Raise the Line

“I knew I wasn't going to survive unless I found a drug that could save my life,” says Dr. David Fajgenbaum, who has almost died five times from the rare disorder idiopathic multicentric Castleman disease, which he developed while in medical school. Now a physician and assistant professor at the University of Pennsylvania, Fajgenbaum has led research efforts into a cure for Castleman, discovering a drug that has kept him disease-free for eight years and is helping other patients. As he continues pursuing new therapies for Castleman, Fajgenbaum is also spearheading an effort to create a system for identifying alternate uses for existing drugs, something which could benefit millions in the rare disease community and beyond. “One of my favorite examples is tocilizumab, which was made for Castleman in the 1990’s and is now the first drug you'll receive if you're admitted to the ICU with COVID,” he tells host Shiv Gaglani.

The non-profit effort is being announced this month at a Clinton Global Initiative meeting. Don’t miss this deeply inspiring conversation with many lessons on the importance of collaboration, laughter and hope, and the perspective gained from feeling like you are living on borrowed time.  

Mentioned in this episode: www.chasingmycure.com

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On this special episode of Raise the Line, we get an eyewitness account of how medical needs are being met in the midst of the war in Ukraine from Ukrainian-American anesthesiologist Dr. Oleg Turkot, who has been coordinating resources and treating patients since the war started. As he tells host Shiv Gaglani, one important focus for him has been working with the Butterfly Network to distribute hand-held ultrasound devices. “If you have an ultrasound that weighs sixty pounds, lugging that as you're fleeing from a rocket attack ends up not really being your best priority versus something that you have on your belt.” Dr. Turkot is not new to improving medical care in under-resourced countries. For years, he’s been working with Kybele, an organization that creates healthcare partnerships across borders to improve childbirth safety.  Tune in to this fascinating and important conversation to hear more about that work, how Twitter can be a powerful resource in crowdsourcing medical devices, and about some of the unique differences between the healthcare systems in the United States and Ukraine. “I think the most important thing is to continue to support organizations that are doing the work on the ground because this is going to have to continue for years.”

Mentioned in this episode: 
https://kybeleworldwide.org/

https://www.butterflynetwork.com/


 

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When Akiva Zablocki found out his infant son Idan had a one-in-a-million immune disorder, he and his wife Amanda were terribly worried, as all parents would be. But unlike most parents of children with rare diseases, Akiva could draw on the expertise in navigating the healthcare system he gathered when successfully overcoming his own rare and scary ordeal with a brain stem tumor. Thanks to that know-how, his wife’s background in healthcare law, some amazing clinicians, the couple’s tenacity, and Idan’s spirit, he is now a healthy ten-year-old enjoying summer camp. On this episode of Raise the Line, Akiva shares the remarkable details of his family’s journey with host Shiv Gaglani, and tells the story of how the Hyper IgM Foundation, which the Zablockis launched, is helping patients all over the world. Be sure to stay tuned for some heartfelt advice for current and future providers as they encounter patients and families with rare diseases. 

Mentioned in this episode: https://hyperigm.org/

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“From the beginning, my approach was that we need to challenge the system,” says Dr. Ronald Harden, General Secretary of the Association for Medical Education in Europe (AMEE). In the 1970’s as a young medical professor in Scotland, this mindset led Harden to create the Objective Structured Clinical Examination, or OSCE, which dramatically improved the way medical students are evaluated. Many years and contributions later, he continues to push the field through AMEE, which is holding its popular annual conference starting August 27 in Lyon, France. As he tells host Shiv Gaglani, his latest focus is on the evolving role of the student, which will be described in a book being published by Elsevier next year. “The student has a changing role as a partner in the learning program. They're not just there as a client or consumer, but as a partner.” This partnership could extend to the area of helping to assess peers on resilience and problem-solving -- qualities newly recognized as important due to COVID -- and ones that students might be in a better position to observe than professors. Check out this inspiring wisdom drop from a veteran educator who has not lost even a wee bit of enthusiasm for his work.  “I think we have an exciting future ahead in medical education. There are so many things still to be done.”

