In this crossover 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 out. Your voice matters. Tell us your story in your voice and give us your feedback about the series by leaving us a good old-fashioned voicemail at (855) AUDIO66, that’s 855-AUDIO66 (283-4666.) And don’t forget to join the #BCSM weekly tweet chat live every Monday at 9pm/ET on Twitter.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

This episode of Out of Patients features a new segment called The Art of Survivorship (AOS). Today, Matthew takes a trip down memory lane to highlight and recognize two fellow musicians affected by cancer. Prepare to be inspired by Dr. Adam Dachman and the late David M. Bailey in this special episode.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Welcome back to Out of Patients! For months here at OffScrip Media, we’ve been working with breast cancer patient advocate Alicia Staley on a narrative series about how breast cancer patients dared to be the change they wished to see, saw an opportunity to fill a need, and created the Breast Cancer Social Media Community. Now, OffScrip Media is proud to present The #BCSM Podcast. What began in 2011 as a conversation on Twitter has evolved into a global network of patients, caregivers, clinicians, and researchers dedicated to empowering those affected by breast cancer.The next three episodes of Out Of Patients will be crossover episodes from the BCSM podcast. You can listen on their feed as well by searching “Hashtag BCSM podcast”See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this first-ever episode of VAXON, Matthew Zachary and Elura Nanos discuss a very inconvenient snowpocalypse, fake grandmas, Biden’s goal to open K-8 schools, and more!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.

Award-winning hosts and patient advocates Matthew Zachary and Elura Nanos react to the great vaccine rollout of 2021. They’ll sort through the week’s healthcare news and related fuckery as America gets its vax on and shows #COVID19 the door.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On this bonus episode of "Jen Horonjeff is Noncompliant," Jen brings to Matthew Zachary's attention the idea that patients who enroll in clinical trials should more than benefit from the therapeutic aspects of treatment. After all, aren't they essentially helping a private sector on their go-to-market drug approval and commercialization strategy? After all, if you're helping a business make more money, shouldn't you be entitled to some of that sweet, sweet cheddar yourself? Say, perhaps, some equity stake in their growth? Food for thought because inquiring minds want to know.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Mark Lewis is the Director of GI Oncology at Intermountain Healthcare in Salt Lake City. He is also a young adult survivor of pancreatic cancer, a thought leader on #MEDTwitter, and one of the funniest and down-to-earth physicians you’re likely to meet. Motivated by losing his father to cancer, coupled with a genetic predisposition for empathy, his story of “when the doctor gets cancer” preaches the virtues of data and truth. Prepare to find out what happens when Sid the Science Kid meets Dexter’s Lab meets Pickle Rick. Follow Mark on Twitter at @DrMarkLewisSee 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, Bio Entrepreneur Marty Keiser, Founder of IV BioHoldings, LiquidLung, HepGene, and Mammogen. What is a biomarker? Hint - it's not inside a box of Crayola. Biomarkers are aspects of our genes that do so much more than determine our height, eye color, and predisposition to cancer. Diagnostics today can be used to detect earlier, diagnose easier, and treat better. That's what Marty and his entrepreneurial ventures are all about. It's not just making cancer suck less; it's using pioneering diagnostics to make radiation and chemo not just suck less, but perhaps not even be needed at 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.

On the show today: President and CEO of the Alliance for Health Policy, Sarah Dash. AHP —or “The Alliance” — is a nonpartisan nonprofit dedicated to informing policymakers on critical health policy issues. I know it sounds wonky but it’s actually awesome because they are the good kind of “how the sausage is made.” After all, industry puts too much burden on patients to navigate the healthcare system. Listen in as we geek out over covalent bonds, how 20-something staffers run the country and the possibility of “un-geeking” health policy for the layperson.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

HUGE show today with Dr. Lisa Richardson, Division Director, Cancer Prevention and Control at the CDC. As the first guest I've ever had on the show with a BS in Zoology, Lisa is the real deal. She's down to earth, speaks "person" and "science" simultaneously, and has been a 25+-year first-hand witness to the staggering revolution and evolution of cancer care across these United States. In this rapid-fire "no stupid questions" episode, Lisa and I talk about everything from simulated humans, plummeting screenings, mRNA, and telehealth, to 1990s’-era patient activism, the rise of survivorship, cancer, and COVID — and the prospect of 2021 "Vaccine Parties" being the exact opposite of pox parties. Hilarity ensues. 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 Linda Bohannon, President of The Cancer Support Community, the largest nonprofit provider of social and emotional support for anyone touched by cancer. An oncology nurse by trade, Linda and I go back to a time long before Stupid Cancer. In the mid-2000s, she was running "Advocacy Relations" for Lilly Oncology during the official US launch of Lilly Oncology On Canvas, which was a groundbreaking effort for its time that you will hear more about in our conversation. Now, The Cancer Support Community itself has a 40-year backstory worth appreciating, and Linda takes us down that rabbit hole, including her stint as a high school student volunteering for the organization she would one day lead. We also talk about the current state of nursing, including COVID's impact on the profession, the hope for a turnaround in the nursing shortage, the struggles of carrying the emotional burden of work home with you, rounded out with nonprofit leadership lifehacks during a global pandemic. 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.

