Patient Advocacy at ASCO 2022

This year, I returned to the American Society of Clinical Oncology meeting, where I heard about the latest advancements in cancer care, as well as met with fellow patients and advocates.

Earlier this summer, I headed off to the annual American Society of Clinical Oncology (ASCO) meeting in Chicago. This year’s meeting was the first since 2019 with the option of attending in-person, and I wasn’t alone in choosing that option since about 40,000 other people —oncologists, researchers, nonprofits, industry — were there with me.

That number included about 500 people like me: patients advocating on behalf of others living with a cancer diagnosis. The metastatic breast cancer patient advocate presence at ASCO is always on fire, since among this incredible group of people living with stage 4 cancer are those who’ve created their own successful organizations, host podcasts, serve as frequent speakers, oversee large Facebook groups and participate in scientific research.

I may be biased, but there’s no better way to learn how to improve the life of a cancer patient —whether through treatment choices, knowledge or support—than to see where patients themselves put their efforts.

2022 was my third time attending ASCO in person. I am far more comfortable now than I was as a newbie, when I sprinted from session to session for the full day, every day for five days. I’ve learned to guard my time and my energy. That first year, I gathered a lot of information about many things, but I hadn’t had much time (and zero remaining energy) to connect with other advocates.

I know now that these connections are one of the best aspects about in-person conferences since we learn what others are doing in terms of advocacy, find opportunities and friendships, and just remind ourselves that advocating for “better and more” in cancer care is only a piece of who we are.

This year, despite my ongoing cautious choices about COVID-19, I made a decision to choose connection first. That meant that I got together with the hosts of the Our MBC Life podcast (ourmbclife.org) for dinner instead of attending a science session I’d blocked out as a must-see on the schedule (I decided it’d be OK to watch a recording of it), and when the President’s Reception invitation to the Field Museum arrived, there wasn’t a chance I would miss the opportunity to visit with new and old friends.

All of that said, the science is why it’s worth the effort to attend a conference like ASCO. There is very little like being in the room to hear the lead researcher talk about a practice-changing clinical trial, such as happened this year with Enhertu for HER2-low metastatic breast cancer, to hear audience members question speakers about the research being presented or to reflect in-the-moment about how to best share the latest information about survival, treatment of side effects and other aspects of life that patients confront daily.

This year, I also had the honor of being involved in patient-led research presented in a poster and on-stage. Stephanie Walker, a patient advocate with the Metastatic Breast Cancer Alliance, presented the findings from the BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) survey.

READ MORE: Breast Cancer Made Me a Better Ally

It was thrilling to see our hard work discussed on the main stage alongside the work of other researchers. I don’t join research efforts for this kind of exposure, since it so rarely happens, but it reflects why patient involvement matters. Stephanie’s drive to improve the clinical trial experience and recruitment of Black women and men with metastatic breast cancer brought this topic to the attention of thousands of clinicians and researchers who had possibly never considered it before or, if they had, felt unsure about what to do to improve the picture.

Patients like Stephanie and many others, provide a sense of urgency, focus and clarity to what can be unwieldy scientific information. You don’t always get to see one of us on-stage, but increasingly patients are in the audience and influencing decisions.

If you are interested in attending a scientific conference or pursuing advocacy education, consider applying to attend ASCO in 2023 (directions will be on its website early next year), one of the cancer-specific conferences (for breast cancer, the largest in the US is the annual San Antonio Breast Cancer Symposium), or look nearby for conferences within your state. One good way of doing this is by connecting with a nonprofit that includes patient advocacy in its activities. Breast cancer has several of these, including Living Beyond Breast Cancer, Metavivor, and Young Survival Coalition.

If you are active on Twitter, following @GRASPtweets (led by two women living with stage 4 breast cancer) and @AdvocateCollab (a pan-cancer group of advocates), among others, will introduce you to active advocates and opportunities to get involved.


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