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A Note to the Drug Development Community, From a Patient’s Perspective

The daily grind of getting a drug to clinical trial is grueling. When one is lost in the midst of seemingly never-ending paperwork, obstacles, and deadlines, the stress can pile on. Getting a drug to market is a marathon, not a sprint - but ultimately, the pharmaceutical industry is the reason that the world gets innovative, life-saving drugs that improve patient lives. Our 2017 Sherpa Summer Seminar Speaker, T.J. Sharpe, is a melanoma survivor, and gives us a good reminder of the importance of building strong patient-industry relationships. Read his story below:

 

By T.J. Sharpe, Melanoma Survivor, Patient  Advocate, Patient #1 Blog Writer

TJ is a melanoma survivor who went through two clinical trials. He will be speaking at the 2017 Sherpa Summer  Seminar.Patients – we are all going to be them one day. Some of us already ARE them, and absolutely need access to clinical trials just to have a shot at living another day.  Knowing that medical issues will inevitably affect each of us and the ones we love, what would you want the clinical research community focusing on right now, to give a brighter future to the patients of tomorrow?  And what is the viewpoint of current patients, who see the end results of the current drug development efforts?

As a two-time clinical trial participant for stage IV melanoma – a disease that should have killed me, and nearly did – I have come to appreciate the dedication and sacrifice made by countless people that contribute to my continued health.  I could not imagine just how many are involved in this process when it first began five years ago.  I have met countless faces across multiple medical centers whose everyday work was directly related to getting me healthy. 

I have also been fortunate enough to make a career of writing and speaking with the pharmaceutical, biomedical, and clinical trial industries as a patient representative.  This new chapter has exposed me to the human side of the medical industry most patients never see.  The average patient encounters their immediate medical team and hears the latest pharmaceutical headlines.  That’s pretty much it. 

They often don’t recognize the enormous efforts that go on behind the scenes to facilitate drug development. They don’t understand it is much more than simply doctors diagnosing, nurses infusing, and industry collecting (sometimes hefty) payment. They don’t see the people who dedicate careers and lives doing invaluable parts that collectively allow clinical research to turn promising drugs into breakthrough therapies.

Like any business – and yes, clinical research is a business, one that can improve or extend your life – there are several places where the “ business” can improve the delivery of goods and services to those it serves. Data sharing is still mired in a restrictive environment despite initiatives to move the needle. For all the technology advances in research, there has not been the equivalent exponential leap in treatments for the general population.  Most frustrating, the drug development ecosystem is still slow to truly embrace patients as a significant stakeholder in the development process.  The ball is rolling, but that partnership has yet to fully emerge across most disease states.

The bottom line for patients and industry is really the same – get medicines to patients faster, safer, and with better precision.  The strides made in the last half-decade have begun hitting those mutual goals. Patients and advocate groups have increased their collaboration and influence, and are insisting on being involved in the drug development lifecycle. Kudos to those in the industry who are leading the way in embracing these stakeholders as equals - especially since we’ll all be one of those stakeholders someday.

If you would like to meet T.J. in person, and listen to his story, here's your chance - sign up for the 2017 Sherpa Summer Seminar on August 10, and join over 150 of San Diego's life science professionals. 

Register for the 2018 Sherpa Summer Seminar

T.J. is a Stage IV melanoma survivor, writer, advocate, and patient expert that can be found at the Patient #1 blog at www.philly.com/patient1/.  He was diagnosed in August 2012 with melanoma tumors in multiple organs; since then, he has undergone six surgeries and four immunotherapy treatments over two different clinical trials.  He remains on his second trial, for the anti-PD-1 drug pembrolizumab, with no detectable active cancer.  The initial failures, and subsequent response, have been chronicled in his blog posts since December 2012.  As a speaker and consultant, he has presented to or worked with many of the top pharmaceutical companies and industry trade organizations, and his story has influenced an initiative to bring clarity and common language to clinical trial contracts. As a writer, he contributes to www.NovartisOncology.com, his Patient #1 blog at www.philly.com/patient1/ , and www.SkinCancer.net on a regular basis, along with ad-hoc online and printed contributions to multiple outlets.  A South Jersey native, T.J. lives in Fort Lauderdale with his wife Jennifer and two children, Josie and Tommy.

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