Results Not Typical: The Relationship Between Privilege and Clinical Trials

Orlando, FL—Mary Elizabeth Williams, a journalist and author of A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer, was one of the first patients in the world to be enrolled in a groundbreaking combination immunotherapy clinical trial, and was one of the first to have a complete response to the treatment used in that trial. She is also white, educated, and privileged, and she openly admits that this played a role in her survival.

At the Association of Community Cancer Centers 36th National Oncology Conference, Ms Williams discussed the importance of providing diverse patient populations with access to clinical trials.

In the summer of 2010, Ms Williams was diagnosed with melanoma, but after surgery and a lengthy recovery period, she said she had “all the hubris and confidence of someone who describes herself as a cancer survivor.” However, 1 year later she was humbled after receiving a diagnosis of metastatic melanoma that was associated with about a 5% chance of surviving 5 years.

Her oncologist told her about a new clinical trial that was enrolling patients at Memorial Sloan Kettering in New York City. She participated in the trial, and 12 weeks later, was cancer-free. She has now been in remission for 7 years.

“I was one of the first people in the world on that drug combination, and one of the first people in the world to have a complete response,” Ms Williams said. “I’m considered an exceptional responder, which I love, because I’m ‘Type A.’”

“So how did I win the ‘Cancer Powerball’?” she asked attendees. She told them that she is white, college-educated, and lives in Manhattan—a subway ride away from one of the best cancer facilities in the world. She had no preexisting conditions, a flexible job, and a supportive community and spouse. She is a journalist who asks questions for a living and was not shy to ask questions about her cancer and treatment.

“And I was in an innovative checkpoint inhibitor trial under the direction of the person who would go on to win last year’s Nobel Prize,” Ms Williams said. “Does that sound like your patients? I know I am not the norm, and I know I don’t represent the patient population or the patient experience; not even close.”

However, she went on to say that it does not have to be this way. She is passionate about patients and providers creating partnerships to bring clinical trials to more diverse and underserved patient populations.

Addressing Barriers to Clinical Trial Enrollment

The “typical” patient with cancer faces a myriad of obstacles to receive treatment, among them, transportation issues, employment concerns, and taking care of family members while undergoing therapy. However, one of the biggest obstacles to better outcomes is lack of communication and education about clinical trials.

Ms Williams remembers her 27-page informed consent document, and the overwhelming confusion she felt in not understanding a lot of the medical jargon. She did not understand the difference between cancer stages, cohorts or the phases of a clinical trial, or what commonly used words such as “resectable” and “standard of care” meant.

“That phrase, ‘standard of care,’ gets tossed around a lot,” Ms Williams said. “But I had no idea what it meant. I assumed I was going to be given M&Ms instead of real treatment.”

She signed her informed consent document barely knowing what it meant and went into a clinical trial without truly understanding what that entailed. “All of those things were potentially standing between me and the possibility of healing,” she said.

According to Ms Williams, it is crucial that providers talk to patients in a clear manner, avoiding medical terms such as “comorbidities” and “adverse events.” Frequently, patients are handed dense, verbose material about their cancer and its treatment, but patients are too afraid to ask questions about the things they do not understand. However, when providers listen to and ask questions of their patients every step of the way, meeting them where they are as learners and ensuring they are on the same page and the same team, communication becomes a partnership.

Ms Williams remembers certain physicians during her treatment who did not even bother introducing themselves.

“That’s really de-humanizing,” she said. “Communication, empathy, listening, and speaking in plain language—these are not extraneous or marginalized concerns.”

Ms Williams says there is an institutional tendency to only look to the data for answers, rather than listening to patients, particularly those in underserved, minority, and female populations. Clinical trials still do not do enough to recruit these populations, she added. These trials are still, by and large, designed for the white male population.

“Every patient and their caregiver are on a wildly steep learning curve,” Ms Williams said. “Maybe it’s time that we as patients send a message to the industry that the most disruptive, innovative thing we could do, would be to listen to each other.”

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