Tom Marsilje, Ph.D., a senior oncology researcher, passed away last November at the age of 45 from metastatic colorectal cancer. Despite his young age, he left an indelible mark on the world of cancer research and clinical trials.
Tom was more than a scientist. He was a friend, a colleague, a father, a husband, a music lover, and in the end, he became the researcher who brought humanity to our fight and reminded us all — from scientist to physician — why we work so hard to find answers for those facing cancer.
A self-described introvert, Tom emerged as a fierce patient advocate and supporter after being diagnosed with colorectal cancer in 2012 at the age of 40. He leveraged his knowledge of oncology research to help others navigate the confusing world of cancer treatments and clinical trials. He became a prolific writer throughout his battle, chronicling his journey in his blog, guest writing for a patient advocacy website and drafting newspaper articles on his struggles.
All the while — even in the final stages of his disease — he expressed a sense of hope and wonder at the life before him.
And in the process, he touched millions of lives — of patients, of physicians, of nurses and of researchers.
Tom’s connection to cancer started at a young age. His earliest memory was of his grandfather, who had a colostomy bag after being diagnosed with rectal cancer. He later watched his own mother die from pancreatic cancer when he was in graduate school — an event that had a profound effect on Tom. His family’s experience with cancer turned his research into a passion that never diminished.
While working on the development of a promising new molecule, he realized the power of social media in helping connect researchers to patients. He found blogs and message boards from patients describing their first-hand experience with drugs and sent them along to the project team to reinforce the real-world impact their work had on people’s lives.
But one of Tom’s greatest contributions to science came from his work away from the bench — when he stepped into the role of clinical trial advocate. As a researcher, he understood the importance of clinical trials, but as a cancer patient, he realized the difficulty patients faced in finding clinical trials that were right for them. Unfortunately, he also knew that many patients either didn’t know much about cancer clinical trials, had limited access to them or weren’t guided to research studies by their health care providers.
“Every molecule that becomes a drug needed to have a champion somewhere along its lifetime. You can always find something wrong with a molecule. You can always find a reason to kill a project. You need to have at least one champion in there that says, ‘No. This has a chance at really helping patients. We’ve got to keep pushing forward.’ Every drug will have a different story behind it. But I guarantee every drug needed at least one champion in its lifetime, during development.”
So, Tom encouraged patients to become their own best advocates — because he knew important research is being done to find new treatments. Today’s treatments started as investigational products in clinical trials. It is estimated that more than 58 million people are needed to meet the demand of all enrolling studies on ClinicalTrials.gov. It is clear that demand for trial volunteers is steadily increasing.
Tom saw gaps and issues in the way things were working, in particular a lack of patient awareness of clinical trials. Because of this Tom was inspired to start the “Late Stage MSS-CRC Trial Finder: A curated list powered by patients” and crowdfunded a colorectal cancer clinical trial.
Now, to acknowledge Tom’s legacy and the countless others who have paved the way, we must continue to spread knowledge of clinical trials within our communities. Physicians and other health care professionals are a vital link between their patients and clinical trials.
In fact, many people will not consider participating in clinical trials without the support of their regular HCPs. Despite this, clinical trials are often not a topic of conversation between HCPs and patients, outside of the research setting. Please join us in acknowledging Tom’s work, and click here to add your name to this letter, supporting increased awareness of the importance of clinical trials.
Erika Hanson Brown, COLONTOWN Founding Mayor
Anne Carlson, Executive Director, Colon Cancer Coalition
Anjee Davis, President, Fight Colorectal Cancer
Laurie Todd, The Insurance Warrior
Michael Sapienza, CEO, Colorectal Cancer Alliance
Candace Henley, Chief Surviving Officer, The Blue Hat Foundation
Krista Wilson (aka: ColonGurl), CRC Advocate
Fabian Sandoval, CEO, Emerson Clinical Research Institute
Suzanne Lindley, Co-Founder, YES! Beat Liver Tumors
Rebecca B. Keller, President and Executive Director, The Gloria Borges WunderGlo Foundation