Disclaimer. Dialogue with a Patient 3/18/2016

Transcription

1 Medical Affairs and Scientific Communications 2016 Annual Forum Dialogue with a Patient Bill Wilkins, Co-Founder, Executive Director, Wilkins Parkinsons Foundation March Kissimmee, FL Disclaimer The views and opinions expressed in the following PowerPoint slides are those of the individual presenter and should not be attributed to Drug Information Association, Inc. ( DIA ), its directors, officers, employees, volunteers, members, chapters, councils, Special Interest Area Communities or affiliates, or any organization with which the presenter is employed or affiliated. These PowerPoint slides are the intellectual property of the individual presenter and are protected under the copyright laws of the United States of America and other countries. Used by permission. All rights reserved. Drug Information Association, DIA and DIA logo are registered trademarks or trademarks of Drug Information Association Inc. All other trademarks are the property of their respective owners DIA, Inc. All rights reserved. 1

2 BIO» Diagnosed with PD in 2006» Co-Founder, Wilkins Parkinson s Foundation» Charter member, The Michael J. Fox Foundation Patient Council Other relevant info:» Founded PD Friends group in 2007» Instituted pro-bono APDA GA Chapter media campaign in 2007» First-annual Polo for Parkinson s fundraising event in 2008» Recipient of Michael J. Fox Foundation s MVP award in 2009» MJFF digital & billboard media program in » Co-Founded Wilkins Parkinson s Foundation in 2010» Charter member of MJFF Patient Council in 2010» Appointed to Emory Udall Community Outreach Board in 2011» Received Wesley Woods Key to a Cure award in 2012» Provided discounted & pro bono media support to Unity Walk » Atlanta Presenting Partner for MJFF/Abbvie Partners in Parkinson s in 2014» Organizing partner of Parkinson s Disease Southern Symposium in 2014» Recipient of Alan Bonander Humanitarian Award in WHAT IS PARKINSON S DISEASE? Parkinson s is a chronic, degenerative neurological disorder for which there is no known cure. Vital Stats Today, an estimated 1M people in the United States and more than 5M worldwide are living with Parkinson s disease (PD) PD is the second most common brain disease after Alzheimer s One in 100 people over the age of 60 have PD, although some are diagnosed at 40 or younger The exact cause of PD is unknown, although researchers point to a combination of genetic and environmental factors 4 2

3 THE MANY FACES OF PARKINSON S DISEASE YouTube video: With permission: Fox Foundation PARKINSON S DISEASE (PD) IS HIGHLY VARIABLE AND IDIOSYNCRATIC PD is a boutique disease it is unique to each individual living with it People are usually more familiar with the motor symptoms of PD, as these are the signs of disease that are most noticeable from the outside. Some cardinal motor symptoms of PD include: Resting tremor Slowness of movement Rigidity Issues with gait and balance Doctors are increasingly recognizing the presence and effects of PD s nonmotor symptoms, which include: Cognitive dysfunction Depression and anxiety Constipation and digestion issues Sleep disorders Loss of Smell 6 3

4 CURRENT UNMET NEEDS IN PD Disease Modifying Therapies» There is no therapy that can prevent, slow or halt the progression of PD Improved Symptomatic Therapies» Today s best PD drug was discovered in 1967 (when Lyndon B. Johnson was president). PD patients need therapies to better address disease symptoms, including: Freezing of gait Some patients suffer from gait problems that can stop them in their tracks and increase their risk of falls Swallowing problems A decrease in the ability to swallow normally is a non-motor symptom of PD Biomarkers» There is currently no validated biomarker of PD. This means: There s no objective way to diagnose PD, leading to high rates of misdiagnosis There s no way to identify people at risk for PD or establish strategies for prevention There s no way to objectively measure the effectiveness of experimental treatments in clinical trials without a progression marker to track disease 7 HOW PATIENT S CAN BEST MANAGE THEIR DISEASE OVER TIME Because Build a comprehensive people with PD care can team live long and productive lives with the treatments currently available Because on the PD market, involves disease a wide range management of symptoms, is of working the utmost with a importance. variety of health care providers (physical therapist, nutritionist, etc.) is beneficial Participate in research Clinical trials are a crucial step on the path to developing better treatments for PD patients today, and yet 85% of trials face delays because of a lack of volunteers, resulting in a dramatic slowdown in progress toward a cure Maintain health and wellness Diet and exercise are an essential part of healthy living for PD patients Engage with the community Getting educating on your disease, building a supportive care network, and taking advantage of the many national and local resources available to PD patients are all important steps toward living well with PD 8 4

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