I've got a treat for you today because my buddy Steve Goodman here with live in-studio. He is sitting about nine feet away, chomping at the bit to chat about all the shared things we find aggrieved, inane, downright agitating, and yet possibly hopeful. The man's a mensch, first and foremost. He's also a 30-year veteran TV producer and cybernetically engaged 1980's trivia junkie. For this episode, he is here as the big brother and caregiver to his sister, the late Annie Goodman, my co-host on The Stupid Cancer Show from 2013-2015. After we rant on about what the hell a lower-third is, we get real and talk about love, hope, strength, loss, grief, perseverance, Annie's footprint, her impact, her legacy, and the sibling dynamic through thick and thin. Some of you may have heard Annie's voice on the air with me back in the day. She was one of the kindest, fiercest, and most inspiring human beings I have ever known. Her loss was tragic, unnecessary, and will forever remain a permanent bookmark of grief for our community and for me. Please enjoy this tribute to my dear friend and partner-in-crime in the young adult cancer movement, the late Annie Goodman.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.

Across the years running Stupid Cancer, I can’t tell you how many times I was approached by other young adult chronic disease patients and communities asking if we’d ever think of franchising the brand. You know – Stupid Lupis. Stupid Fibro. Stupid MS. Stupid Type 1. You get the point. We all need a community of our peers who — as we say — “get it” because they’ve already “got it” — a community where there are no judgments and no stigma. Well, while there may not be a “Stupid Endometriosis,” Melissa Boudreau is as close as it gets with her podcast, “The Cycle” — and she joins me today for a 101 breakdown on the disease. Melissa was a C-Suite marketing professional whose young life was interrupted, to say the least, with misdiagnosis after misdiagnosis and an ever-increasing sense of fear and isolation that forever changed her formidable years. No one ever asks to become an expert on a disease they didn’t ask for, but Melissa is a genuine voice for the 1 in 10 women worldwide who have Endometriosis. Enjoy the showSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Just when I thought I was the only 20-something with cancer adrift in the 1990s with nary a support group or a cancer buddy, along came an intro to my friend and mentor, Dr. Julia Rowland. Widely recognized as an international scholar and foremost leader in the psychosocial aspects of cancer care broadly—and survivorship specifically—it cannot be understated how seminal she has been working on the front lines of early survivorship research since the passage of the National Cancer Act of 1971. Without her seminal work and influential leadership across the past 40+ years, today’s narrative on quality of life, fertility rights, navigation, decision making, access to care, mental health, and more might not exist. As the first director of the “newly christened in 1996” Office of Cancer Survivorship for the Divison of Cancer Control and Population Science at the National Cancer Institute, she has been working on behalf of millions of patients, survivors, and caregivers to improve lives. And her role as a Board Member of The National Coalition for Cancer Survivorship has only amplified her voice and her influence.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, another epic DeLorean throwback to the past episode with Halle Tecco, an origin story convened during the heyday of LIVESTRONG and born of a shared desire to make cancer suck less. Aside from being one of the most ambitious, talented, relentless, and startup junkie-ist(?) actual innovators, I know — and besides the FOMO I have from whatever it still means to have a blue checkmark on Twitter — Halle has consistently been at the forefront of “what’s next” at the intersections of patient advocacy, health tech, and startup culture. And while her BS, MPH, and MBA may be great acronyms attached to her credentials, her real superhero power is being an inner social justice warrior while assembling incredible teams, and roosting on the observation deck manifesting actual progress you can see. Among many other things, we focus on her latest venture, Natalist – borne of pure passion and her own condition. Beyond swapping war stories between two IVF parents and the perhaps ill-conceived notion of the cost/benefit around parenting, there’s talk of copper landlines, Friendster, and while none of us knew what was in store for when we met in the mid-2000s, we all knew we would do it together as advocates.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

I’ve never said the words “Cancer Nerd and Google Scholar” in succession before, but that only partially describes the epicness of my guest today, one Liz Salmi — self-proclaimed “Citizen Scientist” and “Professional Medical Nerd.” — and I attest that both of these are appropriate, accurate and deserved. Diagnosed with brain cancer at 29 and forced down a rabbit hole of a whole bunch of other horrible shit, Liz became the accidental advocate we needed when the Interweb was just becoming the Internet, and when the online support communities we often take for granted barely existed. Her self-made background in digital communications came in very handy when she realized her higher purpose in becoming a human Babelfish capable of helping clinicians and academics speak “patient” in understandable layperson language. She is also a co-founder of the #BTSM community on Twitter, inspired by the patients and researchers who had come together for the #BCSM tweet chats in 2011. She’s a force, the hero nerd we deserve, and, man, does she love her patient portals (said no one ever but her). Join me in also celebrating her 12th brain cancerversay 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.

