Raise the Line

“I’m currently sitting 100 feet away from a giant lab full of robots where we can do up to 2.2 million experiments a week,” says Dr. Chris Gibson, the Co-Founder and CEO of Recursion, a company whose mission is to create a more efficient path to drug discovery. You are going to hear a lot of mind-boggling numbers from Chris in today’s Raise the Line episode, but they all boil down to this: advances in genetics, computing, artificial intelligence, mRNA capability and other technologies are all converging to accelerate the testing of drugs at an incredible pace. This is particularly good news for people with rare diseases who are often in a race against time for development of therapies. Although only founded nine years ago, Recursion already has four programs in clinical trials. A key factor in this success is a bold departure from the traditional hypothesis-based approach to science driven by lab failures Chris experienced while earning his MD-PhD. Once he and his colleagues cast aside their bias about what was driving the disease in question, they achieved success in animal testing. “We just modeled the genetic loss of function because we knew that incontrovertibly to be true, and then asked the cells what was actually driving the disease and what could make it better.” Don’t miss this fascinating look at reengineering drug discovery through gene mapping, training neural networks and other leading-edge technology. 

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

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You might think improving healthcare quality is largely in the hands of the clinicians providing the care, but much of this challenging work is actually done behind the scenes by professionals who lead quality reviews, institute new protocols for safer care and focus on performance improvement, among many other efforts. “We are on a journey to really change the perception of what quality is. We want to make it more prospective and actually solve problems for patients and the healthcare workforce,” says Stephanie Mercado, CEO and Executive Director of the National Association for Healthcare Quality. On this episode of Raise the Line, we get an inside look at this critically important function in healthcare, and at the Healthcare Quality Workforce ReportNAHQ recently released that recognizes the field’s progress, but also outlines places for improvement. “The areas most important for the future of healthcare are things where the workforce is performing at lower ends of the competency spectrum. Those include health data analytics, change management and payment models. So, we have a lot of work to do.” Check out this revealing conversation with host Michael Carrese to learn what the future holds for quality professionals as healthcare challenges mount. 

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

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Grace Wilsey was born with a deadly genetic mutation so rare that at the time of her birth, it had never been identified in another person. The disorder, NGLY1 deficiency, causes a wide range of physical and cognitive problems such as muscle weakness, speech deficiencies and seizures. “The NGLY1 gene is in every cell in the body. It's almost like a firefighter that's on call, ready to go when there's a problem. Without it, the cell just kind of overwhelms itself with stress and starts to die,” explains Matt Wilsey, Grace’s father, who joins us on this episode of Raise the Line to talk about the daunting journey he and his family have been on since Grace was born in 2009. That journey involves starting a foundation and biotech company that’s fueling research on NGLY1 deficiency which could have an impact on more common diseases such as cancer, diabetes and Parkinson's. The researchers the Grace Science Foundation supports include several Nobel laureates whose work is providing reason for optimism. In fact, Matt says they hope to start a clinical trial in early 2023 to study a gene therapy that has shown promise in animal testing.  Listen to this fascinating conversation with host Shiv Gaglani to learn about the race with time to unlock the secrets to a gene that is fundamental to human life. 

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

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“You know, it's easy to say that default answer that everything's okay, but it's really not. She's lost a lot of her vision, she's got hundreds of seizures at night, and she's having difficulty walking,” shares Luke Rosen about his eight-year-old daughter Susannah.  She was born with KIF1A-associated neurological disorder -- or KAND -- a rare, degenerative genetic disease for which there is currently no cure or treatment.  On this episode of Raise the Line, Luke talks about how he and his wife Sally summoned the strength to move beyond their family’s own challenges to create KIF1A.org which is working to rapidly discover a treatment for all patients and families affected by this devastating disorder, but to also create a supportive community.  “Five years later, we have approximately four hundred families around the world that we've identified and there's not one family I know that doesn't play a significant role in what we do.” Thanks to that global community and partnerships with the Chan Zuckerberg Initiative, Columbia University, the n-Lorem Foundation, the Jackson Laboratory and many other organizations, there’s reason to be hopeful, as Luke shares with host Shiv Gaglani. “Susannah has been fortunate enough to just have started an experimental treatment. We really are on the brink of several things for, hopefully, the entire community.” Tune in for a candid and moving look at how families and supportive scientists and healthcare providers are mobilizing to fight back against a rare and pernicious threat to their children.

