Empowered Patient Podcast

Daniel Barvin, VP of Operations and Patient Advocacy at Coya Therapeutics discusses the challenges of treating ALS (Amyotrophic Lateral Sclerosis) and the company's approach to developing therapies for this heterogeneous disease.  Focusing on a combination modality, Coya is developing therapies effective for sporadic and genetic ALS, targeting regulatory T cells and reducing inflammation to slow disease progression. Daniel, who carries a genetic variant for ALS and FTD (Frontotemporal Dementia), emphasizes the need for resources and support for the next generation of pre-symptomatic genetic ALS patients.   Daniel explains, "Coya is based upon the discovery of Dr. Stanley Appel of Houston Methodist, that all neurodegenerative diseases, we believe, also autoimmune and a few metabolic diseases, drive an inflammatory response. The death of a motor neuron or damage to a motor neuron is an alert to the body that it should send inflammation to fix that motor neuron or beta-amyloid plaque buildup. Unfortunately, inf

Dr. Bala Hota, Senior VP and Chief Informatics Officer at Tendo, emphasizes the importance of leveraging data to improve patient care and operational performance in healthcare and overcome biases in access. Focusing on quality measures and integration of structured and unstructured data, Tendo has developed services that support providers, patients, and caregivers using multiple avenues of communication.  The acquisition of MDsave allows for a marketplace that provides transparent pricing for medical services, adding to this omnichannel healthcare model. Bala explains, "At Tendo, our vision is to be the trusted connection between patients, providers, and caregivers, using an intuitive and seamless interface to provide that optimum experience. The way we approach things is we have a number of different ways that people interact with our application and our software. We have a patient care journey application, which helps patients navigate through complex care pathways." "We have an insights offering that uses

Dr. Philip Chenette, a fertility doctor with over 20 years of experience, talks with Deepak Puri, CEO of Democracy Labs, about misunderstandings about reproductive health and the political ramifications. They discuss the role of doctors in educating patients and politicians about fertility treatments and the importance of the patient's voice and vote to protect reproductive rights.   Deepak sets the stage, "Patients often don't connect the dots. So, having a doctor explain, these are the complications, this is what's happening, this is why I cannot treat IVF for you because regulations and politicians are interfering with the process. As a physician, there's only so much I can do. But if you, as an individual, as a mother, and as a father, want to bring about change, you have to get involved and vote. So, that's where the connection happens. And Dr. Chenette articulates this really well." Philip explains, "In the early days, it was just people who were trying, and trying, and trying at home and just couldn't

Amanda Bury, Chief Commercial Officer at Infermedica, emphasizes the need for better care navigation tools to help educate patients about care options and appropriate providers to address their concerns. AI-powered care navigation also supports clinicians by identifying patients who need in-clinic attention, those who can be helped through a telehealth visit, or those who can be given instructions about self-care at home. Amanda addresses the need for education and trust when bringing AI to healthcare and the positive impact these technologies can have on alleviating the shortage of healthcare workers.   Amanda explains, "Taking it a step further is this new wave of care navigation tools, which takes that search match a step further. It leverages more of a question-and-answer capability to help route, manage, and navigate patients to the best care choice, whether inside a hospital via a telemedicine appointment or maybe they can even self-care at home. So, care navigation tools have evolved quite a bit, and

Dr. Ahzam Afzal, Co-Founder and CEO of Puzzle Healthcare, aims to reduce readmission rates to hospitals and skilled nursing facilities by focusing on discharge planning and post-acute care. High readmission rates can result in financial penalties and are often caused by the complexity of the patient's condition and social determinants of health. Puzzle is working with health systems and SNFs to implement a readmission prevention program that includes physiatry and care coordination 90 days after discharge.  Ahzam explains, "Hospital readmissions have become a focal point for our healthcare systems for several reasons. First and foremost, they are a key indicator of the quality of care being provided by these facilities. High readmission rates often suggest that patients may not be receiving the comprehensive care they need during their hospital stay or the necessary support post-discharge. This could be due to inadequate discharge planning, insufficient patient education on their conditions, or a lack of eff

