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The Power of the Patient Perspective: Q&A with Sylvaine Cases, Ph.D.

California
Innovation Center October 24th, 2017

Melanoma survivor T.J. Sharpe and his family

Understanding the science behind the diseases that afflict us is necessary to develop new treatments, but sometimes hearing about a person’s first-hand experiences about their patient journey can help to enlighten us with insights that can lead to innovation.

To stay informed of what people living with disease face, and to possibly learn about new areas of need, Johnson & Johnson Innovation has initiated an in-person patient Q&A series. Our most recent session, held in September, featured 42-year old T.J. Sharpe, a husband and father of two who is battling stage 4 melanoma. T.J. traveled across the country from Florida to share his story, including his diagnosis and eventual enrollment in several clinical trials.

Participating in this discussion was Sylvaine Cases, Ph.D., vice president of oncology scientific innovation at Johnson & Johnson Innovation, California. Here, she shares key takeaways from this emotional event.

You’ve worked in oncology for all of your career, so I would imagine you know the patient journey well. Were you surprised by any parts of the conversation?

Hearing T.J. speak about his journey highlighted the urgency to bring better solutions for patients. From a Johnson & Johnson Innovation perspective, we work hard to find and develop new therapies. But as T.J.’s story illustrated, connecting patients interested in trying experimental medicines with clinical trials isn’t often an easy road. We heard from another cancer survivor earlier this year who faced similar challenges in entering clinical trials.

Could you tell us more about the obstacles T.J. encountered?

Like many people first diagnosed with a disease, T.J. wanted to learn as much as possible about treatment options and what would work best for him. He reached out to his network of friends, colleagues and acquaintances, and received an overwhelming amount of information. Sorting through it all, he discovered experimental treatment options that were available to him. In particular, he wanted to try an immunotherapy, to help his body fight off cancer itself.

As a result of his outreach, he learned about a clinical trial that seemed like a good fit. The study had room for him and was located near his home. But one obstacle almost derailed him: paperwork, which delayed his acceptance into the clinical trial. He didn’t have time to waste, and he had a whole lot to live for—his cancer returned only two weeks after his second child was born—so he worked tirelessly to continue calling the company until he connected with the right people to help him enter the trial.

T.J. was also very lucky that he had financial stability. His health insurance covered his treatments so reimbursement was never a question. He also was granted a leave of absence from his work, so he had the time to advocate for himself. Of course, not everyone has that ability.

Where do we go from here? How can we use these insights to help others?

The experience was very motivating for our entire team. His talk reminded us that not all innovations that patients seek happen in the lab: sometimes making information about treatment options easy to find, or making clinical trial participation more accessable can be a big help. While we don’t have all the answers today, but we are thinking about solutions that are within our power to create or advance.

Editor’s note: The next patient Q&A will feature a patient with Crohn’s disease. Return here for insights following the conversation. 

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