The Alliance for Patient Access / IfPA’s Patient Access Policy Blog / Perspective: My Clinical Trials Awareness Journey

Perspective: My Clinical Trials Awareness Journey

The need for robust clinical trials participation is critical to women and men across this country, whether they know it or not.  I came to this realization through my own journey from researcher to patient to advocate – and ultimately to the Coalition for Clinical Trials Awareness.  

As a graduate student at Georgetown University, I did breast cancer research, but found that listening to clinicians discuss their cases during Clinical Breast Cancer Conference was my favorite hour of the week. I realized that researchers needed to listen to patients’ needs and challenges to inform the questions they were asking in the lab. At the same time, I saw how the research happening in labs informed the decisions that patients were being asked to make in their own clinical care.

I went on to earn my PhD, and I decided that I wanted to find a way for patients and researchers to communicate more effectively with each other. But since I had just been blessed with a brand new baby, I stepped away from the lab and all things breast cancer to stay at home.  

Several years later, my daughter was heading to third grade and her little brother stepping onto the school bus for his first day of kindergarten, and I began to consider how I could find my way back into science.

But I didn’t find a job in science that fall.  Instead, I found a lump.

I was diagnosed with aggressive stage IIB triple negative breast cancer at the age of 35, and I reentered the world of breast cancer in a heartbeat. I immediately began diagnostic tests and doctor appointments; I had eight rounds of chemotherapy followed by surgery.  It seemed endless.

I started with standard of care, knowing that if they found that the chemo didn’t kill all the cancer when I had surgery, I would enter a clinical trial to have additional chemotherapy. Fortunately, I had a pathological complete response — there was no cancer remaining at the original tumor site after surgery. I was spared even more chemo.

I have been without evidence of disease since.  But I was left with a fresh perspective, that of both a cancer patient and a cancer researcher.  Those insights have led me to advocacy.

As a cancer research advocate, I help researchers make their work patient centric and accessible to non-scientists. I give them a perspective and urgency that I hope they are never forced to understand from a first-person perspective.

As a patient advocate on the Metastatic Breast Cancer Project team, I interact directly with patients – building community, answering questions, and reaching out to those who are traditionally underrepresented in medical research.  I’ve also had the privilege of getting to know wonderful women and men in the cancer community through other advocacy opportunities. I’ve had countless conversations with my friends as they sift through available clinical trials online, only to find the “best options” are either too far away or exclude them for a myriad of medical reasons.

As a scientist, I understood the need to fill trials– an incomplete trial lacks the power to let the researchers draw conclusions.  If the trial isn’t completed, the only options are to start over with another trial or to stop development of a potentially beneficial drug.

What I didn’t understand until attending a policy roundtable sponsored by the Coalition for Clinical Trials Awareness was that as many as 40% of trial centers fail to meet their recruitment goals.  Just as there is a large group of patients, desperate to find the right trial, there is an equally large group of investigators searching for patients to fill their trials.

Clinical trials awareness matters on several fronts. Researchers must ask relevant questions in their research, and they need to help patients understand the importance and potential benefit of participating in clinical trials.  When investigators more effectively reach patients, they can more effectively bring potential drugs to fruition and, ultimately, to patients.  

Everyone benefits when good medicine gets to patients more quickly. It’s my pleasure to aid in accelerating this process as I work with the Coalition for Clinical Trials Awareness.

 

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Jamie Holloway, PhD, studied breast cancer at Georgetown University before her own breast cancer diagnosis nearly 10 years later. Now with no evidence of disease, she now bridges the gap between patients and researchers as a member of the Georgetown Breast Cancer Advocates and as the Patient Advocate for the Metastatic Breast Cancer Project at the Broad Institute of MIT and Harvard.

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The Alliance for Patient Access is a national network of physicians dedicated to ensuring patient access to approved therapies and appropriate clinical care.
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