JJ Mosolf, Founder and President of Academy Medtech Ventures, develops digital health solutions for use in clinical environments and at home to drive more effective rehabilitation. Addressing the brain and body by combining cognitive training with physical rehabilitation demonstrates better health outcomes and pain management. Their operating system, Cog PT, includes user-friendly tools for in-clinic assessment, AI human motion capture, and training, with a companion app for patients.  JJ explains, "We see the body and the brain as intricately connected. A lot of the literature over the past decade or so points to the brain as a vehicle for the upside, as the driving force behind what goes on from a neuromuscular standpoint. We see this less as, "Let's introduce cognition and neurocognitive training to uncover some deficiency or impairment," and more as a vehicle for training upside purposes. This connection point is typically where people struggle."   "The operating system term references every component wi

Adam Kautzner, President of Express Scripts, highlights the role pharmacy benefit management companies play in negotiating prices with drug companies and pharmacies. They also perform health safety checks to ensure patients get the correct medications and updates, and those with multi-morbidities are checked for possible drug interactions. Overcoming the supply chain challenges during the pandemic, Express Scripts continues to develop more effective solutions to lower the cost of drugs and improve access.   Adam explains, "Unfortunately, prescription drugs are becoming even more expensive. So our role in that space is to work for employers, or potentially for health plans, that hire us to help improve, for patients, medication affordability, to improve patient outcomes, and ensure that for patients there is predictability at the pharmacy counter to navigate their pharmacy benefit."   "We're able to do that because, as the most utilized benefit, we have a bird's eye view of all the different patients' needs t

Wayne Picker, Head of Operations at Prenuvo, discusses the use of whole-body MRI as an early detection tool to change the paradigm of healthcare from reactive to proactive. Using an optimized MRI machine, these 3D scans allow clinicians and patients to identify early signs of disease and gain insights into actionable information that can influence lifestyle changes and future testing. Prenuvo is focused on reducing the cost of whole-body MRI scans and making them affordable and accessible to reduce late-stage diagnoses dramatically. Wayne explains, "MRI is still quite a young tool. It's only been around for the last 40 years. Traditionally, MRI has always been a slow scan technique. And so, because of that, it's usually the last test people are ever getting done. Usually, imaging starts with an X-ray. If they can't find the solution from that, they'll often go for a CT scan or an ultrasound, and usually, MRIs are the last test that people get sent for." "This is a real shame because MRI is the most sensitiv

Cynthia Pussinen, CEO of Sernova, describes their innovative cell therapy platform, the Cell Pouch System, which can deliver functional cures for chronic diseases using therapeutic cells, tissues, proteins, and other molecules. This implantable device is made of mesh that allows for vascularization, forming a pseudo-organ that can function in the body and fulfill unmet needs. The current focus is on type one diabetes, where the Cell Pouch has shown promising results, allowing patients to become insulin-independent. Other potential applications include treating hypothyroidism and hemophilia A.   Cynthia explains, "The Cell Pouch is a very flexible implantable device. It's made of two polypropylene mesh sheets, and in those mesh sheets, it has perfectly sized pores. So, the Cell Pouch is a couple of millimeters thick and about the size of a credit card."   "We take the Cell Pouch and, place it in the abdominal region of the patient and let it sit for a couple of weeks. And that is to allow vascularization. So

Dr. Ben Barlow, Chief Medical Officer of Experity, has identified opportunities to leverage the power of technology in the complex urgent care environment, which requires a wide range of services. To overcome the challenges of long wait times and staffing shortages, Experity is streamlining workflows and making urgent care more efficient and patient-centered. Online scheduling, pre-visit information gathering, and access to existing electronic health records aid clinicians in treatment decisions and post-visit follow-up, resulting in improved delivery of on-demand healthcare services. Ben explains, "We do a lot of different things. I don't think people know what we do in urgent care. We started being an alternative for patients to the emergency department, but now we've evolved into being patient-centered to where the doctor waits on the patient. And so, that's what we do in urgent care. We take care of a lot of different needs of the patients, really dictated on what the patients want us to help them with."

