How I Became an Advocate for People with Cancer
By Gissoo DeCotiis
People living with cancer often talk about how it turns your world upside down. It makes you reevaluate almost everything and leads you to focus your time and attention on what is truly most important. This shift in perspective doesn’t just affect the person living with cancer, it can also happen to those who love them. It happened for me when my older brother was diagnosed with kidney cancer in his 50s.
At the time, I was working in the financial services industry, and had little experience with cancer. I soon found myself thrust into what seemed like a crash course in cancer care so I could try to support my brother and his family as we navigated his treatment.
As I worked with the rest of my family to be there for my brother, I discovered that there were some serious gaps that needed to be addressed to improve the cancer care experience. One of the biggest gaps pertained to availability of easy-to-understand resources about my brother’s cancer and treatment options. We would have benefited from having a roadmap and this type of information available at every stage of his disease, as we sought opportunities for shared decision-making with his care team.
Sadly, cancer took my beloved brother’s life at age 58 – and it forever changed mine. I was left with a feeling that I had to do more to help people like my brother and his family. I needed to try to address some of the frustrating barriers that we faced, so other families could have a better experience.
That’s why I decided to leave my career in financial services and become an advocate for people living with cancer. Bringing their voices and needs to the forefront of drug discovery and development has been my life’s focus for the past twenty years. During this time, I’ve seen tremendous strides made in both how cancer is treated and how patients and their families are supported as they navigate life with cancer.
Today, I’m privileged to have the opportunity to champion the needs of patients in my role as Head of Global Advocacy for Oncology at Daiichi Sankyo. One of the most important, and rewarding, aspects of this role is meeting people with cancer and their families and talking to them about their experiences, needs and challenges.
I help coordinate formal advisory boards for people living with cancer and the patient advocacy groups that support them to share their advice and counsel on specific topics. I also take every chance to attend conferences and events where I can meet with patients and families in more informal settings. Then, I take everything I’ve learned and work with my colleagues in medical affairs to make patients’ needs more broadly understood so solutions can be enacted to help them.
To this end, partnerships are really important in driving progress. At Daiichi Sankyo, we work closely with patient advocacy groups to implement programs that benefit patients and their caregivers. We also work with advocates to shed light on the patient experience by advancing policy initiatives to reach and educate lawmakers about patients’ needs. To further amplify patients’ stories, I often work with my colleagues to share patient profiles on our corporate communication channels. In doing so, I hope we can help others who may be facing similar circumstances, as we raise awareness of issues that matter to patients.
Another critical function of my job is taking insights I learn from patients back to the teams at Daiichi Sankyo who are working to develop new treatments for people with cancer. I strive to make sure that everyone in our organization – from research and development to clinical trial design to access – understands what patients need most, so that, collectively, we can make decisions with these needs in mind. One of the ways I ensure the patient voice is front and center is by creating opportunities for my colleagues to hear directly from people with cancer. Every month, we have lunch and learns, where patients and advocates share their stories with us. During these events, my colleagues and I often identify new ways to potentially ease some of the burdens of living with cancer.
One of the changes that we’ve tried to implement as a result of patients’ feedback is reporting our clinical trial results in easy-to-understand language. We’ve heard from many people with cancer that it’s difficult to understand study results published in medical journals, and that even after translating word for word with a dictionary, the overall meaning is often lost. So, we develop lay publications for some of our larger clinical trials. Now everyone on our team knows that when we are developing educational materials for people with cancer and their families, we must work to simplify complex scientific information as much as possible.
In all of these efforts, I see my role as helping to improve understanding of what people with cancer need, by listening to the experts – the patient themselves. In every interaction with someone living with cancer, my colleagues and I learn a little more about the barriers and hurdles patients have to jump through to simply extend their lives, which makes me even more passionate about making a difference that matters to them. I make sure that everyone in our organization stays focused on what is important to the patients and families that we serve – that’s how I honor my brother every day.