Out of Patients with Matthew Zachary

On the show today, I'm so thrilled to welcome live in-studio Alison Silberman, CEO at Stupid Cancer (my old job, as you may know), and Shannon Wyant, a fellow AYA cancer survivor and sitting committee member of the Stupid Cancer Board of Directors (also my old job as you may know.) The best conversations are those without an agenda that manifest from their own chemistry and organic magic. And what you're about to hear is no exception. So prepare your Wayback machine and your magic eight ball for a "wikipedic" throwback to how the sausage was — and continues to be made — for the largest young adult support community in the world. This one's for Annie Goodman, Jason Mlot, Chad Whitman, Ali Powers, Emily Morrison, Erica Paul, and Lauren Scott.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, 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.

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 ONEAndre Harris is a 32-year-old Ph.D. student residing in Houston, Texas. He’s currently working on a doctorate in social work. Andre is the first graduate student in his family to make this academic achievement, but his road to higher education was not a smooth one. Andre has lived with chronic pain since he was a child. From strokes to pain crises, he has lived with a disease that can interrupt the flow of life. These symptoms are due to sickle cell disease (SCD), a group of genetic blood conditions that affect about 100,000 people in the U.S. In this episode, Andre talks about his earliest memories of living with SCD and the needs of the most vulnerable SCD patients. Dr. Lewis Hsu, a pediatric hematologist at the University Of Illinois Chicago and the Sickle Cell Disease Association of America, explains what SCD is and how it works. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

As an epilogue to the pilot episode of Not Expecting, Matthew welcomes Ann Scalia (Director, Clinical Education for Alliance RX Walgreens Pharmacy) and Ashley McClure-Wolfson (Manager or Clinical Program Development Walgreens) for an in-person roundtable conversation and recap discussion. What is "Right to Parenthood in 2024?" What's new in the world of oncofertility? How does our understanding of gender identity factor into policies and programs? All this and more are coming up.Thank you, Walgreens, for sponsoring this episodeSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The Centers for Disease Control and Prevention estimate that nearly one in every eight couples struggles to conceive. Even today, infertility remains a societal taboo to the extent that more than 60% of prospective mothers said they hid their infertility from family and friends, and nearly half didn't even tell their mothers. All people challenged in their family-building journey should be empowered by knowledge, supported by the community, and offered an equitable and affordable path to biological parenthood.Not Expecting is a single-episode pilot audio series about the invisible heroes who—united by advocacy and inspired to act— have fought for better treatment, forced the medical establishment to evolve, destigmatized cultural perceptions, and pressured lawmakers across the country to guarantee rights to treat the illness preventing parenthood.Thank you Walgreens for sponsoring this miniseries.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Testing Our Patients is a limited discussion series about how the sausage is made when bringing life-saving diagnostic tests and breakthrough medicines to cancer patients in desperate need of hope. In this episode, we welcome Dr.Rafael Fonseca (Chief Innovation Officer at Mayo Clinic in Arizona) and Dr.Ola Landgren (Chief of the Myeloma Program and the Experimental Therapeutics Program at Sylvester Comprehensive Cancer Center at the University of Miami) in an examination of the role that doctors have advocating for MRD testing and expanding the role of diagnostics in cancer treatments.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Testing Our Patients is a limited discussion series about how the sausage is made when bringing life-saving diagnostic tests and breakthrough medicines to cancer patients in desperate need of hope. In this episode, we welcome Allison Silverman, CEO of Stupid Cancer, and Lizette Figueroa, Senior Director of Education & Support at The Leukemia & Lymphoma Society, to discuss their work as patient advocates to get MRD testing the patients who need most. Diverse schools of thought often collide between the risk/reward of rushing approvals too soon vs. the patient advocates who decry, "What's taking so long? We just want to live."See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Finding your voice while navigating a cancer diagnosis is not always easy, but self-advocacy can be a game changer. Advocating for education, research, and funding can drastically change outcomes, and often, it is the voices of those who have experienced health disparities first-hand that impact institutional change. Follow the stories of Montessa Lee, Rayanne Lehman, and Maida Mangiameli as they share moments of strength, wisdom, and advocacy from their journeys with Small Cell Lung Cancer. While there is still no cure for SCLC, there are new screenings and treatments and new reasons to be hopeful.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

