Out of Patients with Matthew Zachary

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.

Today on the show, a peek into the fascinating world of psychiatric oncology with my friend Dr. Guy Maytal, Chief of Integrated Care and Assistant Professor of Medicine at Weill Cornell Graduate School of Medical Sciences. I’ve often heard the phrase “ambassadors of dignity” when referring to the empathic mental health professionals who not only listen to the lyrics but hear the symphony of grief, struggle, and challenge that patients bring. Guy is one of those heroes, and it was a privilege to dive deep into conversations around how the word “rehabilitation” is making a comeback, the sheer necessity of mental health care to lift people up, make some sense of the madness, add a handrail to the staircase, and restore some of the missing parts when we are broken. We also talk about the fabulously insane world of medical reimbursements. Unlike “normal” procedures where you are poked, prodded, radiated and/or stitched backup, mental health is the outlier tossed about as a “nice to have.” 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.

Welcome to Part Two my conversation with Dr. David Langer, Chairman of the Department of Neurosurgery at Lenox Hill Hospital, Co-Founder of Playback Health, and star of the critically acclaimed Netflix series, Lenox Hill. If you’ve listened to Part One — and I hope you did because it’d be weird if you hadn’t — there is such richness into David’s humanity and approach to medicine beyond the biology of the patient, their caregivers, and loved ones. We really dig into what David’s been working in the digital health/tech sector during this segment, specifically his startup, Playback Health, which is literally putting the humanity back into the doctor/patient relationship. I’ve seen a ton of “innovation” in my time, but this is real, and it’s amazing. You can check that out at PlaybackHealth.com. Plus, a much deeper dive into his newfound notoriety and adoration by starring in the Netflix Series, Lenox Hill. David doesn’t think of himself as a celebrity, but to the thousands of lives he’s changed for the better, perhaps he’s more of a superhero. With that, enjoy PART TWO — the exciting conclusion — of my two-part episode with the one and only Dr. David Langer.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Some of you may have heard about the acclaimed Netflix series, Lenox Hill. If you haven’t, you’ve to to check it out. Four doctors at New York's storied Lenox Hill Hospital balance their personal lives and their dedication to their patients in this documentary series. And one of those doctors joins me today. Dr. David Langer, Chairman of the Department of Neurosurgery at Lenox Hill Hospital and Co-Founder of Playback Health is one of those doctors — and he joins me here in-studio — and I am totally fanboying for all the reasons. Touching people’s brains to help save their lives is indeed an interesting badge of honor to wear, and a a burden to bare. And as someone who has had their brain touched by a neurosurgeon, I have the most profound respect imaginable for the practice. Beyond his superstardom with the Netflix special, David is one of the most genuine and empathic human beings around who also happen to be one of the most recognized leaders in his craft. Our conversation was more than just idle chatter. There is a deep-rooted missing element to showcasing humanity in medicine, and an ebb tide reveal of the lack of empathy that unfortunately pervades the practice of medicine. And did I mention that David was a first responder to the COVID pandemic in NYC when the shit really hit the fan? With that, enjoy PART ONE of my two-part episode with the one and only Dr. David Langer.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today, a frenetic BONUS episode with my dear friend of 30+ years, the always eclectic, impossibly talented Half-Greek/Half-Italian spitfire no BS unicorn that is Elura Nanos. As two exasperated Gen-X parents of young kids, we needed a COVID-19 venting session to outgas our egregious misgivings with the endless ignominious malfeasance on the part of the school systems to figure out what the hell is actually happening. Prepare to nod your head, fellow parents with school-age children, for what you are about to hear is as unfiltered and unscripted as it gets. Just wait for the part where we talk about Zoom Band and Zoom Gym and how if Unicycles were banned in Minnesota, people would find a way to sneak them in from Wisconsin anyway.Plus, there's a healthy serving of mask mandates, cultural biases, tribalism, and "What's the use of science anyway?" Oh - And a nod to the fact that most Americans lack even the most basic understanding of what "freedom" actually means? AND that the government is allowed to infringe on your liberty all it wants. 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.

