I was in Chicago last month for the American Society of Clinical Oncology (ASCO) annual meeting where as you would expect the topic of conversation was cancer at every turn. While it is generally easy to get wrapped up in these conversations, this year was different. Just a couple of weeks before the meeting, I lost someone very special to me who had been undergoing treatment for cancer.
While some people come to drug development searching for a solution for someone they care about, my journey had been more about intellectual curiosity than passion. In my training as a chemist, my emotions generally involved frustration with reactions that wouldn’t work or elation when a multi-step synthesis resulted in the molecule I was trying to make. When I moved away from the bench, I took on the alternate responsibilities and tasks associated with clinical development, which eventually included reviewing case report forms for patients being treated in a Phase I cancer trial. While these patients are known to me by numbers not names, I have created narratives – told the stories of – their disease based on boxes from a form. For example, the person who went for years with stable disease and then experienced a sudden, rapid recurrence, or the person who has tried treatment after treatment without effect or relief. While verifying details from the clinical forms, you do encounter glimpses into the otherwise obscured personal life of patient number X; learning about the child who is bringing them for treatments, or the week they need off of study for a wedding or graduation.
One way that I engage people when I give talks about our cancer drug or oncology clinical trials is to ask whose family has been directly impacted by cancer. Unfortunately, I can now join them by raising my hand as well. I now have my own story where the person has a name, a face, and a story that is full of memories having nothing to do with cancer, rather than a simple patient number.
Scientists working to develop new drugs are generally at (or well beyond) arm’s length from the patients who will take their drugs, while the healthcare providers who take care of the patients see these stories unfold firsthand, instilling a sense of mission and passion (what Freudenberger calls idealism) at the cost of potential burnout.
The time between an initial discovery and making a new drug available to patients is long – on the order of a decade – widening the gap from scientist to patient. As a scientist, the focus is thus often on technology. On their own, technology and research aren’t the solution for effective new therapies. We need to be providing solutions to the problems that exist – not developing interventions that don’t improve the lives of our customers – our patients. We could likely create more value for everyone – passion for scientists to provide solutions for patients – if we created pathways for scientists to interact with patients, with physicians to understand what their issues really are.
On a personal level, I am grateful that my career has taken me from discovery to development to clinical. My recent experience has made my sense of the patient as customer even stronger than before. Perhaps it is idealism but I hope that my work will lead to a solution that patients actually need.