“What do you do with the mad that you feel?” — One of the more definitive quotes from the definitive Mr. Rogers. For my guest today, David Richman, the choice he made after losing his sister to cancer was to turn pain into passion, lace-up, and in true Forrest Gump fashion, JUST START RUNNING. 85 miles between Cancun and Tulum in Mexico. 104 miles up the Pacific Coast Highway. 50 Iron Man Triathlons. And then an introspective search for similar and familiar voices to learn and heal from that turned into a 5,000-mile bicycle tour from California to Florida to New York City. I feel even more out of shape just saying those words into the microphone. David’s self-discovery journey brought him comfort, closure, and common threads, and his new book, “Cycle of Lives,” is proof that grief, loss, and bereavement can be opportunities you never expected to have. Prepare to be inspired 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.

On the show today, Alan Balch, CEO at the Patient Advocate Foundation and the National Patient Advocate Foundation. After we reconcile that Alan is one of the few people actually doing what they studied in college, and without triggering his inner political economist, we talk about the fundamental question: Why do patient advocate groups even need to exist in the first place? After all, if they did what they’re supposed to do, there wouldn’t even be a need. But there is. When we say the words “the system,” it always implies an ominous, immovable, intractable and unwieldy, monolith. Is “the system” everything we think? A consumer supply-chain funnel of supply-only mechanics that no one person ever desires to become part of? Seriously, who can’t wait to get chemo one day and fight with their insurance company? Who? I’ll wait. Alan and I go on to deconstruct the phrase “healthcare is a right,” banter about the forensic insanity behind how their case management and financial assistance mechanics work on behalf of millions. Also, who stands to profit in some magical unicorn world where every cancer patient is guaranteed protections to ensure they get to determine their own outcomes without dealing with FINANCIAL TOXICITY? 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, a luminary in the annals of cancer advocacy, the one, and only Gwen Darien. While she may be the EVP for Patient Advocacy at the National Patient Advocate Foundation and the Patient Advocate Foundation, her story runs so much deeper; 30 years into the past actually where a young, passionate student of photography and contemporary art had her life interrupted with a cancer diagnosis and found herself on a different path, one born of her condition but not one to define her identity. Gwen is the creative force behind not one but two groundbreaking cancer magazines, MAMM, a women's magazine for anyone whose life has been affected by breast or reproductive cancers, and CR Magazine, the official publication of the American Association of Cancer Research. No small doings here. Throughout the course of our conversation, I make continued reference to a recent commentary she published with the National Academy of Medicine about her life's work in three chapters. There will be a link in the episode description to check it out. Gwen has been a hero of mine and a source of inspiration who has shown me how to truly make the most of the time that has been given to us. 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, I welcome one of my advocate heroes, Erin Zammett-Ruddy, a young adult cancer survivor I met during the LIVESTRONG days in the early 2000s. She may have barely crossed the 5-year survivor finish line (that’s what we called it back then), but she was — and still is — a force to be reckoned with. She was a “big-time big city” magazine journalist writing for Glamour when a random asymptomatic diagnosis of Chronic Myelogenous Leukemia changed everything. She broke the mold and went public — something considered shocking for the time — and began a now legendary and award-winning column entitled “Life with Cancer" — making her one of the first media cancerlebrities of all time. There’s so much to unpack with Erin, the least of things her choice to temporarily quit chemo to become a biological mom, confronting her sister’s cancer diagnosis two years after her own, maintaining her career, speaking all over the world, raising a shit ton of money for charity — you get the picture. Now a happily thriving 40-something raising three kids and married to the same man who stuck with her during the dark days, Erin’s still here and kicking more ass than ever with her new book, “The Little Book of Life Skills: Deal With Dinner, Manage Your Email, Make a Graceful Exit, and 152 other Expert Tricks". 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, I welcome two very inspirational guests. Fard Johnmar is a digital health innovator I met in 2005 before “The Internet” was a thing. He was ahead of his time then, and he’s ahead of his time 15 years later. And Denise Pines is truly a force to be reckoned with. Here come lots of well-deserved syllables: President of the Medical Board of California, social justice warrior, award-winning documentary film producer, Founder of WisePause, and the energy behind the FemAging Project, which is the subject of today’s show. Does aging suck? Or is it an opportunity? What does “Aging Well” mean? How do we know what to expect when we can’t possibly know when we’re expecting to turn 40? 50? 60? What role does peer-to-peer lifehackery play to help women navigate this part of their lives with support, dignity, and style? This is FemTech in real-time, and it’s helping to specifically raise the voices and the profiles of older women of color, a generally overlooked group in innovation research, investment, and development. From the nice-to-have to the need-to-have, it’s less about dressing for success as it is to dress for the body you have now. And YES, I just said that whilst staring at my dad bod. 