Sharing my story for the benefit of others

When you realize that your face is better suited for radio than TV, the obvious thing to do is avoid the camera as much as possible, right?  Well, that hasn't really been the case with certain melanoma patients recently.  It started innocently enough with an advocate video telling my story for other patients who will face this disease. Another organization also asked for a video testimonial (both videos will be available soon), and all of the sudden, my spotted mug and bleached lashes have gotten on camera more than Ed Rendell during football season.

I got a mid-winter email from The Feed, a news program on Australian television channel SBS (think a smaller version of Dateline).  They were doing a feature on PD-1 – specifically, on Merck making the drug available for compassionate use in the United States, but not (yet) worldwide. Somehow, they found the blog and wanted to use my story as the contrast to a young lady Down Under with a similar diagnosis, but a much dire prognosis.

So in March, the Sharpe family made their Aussie television debut. Skip ahead to the 2:30 mark if you want to get to the good part (me) — although the entire piece is an informative, quick watch that begs the question, "What the heck is holding up pharmaceutical companies and regulatory agencies from working together to save more lives?"

Even though it was my third time on camera in two months, I felt like I stuttered through the interview part (but granted, I feel like I stutter through all of them). The microphone doesn't have a Backspace key or spell check; I even screwed up part of my own diagnosis. There are so many chapters in my "story" it can be difficult to pick out the ones that resonate with a particular audience. Keeping track of talking points and tying answers back to specific questions can be a lot more difficult without the benefit of time, editing, and Google.

After the shoot was over, I remember thinking, I really need some practice speaking in front of a camera or group before the next time I'm scheduled to talk — which will be the DIA Annual conference in San Diego this June. Wouldn't you know, soon after the taping, I got a call from Santa Monica and the Milken Family Foundation – a private non-profit related to the Milken Institute. If you're not familiar (I wasn't), the Milken Institute is a global think tank founded by Mike Milken, the man credited with creating the high-yield bond (aka junk bond) market. Since his high-profile skirmish with the SEC in the late 80's, he has focused his time, and vast resources, towards philanthropy, particularly medical research.

The Milken Institute hosts The Global Conference annually – an assembly of international thought leaders and policy makers in finance, business, government, education, science, and philanthropy.  It is a Who's Who of the 1%; the speakers from this year's conference is a list of heavy hitters across most influential areas of everyday life.  The group collectively has an impact on our daily lives, in almost every facet, and the mission of the conference is to improve lives worldwide through economic innovation and political solutions.

So when they asked if they could include my story in a discussion on immunotherapy, I couldn't say yes fast enough.  The presentation was much different than the SBS video; the audience was being educated, not entertained, and the story was one of future hope and innovation, instead of more immediate crusade (mixed with a touch of sensational journalism).

Even the filming was different – SBS sent one local guy with a small hand-held and little instruction; he had me plucking coconuts off our palm trees and picking up Josie at school (two things that I rarely do, as Jen pointedly remarked afterwards). The Milken videographer, on the other hand, got more footage of me and the Holy Cross team then they could possibly use in the minute or two I would be featured, but it was so much more relevant, not to mention accurate. And just like that, the Sharpe family was on display in front of another international audience.  Josie is going to grow up thinking every kid has videos of them made and their picture on news websites regularly.

The Milken video starts at 4:35 of the hour-long discussion; you can skip right to my cameo at 6:42, although the whole five minute presentation is extremely informative (I have another little part at the end, right before the 10:00 mark). The entire video is a fantastic insight into how immunotherapy is changing the paradigm of cancer treatments; take a free hour and give a listen, especially if you are evaluating melanoma treatment options.

If you can't watch the whole thing right now, here is one excerpt that gives the essence of not just my battle, or of PD-1's effectiveness, but the changing landscape of cancer treatment. Dr. Jedd Wolchuck talks about immunotherapy (at 29:15) going from the fringes of cancer research into the spotlight as the next best hope for patients:

"This is the disruptive technology of cancer treatments, because it takes us 180 degrees away from treating the cancer, and to focus on treating the person… we're enlisting this dynamic organ, the immune system, to try and protect what's been achieved."

Later in the video, the panel discusses how less than 3% of the National Institute of Health's research grants went to immunotherapy in 2013, despite it being labeled the breakthrough of the year. Some of the people who can change that, and can help expedite drug access, were sitting in on this conference, watching some random patient in Fort Lauderdale tell them how immunotherapy is changing four lives every day. Here is hoping my radio-made face can help get those numbers increased — and that it gets patients like Kate in Australia the same medicine that is giving me my life back.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »