Many communities face persistent and tenacious issues surrounding the treatment of patients with breast cancer, according to the founder of the Missing Pink Breast Cancer Alliance.
Patients with breast cancer from underserved communities face persistent barriers to optimal care despite long-standing and widespread research on these issues, according to patient advocate Jasmine Dionne Souers. She stressed that more organizations devoted to patient advocacy should focus on issues facing these communities to better address these challenges.
Souers, founder and CEO of the Missing Pink Breast Cancer Alliance and co-founder of For the Breast of Us, spoke on these and other issues in an interview with CancerNetwork® as part of Breast Cancer Awareness Month.
“We need to examine everything we do through a health equity lens to ensure patients with the greatest needs have access to the greatest resources,” Souers said.
Souers: The term ‘patient advocate’ has so many different meanings in different spaces. I’m a young breast cancer survivor; I was diagnosed at 26 years old. I’ve navigated many [unique] challenges as a young Black patient with breast cancer. I shifted into patient advocacy to help ease the burden for the women and men diagnosed after me.
One of the most exciting breakthroughs was the DESTINY-Breast04 clinical trial [NCT03734029] showing 6 months longer overall survival with trastuzumab deruxtecan [Enhertu] in patients with metastatic or advanced breast cancers.1 That was a big deal for this community of patients.
This is an interesting question. There are some general barriers facing the community like affordability and accessibility. When you dig down into [issues facing] minority communities, you find [further] barriers like a history of medical mistrust [which is sometimes confounded] by a lack of understanding of medical practices. Unfortunately, many of these issues have been well-documented for decades, both in research and experientially within the community, but they persist [regardless].
In terms of treatments, when [clinicians] know what does and doesn’t work the next step is very clear. I’m always interested in studies examining patient experiences and testing how procedures and policies could change to help patients better navigate [their treatments]. Bernadette Lim, MD, MS, said it very well: ‘If your research/work on ‘health equity’ only exists in an academic language, for academic audiences, with no real impact on the material conditions and realities of the people, then who is your work really for? Real-life change is not just a theory. Justice requires embodiment.’2
One of the things I’m most looking forward to is the upcoming Black Wo(Men) Speak Symposium of the Metastatic Breast Cancer Alliance [MBCA] scheduled for the day before the San Antonio Breast Cancer Symposium [SABCS]. The MBCA has brought together 3 or 4 organizations responsible for research regarding the experiences of Black patients and their relationship to clinical trials. I’m excited to see how the broader community absorbs this research and how it could be applied to create meaningful change in this space.
Often when we find issues [in the treatment of certain patient subgroups] and therefore opportunities for improvement, they just become talking points. As a community, we don’t take enough time to sit down and build [change] intentionality into experiential research. How many studies must document the same challenges [before improvements are made]? After all, patients often face the same challenges in different domains [of health care]. Some of the same issues facing patients in clinical trials also prevent them from [taking advantage of] early detection or genetic testing in real-world settings. We have to sit down together as a community and address these issues.
In terms of patient care management, I’m really looking forward to [more organizations] like ours, the Missing Pink Breast Cancer Alliance, bringing together different groups that support patients and collaborating with them to make meaningful, lasting change. We should never undervalue the importance of diversity of perspectives when trying to solve the problems our communities face, especially minority communities. These problems are too big for one person or one organization to solve. They require collaboration.
Lastly, I’m looking forward to more [prolonged] diversity initiatives that aren’t just one-off commitments from patient support services and nonprofits. I’m looking forward to more holistic program designs. The same goes for health care organizations: doctor’s offices [should commit to prolonged diversity initiatives rather than] one-off programs catering to a single community.
If anyone wants to collaborate with others to make meaningful change and solve problems, especially regarding minority communities, I would invite them to become a member of the Missing Pink Breast Cancer Alliance and join us in the important work ahead.