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’s show is a little different. My guest, Michelle Begina, is a financial advisor, speaker, author, and — at least in my own opinion — is a money therapist. Certainly, one of the more hybrid experts I’ve had the privilege of speaking with. With a great deal of intentional vulnerability and discomfort on my part, we talk about money. It doesn’t just make the world go ‘round; it’s a topic that unites everyone and — like math — is a universal language where judgment, stigma, guilt, and the forces of good and evil duke it out on a day to day basis. In the interest of channeling my fellow expatriated nonprofit founders and executives who went into the private sector to “earn a living,” there’s a lot to unpack there — and I am not shy about sharing my own personal sentiments on entrepreneurship, philanthropy, and guilt. The NPO business model is so flawed, it’s almost designed to fail, and COVID made that more apparent than ever. I also don’t live my life to be the richest guy in the graveyard and hedge my entire political belief system on the single-voter issue factor of our time — the “401k”. Life’s too short. So from “financial psychology” to “your money story” to “fiscal script” to the emotional weight and mental health issues surrounding leadership and just trying to get by in life, I hope you enjoy this alternate but related universe episode of Out Of Patients with Michelle Begina. 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, Dave Bjork, self-proclaimed Research Evangelist, young adult lung cancer survivor, and champion of the cause of “direct-to-research” philanthropy. What does that mean Well, here’s what I think it means. It’s almost too easy to donate and support cancer research, but it’s often a giant cauldron into which you throw your money and never know where it winds up. Cue the black and white informercial — “There’s got to be a better way!” How can I know where my research funding goes? Can I just avoid the middleman and donate to one specific doctor for a more immediate and tangible impact? I also learned that the actual process of research funding itself is insanely stupid and ridiculously antiquated. Anyone whose written a grant with a glass of Merlot knows what I’m talking about. Also — does the life sciences sector have a bad rap? All this and more on today’s episode 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.

Throughout the history of cancer advocacy, there 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 and 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 in 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.

Today’s a different kind of show. Not quite the “softer side of Sears,” but perhaps a more introspective look beneath the veil of mental health and all the things that piss us off, like cat posters. Seriously? Have we not yet gotten over cat posters? Today I welcome Marie-Elizabeth Mali, self-proclaimed “relationship alchemist,” two words I’ve never heard spoken in succession that we will break that down during the episode. In the cancer world, we talk about isolation as the number one mental health affliction of diagnosis and how finding your community is of paramount importance for many to not feel stigmatized or judged. But the same is true for relationships because we all have unmet basic human needs and too often find ourselves unwoke to becoming unwired. Marie-Elizabeth believes that we are all creative people in some way. I somewhat agree because, I mean, anyone can play the radio. [Ba Dum Tss!] But seriously, there is something afoot, exacerbated further each day by our current polarized climate, about aloneness vs. isolation, defensiveness vs. reflection, and exceptionalism vs. craving generosity and tolerance, Enjoy the show. Learn more about Marie-Elizabeth Mali at https://memali.com.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 welcome Michelle Rhee, young adult cancer survivor of Thyroid Cancer (you know, “the good one” I’M KIDDING) whose ordeal left her having over a dozen major surgeries, including open heart surgery for a related underlying rare disease. Back in the heyday when the young adult cancer movement was taking off, Michele was looking to take an active role in our startup culture. After being introduced, I helped land her an internship at the Children’s Cause for Cancer Advocacy, a landmark organization that everyone should know about, which helped launch my career in founding Stupid Cancer. She received BOTH her MBA and MPH in three years and, because she’s such an underachiever, went on to pursue a storied career thus far representing the voice of the patient at every company she’s worked for; including The National Brain Tumor Society, Takeda Oncology, Bluebird Bio, and now as the VP of Patient Affairs at X4 Pharma. She’s also traversed ALL SEVEN continents in a quest to find herself, make sense of the madness, and live her life on her terms. So, prepare yourself for an inspirational conversation amongst friends, and if my “conversation amongst friends” I mean “eavesdropping on our first phone call in 7 years,” well, then you’re in for a treat. Learn more about the Children’s Cause for Cancer AdvocacySee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today's episode of "Jen Horonjeff is Noncompliant" riffs off the news of Pfizer's COVID-19 vaccine safety and efficacy data. Jen has a convo with Matthew Zachary that starts off about vaccines and quickly dives off the deep end into a sea of public perception, personal preferences, and medical ethics. Tune in as we wade through how ableism, veganism, and animal memorial services relate to life-saving medicines. It's all proof positive that developing a vaccine is only half the battle and must be coupled with a robust communication strategy if we want widespread adoption of a COVID-19 vaccine.