Get ready to learn a lot on today’s show. For example, did you know there are Board Certified Patient Advocates? You heard that. And it’s not what you think. It’s better. Joining me to discuss this — and OH SO MUCH MORE — is Dr. Grace Cordovano, the CEO of Enlightening Results and the Co-Founder of Unblock Health. I’m at my best when I feel like the dumbest guy in the room by learning things I had no idea about. This is that conversation, and I hope you take away what I did because it is so revelatory and unsung. What Grace and I share most in common is our hill to die on: guaranteeing that every patient has the access, navigation and dignity they deserve to be in charge of their own outcomes. We also pick a mutual fight against anyone who uses the phrase “Health Innovation” because it’s usually all loads of shit to justify someone’s business card. 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, what happens when a legacy, award-winning NPR radio producer/young adult cancer survivor is interviewed by a gracefully aging, semi-legacy, non-award-winning, non-NPR producer/young adult cancer survivor? Does a media event horizon manifest in the clouds along with the token interdimensional SKY BEAM from comic book movies? Kara McGuirk-Allison is an award-winning public radio and podcast producer with 25 years of experience in storytelling, production, and journalism. Among a ton of other insanely incredible things she’s done in her career to date, she produced and launched the critically acclaimed show Hidden Brain for NPR. Listen in as we swap war stories and compare notes about the nostalgic virtues of audio, how the golden age of fireside chats now resides on-demand in our pockets. We also opine on how, while there are currently WAY TOO MANY PODCASTS for anyone comfort that are potentially diluting the medium, the concepts of “niche media” and “appointment listening” (as she puts it) are redefining where consumers seek personalized verbal conversation. Also, a dip into the waters of “survivor guilt, being your own advocate (if, when, and where that is possible) AND a dire message to the public —ONLY YOU CAN PREVENT PODCAST FIRES.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, DNA Science Superhero Dawn Barry, President and CEO at LUNA, a public benefit corporation that is restoring power to the people by giving them back control of their genomic health information for the greater good? What a novel idea. While we would have loved to spend the entire show debating the virtues of Beyond Meat vs. Impossible Burger, we really dig into to the very nature of how, from the perspective of consumer and cultural adoption, the very conversation about our DNA — and it's role in shaping our lives — has come so far since Jurassic Park's Mr. DNA cartoon explainer dude. And yet, the foreboding words of Jeff Goldblum's Ian Malcolm still ring true: "Yeah, but your scientists were so preoccupied with whether or not they could, they didn't stop to think if they should." So strap in for an incredible chat about the uselessness of most genetic test kits, genomic bias in the workplace, predictive genetics vs. Orwellian eugenics, the mystique of the proverbial designer baby, and how DNA is not your destiny. More about Dawn 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, another stellar returning champion, Dr. Saralyn Mark, Former Senior Medical and Policy Advisor to The White House, NASA, and the Department of Health And Human Services, Physician Women’s Leader at the American Medical Women’s Association and Author of “Stellar Medicine: A Journey Through the Universe of Women’s Health.” Now, that was a hand full of epic credentials, but the rubber really hit the road today when we both dig deep into the calculus of COVID, meaning — how to make sense of anything anymore, as a scientist, parent, and educated human being. The United States is often called “The Great Experiment,” and MY OH MY are we ever now a frieken experiment with our state-based social game of Whack-A-Mole on infections, deaths, mask-wearing compliance, and schools that open one day and — SURPRISE SURPRISE — literally close two days later. Can’t we just shut down the whole country? Uhm… no? That ship has sailed. So strap in and let’s get down to business because I said so. Enjoy the show. Learn more about Saralyn Mark.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

So you want to be a speaker? You want to tell your story? Spoiler alert, it’s not so easy, and I think you might know why. Anyone can tell their story, but that doeth not maketh them a storyteller. There is a definitive art, method, and process to be a storyteller, nee, perhaps even an orator. But not necessarily a Town Crier. Today I am joined by my friend and colleague, Tricia Brouk, an award-winning director, choreographer, speaker, writer, podcaster, and Founder of The Big Talk Academy; which is a 12-week virtual certification program that will teach you the skills you need to identify, write, share — and even possibly perform — your big talk. Stories are all we have, and storytelling is what binds us together as a society. In healthcare, the right story told the right way to the right person can get a drug approved, a bill passed, or a critically disenfranchising law repealed.From the shyest wallflower filled with stage fight to the most professionally trained thespians, we talk about inclusion, integrity, and little self-confidence can actually change the world. Enjoy my chat with Tricia Brook. More: The Big Talk Academy.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 Andrea Ottaiano, recovering agency, Pharma, and media veteran, research junkie, health coach, Founder of Silver Lining Holistic Health AND — if that’s not enough — 13-year survivor of breast cancer, liver cancer, and cholangiocarcinoma. So what happens with the Health Coach gets cancer? When the professional becomes the patient? That is a “both sides of the coin” story to tell, and she’s got a good one. We also rage on about how the jargon of “Whole Patient Cancer” — which to its credit has come quite far — has a long way to go as far as addressing the mental, physical, nutritional, practical, and cultural needs IN COMPLEMENT TO the self-evident biological needs. We also debate the vagaries beyond the Ricola Alpine Horn of “Just be Your own advocate!” — because it ain’t always that easy. Plus, a dip in the WTF pool of “super health organic vegan peak performance athlete specimens also die from cancer,” so does it simply come down to “try to be healthy” and “shit happens?”See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Author and journalist Michael Millenson is one of the original agitators of the status quo of healthcare. He is a friend, mentor, and someone I have consistently referred to as the “older, angrier, and more sagacious version of me.” His activism over the past 20+ years has paved the way for scores od patient advocates like me to grow our experiences into formidable and influential bully pulpits. And his book, Demanding Medical Excellence” is a template for what SHOULD be happening with our healthcare system but is regrettably not. He is particularly incendiary against hospital systems that place profit over purpose and who often have to be incentivized to do the right thing for their patients. You’re going to love this conversation.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 about fertility and family planing is very personal to millions of people. Because, while you may want to be a biological mom or dad one day, bad things happen to good people. Joining me is perhaps one of the most unsung advocacy heroes you may never have heard of, Barb Collura, the President and CEO of RESOLVE: The National Infertility Association. One in eight couples struggle with infertility, and that’s not discount the single men and women who may not have a partner yet to build a family with. Let alone the hundreds of thousands born infertile or left infertile from cancer, chronic disease, or other reasons. Barb is THE go-to expert fighting on our behalf with the National Institutes of Health, The National Cancer Institute, The National Health Council, and — yes — The World Health Organization because they are actually an incredible governing body. So whether you have sperm, eggs, embryos, a uterus, or some or NONE of those things, this episode is the story of you. And bonus points if you can say the word IATROGENIC ten times fast, and/or perhaps find a word that rhymes with it.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, returning champion Dr. Joseph Mikhael, Professor of Applied Cancer Research at the TGen institute for City of Hope AND the Chief Medical Officer of the International Myeloma Foundation. We are talking all things Telehealth, telemedicine, tele-patients, tele-hospital, and video telephones, otherwise known as cell phones, tablets, and computers.Upside. Downside. Side side? Zoom fatigue. eBurnout. Telehealth in the workplace (when there IS a workplace) Our reliance on tech vs actual human interaction. Will hospitals and clinics REALLY NEED so much real estate in the future? We are living in a new world, people. 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 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 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.

On today’s show, Dr. Joseph Mikhael, Professor of Applied Cancer Research at the TGen institute for City of Hope AND the Chief Medical Officer of the International Myeloma Foundation, an incredible nonprofit advocacy and research organization that I’ve been proud to call a partner for many many years. They’re a great group. Joe is one of the most highly coveted and requested subject matter experts and speaks at hundreds of conferences worldwide (when those used to exist) and webinars for the genomic, medical, oncologic, and patient advocate communities. He’s the James Bond – meets – Liam Neeson – meets Jason Bourne – meets – Austin Powers of all the things I just said. His key focus, which fascinates me, is understanding how factors like what country you’re born in, your socioeconomic status, and your genetic predispositions determine whether or not you enter the shit happens store of cancer. He’s also Canadian, but I forgive him. Although he does know Justin Trudeau, so I heard.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, returning champion Dr. Jean-Luc Neptune, physician, entrepreneur, innovator, technologist, digital health guru, and Founder at Suntra Modern Recovery, a Telehealth platform offering personalized recovery solutions for people with substance use disorders. As two separate possessors of COVID-19 antibodies, this time around on the show, the tables were turned as I got to ask him a whole bunch of “there are no stupid questions” questions — in an attempt to work our wizard magic and turn the intellectual scientific scholarship around COVID-19 into perhaps more understandable and relatable words with less syllables for the average person, hopefully. 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, returning champion Dr. Catharine Young, former Senior Director of Science Policy at the Biden Cancer Initiative, and current Executive Director at the SHEPHERD foundation. A human of many hats, she’s also a TED Fellow, Presidential Leadership Scholar, and Doctor of Philosophy with one of the most awesomely sardonic Twitter feeds around @CatYoung. Catharine was one of my very first guests on the program, SO if you want to hop in your Delorean and check out Episode 5 from March 26th. This time around, we talk COVID-ish stuff, pivoting your nonprofits in a crisis, helping scientists learn to speak “person,” the egregious misgivings of confirmation bias during a pandemic, and how the science of ophthalmology must change perfect vision to 2019 or 2021 because 2020 is dead to us and there forever shall no longer be hindsight as we know it.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, friend, colleague, fellow young adult cancer survivor, advocate, speaker, blogger, and Stage IV melanoma bald guy, TJ Sharpe. He just celebrated his 8-year cancerversary and — spoiler alert — is still here alive, kicking, and staying just angry enough to keep poking a stick at the dumpster fire that is our modern-day healthcare system. His activism has made him one of the dominant voices in clinical trial and immunotherapy awareness for patients and HCPs and his superpower is translating the jargony BS of patient voice, and patient experience into a more digestible narrative that has made cancer suck less for countless others. More about TJ Sharpe at http://www.tjsharpe.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 show, John Gorman, Founder of the Gorman Health Group, member of the Board of Directors of Henry Ford Health System’s Health Alliance Plan, and the Chairman at Nightingale Partners LLC which — to paraphrase — make things suck a whole less for underserved and economically disadvantaged communities by focusing on racial disparities in healthcare. His 30+ years experience in public service has given him a genuinely unique perch on which to sit atop, and his advocacy efforts have spawned almost a dozen entrepreneurial ventures in government health programs that ACTUALLY HELP PEOPLE. What a novel idea. So buckle up. You have been warned.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Christine Hodgdon is a globe-trotting, human Fodor conservation biologist turned patient “radvocate” (that would be my neologism for radical advocate) by way of her enduring the loss of her father to rare cancer at the same time of her own Dx of Stage IV Metastatic Cancer AND Thyroid Cancer. Gesundheit! She was 34. Among many other interesting things, we talk about the gaps in cancer research that exist because the patients are not involved. Guys? We’re the end user here. Dear Pharma: It might make sense to give patients a seat at the table to help you make the sausage that may one day course through our veins. You get the gist.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 Trevor Maxwell. Trevor is a husband, a writer, and a father to two teenage daughters. Two years ago, he was diagnosed with stage four metastatic colon cancer. He is a powerhouse advocate who never envisioned becoming an advocate. But that's how it works, right? You recognize a need, get angry that it is not being met, and become the accidental advocate. The need Trevor recognized was that, in the economy of cancer support, a dearth of gender-specific support existed for men, and only men. At Stupid Cancer, we did our best to make sure that we had gender-relevant support groups within the broader community of what we have in common. Still, Trevor struck precisely the right chord when he started up a group on Facebook called Man Up to Cancer. So this episode is about men and cancer and finding your tribe. Enjoy my conversation with Trevor Maxwell. Man Up to Cancer: https://www.manuptocancer.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 show, we welcome Julie Croner, Vice President of the Patient Leader Network at WEGO Health. Julie is a rare disease activist who has been educating and empowering patients for more than a decade with tools to better advocate for themselves and others. She and I met a while ago at one of those spectacularly stupid Pharma conferences where tokenism reigns supreme. These are the conferences where they ask patients to share their story FOR FREE—that's right, NO compensation for time or value, because that's their way. At the time, I was one of those suckers who did just that: Gave away the store that was my patient experience for free so the private sector could go off and make a fortune off the disenfranchised backs of patients. The upside? I got to meet Julie Croner. Julie knew better, so she went ahead and took up the charge at WEGO Health, which we'll learn about on the show. Tangential to this episode, you may want to consider scrolling back in my feed and checking out Episode 14 called "Pay Your Fucking Patients." You can tell this is a subject that really pisses me off, which is why – again – someone like Julie is the perfect person to chat with about all the things. Enjoy my talk with Julie Croner. WEGO Health: https://www.wegohealth.com. Episode 14: Pay the Patients!See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Lilly Stairs is the Founder of Patient Authentic, which is exactly as it sounds: a bully pulpit that takes (1) the chocolate that is the health tech sector and (2) the peanut butter that are the nonprofits, and makes the Reeses Peanut Butter cup of social change that puts the patient at the forefront of every conversation. Advocates are not born. They are made, often of their own condition. Lilly is no exception having been diagnosed with psoriasis at 7, and then both psoriatic arthritis and Crohn's disease at 19. She's worked for Pharma, Bio, Patient Advocate Groups, and Nonprofit Organizations. She wears many hats. In addition to all those things, we spent time exploring the "donut hole of access" between the health-tech and nonprofit sectors—Twas an epic discussion.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, my good friend, long-time partner-in-crime advocate, and Princess Leia Jedi Master of Health Tech, Susannah Fox, who I consider to be one of the most insightful, introspective and influential unicorn, renaissance human beings around. Susannah was the Chief Technology Officer for the U.S. Department of Health and Human Services and is currently on the boards of Cambia and Hive, and provides research and advice about navigating the intersection of health and technology at her consultancy, Internet Geologist. Her passion has been—and quite possibly forever shall be—the fundamental power of peer-to-peer health. You know, that whole "You're Not Alone" thing? "Connecting with people with shared and similar experiences where there's no judgment or stigma?" "Tribalism done right for the purpose of lifehacking your way through acute illness and chronic conditions?" That is Susannah's passion. See if you can spot the gestalt moment where I nearly lost my mind (in the best sense) after hearing that—of all places — the thrush of modern-day health lifehackery is coming from Amazon reviews. On that note, enjoy my conversation with Susannah Fox. Follow Susannah on Twitter @SusannahFox.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.

Alice Crisci is a cancer survivor, entrepreneur and activist. She founded MedAnswers to speed consumer access to specialty medicine. Her company's first app product, FertilityAnswers, is the only social network for fertility.FertilityAnswers connects users struggling to conceive with multi-disciplinary experts who can answer their anonymous fertility questions. Alice also founded the oncofertility charity, Fertile Action, three weeks into her breast cancer diagnosis at 31-years-old, and is the ecstatic mom of a fertility preservation miracle son and their pet menagerie who sometimes even let her practice daily meditation in peace and quiet.More at http://MedAnswers.com and http://www.fertileaction.org/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In 2016, Sara Woods was diagnosed with Clear Cell Sarcoma, a very rare form of Sarcoma, which is in itself a rare form of cancer. Today in 2020, Sara is 17 years old.This week on Out of Patients, we've set aside two entire episodes to focus in on the story of what Sara's mother Lennie Woods did when Sara's diagnosis landed on her family. This is the story of the patient experience of Sarcoma, and of Sara's Cure: the bold non-profit organization created by Lennie, along with her fierce friend and COO Molly Liska.Together Lennie, Molly and the entire Sara's Cure community are lifting up not just Sara but every other Clear Cell Sarcoma patient in the world to force momentum and critical mass in order to drive the research needed to produce a viable therapeutic approach to CCS. This is what patient advocacy looks like.Part 2 of 2Sara's Cure: https://sarascure.org/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In 2016, Sara Woods was diagnosed with Clear Cell Sarcoma, a very rare form of Sarcoma, which is in itself a rare form of cancer. Today in 2020, Sara is 17 years old.This week on Out of Patients, we've set aside two entire episodes to focus in on the story of what Sara's mother Lennie Woods did when Sara's diagnosis landed on her family. This is the story of the patient experience of Sarcoma, and of Sara's Cure: the bold non-profit organization created by Lennie, along with her fierce friend and COO Molly Liska.Together Lennie, Molly and the entire Sara's Cure community are lifting up not just Sara but every other Clear Cell Sarcoma patient in the world to force momentum and critical mass in order to drive the research needed to produce a viable therapeutic approach to CCS. This is what patient advocacy looks like.Part 1 of 2Sara's Cure: https://sarascure.org/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, you’re going to hear from my friend and colleague Bruce Cozadd, Co-founder, Chairman and CEO of Jazz Pharmaceuticals. And NO — this was not a conversation about the glamorous Pharmaceutical Industy and all its unique facets — shall we say — worthy of endless discussion. I wanted to talk with him – as my friend, my peer, fellow Founder and CEO — about leadership during COVID and all the other crazy shit going on. Listen to Matt and Bruce on The Stupid Cancer Show here: https://offsc.rip/mzbcscsSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Bob Bollinger is the Raj and Kamla Gupta Professor of Infectious Diseases at the Johns Hopkins University (JHU) School of Medicine, and he holds joint appointments in International Health at the Johns Hopkins (JH) Bloomberg School of Public Health, and in Community Public Health at the JH School of Nursing. He is Founding Director of the Center for Clinical Global Health Education (CCGHE), Director of the JHU Fogarty India Program, and Associate Director for Medicine of the JH Center for Global Health.Sebastian (E.) Seiguer, JD, MBA is CEO and co-founder of emocha Mobile Health, a company which uses video technology to secure medication adherence. Fluent in German, Spanish and English. Sebastian holds a JD from Columbia Law School and an MBA from the Carey Business School at Johns Hopkins.Learn more about eMocha Health at https://emocha.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Saralyn Mark, first and foremost, is a Leader of the American Medical Women’s Association (AMWA). She served as the Senior Policy Advisor to the White House Office of Science and Technology during the Obama administration working on the Ebola outbreak in 2014. At the Department of Health and Human Services and NASA, she was the first Senior Medical Advisor to the Office on Women’s Health. She joined Matthew remotely to cut through the clutter, break down some of the COVID-19 mumbo jumbo, and level-set reality a bit while the world is on fire. Check out Dr. Mark’s book Stellar Medicine: A Journey Through the Universe of Women’s Health, available wherever books are sold.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Matthew Lamb, Ph.D. is an Assistant Professor or Epidemiology at Columbia University Medical Center. He focuses on infectious disease prevention, treatment, and scale-up. His research focuses on identifying best practices in public health approaches to HIV prevention, service delivery, and treatment in resource-limited settings.Dr. Lamb focuses on applying causal inference in implementation settings. He teaches courses in the Epidemiology department on introductory epidemiology and biostatistics, applications of epidemiologic research methods, and advanced techniques in epidemiologic methods. Dr. Lamb works in the Strategic Information unit at ICAP-Columbia University.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Andrew and I had the pleasure to welcome in-studio Patrick James Lynch, a true renaissance man of many hats who was born of his condition — for a DOUBLE INTERVIEW.If I were to fully divulge all that is Patrick James Lynch, this intro would be longer than the episode. So in brief, he is one of world's most influential hemophilia patient leaders in addition to being a filmmaker, actor, producer, media guy, keynote speaker, and Founder/CEO of both Bloodsteeam Media, a rare and chronic disease podcast network and Believe Limited, a unique storytelling agency that creates entertainment to affect change.This man is a frieken specimen. Advocates love him. Activists want to be him. And I unapologetically may have developed little man-crush throughout getting to know him. This episode is on the longer side of what we usually publish, but, I assure you that if you've got the time, it's worth the listen. And as an added bonus, a recurring theme of Steve Guttenberg — along with mentions of The Golden Child, the phrase “penis breath” from ET, and Wilfred Brimley — will assure all you GenX’ers that the 80s are alive and well right here on the pod.Please enjoy this double intervew with Patrick James Lynch.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Greg Hammer is pediatric intensive care physician, pediatric anesthesiologist and author of the new book “GAIN Without Pain The Happiness Handbook for Health Care Professionals,” which speaks to the philosophies of mindfulness to reduce or mitigate physician burnout — and if there were ever a time for our "Spidey Senses" to be tingling about physician burnout, it’s right now while the world is burning.GAIN Without Pain on Amazon See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Matthew and Andrew welcome cancer survivors Nina Beaty, Creator, The EmPat Cancer Project, and Katie Brown, Vice President of Support and Survivorship Programs at The LUNGevity Foundation, to opine on the current status of lung cancer in America and around the world. Issues of stigma, the increasing prevalence in young women, new treatment options, and how to navigate the COVID-19 pandemic are just some of the pressing topics we cover in this crucial episode.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Peter MacDowell is the Clinical Director of Rochester Dermatologic Surgery and former Co-Director of Clinical Trials Office at the Wilmot Cancer Institute. If that last name sounds familiar, well that’s because Peter is the brother of Andrew MacDowell, my Co-Founder, and COO here at OffScrip Media. Sibling rivalry be damned — and while we may have reinforced some established biases between upstate and downstate New York — we had a fantastic conversation down the rabbit hole of clinical trial treatment, management, and administration in the 21st century.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

How does one "Schoolhouse Rock" the interesting world of Clinical Trials? On the show, Matthew and his Co-Founder/COO Andrew MacDowell are joined by Medaptive Health’s co-founders Eric Kroll and Jeremy Block to help break down and de-jargon what exactly is going on in the world of trials, patient advocacy, drug approvals — and the ever evolving role of Industry, for better or for worse.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.