Meg Boehme, living with multiple sclerosis and a friend, discusses her reaction to receiving the diagnosis of MS, which she had suspected for many years due to little-understood symptoms. Meg highlights the importance of doctors being aware of the early indications of MS and helping patients see this as a chronic condition that can, in part, be treated with lifestyle changes and staying active. She also emphasizes the need for more affordable access to the latest treatments.  Meg explains, "Oh, yes. It is a chronic condition. What annoys me is that in the media, it's often treated as a fatal condition. And for most of us, for those who don't have the progressive form, it fortunately is not. It doesn't have to be. The diagnosis is not necessarily the end of the world." "There are good treatments coming down the road. The key to it is keeping yourself active and keeping your own body as healthy as you can. Eating well, staying active, keeping your weight manageable, keeping your diet manageable. Don't do stupi

Kinsey Fabrizio, now President of the Consumer Technology Association,  highlights many digital health innovations in the women's health arena showcased in the recent CES 2024 event.  A recent CTA study found that 45% of women currently use digital health solutions, and 75% of women in the survey face challenges obtaining healthcare services. With oversight from the FDA, medical devices and wearables are becoming increasingly accurate. With the addition of AI, they are expected to play a role in improving healthcare outcomes and access.   Kinsey explains, "CTA is a nonprofit trade association, and we represent the entire consumer technology industry. And a big part of that is digital health. We have members who are digital health companies, and we strive to help advance the industry for them. We do that through policy, research, and standards development. We're an ANSI-Accredited Standards organization, and through different events, we convene the industry together." "We saw a lot of really exciting innovati

Dahlia Attia-King, CEO of Panacea, is bringing whole exome sequencing to a broader audience and promoting the value of this data for disease prevention and making smarter lifestyle choices. She highlights the differences between whole exome sequencing and whole genome sequencing, noting that whole exome sequencing can be conducted more cost-effectively and provide information about the genes most likely to impact health.   Dahlia explains, "These two barriers, the physicians and the insurers, are sometimes big barriers to accessing clinical genetic testing for people, even those who need it and those who fit the current guidelines. We aim to bypass those barriers and partner with very skilled CLIA/CAP certified laboratories. We partner with trained clinical genetic counselors. We partner with physicians who understand how to utilize genetic testing, and we bring those services collectively in one very simple, user-friendly experience so that no one who wants genetic testing will struggle to get it." "We do

Steven Lee, Co-Founder and CEO of Ianacare, is in the business of supporting caregivers by working with employers, health plans, and providers to offer services that patients and their families need. Effective hospital-at-home and home non-clinical care models show a reduction in hospital readmission and cost of care. This care navigator approach allows caregivers to keep patients in their homes and reduces employee absenteeism. Working with partners, Ianacare has applied to be an approved provider in the new CMS program GUIDE, the Guiding and Improved Dementia Experience program, to expand the application of this model. Steven explains, "This has become really critical. For one reason, good caregiving in the home keeps patients in the home and out of institutions. And that's a win-win-win for everybody. Patients prefer being in the familiar surroundings of their home. We all would prefer to age in our own homes. It's cheaper for the healthcare system. Every inpatient admission or ER visit prevented by a fami

Stella Vnook, the Founder and President, and Bill Breitenbach, CEO of Oral Bio Life, talk about the prevalence and causes of periodontal disease and the limitations of current treatments. The Oral Bio Life PiezoGEL technology has shown effective removal of plaque and treatment of bacteria on teeth and regenerating bone for a long-term solution. Periodontal disease contributes to inflammation and infection and is showing links to other health conditions like cancer, heart disease, diabetes, and Alzheimer's disease. In addition to human trials, success is seen in trials with veterinarians to regenerate bone in dogs.  Stella Vnook elaborates, "Dentists can identify the early warning signs, but in addition to oral hygiene, we also found, and it's supported by data, there are some people who are predisposed to just having issues with their gums and/or periodontal disease. There are genetic implications, and there are people that have comorbidities. The goal is to remove the plaque and the bacteria film. But the pr