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today’s show takes us in a different but related direction into the dumpster fire of health insurance pertaining to employer-based care. Joining me is David Contorno, Founder of E Powered Benefits, which itself sounds jargony. Still, I assure you, he’s one of the more controversial and outspoken whistleblowers advocating in the space, and you may be surprised at all of the aha and gestalt moments revealed on the show. Everyone knows that there are benefits when we take a job, but what exactly are those benefits? Do we really read all the fine print? Does the employer genuinely have our interests in mind vs. the overly enticing cost-saving measures that limit your choices? Are we blindly accepting the iTunes Terms Of Service without reading all the fine print? It’s easy to confuse, comport, and conflate healthcare for health insurance. In the end, it all comes down to who writes the check on your behalf. Unfortunately the perversion of incentive-based care too often skews the medical establishment toward making recommendations and decisions on our behalf that are better for them than for us. It’s nice to say the healthcare system is broken, but the real conspiracy is that there isn’t one because this broken system is actually working by design and exactly as it was planned. Buckle up and enjoy the show. Learn more about David on LinkedIn.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 welcome Glen DeVries, Co-CEO at Medidata, the most used platform for clinical trials worldwide. Not too shabby, I say. Among many other things, we dig into his new book, "The Patient Equation: The Precision Medicine Revolution in the Age of COVID-19". Glen is unique in the annals of woke brainiacs who live in the hyper multi-syllable world of science, data, and related semantic geekery AND YET he is hyperaware that average Jane's and Joe's like you and I prefer to actually understand the words emanating from the mouths of "science people" that may or may not be critical in helping us make life-altering medical decisions. Yes, Glen is The De-Jaronator, says me. He's a controversial and authentic personality. As a bonus, he's also an 80's nostalgia junkie like me, so prepare for some random pop culture references that you may or may not need to IMDB. We also chat about Moore's Law and how it applies to the intersection of biology and technology, how we might need to reframe the concept of an impending robot apocalypse, and whether HAL from 2001: A Space Odyssey could be our future gatekeeper to a clinical trial. This episode moves pretty fast. If you don't stop and listen around once in a while, you could miss our reference to SneakerNet. More at https://www.medidata.com.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 episode of "Jen Horonjeff is Noncompliant," Jen talks with Gabe Howard, patient advocate, author of "Mental Illness is an Asshole," and host of the PsychCentral podcast. As a "mental health advocate," Gabe first unpacks how ridiculous it is that all mental health gets lumped together. And herein lies the problem: There is often a one-size-fits-all approach to mental health, one that usually leaves many people behind, especially those who lack essential resources like food, shelter, and insurance, as well as tech and broadband. Please tune in to hear the barriers many patients face when trying to improve and maintain their mental health, along with some of the best analogies you've ever heard. More about Gabe Howard here.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today, instead of my usual shenanigans, I’d like to treat you to something very special that we have been working on here at OffScrip Media.One of the privileges we have here besides creating and producing epic shows on our network like Am I Dying, Brave New Weed, and NORDpod, is the ability to diversity and expand to producing original series — and we think you’re really going to like what you’re about to listen to. We are handing over the entirety of today’s show to episode 1 of The #BCSM Podcast, a 3-part narrative about how breast cancer patients dared to be the change they wished to see, saw an opportunity to fill a need and created the Breast Cancer Social Media Community, or BCSM. What began in 2011 as a conversation on Twitter between two intrepid young adult breast cancer survivors has evolved into a global network of patients, caregivers, clinicians, and researchers dedicated to empowering those affected by breast cancer. Once you listen to this episode, I urge you to subscribe to the series by searching for B-C-S-M in your favorite podcasting app. This is a labor of love for us. I promise you: you will not be disappointed. And now, without further ado, please enjoy episode one of BCSM.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Anyone remember the old Vince Guaraldi Trio song “Cast Your Fate To The Wind?” Look it up, kids, because it’s got almost nothing to do with this show other than being a legendary tune and a related metaphor to today’s BONUS episode. Kids. School. Parenting. Work. — hard enough WITHOUT COVID. WITH COVID, its a dumpster fire shit storm INSIDE another a dumpster fire shitstorm. Today’s show is a real-time steam valve release with two of my high school friends, returning champions to the show Karen Marinelli and Elura Nanos. Both were guests on Episode 2 on March 18th, and Elura returned for our first COVID Back-To-School insanity show on September 18th. There is no normal. There is no end. We are living every moment in the moment on stilts on top of eggshells riding a wooden raft on lava river during an earthquake while an asteroid approaches. Ah, you get the picture. We hope you nod your heads while listening because lord knows we’re not alone during this shitstorm and we’ve got to get through it together. 