Out of Patients with Matthew Zachary

Today on the show, we talk to powerhouse couple David and Robin Dubin, who founded Alive and Kickn to advocate for those with the Lynch gene. At age 29, Dave was diagnosed with colon cancer and Lynch Syndrome. Few have heard of it, but Dave and Robin are trying to change that. Because Lynch is a genetic pre-condition to cancer that affects 1 out of every 279 people, and most people don’t even know they have it. Dave and Robin talk about survivorship, pre-vivorship, and the importance of genetic testing.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On the show today, I'm thrilled to welcome – LIVE IN STUDIO — Liz Cormier-May, CEO of Mammogen, and Marty Keiser, CEO at IV Bioholdings. It's hard to blend funny, entertaining wit with healthcare jargon like diagnostics, market access, go-to-market strategy, etc. And yet, somehow, we did it. The process is gnarly and ridiculous, but now more than ever, it's actually possible to NOT GET CANCER because of much more accessible and affordable diagnostics. Some of them are free; some are even over the counter. But getting into the hands of doctors or retail consumers is a whole other story, let alone issues with the FDA and safety. Well, we cut through all that crap and get to the brass taxes of how the only real thing moving the needle is consumers who vote with their wallets.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On today's show, we welcome one of the most influential human beings of my career: Dan Pallotta, champion of charity and the entire nonprofit business sector. Dan's take on how we as a culture think about charity the wrong way planted a bedrock philosophy in my head for how I was going to grow and lead Stupid Cancer to scalable success without the pitfalls of donors complaining about "Overhead." "I'll give you money but don't spend it on electricity. Only programs." Dan's much-ballyhooed book "Uncharitable: How Restraints on Nonprofits Undermine Their Potential" has a new, more digestible School House Rock version called "The Everyday Philanthropist" that I encourage every single nonprofit Board member, staff member, and donor to read immediately. My favorite quote from Dan is this: "Human. Kind. Be Both." Dan's Latest Book: The Everyday Philanthropist. Dan's TED Talk: The Way We Talk About Charity is Dead WrongSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today's show is not a "very special episode" of Different Strokes, Facts of Life, Family Ties, Webster, or Blossom, BUT it is a "very special episode" nonetheless. Jane Sarasohn-Kahn has been a friend, a teacher, a mentor, a sherpa, a conscience, and a big sister to me for over 15 years. I mean it when I say she is as close to her biological family as you can get without the Jerry Springer sibling DNA test. My origin story of becoming a cancer advocate diverged in 2004 between the nonprofit and the nascent and emerging digital health startup sectors. And Jane was right there to welcome me — the freshman newcomer and token "pre-advocate" cancer patient — equipped with the inflatable swimmies I needed to incubate in that space. Did I mention she is one of the world's foremost health economists with Nostradamus-level power for trend forecasting? She's also an award-winning author, blogger, speaker, thought-leader, and creator of "Health Populi", one of — if not THE most — notable blogs covering the health/care ecosystem as well as the author of her new book, "From Health Consumer to Health Citizen: Health Consuming.” Learn more at https://www.janesarasohnkahn.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Throughout the history of cancer advocacy, there are the advocates who made us and the organizations who made us. And one such organization is the National Comprehensive Cancer Network, which is — for all intents and purposes — the “Good Housekeeping meets Consumer Reports” of all cancer standards of care, best practices, guidelines, and credibility consensus. Joining me on today’s show to speak to all that is my friend Marcie Reeder, Executive Director of the NCCN Foundation, which is their patient-friendly arm that collaborates with scores of nonprofits to make sure their information is trickled down to the patient and caregiver community as a vital support resource. Marcie lost her father to esophageal cancer when she was young. Her public service to advance the narrative and the imperative of access, awareness, and survivorship is a testimony to her passion, character, and the very definition of cancer advocacy. NCCN is an incredible organization that does outstanding work on behalf of millions of people, and I hope this episode shines a light on their impact on the cancer community. