Although we returned from the ASCO (American Society of Clinical Oncology) Annual Meeting just over a week ago, Michelle and I are still recovering from this whirlwind four days of meetings, networking, learning and sharing The Samfund’s work with over 38,000 other attendees! It was an incredible – and busy and exhausting – few days but so many great things happened. Here are our highlights:
- Financial toxicity finally taking the stage at ASCO. It’s been a long time coming…
- …to that end, we got to me
et one of our heroes, Dr. Yousuf Zafar (of Duke University Medical Center). His name appears in just about everything cancer- and-finance-related, including our own paper. We were also able to hear him present, along with Dr. Veena Shankaran (University of Washington) and Dr. Dawn Hershman (Columbia University Medical Center), at a session titled “Financial Toxicity: Risks, Outcomes and Solutions.” It was incredibly empowering to hear academics illustrating what we’ve been trying to express for a decade: cancer isn’t free, and oftentimes it’s young adults who get the short end of the stick.
- Learning about some exciting patient co-pay assistance programs that are in the works.Turns out there’s a lot of money out there, patients just need to learn where to look for it. (Of course, we’ll keep you posted when we know more about these programs.)
- Being the patient voice on every occasion we could find. The theme of the conference was “Collective Wisdom: The Future of Patient-Centered Care and Research,” and while it is promising that this is a priority for the ASCO community going forward, it was disappointing to not hear more patient voices reflected in the agenda itself. So, we took it upon ourselves to share what we’ve learned from our community of thousands of young adult cancer survivors over the years to make sure that the patient voice was part of the conversations.
- Prime real estate in the Patient Advocacy Pavilion. I don’t know how we got so lucky with our spot, but being on the corner made us the first stop for many clinicians, survivors, and other organizations as they entered the space. Plenty of opportunities to share what we do!
- Connecting and reconnecting with partner organizations, such as Family Reach, our next-door “booth neighbor” the Ovarian Cancer Research Fund Alliance, IHadCancer, Brian from w2o group (who wrote this Huffington Post piece about millennials and cancer), and of course, our Toolkit partners at Triage Cancer. It’s rare to find so many great cancer community partners all in one room, and it was fantastic to be able to talk face-to-face with many of them and hear about their work. Bonus: we also got to see (and hug) the fabulous Tamika Felder Campbell (of Cervivor), Heidi Adams (the former CEO of Critical Mass), and Alicia Staley (self-proclaimed “power tweeter” and an amazing advocate in the online breast cancer community, among others).
- Finally meeting Surabhi Dangl-Garimella, Managing Editor at The American Journal of Managed Care. Surabhi has been our champion at AJMC, giving us a voice and allowing us to share our experience and the stories of our young adult survivors with an enormous audience. It was wonderful to finally put a face to the emails and phone calls!
- Hearing Vice President Joe Biden speak about the National Cancer Moonshot Initiative was an inspiring surprise, to say the least. In addressing a room full of brilliant minds from around the world, he lay down the proverbial gauntlet: if we want the moonshot to achieve its goal of accelerating research and finally, finally eradicating cancer as we know it, then data needs to be shared and collaboration is imperative. In addition to being an extraordinary speaker, his message was incredibly powerful. It left us feeling both hopeful and confused; if all of the right people (researchers, oncologists, funders, and others) are quite literally in one room, why haven’t we reached this goal yet? And what can we do to reach it?
Finally, for me personally, one of the highlights was seeing my own medical team (bonus that I got to see them socially/professionally, rather than in their offices). Amidst all of the chaos of ASCO, it meant the world that they made it a priority to stop by our booth and say hello. Thanks, Dr. Meyers and Dr. Oeffinger!
A week later, our brains are still buzzing. More than anything, being at ASCO reinforced that The Samfund has a stake in these larger conversations about cancer, and that our work is both unique and valuable. We are as energized as ever to amplify our message and continue to remind the world that while cancer isn’t free, the community at large is finally starting to address it — and we’re hopeful that this means things might finally start to get better.