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, Authenticity Advocate/Speaker/Coach/Writer Erika Gerdes. Lots of self-descriptors there, but rest assured listeners, you're in store for an organic, no-BS kitchen table conversation about worthiness, insecurity, how being a people-pleaser doesn't please people. It's time to focus on the art of undoing the limiting beliefs that hold us back from whoever it is we want, need, and hope to be as carbon life forms on our small blue marble. I like to say, "Man plans and God laughs." (Or "Insert Deity Here" laughs) and Erika is no exception to that rule. Just when you think things are set straight ahead, and everything is going to plan… Sounds like "famous last words" to me. But when her 3-month old daughter faced a life-threatening spinal tumor, that's when real life kicks in, and where there plan is that there is no plan — and our vanity and quest for approval fly out the window for all the right reasons. Maybe we can all find strength when things aren't fine. I also learned what a Xoogler is. I'd tell you to Google it but… well, you'll find out. Enjoy the show. Learn more about Erika online at https://erikagerdes.com.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 – Pam Traxel, Vice President For Alliance Development at the American Cancer Society Cancer Action Network, known in acronym-land as ACSCAN. Hunkered down deep in Washington DC’s beltway, ACSCAN is the dedicated policy arm of The American Cancer Society — and as appendages go, it’s a good choice. We all need to strong-arm things from time to time to elicit even the slightest semblance of progress and justice in this country. ACSCAN’s mission is to ensure that elected leaders make ending suffering and death from cancer a top priority. As opposed to, I guess, ending suffering from too many Pumpkin Spice Latte commercials, which, while not apples to apples, is, in the broadcaster’s opinion, an egregious affront to the laws of hot beverage nature that should be toned down just a bit. The key to getting anything done in Washington — at least as far as getting policies enacted to help people facing cancer — is advocacy; more so, the stories of those advocates who, with one well-spooled yarn, can convince a lawmaker to sign on to a bill that could Schoohouse Rock itself into becoming a law that could help millions of people suffer less. Advocacy and lobbying — when done the right way — always begin with a story. One person’s story. And the sacred art of telling your story can quite literally change the cancer world forever. So, while policy might be the end game for change, never forget that whether you number in the hundreds for a Hill Day or lobby a staffer as an army of one, advocacy works. Advocacy matters. Advocacy forever. Enjoy my chat with Pam Traxel. Learn more at https://www.fightcancer.orgSee 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 CD-ROM. What is it good for besides Microsoft Encarta (look it up, kids) and free AOL accounts in 2004? Well, for one uniquely intrepid and nonprofit founded by Pam Omidyar, the CD-ROM became the intervention that would change the lives of teens living with cancer for the better all around the world. HopeLab is a social innovation lab committed to supporting and improving the health and happiness of young people. And joining me is HopeLab’s CEO, my friend and advocacy partner in crime, Margaret Laws. What is “behavior-change tech?” How can you game-ify loneliness as a predictor of depression and suicide amongst college students, especially during a pandemic? How in the world does “human-centered design” intersect with young adult cancer patient advocacy? What happens when you harness the tools of empathy as a social connection vehicle to normalize identity and end the pity party? All that and oh so much more as we shed light on HopeLab, one of the most impactful and influential organizations of our time that you may never have heard of, online at HopeLab.org. Enjoy my conversation with the marvelous and spectacular Margaret Laws.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

There are missed connections, and then there are missed connections. And this one’s a doozie. Like me, Dr. Joe Abdo was diagnosed with brain cancer in 1996 and — somehow — 25 years later, is still here. Like me, Dr. Joe Abdo’s birthday is May 29th. And like me, it took us way too long to get our lives back in order only to meet 15 years later, grateful that the universe finally brought us together, and kick off an incredibly kismet Gemini friendship. Even weirder – and this is just icing on the cake — his office is literally three doors down the block here on Fulton Street in downtown Manhattan. In any case, you’re going to like this episode not just because it’s an incredibly organic reunion conversation amongst cancer buddies but because Joe is definitely someone who should be on your radar. His pioneering work in genomics, immunotherapy, and biotechnology have helped millions of patients facing rare cancers in the gastrointestinal space. And his company, Stella Dx, is invested in educating physicians about giving their patients choice in diagnostics and testing so they can live their lives and deal with their stuff on their terms. I also feel that my Schoolhouse Rock Kung Fu was especially strong on this show because Joe likes to use lots of syllables. 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.