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On the show today, the legendary Julie Larson, speaker, educator, psychotherapist, and luminary, legacy young adult cancer advocate. As one of the few people who have been consistently working in the same career profession they went to school for, Julie may consider herself a midwestern gal transplant to the big city but, after more than 15 years in the space, she has more than earned her credibility as one of the early progenitors of the young adult cancer movement. Her first “not so shabby” big stint was to essentially create from scratch the first adolescent and young adult cancer program for CancerCare to give you some perspective. Now, if you don’t know what CancerCare is, we get into it during the show but just know this was a huge deal in the annals of patient advocacy and AYA survivorship programming. I was privileged enough to work with her as that effort was getting built out, and I have watched her rise to literal superstardom in our community. As someone who was “there” before social media became the best thing, then the worst thing, and now a “somewhat tolerable in small doses thing,” “she has a vantage and perspective on how far we’ve come and yet how far we still need to go. From the days of MySpace to today’s shitstorm of COVID, telehealth, and mental health calamity, Julie Larson is the voice you want on the other end of the phone call to help make some sense of the madness. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Elizabeth Woolfe is a veteran nonprofit consultant and unmatched sherpa guide in the business, management, and organizational culture of charity. Full disclosure: Liz also one of my best friends in the world and saved my ass more than a few times serving as strategic counsel to Stupid Cancer during the latter half of my tenure. As of this recording, we pay tribute to the late Cloris Leachman by preparing you for today's "Roll, Roll, Roll in Ze Hay." See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On the show today —> The venerable Craig Lipset, a storied luminary in the annals of clinical trial innovation — and I mean innovation with a Capital I. (None of that lower case crap happening here on my watch) Craig is the Founder of Clinical Innovation Partners and the Co-Founder of Decentralized Trials & Research Alliance (DTRA), and a proud expatriated Long Islander who pronounces Rutgers the proper way and has a penchant for Wegmans. He ticks every box. He's also been at the literal forefront of clinical trial research and development for over 30 years. Warning that the following episode may contain explicit acronyms and an overdose of syllables.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today I talk to LGBT cancer advocate Liz Margolies. For over 30 years, Liz has worked as a psychotherapist with a specialty in cancer, trauma, and sexuality. She’s an OG LGBT rights activist, and when four of her lesbian friends died of ovarian cancer within months of each other, Liz launched the National LGBT Cancer Network. Because the LGBT community not only has a harder time getting treatment but sexual and gender minorities are also at a much higher risk of getting cancer than the general population. Liz explains why. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today on the show, I welcome an extraordinary young woman —> Grace Wethor is a living unicorn of talent and intelligence. Guitarist. Pianist, Trapeze Artist, Figure Skater, Model, Author, TED Speaker — and 6-year survivor of an inoperable brain stem glioma that she was diagnosed with at 13 years old in 2015. Grace is the author of "You're So Lucky" and a new docu-series called "You're So Lucky: The Next Chapter." She joins me to talk about what it's like to have your whole life interrupted at such a young age, and we compare notes against her experiences in the 2010s vs. my eerily similar experiences in the 1990s. Spoiler Alert: We've come pretty far, but we've got a ways to go. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today on the show, I welcome Vikram Bhaskaran and Dr. Rohan Ramakrishna (Chief of Neurological Surgery at Weill Cornell Medicine) live in studio to talk about Roon, their intriguing new cancer navigation platform for patients and caregivers. Roon is personal to Vikram as his whole career shifted from Pinterest executive to caring for his Father when he was diagnosed with ALS. Roon claims to be "the most supportive place online for people navigating complex health conditions, starting with Glioblastoma." so we power-test how that holds up against unmet patient needs. Rohan is only the second neurosurgeon I've had on the show, so, as a brain cancer survivor, I naturally asked him all sorts of pointed questions like, "What's it like to touch someone's brain?" These guys are the real deal with core compassion for empathy in medicine and helping patients in need access what they never knew they needed. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On today's quirky show, I welcome Jen "Jay" Palumbo, an epic human Energizer Bunny who takes a licking and keeps on ticking. Jen is a freelance writer, Forbes contributor, and women's health advocate, specifically for reproductive rights. In a spirited coincidence, it turns out we both went to the same college at the same time, were both Theater people, and have dozens of friends in common. We are ships in the night for sure. As fellow parents of IVF children, we bonded over the current state of the state. And as fellow Binghamton graduates, we bonded over Wegmans, being Theater nerds, and 1990s dorm life in the southern tier. Jen is a true Long Island: loud and proud. Let the hilarity, dark humor, and GenX Therapy begin. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today, I proudly welcome my cancer survivor comrade at arms, Jen Singer. Jen's got the trifecta of "shit happens," having survived cancer, heart failure, and "COVID Classic" back in February of 2020 when no one had any idea what the hell was going on. She is the creator of "How To Be Sick," patient-friendly ebooks called "The Just Diagnosed Guides" to provide the newly diagnosed with the information they really need to know now. Because who actually knows what they need to know when they never knew they needed to know it? She's an outspoken professional despiser of Dr. Google, which I think we could all agree is the worst place to go when bad things happen. And as fellow cancer survivors, we bonded over how the hell we're both still alive all these years later through humor, empathy, and virtual cocktails. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Jonah Comstock is the Editor in Chief of pharmaphorum and a veteran healthcare journalist and reporter. He's been covering this topic even before this topic was a thing to be covered. Throughout his career, he has helped to shape significant narratives about the sector, what matters today, and where he sees progress in the future. Learning from his grandmother, who worked in the printing industry, Jonah's trajectory from Copy Editing Intern to today is an inspiring human time capsule into how the sausage is made. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In today's special bonus episode, Matthew welcomes fellow podcaster and leading Women's Health physician Dr. Mitzi Krockover to the hot seat. Mitzi is the Founding Medical Director of the Iris Cantor UCLA Women's Health Center, a storied entrepreneur, and a thought leader in her sector.She has created a community—nee, a movement—called Beyond The Paper Gown, which includes her acclaimed eponymous podcast, available here on the OffScrip Health Podcast Network. In the wake of the repeal of Roe, we focus on a recent webinar she hosted entitled, "Aftershocks: Unexpected Consequences of the Roe v Wade Decision."See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the vulnerable spaces of what it means to provide care for a loved one. Host Elura Nanos uses her no-BS conversational style to provide a home for the often unspoken thoughts and feelings of the caregiver experience. As a fiercely intelligent and radically compassionate lawyer and media professional, she knows the caregiver path all too well.In our final episode, we continue to expand upon what caregiving looks like through the eyes of two women who have very different, non-traditional experiences for their parents. We examine the emotional side, the mental load, and the educational advocacy needed to sort through the deluge of information that comes with a cancer diagnosis. We are so quick to turn to Google for all of our answers to our medical questions. When Mari Hoffman’s dad was diagnosed with CLL, she found comfort in getting educated. She bonded with her dad through research, and they spent a lot of time together googling the latest CLL information. Mari went on to study genetics and genomics in college at UC Davis, where she is a recent graduate. Our other guest Michelle Stonis, a mom of three and a university professor from California, found the “google rabbit hole” very stressful. She made a conscious choice to stay away from googling until a few days before her mom’s battle with CLL came to an end. Join us for this inspiring conversation from two women in different phases of their lives as they share their very different approaches to caregiving.