The Patient Inside Us All…
At some point in our lives we have been or will be a patient…and yet we are so much more. We are also parents, aunts, uncles, caregivers, in addition to the roles we embody as leaders in the healthcare ecosystem. We asked the patients interviewed for this second annual Patient Voice issue to define themselves beyond their disease. Their answers — found throughout this month’s articles — are inspiring and thought-provoking.
Many of us have the benefit of possessing insights into how the system works, or is supposed to work. But for hundreds of thousands of others who are suddenly — because nobody plans to be sick — thrust into the complex world of clinical development, payer reimbursement, healthcare education, etc. the journey can be daunting.
This special issue is intended to highlight patients’ perspectives on a number of trends, challenges, and opportunities that impact their world. We can’t thank enough the more than two dozen patients and patient advocates who bravely agreed to share their personal stories. Patients such as Bill Clark who joined the COPD Foundation after receiving what he percived to be death sentence at 48. It took a wake-up call from a friend to get Bill to begin to start living again. He became educated on his disease and took greater control in how his disease was being managed.
Joining John Walsh to help form what is now the COPD Foundation has turned into one of most rewarding experiences of his life. As he says, he is no a longer a victim, but a part of the cure.
Today real patients are asking for — even demanding — a realistic portrayal of what it means to be afflicted with a disease: the good, the bad, and the ugly. Whitney Petit, an epilepsy patient and advocate, believes her story could change lives. “I want to tell my whole story — the ugly, messy, raw parts — not just the fluffy, pretty, two-minute clips you see on TV or in a social media ad," she says. “My story is about the long nights battling my condition and the amazing mornings, which give me a story to tell. I would tell it over and over if it meant helping someone fight and push through and make a difference."
Biopharma companies are in a position to internalize these stories and take patients’ insights to heart all along the drug develpment and commercialization continuum. This is a mandate that is particularly important in the rare disease space, where patients and caregivers face unique challenges outside the standard journey of care. Ryan Mason, chief creative officer at closerlook and parent of a child with Kawasaki disease, a rare autoimmune inflammatory condition that affects the blood vessels of young children, says programs can be built to match families who are just beginning the journey with a disease alongside those families who have already traveled that path.
Rick Karl, president of the Cure Tay-Sachs Foundation (CTSF), understands deeply the pain of a rare disease. When his daughter, Krystie, was 8 months old, he and his partner realized she wasn’t keeping up with developmental milestones. After being diagnosed with Tay-Sachs, the couple undertook heroic measures to extend her life. Sadly, the couple lost their daughter when she was just 9. Today, Rick continues his work to help find a treatments for this devastating disease.
Patients are truly the unsung heros of the healthare system, and we salute them for their innovative and enduring spirit.
Taren Grom, Editor
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Their Word …
Denise Myshko
Managing Editor
Patients are taking a more active role in their own health, and this is reshaping traditional models of drug development.
Robin Robinson
Senior Editor
It’s not rocket science; pharma needs to partner with patients from bench to bedside and beyond in order to fill the unmet needs in healthcare.
Kim Ribbink
Features Editor
Parents are on the frontline in the search for cures and treatments when it comes to rare diseases.
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May 2019
The Past, Present, and Future of Personalized Medicine
Brand Bonds: Agency & Client Connections
R&D: Biosimilars
Healthcare Businesswomen’s Association: Rising Stars & Luminaries
Showcase: Connected Health
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Masthead
The forum for the industry executive
Volume 19 • Number 4
Publisher Lisa Banket
Editor Taren Grom
Creative Director Marah Walsh
Managing Editor
Denise Myshko
Senior Editor
Robin Robinson
Features Editor
Kim Ribbink
Design Associate
Ariel Medel
Director of Sales
Cathy Tracy
National Account Manager
Suzanne Besse
Webcast Network Producer
Daniel Limbach
Circulation Assistant
Kathy Deiuliis
Copyright 2019
by PharmaLinx LLC, Titusville, NJ
Printed in the U.S.A.
Volume Nineteen, Number Four
PharmaVoice (ISSN: 1932961X) is published monthly except joint issues in July/Aug. and Nov./Dec., by PharmaLinx LLC, P.O. Box 327, Titusville, NJ 08560. Periodicals postage paid at Titusville, NJ 08560 and additional mailing offices.
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