Patients are labeled non-compliant because the system is not designed with them in mind, and Jen Horonjeff, Founder of Savvy Coop, is changing all that with "Noncompliant," a podcast segment on Out Of Patients with Matthew Zachary where she challenges the status quo to ensure the patient voice is heard. Why? Because, sometimes non-compliance is what moves the needle. Join Jen and learn more at https://www.savvy.coop.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, another fantastic “Wayback machine” episode with Brian Loew, CEO of Inspire. Brian is of the early adopter pioneers of what we now call digital health, which has spawned the current spate of myriad online patient communities, each of whom creates safe spaces of support and engenders the necessary lifehackery to make whatever it is that you’re there for suck a little less. As someone who is currently doing nothing even remotely related to what he studied in undergraduate, Brian and I commiserate on how meaningful his BA and BS in Physics and Economics have come in just so handy these days. Listen in as we debate the semantic virtues or lack thereof in “consumer protection vs. patient-centric care, ” opine on the state of the state facing communities of color, how Inspire is addressing disparities, and the abuse of patients by hospitals, healthcare systems, and the insurance industry happening in plain sight. And prepare yourself for some serious name dropping as we hop in our Delorean, channel life before social media, and give credit where credit is due — to the original gang of upstart rapscallions that comprised the Health 2.0 movement. Enjoy the show. Learn more at https://www.inspire.comSee 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, another take on the big question “Can Science Speak Person” with the incredible Bridget Chapital, Founder and Director of — and I just LOVE this name — Hypothesis Haven Science Club. Just saying that makes me feel smarter. Hypothesis Haven reminds me of the “What If” machine for any of my fellow Futurama fans. HHSC, as it is known in short because #acronyms, is a next-gen educational program for kids 5-13 that — as extramural study filling in the gaps that most STEM programs lack — inspires more critical thinking in our youth. Something I think we need a little more of in our adults these days any. BUT I DIGRESS. Seeing as how the odds are definitely stacked against the average patient in being able to navigate the process, Bridget’s background in health science and clinical research make her the perfect person to take the lessons we learn from children and apply them to startup culture and the healthcare system writ large — answering the age of question that I started with at the top of the segment — Science CAN speak PERSON when done right. Are you smarter than a 5th grader? Let’s find out. Learn more at hypothesishaven.com. (Referred article: Majority of kids who die of coronavirus are Hispanic, Black, or Native American, CDC finds")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 had the opportunity to talk to one of my best friends of all time Brian Friedman, who I had met on his first day at SUNY Binghamton in the Summer of 1994 when he tried out for the Jazz Band as this hot young drummer from Long Island. There are work buddies, there are colleagues, there are friends, and then there are the lifers; the legacy non-biological “family” members who stick by you through thick and thin. These are relationships where you each know the other one better than you know yourself; Someone for whom the idea of “May our secrets die with us” underscores your love and trust. Brian pretty much lived my cancer diagnosis and treatment first hand with me the entire time and was one of those anchor friends who — unlike some other folks — did not abandon me. Rather, he doubled down, stood by my side, was there for me, and — when necessary — held my head over the toilet when I was uncontrollably puking from cancer treatment. Brian is a true renaissance man continually reinventing himself with an audacious self-awareness about fear, failure, and regret that has driven him to achieve incredible things and inspire me all along the way. He’s a rock. He’s a mensch. He was Best Man at my wedding. And I hope you enjoy our throwback chat. Enjoy the show. More about Brian at https://www.b-freed.com.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: A nod to my episode with Dawn Barry entitled GATTA CHATTACA, I hop in my Deloran's Wayback machine to welcome my dear friend and fellow origin story young adult cancer survivor advocate Susan McClure to the show. Diagnosed with breast cancer as a young mother with a 2-year old son, Sue's life and career took an abrupt turn into the world of magazine publishing where she — and I cannot understate this — helped launch Cure Magazine, which is now the largest consumer magazine in the United States focused entirely on cancer. Cure Magazine became the voice of the people and marked a culture shift in US culture. It paved the way for a cottage industry of cancer summits and live event experiences to manifest, including CancerCon, the flagship annual young adult cancer congress produced by Stupid Cancer. Not content to change the world once, Sue went on to launch Genome, the first consumer magazine in the United States, about genomics. Genome's footprint is to have further changing culture around the awareness and understanding of the science — in lay speak, no less, proving the age-old question —> Can "science" speak "person?" When done right — yes. Yes, it can. 