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the vulnerable spaces of what it means to provide care for a loved one. Host Elura Nanos uses her no-BS conversational style to provide a home for the often unspoken thoughts and feelings of the caregiver experience. As a fiercely intelligent and radically compassionate lawyer and media professional, she knows the caregiver path all too well.In a frank and candid conversation, two devoted husbands share the challenges and rewards of caring for their wives in different stages of Chronic Lymphocytic Leukemia or CLL. Relationships are tough on their best days, but it can add a whole new range of challenges when the person you love is battling cancer. Meet Scott Fuller and Ted Walsh, who talk candidly about their failures and successes as caregivers to their wives who have CLL. Ted Walsh lives in the Raleigh, Durham area of North Carolina and works in the biomedical industry. Ted found out that his wife Laura had CLL just three months before their wedding date. Laura is currently in what's known in the CLL world as the "watch and wait" phase -- often known to folks on the inside as "watch and worry." Our other guest is Scott Fuller from Trophy Club, Texas, where he's the director of golf course maintenance at a country club. Scott has been married for 32 years to his wife Christina, who was diagnosed with CLL in 2018. Christina has recently begun treatment and is participating in a clinical trial at UT Southwestern. Both Scott and Ted are two extraordinary men who are partners in their wives' CLL journey.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the vulnerable spaces of what it means to provide care for a loved one. Host Elura Nanos uses her no-BS conversational style to provide a home for the often unspoken thoughts and feelings of the caregiver experience. As a fiercely intelligent and radically compassionate lawyer and media professional, she knows the caregiver path all too well.This episode discusses the moment of hearing about a loved one’s CLL diagnosis, the daunting task of navigating insurance and the healthcare system, and the necessity of finding and building your support network. Our host, Elura Nanos, talks with Lisa Ferguson, a communications director and mother of two from Huntsville, Alabama, and Erin O’Brien, a project manager from Cincinnati, Ohio. Lisa’s husband and Erin’s mom have CLL. In sharing their stories, they discuss their struggles and challenges and the importance of building your support network. Lisa and Erin begin our conversation as strangers, but they become each other’s “people by the end.”See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickle,” a three-part limited series for patients and caregivers. In each episode, you’ll hear from the people living with SCD and experts who work every day to improve their lives. We’ll learn about the lifelong care, interpersonal relationships, and medical disparities people with SCD live with and what we can do to improve them.EPISODE THREESickle cell disease (SCD) is the most common blood disorder worldwide. About 7 million people have been diagnosed with SCD, and about 100 million people have sickle cell trait. Around 300,000 babies are born with SCD each year. For a rare disease, SCD is quite common, yet patients with SCD are still facing discrimination from funders, researchers, and medical professionals. Still, today, medical professionals are not thoroughly educated on how painful living with SCD can be. In this episode, Joel Helle, vice president of physician services at CVS Health, explains how medical professionals are still behind on SCD awareness. Ahmar Zaidi, SCD advocate and medical director at Agios Pharmaceuticals, talks about his experience as a medical professional working with SCD patients. Our previous guests, Dr. Lewis Hsu, Justina Williams, Dr. Carolyn Rowley, and Andre Harris, talk about the discrimination SCD patients face and how we can help end it.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickle,” a three-part limited series for patients and caregivers. In each episode, you’ll hear from the people living with SCD and experts who work every day to improve their lives. We’ll learn about the lifelong care, interpersonal relationships, and medical disparities people with SCD live with and what we can do to improve them.EPISODE TWOSickle Cell Disease (SCD) is often called an invisible illness; people can't see the excruciating pain. When living with SCD, advocacy becomes crucial as patients inform teachers, employers, medical doctors, and friends of their condition. A pain crisis can put an SCD patient out of work or school or land them in the hospital, where medical professionals are unaware of the severity of their pain. Moving through the world with an invisible illness is a trying task for an already exhausted patient. This is why having a solid support system, either with family or through an organization, is crucial. In this episode, we meet Justina Williams, Patient Engagement Coordinator with Piedmont Health Services and Sickle Cell Agency. She shares her story about how living with SCD has led her to her current role. We also meet Dr. Carolyn Rowley, executive director and founder of Cayenne Wellness Center and Children's Foundation. Cayenne Wellness is a non-profit organization that allocates resources to SCD patients in California. Patients can receive housing and transportation and even have an advocate for them when going to emergency rooms. Dr. Rowley tells the story of her early life with SCD in the 60's and what led her to found the non-profit.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.