“Get your affairs in order” was the advice from one ER doctor to Rayanne Lehman upon seeing her chest X-Ray. That was 4 years ago. When Maida Mangiameli received her Small Cell Lung Cancer diagnosis she wanted to live to know her newborn grandchild and that child is now 6 years old. And for patient Montessa Lee, her Small Cell Lung Cancer (SCLC) diagnosis 16 years ago has led her to a lifetime of advocacy work for lung cancer research, funding and education along with a commitment to being a voice for the voiceless. These lung cancer success stories are not only hopeful but through their journeys, these three patients and their caregivers have gathered a wealth of information and insight to share with others.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this series finale, we meet Maimah Karmo, President and CEO of the Tigerlily Foundation, and learn about her journey to end disparities for young breast cancer patients of color. If you like this series, be sure to subscribe, leave a rating a review, share on social media, and please tell your community to check it out.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode, we meet breast cancer advocates and users of #BCSM, Liza Bernstein, Anne Marie Mercurio, Christine Hodgdon, and Julia Maues. We find out how they got involved in #BCSM and how they utilized the hashtag to further their advocacy. If you like this series, be sure to subscribe, leave a rating, a review, share on social media, and please tell your community to check it outSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Breast Cancer Social Media (#BCSM) is an online community dedicated to empowering those affected by breast cancer. #BCSM began in 2011 as a conversation on Twitter and has grown into a world of support, guidance, and reliable information. In this episode, we meet breast cancer survivors and co-moderators of #BCSM, Alicia Staley and Jody Schoger. We also find out how Dr. Deanna Attai got involved in the online patient community.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The fight for equitable healthcare goes to Congress. Plus, we meet the next generation of breast cancer activists. Relevant Resources: Leslie’s Week METAvivor - Political advocacy work  Tigerlily Foundation - Political Advocacy WorkTigerlily Foundation - RAISESee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Because of years of being delayed, dismissed, and denied, metastatic patients have had to become the experts in their own care. With the help of doctors and researchers, these patients are now changing the healthcare system from the inside out. Relevant Resources:Tigerlily Foundation - Barriers ToolkitStorm Riders Network - Christine’s Database for Clinical TrialsThe BECOME Project - Stephanie Walker’s Study Trials of Color - Sharon Riveria-Sanchez’s OrgMETAvivor - Research - Exciting MBC research made possible by METAvivor grantsSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

For decades, only one type of patient has been represented in the breast cancer awareness movement. In this episode, we learn the consequences of this representation gap and meet patients who are flipping the script.Relevant Resources: METAvivor - Health Disparities in MBC Tigerlily Foundation - Barriers ToolkitTigerlily Foundation - My LifeShonte Drakeford - My Life, My Legacy  See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Following the 2023 Healthcare Burnout Symposium, returning champion Dr. Gabe Charbonneau (CEO at Medicine Forward) is joined live in the studio with Dr. Todd Otten (COO at Medicine Forward) for a frank and candid conversation about the state of the state as it pertains to their grassroots movement, "Fight Burnout." Primary care is at the epicenter of clinician burnout, and positive change is happening, yet where we are blind is that there is still quite a bit of stigma about burnout. Today's extraordinary human conversation delves deep into the critically understated issues of moral injury, including how Hippocrates-driven providers receive the support and care they need to live their lives while saving lives in the process. Learn more about the Fight Burnout movement at https://www.fightburnout.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The Wayback Machine was in full force today when my buddy Darren Petronella dropped by the studio for an IRL nostalgia-driven, GenX-themed episode about aging gracefully and our modern-day "Get Off My Lawn" grievances about life, the universe, and everything. Darren and I first met while undergraduates at SUNY Binghamton, with a common thread being musical theater nerds. His claim to fame, says me, was his epic rendition of "Corner of the Sky" from Pippin, and who knew all these years later, we'd meet up in person, and it would be like we'd not missed a day in over 30 years. Oh yes, and healthcare shenanigans abound. 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.

