Dispatch from ABC4: ‘Bridging the Gap’ in MBC Treatment
In November, Janine Guglielmino, MA, our senior director, programs and partnerships, represented LBBC at ABC4, an international consensus conference in Lisbon, Portugal. This event, held every 2 years, brings together healthcare professionals and breast cancer advocates from around the world. The goal: to agree on evidence-based treatment standards for people with metastatic (stage IV) and locally advanced breast cancer.
This is the second in a series of three posts Janine wrote about the conference. (Read the first post here and the third post here.) This week, she and other LBBC staff members are in Texas for the San Antonio Breast Cancer Symposium, along with many other patient advocates and thousands of cancer doctors and researchers. Read LBBC's reports from the conference.
The organizers of ABC4 chose “Bridging the Gap” as their theme, a reflection of their dual goals for the event. It’s both a forum for healthcare professionals to reach consensus on international treatment standards for metastatic breast cancer (MBC), and a place to ensure that people coping with the disease have influence in that provider-driven conversation.
Advocates had a voice from the start. Led by Fatima Cardoso, MD, a medical oncologist, a committee of 11 patient advocates designed sessions for ABC4 attendees. We learned about patient involvement in research and registries and discussed the impact of MBC on sexuality, fertility, career, finances and emotional well-being. Six advocates sat on the consensus panel itself. I and most of my colleagues attended the conference in Lisbon, Portugal, thanks to travel scholarships.
The organizers threaded the stories of real people throughout the program. During the opening session Bella Kaufman, MD, delivered a powerful talk on her experiences as a cancer doctor living with MBC. Dr. Kaufman, a medical oncologist and researcher in Israel, had already dedicated her career to studying breast cancer metastasis when she was diagnosed with stage IV disease in 2013.
“I kept thinking, ‘This can’t be me. I can’t be a metastatic breast cancer patient,’” she said. “Who would treat me? I am the expert.” Yet despite her expertise, Dr. Kaufman covers her eyes during scans so she can’t see the expressions on her doctors’ faces. From the podium, she advised her fellow physicians to “be gentle with your patients. They are hanging on your every word, every gesture for its meaning. Remember that our patients’ lives extend beyond the disease.”
Another highlight was a talk from Musa Mayer, MS, MFA, who received the ABC4 Award in recognition of her work and dedication to advocacy for people with metastatic breast cancer. Since her diagnosis with early-stage disease 28 years ago, Musa has focused her significant intellect and deep passion as a patient advocate on providing clear, evidence-based information to people with MBC. She’s a highly accomplished author who has penned several books, including a memoir. Over the years, I’ve had the pleasure of working with Musa many times as a member of LBBC’s advisory board.
“Advocacy is about finding our voices, telling our stories,” Musa began, as she discussed the history of her advocacy, rooted in her diagnosis and desire to connect with others who understood her experience. She traced the origins of today’s flourishing metastatic breast cancer movement from the work of female health advocates in the 1970s, to the spread of the HIV/AIDS movement of the 1980s, to the growth of nonprofit organizations and pink ribbon campaigns in the 1990s.
Still, little attention had been paid to people with MBC until 2005 when Musa partnered with Living Beyond Breast Cancer on Silent Voices, our seminal report on the information, support and practical needs of more than 600 women with stage IV breast cancer. “At the time, it was the first time anyone had looked at the needs of people with metastatic breast cancer,” Musa said. “But everything has cascaded from that.” Today, she said, groups like MET UP, METAvivor and the Metastatic Breast Cancer Network are carrying the torch forward by focusing exclusively on MBC.
When Musa remarked in closing that ABC4 would be her last conference, the audience let out an audible sigh. “I am hopeful,” she said, “that our shared humanity will allow us to move on.”
Carrying Musa’s words with me, I walked to another room to present a poster on behalf of the LBBC team. “Storytelling as an Education, Advocacy and Support Tool for People Living with Metastatic Breast Cancer” explores the impact of social media activities on volunteers in our Hear My Voice Outreach Volunteer Program. My heart was heavy. Earlier that morning, my fellow advocates and I learned that Beth Caldwell, a graduate of our inaugural class, had died of metastatic breast cancer. The poster featured a photo of Beth. We used it to illustrate the powerful messages our volunteers create to educate the public about the realities of MBC.
We had dedicated the poster to the 23 volunteers we had lost since starting the program. Now I wrote Beth’s name on a sticky note, adding her to the list.
Beth had worked tirelessly, up until the last moments of her life, to bridge the gap between providers and those with MBC, between “early-stagers” and “metsters,” between the realities of clinical research and the funds needed to support treatment breakthroughs. And, like too many times before, I made the silent promise to ensure her voice would continue to be heard.