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, another Wayback Machine throwback episode with my dear friend and fellow survivor advocate Maimah Karmo, Maimah an author, speaker, coach, podcaster, manifestor, convener, Founder/CEO of the Tigerlily Foundation and, well, — she's a unicorn. Basically, she's just a unicorn so let's just leave it at then. Join us as we take a trip down memory lane to a time before iPhones, Android, Facebook, Twitter, and the original Kung Fu Panda. Yes, I am talking about 2007 and the dawn of the young adult cancer movement. From Liberian refugee to misdiagnosed triple-negative breast cancer patient, to self-proclaimed "chemo-induced nonprofit founder," Maimah has been a dominant voice speaking out on the issues of healthcare disparities and invisible suffering in the black community. There's pretty much nothing Maimah can't do — and you're about to understand why. Enjoy the show. Visit https://www.tigerlilyfoundation.org for more information.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 Shelly Fuld Nasso, Chief Executive Officer at the National Coalition for Cancer Survivorship. It's important to note that NCCS, as it is referred to because #acronyms, is the Nation's oldest survivor-led advocacy organization founded during the Paleolithic Era of Cancer Care — the time before time — of 1986. Yes, the same year as Top Gun, Aliens, Crocodile Dundee, The Color Purple, and Rodney Dangerfield's Back To School, also introduced the word "Survivorship" into the lexicon because the disruptive forces behind NCCS's founding were sick and tired of being called victims, a practice that somehow still continues today. NCCS is an advocacy group I hold especially near and dear as it was the first group that I was introduced to when I decided to quit my career and learn what it meant to become a cancer advocate. Their founder, the late great Ellen Stovall, was my human mentor gateway drug into the world of "making cancer suck less." Shelley has a storied and robust history in advocacy based on personal experience and an inner core of social entrepreneurship that gives her all the credibility she doesn't even need to lead one of our time's dominant advocacy and policy organizations. Prepare to learn. This episode is dedicated in honor and memory of my friend and mentor, Ellen Stoval.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, if there ever were a human Wikipedia sentinel of digital health history, it would be Matt Holt, Founder of The Healthcare Blog (ca 2003), Co-Founder and Co-Chairman of Health2.0, President at Smack.health and self-proclaimed 'Healthcare Curmudgeon." Beyond the obvious "Wayback Machine" discourse, Matt genuinely takes us down the origin story rabbit hole to, pretty much, the exact moment when the tubes of the interweb met up with whatever an EMR was back when Must See TV was a thing. And now, 30+ years later, we have today’s monopolistic, dystopian, and antithetical dumpster fire. But good things have happened along the way, thanks to pioneers, or self-proclaimed "forecasters," like Matt Holt — and we have indeed come so far from the days of ARPANET, IRC, AOL floppy disks. So let the curmodgeoning commence and regale at my conversation with the one and only — and deservedly British — Matt Holt.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, friend, colleague, and fellow young adult cancer survivor/advocate Rebecca Batterman. But let's not let that last label define her because she is OH SO MUCH MORE. Rebecca is an "Innovation Consultant" — what does that mean? Well, stick around to find out, but I can attest that she has one of the most acute minds for seeing signal through noise, and I've been inspired by her ever since we met. Never one to stop reinventing herself after stints in branding, media, marketing, strategic planning, growth, etc, her entrepreneurial spirit — and an unusually keen appreciation for 80s nostalgia as a NON-GEN-X'er — she is now — as of this taping — currently completing her Master of Laws degree in Intellectual Property and Entertainment Law. Slacker! Underachiever! Rebecca is as authentic as it gets. She's an advocate for wellness and can teach us all a thing or two about rolling with the punches. Ladies and gentlemen, my conversation with Rebecca BattermanSee 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, live in person here at OffScrip Media Studios in downtown Manhattan, Sarah Cotenoff, Co-Founder of Podsights — and, more importantly — former intern at The Stupid Cancer Show. Losing your father to cancer as a teenager is never a good thing. But the forced maturity it gives you can ultimately come in handy if and when more crap you didn’t expect happens upon you. In Sarah’s case, it was — after a comedic series of misdiagnoses — Psoriatic arthritis, a condition she has had to manage and learn to live with for over a decade. Our origin story as Intern/Boss is one for the ages because it involves a combination of Zach Efron, Perez Hilton, and an inherent inquisitive moxie that gave every and life to the up-and-coming Stupid Cancer broadcast footprint. Among other “Wayback Machine” things we talk about, there’s a more serious narrative about addiction, self-awareness, resiliency, managing mental health issues, and taking control of your life when it seems no one has their hands on the wheel. So without further ado, enjoy The Chutzpah Show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.