Last week, I had the pleasure and privilege of speaking on behalf of young adult cancer patients at The Washington Post Chasing Cancer Summit. The event was aptly named, as we looked beyond cures to a more nuanced discussion of the longer-term management of this disease, treatment-related side effects and the ever-evolving group of stakeholders tasked with building upon clinical developments and harnessing them into sustainable quality-of-life improvements for patients.
I was thrilled to have the opportunity to make use of my restored vitality and enthusiasm for life-changing scientific discoveries (way to go, checkpoint inhibitors!) by sharing the very real struggles and considerations a patient like myself faces—as well as the resources needed to successfully navigate them. Having a platform to share my story after years of unrelenting challenges and frustration has become one of the most unexpectedly empowering gifts I have the privilege to take on as cancer survivor. I am incredibly grateful for the space to reflect on lessons learned and offer any guidance based on my personal experience.
At the summit, there were many conversations around diagnostics, innovations in treatment, healthcare costs, policy and more—all with major implications for patients. One common thread is that everyone seemed to have their own opinion on the patient experience and how to engage with people living with this disease. Of course, everyone is entitled to their own opinion based on their own experience but one could argue that the most effective way to communicate the real needs and desires of patients is to let the patients speak for themselves.
And that’s where I come in.
Washington Post’s “Chasing Cancer” panelists Ariella Chivil, Matthew Zachary, and Gregory Aune, M.D., Ph.D., who all survived a cancer diagnosis as young adults, with cancer survivor, advocate, and TV celebrity Fran Drescher.
Hearing from patients whose lives have been shaped by conquering these obstacles adds a much-needed degree of authenticity and humanity to an otherwise highly clinical, less human examination of policy decisions and clinical advances that can, have, and will shape the lives of millions of people.
It is crucial to examine the context in which these interventions take place to truly understand the impact they will have on the lives of individual patients. While objective measures like quality-of-life metrics can and do provide guidance at a macro level, stories that center around individual patient goals, preferences, and challenges are necessary to ground these discussions in the real world.
I hope that by illustrating a life after active treatment, my presence at the Summit can serve as an “in the flesh” inspiration for patients and caregivers; folks who are looking for some source of hope amidst the scans, blood tests, ER visits, and countless other shenanigans cancer can throw at you.
Sharing my cancer story is my way of giving back to the many individuals who helped me navigate this bumpy road. I hope I did y’all justice.
Watch Ariella’s immunotherapy story on TheAnswerToCancer.org.
Follow Ariella on Twitter at @cruella_chivil