Out of Patients with Matthew Zachary

Elizabeth Woolfe is a veteran nonprofit consultant and unmatched sherpa guide in the business, management, and organizational culture of charity. Full disclosure: Liz also one of my best friends in the world and saved my ass more than a few times serving as strategic counsel to Stupid Cancer during the latter half of my tenure. As of this recording, we pay tribute to the late Cloris Leachman by preparing you for today's "Roll, Roll, Roll in Ze Hay." See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On the show today —> The venerable Craig Lipset, a storied luminary in the annals of clinical trial innovation — and I mean innovation with a Capital I. (None of that lower case crap happening here on my watch) Craig is the Founder of Clinical Innovation Partners and the Co-Founder of Decentralized Trials & Research Alliance (DTRA), and a proud expatriated Long Islander who pronounces Rutgers the proper way and has a penchant for Wegmans. He ticks every box. He's also been at the literal forefront of clinical trial research and development for over 30 years. Warning that the following episode may contain explicit acronyms and an overdose of syllables.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today I talk to LGBT cancer advocate Liz Margolies. For over 30 years, Liz has worked as a psychotherapist with a specialty in cancer, trauma, and sexuality. She’s an OG LGBT rights activist, and when four of her lesbian friends died of ovarian cancer within months of each other, Liz launched the National LGBT Cancer Network. Because the LGBT community not only has a harder time getting treatment but sexual and gender minorities are also at a much higher risk of getting cancer than the general population. Liz explains why. 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 an extraordinary young woman —> Grace Wethor is a living unicorn of talent and intelligence. Guitarist. Pianist, Trapeze Artist, Figure Skater, Model, Author, TED Speaker — and 6-year survivor of an inoperable brain stem glioma that she was diagnosed with at 13 years old in 2015. Grace is the author of "You're So Lucky" and a new docu-series called "You're So Lucky: The Next Chapter." She joins me to talk about what it's like to have your whole life interrupted at such a young age, and we compare notes against her experiences in the 2010s vs. my eerily similar experiences in the 1990s. Spoiler Alert: We've come pretty far, but we've got a ways to go. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today on the show, I welcome Vikram Bhaskaran and Dr. Rohan Ramakrishna (Chief of Neurological Surgery at Weill Cornell Medicine) live in studio to talk about Roon, their intriguing new cancer navigation platform for patients and caregivers. Roon is personal to Vikram as his whole career shifted from Pinterest executive to caring for his Father when he was diagnosed with ALS. Roon claims to be "the most supportive place online for people navigating complex health conditions, starting with Glioblastoma." so we power-test how that holds up against unmet patient needs. Rohan is only the second neurosurgeon I've had on the show, so, as a brain cancer survivor, I naturally asked him all sorts of pointed questions like, "What's it like to touch someone's brain?" These guys are the real deal with core compassion for empathy in medicine and helping patients in need access what they never knew they needed. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On today's quirky show, I welcome Jen "Jay" Palumbo, an epic human Energizer Bunny who takes a licking and keeps on ticking. Jen is a freelance writer, Forbes contributor, and women's health advocate, specifically for reproductive rights. In a spirited coincidence, it turns out we both went to the same college at the same time, were both Theater people, and have dozens of friends in common. We are ships in the night for sure. As fellow parents of IVF children, we bonded over the current state of the state. And as fellow Binghamton graduates, we bonded over Wegmans, being Theater nerds, and 1990s dorm life in the southern tier. Jen is a true Long Island: loud and proud. Let the hilarity, dark humor, and GenX Therapy begin. 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, I proudly welcome my cancer survivor comrade at arms, Jen Singer. Jen's got the trifecta of "shit happens," having survived cancer, heart failure, and "COVID Classic" back in February of 2020 when no one had any idea what the hell was going on. She is the creator of "How To Be Sick," patient-friendly ebooks called "The Just Diagnosed Guides" to provide the newly diagnosed with the information they really need to know now. Because who actually knows what they need to know when they never knew they needed to know it? She's an outspoken professional despiser of Dr. Google, which I think we could all agree is the worst place to go when bad things happen. And as fellow cancer survivors, we bonded over how the hell we're both still alive all these years later through humor, empathy, and virtual cocktails. 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.

Jonah Comstock is the Editor in Chief of pharmaphorum and a veteran healthcare journalist and reporter. He's been covering this topic even before this topic was a thing to be covered. Throughout his career, he has helped to shape significant narratives about the sector, what matters today, and where he sees progress in the future. Learning from his grandmother, who worked in the printing industry, Jonah's trajectory from Copy Editing Intern to today is an inspiring human time capsule into how the sausage is made. 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.

