MARP 2023: Barbara and Hilda
Barbara Bigelow, Advocate and Hilda Chan, Researcher
The first order of business at this year’s MBCRC was the meeting of patient advocates and research partners. Barbara is a woman living with metastatic breast cancer for over eight years and a patient advocate. As Vice President of Metavivor, she has an established track record of working with researchers, analyzing their data, and ultimately making funding decisions on their project proposals. Hilda is an M.D./Ph.D. student at Baylor College of Medicine who desires to specialize in adult oncology. In contrast to Barbara’s experience, Hilda had never met a patient advocate before, and she was looking forward to this experience to observe and participate in discussions on how researchers and patient advocates can work together to invigorate scientific discoveries.
First impressions
Hilda: I was immediately struck by Barbara’s confidence. She openly shared details about her disease progression and her subsequent path to advocacy. She was clearly passionate about showing up for other patients and attentively learning about the research going on “under the hood” that would ultimately translate to treatments for patients like her.
Barbara: Hilda is an early-stage researcher studying to be both an oncologist and researcher. She came to this because of a close family history of cancer. She is undecided about whether she will continue to work in the breast cancer field, but this is her first time meeting a metastatic patient with TNMBC ---she is researching macrophages in TNBC, which she says is relatively easy to study!
Learning from one another
Hilda: One of the most exhilarating moments from our initial discussion happened after she told me that her disease mutated after her primary tumor metastasized. Specifically, her primary tumor was ER+, but her metastases were TNBC. I had previously heard about such occurrences within lab meetings because other researchers in my group had observed that we can see mouse breast tumors “switch” subsets by gaining or losing expression of a hormone receptor. We described how this can happen during the process of metastasis, whereby the tumors migrate to a new environment; the crosstalk of these tumor cells with the new environment may reawaken or stifle the expression of these markers. This has implications on how we treat the disease because these targets (or lack thereof) are druggable. Therefore, alteration of the subset necessarily means the drug regimens we give in response must change. In Barbara’s case, her change meant she was eligible for pembrolizumab, a new immunotherapy (at the time) that was being tested in clinical trials.
Barbara: I think Hilda was surprised to learn about the patient’s lived experience and the reality of that compared to working removed from patients. We talked about the importance of keeping the end point in mind when developing areas of study and how this can best translate from the lab to the clinic. She explained that some research (i.e., mitochondrial DNA) provides the building blocks to help researchers eventually get to the clinic—from the mouse to the person! I emphasized that the end point is the person not the published paper although that has to occur to share data.
Hilda: I felt so lucky to have been paired with a patient that reflected a rare phenomenon that I had learned about in a lab setting. But I had to pause and remind myself that the effect really should be thought of the other way around: she is not a coveted or rare example of what we see in our murine models; rather, we are fortunate human mouse models mirror the real intricacies of the human disease. This served as a humbling reminder that it is our duty as researchers to evaluate and model the patient’s disease rather than try to fit examples of patients into what we have found in mice or cell dishes.
The concept of initiating and strengthening the relationships between researchers and patient advocates was a constant theme throughout the conference. This was explicitly accomplished with talks about the topic and implicitly through the interactions of the partners. Barbara and Hilda sat together for the remainder of the conference during the speaking sessions. Many presenters thanked Metavivor for funding their projects, and each time, they looked at each other and shared an acknowledging glance or smile. Several times, Barbara leaned over to ask questions about the research on the screen: “Why are the mice imaged that way?” “How will that researcher’s work translate into something that’s given to a patient?” She asked insightful questions that aimed at the logistics of research work: “Do you ever see someone else’s work and think, ‘I want to be doing that instead!’?” “I was very curious if listening to other researchers sparked new ideas or ways of rethinking about the research. Hilda mentioned that there can be a lot of competition in research, which I hadn’t thought much about before, and that it is toxic if people steal data. Researchers should contribute and collaborate while respecting boundaries,” said Barbara. Hilda had the pleasure of meeting Tim, her husband, when they stopped by her poster, and she had the opportunity to explain the findings of her thesis project regarding unique macrophage functions in different murine tumor environments. “She made it seem so easy!” said Barbara.
Hilda and Barbara took opportunities to broaden their new connection to other parties. Hilda was able to enjoy lunch with other patient advocates and hear their stories. She introduced Barbara to Igor Bado, a previous instructor in her lab group that is now a fresh independent primary investigator at Mt. Sinai. It was he who had studied subset switching when he studied metastases in Xiang Zhang’s lab. “I hoped to facilitate a new connection between them so that his research would become stronger with her insights,” said Hilda. “I was very excited to meet Igor since he also studies mutations in TNMBC. I also had the opportunity to dine with Tae Hyung Kim from the University of New Mexico Health Sciences Center, where he is the head of his own lab, and to share our different experiences at the Conference and learn more about his work,” said Barbara.
Parting thoughts:
Hilda: In research, we often must use cell lines and animal models to simplify how we study cancer. While these are undeniably powerful tools, I think researchers sometimes lose sight of what is occurring in clinical settings. The value and benefit of patient advocacy is the constant reminder to us researchers about what matters to patients.
Barbara: As a patient advocate, I am always interested in learning about the current field of research and what might be coming in the pipeline. This becomes critically important every December when Metavivor evaluates what research will receive grants from our organization, both early career and translational. Of course, we have a Scientific Advisory Board headed by Danny Welch to guide us, but it really helps to understand the science! Hilda was exceptional in her willingness to share her time and ideas with me and to meet with other patient advocates. Would I do it again? Absolutely! These connections in a field that is constantly changing are critical to how we think about metastases and how a cure might one day be possible, one subtype at a time. Just the development of new treatments in the past 10-15 years has exploded and is helping to make this disease more chronic than terminal. Myself, as a recipient of immunotherapy in a clinical trial, combined with chemotherapy, has meant that I have lived without any cancer treatment for the past seven and a half years—now that is something to celebrate!!