The twins are back for another "very special episode" (no — not the one where Arnold gets molested on Diff'rent Strokes or Alex P. Keaton's friend dies) of Out of Patients to celebrate all the things and talk with their Daddy about what 2024 has in store for them. Like what? Well, their forthcoming 14th Birthdays, 8th Grade Graduation, and the start of their Freshman Year of High School! Plus, we talk gratitude, challenges, what it means to be a teenager in 2023, and a little Gen-X fatherhood pride when we talk about their favorite 1970s and 1980s hit songs.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Knownst to me, but unknownst to others, long before the Award-Winning documentary "The Cancer Mavericks: A History of Survivorship" hit podcast feeds, a pilot episode was storyboarded and produced to test the waters with our newly minted production team, helmed by acclaimed executive producer, Steve Lickteig. If all went to plan, we would proceed with the heavy lifting needed to bring this 320-hour, 8-episode history series to life. Suffice it to say, it indeed went to plan.For this pilot episode, the chosen topic would center around a history of cancer throughout the last century's zeitgeist of mainstream film and television. The storyboarding around this pilot would ultimately lay the groundwork for what would become Episode 6 of the final series, titled "Caner Mavericks Goes To Hollywood."So, who better to join host and narrator Matthew Zachary for this exploit of pop culture-meets-healthcare narrative than his mother, Roz Greenweig? A 30-year veteran educator within the NYC public school system (Kindergarten and First Grade,) Roz is also an ardent, veteran, encyclopedic cinephile who holds a Master's Degree in Film History and Film Studies with a concentration in Film Noir.Together, Mother and Son wax poetic on the taboos, the trends, and the trajectory that the cancer narrative took over the past 100 years across scores of films and television series.Thanks to this pilot episode, the project was greenlit to bring to life the groundbreaking, award-winning, and "appointment-listening" documentary The Cancer Mavericks: A History of Survivorship.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today, Matthew welcomes Dr. Aaron Neinstein, Chief Medical Officer at Notable, which is — jargon alert — a leading automation platform for patient engagement and staff workflows. What does that mean? Well, you'll find out from this underachieving Triple board-certified endocrinologist (yes, triple) who received his degree while on a Ski Lift in Montana. You can't make this stuff up. A spirited Diabetes-focused discussion ensues, tackling everything from patient trust, access to the latest and greatest gizmos and medications, and whether AI will indeed become Skynet and kill us all. 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.

Once again, the SUNY Binghamton alumni network bestows upon us an incredible guest more than worthy of the hot seat. Dr. Adam Harris is a self-proclaimed "reluctant medical practitioner" who accidentally found himself proficient in all the right classes only to realize, "Why not?" Now serving as Clinical Assistant Professor at the Department of Medicine at NYU Grossman School of Medicine and Senior Director of Strategy and Operations at Oscar Health, he's become somewhat of a unicorn with perspectives from all sides of healthcare. Beyond all things SUNY Binghamton, they discuss how social media helped and ruined everything, patient empathy and trust, the role of today's physician in "Burnout land," and when and if insurance will ever get it right.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The best way to describe Dr. Aditi U Joshi would be a "Telehealth Whisperer" who comes to the party with a storied history as an emergency medicine physician and former advisor to such juggernauts as the American Medical Association and Weight Watchers. The author of "Telehealth Success: How to Thrive in the New Age of Remote Care," Dr. Joshi takes us on a historical tour of the tools that underlie successful telehealth programs and practices and how everyone can implement them, including a hot take on where telehealth sometimes goes wrong and where it more likely goes right for companies, health systems, providers, and the ultimate end user, the patient.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What do you get when you cross a professional wrestler, small business coffee company executive, nonprofit consultant, and rare cancer? Well, that would be the uniquely talented and inspiring unicorn that is Sean Wachter, who joined Matthew live in-studio for one hell of a conversation about how they're both somehow still alive. Well, that and much more, including a total 80s WWF throwback session to WrestleMania, a debate over Randy "Macho Man" Savage vs "Rowdy" Roddy Piper, and how Galaxy Quest got it right with "Never give up. Never surrender." Plus a healthy dose of nonprofit therapy and survivor guilt.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In the Spring of 2023, Matthew had the pleasure of speaking at an event hosted by Quest Analytics, a fabulous company whose mission has been to improve provider network management and help people across America receive the information and care they deserve. In today's episode, Quests's CEO, Steve Levin, joins Matthew to talk about what "access" really means and how the concept of "urban pre-planning" is getting reinvented at all cultural and socioeconomic levels to ensure those hypertargeted communities are provided with the tailored healthcare infrastructure they deserve.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Owen Muir is an Anna Freud National Centre for Children and Families-trained psychiatrist and official Mentalizing Treatment Supervisor. He is the coauthor of Adolescent Suicide and Self Injury: Mentalizing Theory and Treatment, a dual board-certified physician, with ABPN certification in general and child and adolescent psychiatry and a practicing physician in New York. But beyond the LinkedIn profile, he's a badass "inside baseball" advocate railing against the insurance industry for it's nonsensical malfeasance in the way it treats patients. His infamous newsletter, the "Frontier Psyciatrist's Substack" is appointment reading by anyone wishing to take an active role in fixing America's broken healthcare system.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Melissa Berry, aka The Cancer Fashionista, is a Stage 1 Triple Negative Breast Cancer. She is now the founder of Cancer Fashionista (a fashion, beauty, and lifestyle platform for the breast cancer community), the host of the "Dear Cancer, I'm Beautiful" podcast, and the board chair for the Triple Negative Breast Cancer Foundation. Today, she's a trusted leader, outspoken advocate, and notable influencer recognized for her outstanding support of women.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 episode, Matthew welcomes one of his nearest and dearest friends, Geralyn Lucas, whom he met in the earliest days of the nascent adolescent and young adult (AYA) cancer movement circa 2004. Geralyn, a storied American journalist and television producer, had only recently survived breast cancer and released the infamously notorious book, "Why I Wore Lipstick To My Mastectomy," which was adapted shortly after into a Lifetime television show soon after. As one of the first published authors who unapologetically interjected humor and snark into her story, Geralyn solidified herself as an authentic origin story influencer of AYA culture and paved the way for others to usher un a new era of patient empowerment and cancer survivorship.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In 2021, OffScrip Health produced The Cancer Mavericks: A History of Survivorship, an award-winning 8-part limited documentary series about the people and not the disease.So, if you're a narrative history podcast junkie, listen to Episode One of The Cancer Mavericks right here on the Out of Patients feed today. Learn how the Black Panthers became breast cancer advocates and how a $250,000 full-page ad in the NY Times shamed President Nixon into giving a damn about cancer. And how 50 years of social justice movements have brought us into today's conversations about healthcare, income inequality, and race relations.Apple Podcastshttps://podcasts.apple.com/us/podcast/the-cancer-mavericks-a-history-of-survivorship/id1566467305Spotifyhttps://open.spotify.com/show/1Viodbe0rNxET08IyCiDmqAJGnPHsqDDO4xBsrc0cJSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