For more information on the AMEE conference, visit https://amee.org/Conferences/AMEE-2022

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“So much of healthcare actually does have parallels to the business world, insofar as much of our job is to help align people to the next steps that are in their best interest,” Dr. Robert Lord tells host Shiv Gaglani.  Dr. Lord, who recently completed his medical degree at Johns Hopkins, understands the parallels between the business world and the healthcare world better than most. As a Partner at early-stage digital health venture capital firm LionBird Ventures, Dr. Lord works with all sorts of exciting companies focusing on elements of healthcare that can range from the back office of compliance, to front-end clinical devices. Prior to LionBird, Dr. Lord co-founded Protenus, which provides healthcare organizations with risk reduction solutions.  Robert’s insights have been featured in Forbes, The Baltimore Sun, and many national conferences, and he has briefed the U.S. Senate on cybersecurity threats to our nation's healthcare systems.  Tune in to this insightful conversation to get an inside-look into some of the exciting new start-ups Dr. Lord and his team at LionBird are working with, as well as many take-aways for aspiring medical professionals and entrepreneurs alike.  (Dr. Lord’s comments reflect his personal views and do not represent those of the organizations with which he is affiliated.

Mentioned in this episode: https://www.lionbird.com/

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“It's a strange odyssey being a rare disease parent. It sort of forces you to question everything about life,” says Philippe Pakter, whose daughter Lysiane was born with Pierre Robin Sequence, a condition that impedes normal breathing and feeding. In this compelling interview with Shiv Gaglani, he shares the wrenching details of his family’s daunting emotional, medical and legal journey. “It's tough, but you just have to keep going and from the hardship can potentially come very beautiful things.” Among the brighter spots of their story are finding a non-surgical treatment that helped with part of Lysiane’s condition, and connecting with a network of dedicated clinicians focused on improving treatments for Pierre Robin Sequence. (Pakter recently interviewed one of those doctors, Stanford’s HyeRan Choo, about non-surgical approaches. Listen here.) Don’t miss this opportunity to hear hard won wisdom about ways clinicians can approach their work to be mindful of rare diseases and how they can be a resource for patients and families who are often desperate for answers.  Pakter is a great example of how well-informed rare disease family members are, and why clinicians should listen closely to what they have to say.

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Ryan McQuaid was facing chronic back and joint pain so intense he could barely stand up in the morning.  Without a primary care doctor to reach out to about his symptoms -- and little experience navigating the healthcare system -- he turned to a friend, James Wantuck, who happened to be a Stanford-trained physician.  Through this relationship, which was largely conducted via text messages and FaceTime calls, Ryan’s condition was diagnosed and he received effective treatment.  It was out of this experience that PlushCare was born. “We said let's take that experience, this human-centric personalized care done digitally, and democratize it and give it to every American.” Today, the company provides nearly instant access to primary care from a desktop or smartphone, making it easy for patients to get the care they need without ever having to leave their home.  The company has grown considerably during the COVID-19 pandemic, and now has provided primary care and behavioral health care to hundreds of thousands of people in all fifty states.  Tune in to this conversation with host Michael Carrese to hear where the future of virtual care is headed, and how PlushCare’s team is tackling a major problem in the U.S. in an innovative way. 

Mentioned in this episode: https://plushcare.com/

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With its mission to bring the benefits of modern medicine to places that have been impacted by poverty and injustice, Partners In Health has been at the forefront of the battle for global health equity since it began in 1987.  Founded by a group of like-minded physicians and philanthropists, including the late Dr. Paul Farmer, it has focused on strengthening health systems in the communities that need them most. “Paul really saw that the link between academia and clinical and the community had to be a deliberate and authentic one," says Dr. Sheila Davis, CEO of Partners In Health. Dr. Davis began her work as a nurse fighting the HIV pandemic in the 1980s and has since built an amazing career in healthcare and philanthropy, holding multiple leadership roles at Partners In Health over the past decade. In this informative conversation with host Shiv Gaglani, she gives us an inside look at the organization's current work, provides insights on what it takes to strengthen healthcare systems, and stresses the importance of taking a community-grounded approach.  

Mentioned in this episode: https://www.pih.org/

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast