Earlier this year, I wrote about three young women diagnosed with a rare form of lung cancer. There was little research on their disease and their future didn’t look bright. So they hatched a plan and, with our help at the Addario Lung Cancer Foundation, launched one of the first patient-driven, advocacy campaigns in lung cancer research.
We’re at a pivotal point in the fight against cancer. Researchers have a greater understanding of its molecular causes than ever before. However, as Dr. Tony Mok so eloquently stated at the recent World Conference on Lung Cancer in Toronto, it’s time for the research establishment, pharma and academia, to remember the reason for the research is the patient.
Patients are at the center of the fight. It starts in the doctor’s office with a diagnosis. In an instant, they become part of a club they didn’t want to join. But given no choice, they begin to fight. They campaign for themselves, for other patients, and perhaps those they’ll never know. Patients find the superhuman strength to fight their own disease, then go fight it for others too weak to engage.
So why aren’t patients also at the center of the research battle?
Patients should be driving the research together with pharmaceutical companies and academia. I know this idea sounds outrageous, as it is challenges the status quo. But I am convinced it will get us to a cure for cancer faster, because the cure lies with the patient.
Today there exists a holy trinity for cancer research: pharmaceutical companies, academia and patients. For far too long, patients have been the lesser party in this symbiotic relationship, viewed as merely the benefactors of the work being done. Academia and pharma call this process “translational medicine,” where the information and data collection flow one way, from them, to the patient.
Unfortunately, patients are not always valued, appreciated or considered a viable solution to treating cancer, nor are we recognized for our work. We give our tissue, blood and plasma. We suffer the poking and prodding, the exams and the humiliation of being treated like specimens rather than people.
We submit, because if we didn’t, data and treatments would not exist. Many of us become advocates and give even more time, money and amplification to the cause. Given all this, is there any doubt that the cure lies with the patient?
Because patients have never felt welcomed at the table, they have decided to make their own way. Many have banded together to form their own groups. Just within the lung cancer community, patients are forming subgroups around their specific cancer types. They sport hopeful and powerful names: ALK Positives, ROS1ders, EGFR Resisters, RET Renegades and Young Lung. Through social media, they connect, provide support, compare treatments, share studies, and educate newcomers. These alliances generate such synergies that they become truly unstoppable.
Patients know something has to be done. The establishment would be wise to join them and follow their lead. Otherwise, we’ll continue to see fewer and fewer people take part in their studies. The problem is real. Only four to five percent of cancer patients are participating in clinical trials. Such low participation rates will not successfully lead us to a cure for cancer or any other disease. However, we could change the course of research drastically if the trials were designed in partnership with patients.
Instead of one-way flow of information, we can institute Transformational Medicine, where all parties collaborate. The patient is involved at the beginning in clinical trial design, and the information flows both ways: from patient to research, and back again. If researchers developed trials with patients in mind, patients would join in greater numbers. And if we could raise participation in clinical trials from 4% to 50%, treatments and cures would likely come much faster.
Auto makers develop new models with the help of customer focus groups. Cell phone designers wouldn’t dream of making a new phone without customer input. Yet when it comes to finding cures for cancer, patients are often not factored into the discussion. Cars and cell phones are nice, but beating a deadly disease is far more important than any consumer product. It’s time for pharma and academia to include the most important voice not in the room – the voice of patients who’ve got the most at stake and not a moment to lose.