Patient Journey and Development of Metastatic Breast Cancer

Kelli Davis, METAvivor patient advocate and co-founder of the Northwest Arkansas Metsquerade, provides an insight into her journey as a patient with metastatic breast cancer and as a patient advocate.

Transcript:

Bruce Feinberg, DO: Hello, and welcome to this AJMC® Peer Exchange® titled “Value-Based Considerations of CDK4/6 Inhibitors in the Treatment of Metastatic Breast Cancer.” I’m Dr Bruce Feinberg, VP of clinical affairs and the chief medical officer of Cardinal Health Specialty Solutions in Atlanta, Georgia, and I’ll be moderating today’s panel discussion. Joining me for this virtual discussion are Kelli Davis, a METAvivor patient advocate and the cofounder of Northwest Arkansas Metsquerade; Dr William J. Gradishar of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago, Illinois; Dr Joyce A. O’Shaughnessy, of the Baylor-Sammons Cancer Center, Texas Oncology, in Dallas, Texas; and Dr Steven Peskin of Horizon Blue Cross Blue Shield of New Jersey.

All of you are well aware that the landscape of therapy for advanced breast cancer is rapidly changing with the expanding role of novel agents. Today we’re going to discuss the treatment outlook for metastatic hormone receptor—driven breast cancer and highlight the role of CDK4/6 inhibitors with clinical data as well as the implications for clinical practice. Our panel of experts will also address the impact on value-based care. It might be said that every stakeholder has a unique value perspective when it comes to value-based care. In fact, I’ve written on that, published in AJMC® about 2 years ago. You might say that each of those stakeholders—the provider, the patient, the pharmaceutical manufacturer, and the payer—needs to be represented if we’re going to really find a value-based care solution. It might also be said that, unfortunately, at the center of all care is the patient, whose voice has been the least heard when it comes to value-based care. So we thought we’d turn that paradigm on its head today, and we’re going to begin with the impact on value-based care and start with the patient perspective.

Kelli, I want to start with you, this is a rare opportunity in this format, because we have not only a patient advocate, and not only a patient who became a patient advocate, but a patient who is actively in care on treatment. Kelli, I’d love to begin by describing your treatment journey, how you came into the role of patient advocacy, and what you are trying to champion in that role in regard to bringing education to patients and caregivers, and if are you trying to develop the perspective of the patients so it’s better understood by other stakeholders.

Kelli Davis: Absolutely. Thank you for a great introduction, Dr Feinberg. I appreciate you having me here. Again, my name is Kelli, and I am a metastatic breast cancer patient and have been for a little over 5½ years. It’s been kind of an interesting journey over the past 12 years. I’ve had breast cancer for 12 years and metastatic breast cancer for 5½, and I’m 38 years old. So this has been the norm for most of my adult life. When I was initially diagnosed metastatic, I fell into a really deep depression. I didn’t know how to cope with not being the pink ribbon survivor any longer. I was celebrated, and now I was told I was going to die, and I really couldn’t develop the coping mechanisms to figure out how to live with cancer. I actually came back from that with an idea after I got the help and support I needed. A big part of my platform is also mental health and palliative care, to really ensure that we’re getting the care we need from a mental and emotional perspective, because this is a life-changing diagnosis. Within that location, when I was institutionalized for a while, I had an idea to create something that raised money for research. And not just any kind of research, but metastatic breast cancer treatment research, which is why METAvivor is different. Every penny we raise goes to metastatic breast cancer treatment and research. That’s something we’re really proud of. To date, we’ve raised around $1.5 million in Northwest Arkansas, which is something we’re super proud of. Every penny of that has gone to research. We run 7 other Metsquerades, which are like galas for metastatic breast cancer, that are public around the country. They’ve raised another $1.5 million as well, so that’s something. Patients were tired of dying quietly. We’re taking up this grassroots effort and really trying to make a difference and make our voices heard, and that’s happened in a lot of different ways. We are speaking at ASCO [the American Society of Clinical Oncology Annual Meeting]—I spoke at ASCO last year. We are speaking at San Antonio Breast Cancer Symposium. We partner with researchers, we partner with our clinicians, we partner with our oncologists, and we really want to be part of that conversation at the table. If we’re not at the table, we’re on a menu, right? We’re seeing a new breed of metastatic breast cancer patients who are also advocates, and we want to make that distinction because a lot of times a patient advocate is deemed as somebody who is supporting a patient but is not also a patient. We are patients first and advocates second. We really appreciate being able to have that conversation and be part of these really in-depth conversations, because we’re the ones who really stand to gain and lose the most out of these changes.

It’s been really exciting to see—over the past 6 years—things starting to change and improve. Metastatic is part of the nomenclature in things we hear on television and the honest picture portrayed of what metastatic breast cancer is. It’s not a patient-shaming modality or something that’s not talked about at all. It is scary. Having a median life span of 36 months is terrifying. But you know what? It doesn’t have to be that way. Hopefully with what we’re doing, with METAvivor and other institutions, it won’t always be that way.