Chuck Rinker, CEO of PRSONAS, sees the next-generation workforce of digital healthcare components as digital personalities and avatars that will act as patient advocates and improve the communications between patients and clinicians. With an emphasis on building trust and showing empathy, these digital tools help gather accurate information and break down language and cultural barriers. Avatars can be customized for locations like hospital lobbies and purposes like clinical trial recruitment. With a background in game programming, Chuck brings a deep knowledge of how the emotional bond between gamers and avatars can be applied to building more robust patient engagement. Chuck explains, "Since technology has been predominant in the healthcare space, we've always had to teach people how to use technology, and the barrier is communication. So, we've said, well, let's just take a different approach. We're not trying to recreate humans, and we're not trying to replace humans. We're just trying to teach all this t

Cody Shandraw, President and Co-Founder of Healing Realty Trust, aims to provide robust mental and behavioral health treatment facilities. The lack of infrastructure has been a significant hurdle for expanding the commercialization of drugs that require longer in-office visits and space to accommodate the needs of patients undergoing treatments. The emerging field of psychedelics for treating neurological conditions like PTSD requires clinicians to understand the physical requirements for treatment facilities to provide privacy and comfort during the extended time necessary for many of these treatments.  Cody explains, "In 2020, it was a really interesting stat that I was made aware of at one of the conferences down here in Miami. It was around a drug called Spravato, which is an intranasal ketamine drug. And they were very excited about the launch. It was in development for quite some time, and unfortunately, it didn't commercialize, I think, to their expectations. I asked one of the drug reps down here in

Fengru Lin, Co-Founder and CEO of TurtleTree, is applying precision fermentation technology to produce high-value ingredients for food and beverages without the need for animals. This biotech company's first goal is to expand the production of lactoferrin, a protein found in small quantities in milk that has been shown to promote gut health and immunity. Finding a scalable way to produce lactoferrin will lead to adding this iron-binding element to plant-based milks and energy drinks.   Fengru explains, "A couple of years ago, I was learning how to make cheese as a hobby. It was quite a fanatic period of time. I went up to Vermont from Singapore for a couple of weeks to learn how to make cheese and I wanted to replicate this whole process back in Singapore. But in Singapore, we have no access to cows, we have no access to raw, fresh milk. So, I had to go down to Indonesia and Thailand to look for milk. In this journey, I was exposed to a lot of challenges around the dairy industry, things like contract farmin

Christian Lillis, Co-Founder and CEO of the Peggy Lillis Foundation is a patient advocate in the fight against C. diff infection. Clostridium difficile is an opportunistic infection of the gut that often occurs after taking antibiotics and can lead to life-threatening complications. Christian shares his personal story of losing his mother to C. diff and highlights the progress made in raising awareness and the development of new treatments for the infection. The Peggy Lillis Foundation emphasizes the importance of patient voices in shaping infectious disease policies and research and the need for community support to fight C. diff and other preventable infectious diseases. Christian explains, "Last time we did our most recent C. diff awareness month campaign in November, it was our most successful one yet. We reached around 23 million people through a mix of earned, print, video, and podcast media and a strong social media campaign. We also had it bolstered by media partnerships with Contagion Live and Pharm

Paul Hickey, President and CEO of ReShape Lifesciences, discusses the company's role in the weight loss industry. The ReShape Lap-Band® and the new ReShape Lap-Band® 2.0 FLEX are tested surgical options for weight loss and weight management and are now being joined in the market by GLP-1 agonists such as Wegovy and Ozempic. While these options are effective for different individuals, Paul emphasizes the importance of a comprehensive approach that includes diet and lifestyle changes. As a society, we have normalized obesity, and more education is needed to inform those with obesity about these effective solutions.  Paul explains, "The weight loss drugs people have been hearing about are the first step for weight loss, along with working with your physician and their team. And then as you move down, the more aggressive treatment, the ReShape products, and in particular the Lap-Band®, which has been around for over 20 years, is the first surgical step performed by a laparoscopic surgeon that goes in and helps