 501(c)(3) nonprofit organization incorporated in Alaska, without a walk-in office. Because the IBCRF president, secretary, and treasurer reside in Washington State, the organization maintains a Washington mailing address (use of the Washington address was filed for with the state of Alaska). The organization also has a Medical Advisory Board that provides guidance and consultation for the medical information on its Web site as well its BioBank project.
As an online community, IBC Support maintains a mailing list, connects those affected by IBC with others who share their experiences, and provides its users with resources and other important IBC information. Though IBC Support and the IBCRF are separate organizations, they are connected by members of the IBC community who are involved in both; they are further linked by the fact that the IBCRF’s founders met online through IBC Support. And that’s precisely IBC Support’s mission: to connect anyone seeking support and commonality as they face IBC as well as those sharing interests and concerns regarding treatment and advocacy for IBC research and education.
Pete Bevin, who founded IBC Support with his wife, Menya, explains that because IBC differs from other breast cancers in treatment protocol and prognosis, IBC patients can have trouble identifying with other breast cancer patients. “Patients often feel isolated because what everyone else in their support group is saying doesn’t apply to them.” He and Menya felt this isolation so acutely that they were inspired to form the online community soon after Menya’s initial diagnosis in December 1996. As Pete explains, IBC Support is committed to being “the best, most inclusive peer support group for people with IBC and their families.” He also says that IBC is the largest such group worldwide, with approximately 500 members.
The foundation of this Web site is its message board, where visitors share everything from encouragement and fears to clinical trial announcements and links to IBC coverage in the media. Newly diagnosed patients write in with concerns about treatment, side effects, insurance issues, and often to voice their fears; the latter are invariably met with postings that convey comfort, hope, and friendship. Survivors share wisdom gained through their own experiences in the form of supportive care tips and encouragement; they also explain the effects of certain treatments, often providing experience-based solutions in complex situations. “It’s almost guaranteed that someone, somewhere will have seen this already and know what to do,” Pete says of the way community members offer one another advice.
IBC survivor and IBC Support volunteer Phyllis Johnson acknowledges that she often turned to the IBC Support mailing list when she had to make critical treatment decisions, finding that “the experiences of the other people on the list helped me.” The age range begins in the twenties and spans at least five decades, and members hail from across the United States as well as several regions in Canada, creating diversity within the IBC community that reminds that although this disease is considered rare, anyone may be affected.
“The most important thing I learned from the list was how to be an advocate for myself and an active partner with my doctors,” says Phyllis, whose statement underscores an important function of IBC Support, which is to promote each individual’s active participation in her healthcare while also being a catalyst for IBC advocacy on a larger scale.
Pete explains that the efforts of this dedicated group are having real impact: “Their greatest achievement to date has been inspiring and enabling the opening of a clinic specifically for IBC at M. D. Anderson [Cancer Center] in Texas.”
The postings, which are archived from 2000 to the present, make it evident that IBC Support is a true community, one where members thoughtfully address one another’s concerns and share valuable advice, educational information, and candid support. The tone is overwhelmingly optimistic, and personal well wishes are so filled with warmth and sincerity that it’s easy to forget that many in this group have never met face-to-face. They are, however, palpably united by a fervent spirit, frequently referring to themselves as “warriors” and communicating a collective resolve to confront IBC head-on.
Though members of the IBC Support community eagerly embrace this Web site for its positive contributions to their lives, the reality of the aggressive nature of IBC can’t be overlooked. In fact, the site’s co-founder, Menya Bevin, died in 2001 after IBC had spread to her brain. Of his continuing commitment to IBC Support in the face of personal loss, Pete says, “I keep the support group running in her honor, to support the amazing women who are getting better information out there and helping to save the lives of people they have never even met.”