We are hijacking today's episode of Out of Patients to bring you the pilot episode of "Cancer Coaster," a fresh new series from OffScrip Health focused on the many ups and downs of the emotional journey cancer patients, survivors, and caregivers face. For this particular pilot, we're focusing specifically on Chronic Lymphocytic Leukemia with our partner, The CLL Society, and their CEO — and special guest — Carly Boos. The average CLL patient has extreme highs and lows during their disease, from the lows of diagnosis, relapse, and the unknowns of watchful waiting to the highs of long-term stability and MRD negativity. See what Carly and OffScrip Health have in store for this groundbreaking series that will interview patients and their caregivers to talk about their emotions during their CLL journey, focusing on their feelings and where they went for support and resources.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The SUNY Binghamton alumni network is rife with incredible humans who are changing the world one day at a time. On the show today, I'm proud to welcome Tom Heymann, President and CEO at Sepsis Alliance, the nation's leading infection prevention and Sepsis education and advocacy organization.While there may be obvious parallels between oncology and Sepsis (e.g., misdiagnosis, access to care, patient advocacy), the similarities end quite abruptly, as you'll hear on today's show. My only experience with Sepsis was when Tony Soprano got shot during Season Six, Episode Two of The Sopranos, "Join The Club."While I am grateful not to have dealt with a Sepsis diagnosis personally or in my family, Tom brought a Plus One in the form of Sepsis-survivor Bennett Kleinberg, who regains his comedy of terrors and how Sepsis Alliance became the support community he never knew he needed.Please enjoy a very serious show with a surprising sense of humor.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sometimes LinkedIn DMs come in handy, as this is the case with Dr. Paul Toomey. A cold outreach became a spot on the show when this Board-certified surgical oncologist — and biomedical engineer by trade — began to share his remarkable story with me. Paul is the CEO of Ring of Hires, which claims to hold the mantle of "The Zillow of Healthcare." Paul's hill to die on is helping rural private practices with their staffing challenges to ensure office culture meets the needs of their patients. He's got a compelling and highly relevant narrative to share, so stick around and 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.