Jamie Goldfarb is a writer, mom, cancer survivor, former clinical research employee and a clinical trial participant. Her personal and professional experience with clinical research fuels her advocacy efforts.
LillyTrials: We became acquainted with you when Liz Mascherino from our team met you at the CROWN Congress in early 2016. At that time, she was guiding the expansion of Lilly TrialGuide to include a cancer clinical trial-specific section, and she was piqued by your story and passion advocating for clinical trials. What appealed to you about her request to provide patient input to the development of Lilly TrialGuide?
Jamie Goldfarb: As a patient advocate, I cannot possibly stress enough the need to get information about clinical trials directly to patients in a way they can understand. We’ve been using physicians as gate keepers for too long. Now is the time to foster a population of informed, proactive patients who are in control of their own health, who are active participants in determining their own treatment, and who are empowered to make decisions and take action. In some cases, their lives depend on it.
Lilly TrialGuide aims to support patients in their own search for clinical trial information. It is exactly the kind of resource that patients need and represents a concentrated shift in society’s overall mindset regarding health.
LT: You played an important role in the development of the Lilly TrialGuide cancer website, helping us to shape it with the viewpoint of someone who had participated in a clinical trial. Can you share a bit about how you influenced certain design or content decisions?
JG: As the site was being developed, I was asked for patient insights to guide topic areas and themes for the Common Questions section of the site. I also provided ongoing reviews, edits, and suggestions to the layout of the site and the research area videos to help ensure the site provides content that is relevant, informative and relatable content for patients.
LT: We are grateful for your input! How did you end up deciding to join a clinical trial in your own experience?
JG: I was diagnosed with stage IIB melanoma in January 2008. I had birthmark on my left thigh that had changed over time. I had a wide excision with clear margins, meaning no further disease was detected, and I went on about my life. Over the course of the next year, I got multiple infections near my surgical site. After the third infection, they decided to go in again to see if maybe they had left something behind, like a suture, that was causing infections. During that surgery, they found a mass of melanoma in the deep tissue, which then put me at stage III. After consulting with my oncologist and several melanoma specialists, we decided not to go through any treatment and go back to our normal lives. In January 2010, I became pregnant, and gave birth in October 2010. In January 2011, right before I was scheduled to return to work from maternity leave, my oncologist suggested that we do a follow-up scan since we had not done once since before I was pregnant. That scan showed melanoma in my liver and my pancreas, at which point I was stage IV.
At the time, there were only really two approved treatments for melanoma, neither of which provided an acceptable option. We had a brand new, 11-week old baby, and I was determined to beat the odds. Although there were only two approved treatments for melanoma, there were several alternative options available through clinical trials. So, after I was diagnosed, it was a flurry of obtaining information, getting the opinions of melanoma specialists, and speaking with as many people as possible to determine what our treatment pathway would look like. We settled on joining a clinical trial at the National Cancer Institute for Adoptive Cell Therapy, also called TIL (for tumor infiltrating lymphocytes).
The way TIL works is really awesome, in all senses of the word. First, they harvest tumor and extract all of the white blood cells within that tumor, because those cells were able to identify and start attacking the tumor. They then replicate these cells in the lab by the billions, and in my c...
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