Mentioned in this episode: https://www.kif1a.org/

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As we continue our focus on rare diseases on Raise the Line, we’re delighted to be joined by Dr. Alaa Hamed, Global Head of Medical Affairs, Rare Diseases at Sanofi, one of the leading pharmaceutical companies in the world. Although most well known for their focus on lysosomal storage disorders including Gaucher and Pompe disease, Dr. Hamed and his team at Sanofi are also working in adjacent disease spaces depending on the systems affected. “For example, the lysosome in Pompe disease affects the neuromuscular tissues, so we have a neuromuscular disorder interest as well.” In their discussion, Dr. Hamed and host Shiv Gaglani also touch on the efforts Sanofi is making to shorten the diagnostic odyssey for rare disease patients, including building more disease awareness and greater global infrastructure.  “From the inception, we thought that having universal access is a key part of the rare disease equation.” You’ll also learn about the challenges of drug development, the importance of maintaining policy incentives to focus on rare diseases, and where innovation is needed most to advance outcomes for patients. 

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

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“Imaging has really become the tip of the spear of the patient journey,” says Daniel Arnold, CEO of Medality. In order to train future radiologists in this critically important and complex specialty, and keep current practitioners on top of their game, Arnold and his team are on a mission to transform the way radiologists learn by offering an online solution that mimics practicing radiology in the field.  “Our goal is to make it easy for radiologists to learn a new subspecialty in just five minutes per day.” In his conversation with host Shiv Gaglani, Arnold touches on how Medality (formerly MRI Online) is connecting radiology practices with people who have the skills they need most. The two also discuss the importance of getting imaging diagnoses correct the first time, why radiologists can't just rely on what they learned in residency and fellowship, and the impact of artificial intelligence and other technological advances in the field. “Being a part of the puzzle around how we disseminate new lifesaving technologies is what really motivates us and gets us excited.”

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

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“One of the reasons I really wanted to be at Walmart is that you're touching people that truly have a need,” says Dr. John Wigneswaran, the retail giant’s Chief Medical Officer.  And giant is not an overstatement.  150 million Americans visit a Walmart every week, and there is a store within ten miles of 90% of the U.S. population.  In terms of healthcare, there are roughly 5,000 Walmart pharmacies, 4,000 of which are in medically underserved areas.  Walmart visitors also have access to primary and urgent care, labs, x-ray and diagnostics, behavioral health, dental, optometry and hearing services.  So, clearly, the company is in a unique position to make a big impact in the healthcare space whatever they choose to do. One of their most recent choices is to boost the participation of rural and underserved communities in clinical research, which Dr. Wigneswaran sees as an extension of their existing mission. “Ultimately, what we're trying to do to is drive safer, high quality and equitable care, and research is just one of the levers,” he tells host Shiv Gaglani. Tune in to learn about the evolution of a growing player in America’s healthcare system which could include initiatives in diabetes, nutrition education, wound care and HIV.

Mentioned in this episode: Walmart Health and Wellness

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It’s not hard to start feeling relaxed when you experience a virtual reality visit to a mountain top, taking in the beautiful views of forested peaks and valleys and hearing the rustling breeze. You can actually feel transported from the real world.  But imagine how much more transporting it would be if you could also smell the pine trees? Well, now you can, thanks to OVR Technology, a Vermont-based company that has overcome substantial technical challenges to seamlessly add scent to the VR and AR experience. “Research has shown quite directly that adding sense of smell to VR tangibly increases presence and immersion and the key factors that everybody is looking for when they experience a VR environment,” says neuroscientist Dr. Rachel Herz, the company’s chief scientific adviser.  And because not everyone has positive associations with scents from the real world, says CEO Aaron Wisniewski, OVR is creating new ones to facilitate the therapeutic impact of the scented VR experience. Both stress that the applications for the technology go well beyond recreational use, and the units are already being deployed in clinical settings with one study showing a major -- and lasting -- drop in levels of pain, stress and anxiety among inpatients after doing just a few short sessions with the OVR headset per week.  Don’t miss this fascinating conversation with host Michael Carrese as we explore how OVR’s groundbreaking technology is adding a powerful new dimension to the virtual world.

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

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“We're the richest country on the planet, healthcare access has to be core to who we are,” says Karthik Ganesh, CEO of EmpiRx Health, one of the fastest growing healthcare services companies in the country and the industry’s only value-based Pharmacy Benefit Manager.  Ganesh and his team believe that radical changes are needed in the country’s healthcare system and they’re working to create a better experience for patients, providers, businesses, and insurance companies alike.  Ganesh has deep experience in the healthcare insurance industry and health data management with stops in his career at Aetna, Express Scripts and Deloitte, and he's also the author of The Happiness Model: A Roadmap to Inner Peace. In his conversation with host Michael Carrese, Ganesh talks about why employers need to learn more about value-based care, and how healthcare needs to become a less transactional relationship with the provider.  He also touches on some of the key factors that make EmpiRx different from traditional PBMs. “We are as equally focused on health outcomes as we are financial outcomes.” 

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

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