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.

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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.

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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.

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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.

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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.

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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.

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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?”

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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.

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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.

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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. 

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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.

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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.

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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. 

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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.

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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.

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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.

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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.

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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/

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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!

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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.

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