By: Sarah DeBord
I have two perspectives as I look at clinical trials: as the patient needing one and as an advocate encouraging patients to enroll in them. But how can I encourage someone to do something that I personally find so frustrating?
Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
I got a taste of the clinical trial process last year when I thought it was finally time for me to start the search. I was ready and equipped with the basics, having spent a few years as an outside observer in the COLONTOWN clinical trials group for my tumor type; microsatellite stable (MSS). I knew I didn’t want to wait until I was out of options or use a clinical trial as a “hail Mary” in hopes of some miracle response to an experimental drug. For me, clinical trials are my only hope for reducing my tumor burden, achieving complete stability or (miracles abounding) be put into remission. If I want to find a way out of my personal doomed Death Star, it’s going to mean taking chances. Sorry Princess Leia, but a clinical trial is my only hope.
In my first attempt at finding a clinical trial last summer, I assumed my own oncologist would do all the dirty work. Though he may have initiated conversations with associates he knew running available trials in my city, I would quickly discover that’s as far as it got. I’m going to give him the benefit of the doubt and blame his assumption that I (the overly engaged patient who has dictated my own care plan) would be handling the clinical trial search. Each assuming the other was taking next steps lost me weeks in the process, and ultimately lost me an available spot in a promising clinical trial by mere days.
Lesson learned. Next time I would be the one to instigate phone call and take the necessary steps to get the ball rolling.
I’m now on my second attempt at clinical trials, and I find it no less daunting despite staying abreast of the landscape for the last year. Regardless of my proactive approach, I find myself no better at this than I was last year – hitting dead end after dead end. And even if a trial looks promising, I’ve learned that clinical trial and cancer center websites are rarely up to date, and the only way to get real time status of a trial is to talk to the cancer center directly. I also learned the hard way that nothing is certain until you sign on the dotted line.
A few days ago I got a call from my clinical trial nurse letting me know that the spot in a trial I was guaranteed by the sponsor had been given to someone else. The principal investigator at my cancer center was shocked, and based on the nurse’s choice words, I’m sure someone was on the receiving end of a heated phone call.
Though still moving forward with my clinical trial search, that call meant that in the eight weeks since my last infusion, and well through the chemo “washout” period required by many trials, I am back at square one. My anxiety is through the roof as I look back at eight weeks of doing nothing to actively prevent the cancer from growing in my body and look forward to additional weeks of inaction as I try to find another trial. The search is exhausting, defeating, and I am emotionally drained.
I can’t help but think how daunting and frustrating this would be for a patient or caregiver not engaged with research studies, terminology and an understanding of their own genetics and tumor germline. If they were to rely solely on their oncologist to navigate trials, would they get all the help they needed or know of all the options available? As I stumble through this myself, I wonder how someone without my knowledge and support community could navigate this on their own, especially when looking outside their own cancer treatment center.
As a patient advocate, I continually see the other side of the discussion. How do we get more patients to enroll in clinical trials? Currently less than 5% of patients will participate in a trial, and there are a number of barriers that keep that number low: eligibility criteria, geographic distance to a trial, financial means to travel, medical mistrust, availability of trials, etc. In these meetings I want to be the one in the back of the room who stands up and wildly waves my hands and scream, “You want to know why patients don’t participate in trials? Because you make it too damn hard!”
Here I am, a young, thriving, engaged patient with cancer once again burnt out on the clinical trial process. With three comprehensive cancer centers within easy driving distance you’d think it wouldn’t be so hard and that I’d have options. But alas, eight weeks later I’m no further along in the process than I was when I first started. The system needs to change if we are ever going to make faster progress with this cancer mess, but too many will die waiting for it to happen. I just hope I’m not one of them.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.