Health care is nobody’s idea of a picnic – and we all know it. No one likes dealing with it and most only seek it out when they absolutely have to. The industry has more than it’s fair share of challenges.
But, not everyone is accepting the status quo. There are people out there who are overcoming challenges and being successful despite the system, not because of it.
These are the people we are featuring at What’s the Fix? on June 14. We’re bringing them in to teach the industry how they’ve managed past obstacles and how to use what they’ve learned change it for the better. These people have worked hard to find solutions to problems that vex many of us – and they’re solutions that can be scaled.
During the morning sessions, our first three speakers have each overcome major health care hurdles on their own, and have dedicated themselves to driving change as a result of what they have learned.
Dana Lewis, a type 1 diabetic, who not only built her own artificial pancreas, but built it open source so anyone can build one. She is a passionate advocate for beating her own diagnosis and helping others do the same. She is a part of the #WeAreNotWaiting movement and collaborates with people around the world to encourage solving healthcare problems in new and innovative ways. Dana is also collaborating with the U.S. Food and Drug Administration and other government agencies to develop and implement new review processes to meet the growth of maker and other rapidly-innovating patient-driven research projects, and thereby demonstrate the safety and efficacy of new ideas and approaches far faster than can be done using traditional development and approval processes.
Morgan Gleason was diagnosed at age 11 with a rare autoimmune disease called Juvenile Dermatomyositis. At just 15-years-old, she found day-to-day flaws in the hospital system, captured, and distributed them publicly through YouTube to raise awareness about what needs to be fixed in hospitals for a better patient experience. She now teaches other patients that they, too, can feel empowered to speak up for themselves and others, and that they don’t have to settle for how the health care system is. Morgan is now 18 and a student at Auburn University, where she spends her free time working as a Patient Experience Advocate to share her experience and fighting for a cure to JM alongside her mother, Amy Gleason.
Fred Vogelstein and Evelyn Nussenbaum’s son, Sam, was diagnosed with epilepsy when he was just four and a half years old. After seven years and dozens of failed treatments, Sam was up to 100 seizures a day with no help in sight. Their quest for a cure landed them abroad to seek a controversial –and never before tested in humans – treatment derived from cannabis. After being in contact with doctors and pharmaceutical executives on two continents, the pair was successful in getting GW Pharmaceuticals to make special cannabidiol (CBD) pills for Sam that they believed could help treat his seizures. Their son was the first patient in the world to try Epidiolex, GW Pharmaceutical’s experimental epilepsy drug. It saved his life, which helped convince GW to begin clinical trials. Those trials are nearing completion and have enabled thousands of kids to try the medication with encouraging results.
We hope these amazing individuals will inspire all of us online and in-person at the conference to make health care better. We hope they’ll inspire you to take action. And we look forward to them setting us up for a powerful afternoon (that you’ll read about in our next post).