Episodes

In this series finale crossover episode, 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. 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 (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.

In this episode of VAXON, Matthew Zachary and Elura Nanos debrief after receiving their second COVID-19 vaccine. They also discuss the CDC’s updated protocol for those who are vaccinated, how airlines are planning to help vaccinated passengers cross borders with ease, and how one intrepid high school marching band in Washington State came up with a clever way to keep their rehearsals on track. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 @DrMarkLewis 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, 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 g…

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 bookm…

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” be…

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 …

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…

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-…

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…

“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://ar…

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 me…

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…

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 pic…