Science is Beautiful Blog

Patient Advocacy – Responsible and Strategic

Posted by John Kouten, CEO

Jul 10, 2012 5:16:00 PM

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Thank you to the pioneers of patient advocacy.  I am referring of course to the brave men and women involved in HIV/AIDS advocacy in the late 1980s and early 1990s.  I was humbled by the work of these selfless volunteers and, during my years of launching HIV-related drugs at Abbott Labs and Bristol-Myers Squibb, I had a front row seat to witness their sacrifices, successes, frustrations, and failures.

These courageous individuals established the role of the patient, caregiver and loved one in the healthcare services matrix.  Participation in FDA advisory committee meetings, regulatory considerations for early-access and compassionate use, surrogate end-points as markers for drug efficacy, and participation in clinical trial design are some of the major battles fought and won by our early HIV advocacy friends.

Patient advocacy has grown and matured in the ensuing two decades.  Industry, academia, governments, and non-profits now work in close collaboration and partnership with patient advocacy groups.  Most, if not all, disease areas have benefitted from active patient advocacy; however, it is clear that the cancer advocacy community has risen as the loudest and most organized advocacy community.

This is no surprise, considering the changing demographics and epidemiology of the disease.  Baby boomers are getting older and are very active in demanding their rights -- and cancer is primarily a disease of aging.   We all have a 1 in 2 chance (that’s a 50/50 chance for those, like me, who failed statistics) of developing cancer in our lifetime.

Today, there are thousands of cancer advocacy groups throughout the world. Over time, their tactics to provide education, support and advocacy have evolved to include sophisticated digital tools to achieve their goals.  As partners with numerous cancer organizations in the life sciences space, we are privileged to work with many of these groups on an ongoing basis.

 

Stupid Cancer

We recently had the opportunity to work with a relatively new organization called Stupid Cancerdescribe the imageMatthew Zachary, Founder/CEO of Stupid Cancer, launched this movement to help young people deal with cancer survivorship issues specific to young adults.  We recently attended their annual conference, the 5th annual OMG! Cancer Summit for Young Adults, in Las Vegas.  "This event provides a unique venue for hundreds of young adult cancer survivors to connect and share their experiences with patients like them," said Matthew.  “Our Las Vegas event was a high water mark for our organization and validated our mission to empower young adults affected by cancer."

More important than national summits, and their now-famous regional “Stupid Cancer Boot Camps,” Stupid Cancer is leveraging all that the Internet has to offer in the way of efficient, targeted and cost-effective digital communication with its constituents.  Stupid Cancer The group hosts a very deep website and supports numerous digital channels including Facebook, Twitter and Youtube.  Matthew also hosts “The Stupid Cancer Show” an award-winning weekly podcast (downloadable free on iTunes) about cancer issues facing young adults.

So how does this all contribute to your strategic needs?  If you are a commercial, scientific, academic or governmental organization that needs to efficiently and quickly reach a target audience of patients, caregivers and family -- seek to collaborate with a patient advocacy group.  In addition to a built-in audience and built-in digital communication channels – these groups offer a level of credibility that will add heft to your messages.

JFK Lives the Mission

At JFK Communications we also walk-the-walk.  Sara L. Kouten, VP, Finance and Operations at JFK is a triple negative breast cancer survivor who has been NED since 2008.  Sara volunteers a considerable amount of time for the Triple Negative Breast Cancer Foundation (www.TNBCFoundation.org) and the Komen Foundation of Central & South Jersey.

Sara KoutenRecently Sara was selected to represent the New York Mets as their honorary 2012 Bat Girl – a breast cancer awareness initiative sponsored by Major League Baseball and the Komen Foundation for the Cure.

As the 2012 honorary Bat Girl, Sara appeared on numerous local media channels and received an award at Citifield.  Sara took the opportunity to raise awareness of triple negative breast cancer.  You can see her appearance on the CBS news here: http://www.youtube.com/watch?v=RTvUfKG3eqw&feature=youtu.be&noredirect=1

Topics: Healthcare communications, media relations, JFK Communications, impact of social media in healthcare, patient advocacy, Stupid Cancer, Sara Kouten

 

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