In today's special bonus episode, Matthew welcomes fellow podcaster and leading Women's Health physician Dr. Mitzi Krockover to the hot seat. Mitzi is the Founding Medical Director of the Iris Cantor UCLA Women's Health Center, a storied entrepreneur, and a thought leader in her sector.She has created a community—nee, a movement—called Beyond The Paper Gown, which includes her acclaimed eponymous podcast, available here on the OffScrip Health Podcast Network. In the wake of the repeal of Roe, we focus on a recent webinar she hosted entitled, "Aftershocks: Unexpected Consequences of the Roe v Wade Decision."See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the vulnerable spaces of what it means to provide care for a loved one. Host Elura Nanos uses her no-BS conversational style to provide a home for the often unspoken thoughts and feelings of the caregiver experience. As a fiercely intelligent and radically compassionate lawyer and media professional, she knows the caregiver path all too well.In our final episode, we continue to expand upon what caregiving looks like through the eyes of two women who have very different, non-traditional experiences for their parents. We examine the emotional side, the mental load, and the educational advocacy needed to sort through the deluge of information that comes with a cancer diagnosis. We are so quick to turn to Google for all of our answers to our medical questions. When Mari Hoffman’s dad was diagnosed with CLL, she found comfort in getting educated. She bonded with her dad through research, and they spent a lot of time together googling the latest CLL information. Mari went on to study genetics and genomics in college at UC Davis, where she is a recent graduate. Our other guest Michelle Stonis, a mom of three and a university professor from California, found the “google rabbit hole” very stressful. She made a conscious choice to stay away from googling until a few days before her mom’s battle with CLL came to an end. Join us for this inspiring conversation from two women in different phases of their lives as they share their very different approaches to caregiving.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the vulnerable spaces of what it means to provide care for a loved one. Host Elura Nanos uses her no-BS conversational style to provide a home for the often unspoken thoughts and feelings of the caregiver experience. As a fiercely intelligent and radically compassionate lawyer and media professional, she knows the caregiver path all too well.In a frank and candid conversation, two devoted husbands share the challenges and rewards of caring for their wives in different stages of Chronic Lymphocytic Leukemia or CLL. Relationships are tough on their best days, but it can add a whole new range of challenges when the person you love is battling cancer. Meet Scott Fuller and Ted Walsh, who talk candidly about their failures and successes as caregivers to their wives who have CLL. Ted Walsh lives in the Raleigh, Durham area of North Carolina and works in the biomedical industry. Ted found out that his wife Laura had CLL just three months before their wedding date. Laura is currently in what's known in the CLL world as the "watch and wait" phase -- often known to folks on the inside as "watch and worry." Our other guest is Scott Fuller from Trophy Club, Texas, where he's the director of golf course maintenance at a country club. Scott has been married for 32 years to his wife Christina, who was diagnosed with CLL in 2018. Christina has recently begun treatment and is participating in a clinical trial at UT Southwestern. Both Scott and Ted are two extraordinary men who are partners in their wives' CLL journey.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the vulnerable spaces of what it means to provide care for a loved one. Host Elura Nanos uses her no-BS conversational style to provide a home for the often unspoken thoughts and feelings of the caregiver experience. As a fiercely intelligent and radically compassionate lawyer and media professional, she knows the caregiver path all too well.This episode discusses the moment of hearing about a loved one’s CLL diagnosis, the daunting task of navigating insurance and the healthcare system, and the necessity of finding and building your support network. Our host, Elura Nanos, talks with Lisa Ferguson, a communications director and mother of two from Huntsville, Alabama, and Erin O’Brien, a project manager from Cincinnati, Ohio. Lisa’s husband and Erin’s mom have CLL. In sharing their stories, they discuss their struggles and challenges and the importance of building your support network. Lisa and Erin begin our conversation as strangers, but they become each other’s “people by the end.”See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickle,” a three-part limited series for patients and caregivers. In each episode, you’ll hear from the people living with SCD and experts who work every day to improve their lives. We’ll learn about the lifelong care, interpersonal relationships, and medical disparities people with SCD live with and what we can do to improve them.EPISODE THREESickle cell disease (SCD) is the most common blood disorder worldwide. About 7 million people have been diagnosed with SCD, and about 100 million people have sickle cell trait. Around 300,000 babies are born with SCD each year. For a rare disease, SCD is quite common, yet patients with SCD are still facing discrimination from funders, researchers, and medical professionals. Still, today, medical professionals are not thoroughly educated on how painful living with SCD can be. In this episode, Joel Helle, vice president of physician services at CVS Health, explains how medical professionals are still behind on SCD awareness. Ahmar Zaidi, SCD advocate and medical director at Agios Pharmaceuticals, talks about his experience as a medical professional working with SCD patients. Our previous guests, Dr. Lewis Hsu, Justina Williams, Dr. Carolyn Rowley, and Andre Harris, talk about the discrimination SCD patients face and how we can help end it.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickle,” a three-part limited series for patients and caregivers. In each episode, you’ll hear from the people living with SCD and experts who work every day to improve their lives. We’ll learn about the lifelong care, interpersonal relationships, and medical disparities people with SCD live with and what we can do to improve them.EPISODE TWOSickle Cell Disease (SCD) is often called an invisible illness; people can't see the excruciating pain. When living with SCD, advocacy becomes crucial as patients inform teachers, employers, medical doctors, and friends of their condition. A pain crisis can put an SCD patient out of work or school or land them in the hospital, where medical professionals are unaware of the severity of their pain. Moving through the world with an invisible illness is a trying task for an already exhausted patient. This is why having a solid support system, either with family or through an organization, is crucial. In this episode, we meet Justina Williams, Patient Engagement Coordinator with Piedmont Health Services and Sickle Cell Agency. She shares her story about how living with SCD has led her to her current role. We also meet Dr. Carolyn Rowley, executive director and founder of Cayenne Wellness Center and Children's Foundation. Cayenne Wellness is a non-profit organization that allocates resources to SCD patients in California. Patients can receive housing and transportation and even have an advocate for them when going to emergency rooms. Dr. Rowley tells the story of her early life with SCD in the 60's and what led her to found the non-profit.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickle,” a three-part limited series for patients and caregivers. In each episode, you’ll hear from the people living with SCD and experts who work every day to improve their lives. We’ll learn about the lifelong care, interpersonal relationships, and medical disparities people with SCD live with and what we can do to improve them.EPISODE ONEAndre Harris is a 32-year-old Ph.D. student residing in Houston, Texas. He’s currently working on a doctorate in social work. Andre is the first graduate student in his family to make this academic achievement, but his road to higher education was not a smooth one. Andre has lived with chronic pain since he was a child. From strokes to pain crises, he has lived with a disease that can interrupt the flow of life. These symptoms are due to sickle cell disease (SCD), a group of genetic blood conditions that affect about 100,000 people in the U.S. In this episode, Andre talks about his earliest memories of living with SCD and the needs of the most vulnerable SCD patients. Dr. Lewis Hsu, a pediatric hematologist at the University Of Illinois Chicago and the Sickle Cell Disease Association of America, explains what SCD is and how it works. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

As an epilogue to the pilot episode of Not Expecting, Matthew welcomes Ann Scalia (Director, Clinical Education for Alliance RX Walgreens Pharmacy) and Ashley McClure-Wolfson (Manager or Clinical Program Development Walgreens) for an in-person roundtable conversation and recap discussion. What is "Right to Parenthood in 2024?" What's new in the world of oncofertility? How does our understanding of gender identity factor into policies and programs? All this and more are coming up.Thank you, Walgreens, for sponsoring this episodeSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The Centers for Disease Control and Prevention estimate that nearly one in every eight couples struggles to conceive. Even today, infertility remains a societal taboo to the extent that more than 60% of prospective mothers said they hid their infertility from family and friends, and nearly half didn't even tell their mothers. All people challenged in their family-building journey should be empowered by knowledge, supported by the community, and offered an equitable and affordable path to biological parenthood.Not Expecting is a single-episode pilot audio series about the invisible heroes who—united by advocacy and inspired to act— have fought for better treatment, forced the medical establishment to evolve, destigmatized cultural perceptions, and pressured lawmakers across the country to guarantee rights to treat the illness preventing parenthood.Thank you Walgreens for sponsoring this miniseries.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Testing Our Patients is a limited discussion series about how the sausage is made when bringing life-saving diagnostic tests and breakthrough medicines to cancer patients in desperate need of hope. In this episode, we welcome Dr.Rafael Fonseca (Chief Innovation Officer at Mayo Clinic in Arizona) and Dr.Ola Landgren (Chief of the Myeloma Program and the Experimental Therapeutics Program at Sylvester Comprehensive Cancer Center at the University of Miami) in an examination of the role that doctors have advocating for MRD testing and expanding the role of diagnostics in cancer treatments.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Testing Our Patients is a limited discussion series about how the sausage is made when bringing life-saving diagnostic tests and breakthrough medicines to cancer patients in desperate need of hope. In this episode, we welcome Allison Silverman, CEO of Stupid Cancer, and Lizette Figueroa, Senior Director of Education & Support at The Leukemia & Lymphoma Society, to discuss their work as patient advocates to get MRD testing the patients who need most. Diverse schools of thought often collide between the risk/reward of rushing approvals too soon vs. the patient advocates who decry, "What's taking so long? We just want to live."See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Finding your voice while navigating a cancer diagnosis is not always easy, but self-advocacy can be a game changer. Advocating for education, research, and funding can drastically change outcomes, and often, it is the voices of those who have experienced health disparities first-hand that impact institutional change. Follow the stories of Montessa Lee, Rayanne Lehman, and Maida Mangiameli as they share moments of strength, wisdom, and advocacy from their journeys with Small Cell Lung Cancer. While there is still no cure for SCLC, there are new screenings and treatments and new reasons to be hopeful.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.