Episodes

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. …

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 cover…

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…

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 …

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 Epi…

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…

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 N…

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. (Part 2 of 2)

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.

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 o…

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.