![[HIATUS] THE SICKLE: Fighting Medical Disparities with Sickle Cell Disease (Episode Three)](https://is1-ssl.mzstatic.com/image/thumb/Podcasts126/v4/c1/f7/79/c1f77900-fac0-4977-301e-7b1df125bd52/mza_4275825560845755011.jpeg/250x250bb.jpg)
Episoder
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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.
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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."
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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.
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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.
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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.
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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 THREE
Sickle 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.
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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 TWO
Sickle 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.
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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 ONE
Andre 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.
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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 episode
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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.
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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.
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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."
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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.
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“Get your affairs in order” was the advice from one ER doctor to Rayanne Lehman upon seeing her chest X-Ray. That was 4 years ago. When Maida Mangiameli received her Small Cell Lung Cancer diagnosis she wanted to live to know her newborn grandchild and that child is now 6 years old. And for patient Montessa Lee, her Small Cell Lung Cancer (SCLC) diagnosis 16 years ago has led her to a lifetime of advocacy work for lung cancer research, funding and education along with a commitment to being a voice for the voiceless. These lung cancer success stories are not only hopeful but through their journeys, these three patients and their caregivers have gathered a wealth of information and insight to share with others.
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In this series finale, we meet Maimah Karmo, President and CEO of the Tigerlily Foundation, and learn about her journey to end disparities for young breast cancer patients of color. If you like this series, be sure to subscribe, leave a rating a review, share on social media, and please tell your community to check it out.
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In this episode, we meet breast cancer advocates and users of #BCSM, Liza Bernstein, Anne Marie Mercurio, Christine Hodgdon, and Julia Maues. We find out how they got involved in #BCSM and how they utilized the hashtag to further their advocacy. If you like this series, be sure to subscribe, leave a rating, a review, share on social media, and please tell your community to check it out
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Breast Cancer Social Media (#BCSM) is an online community dedicated to empowering those affected by breast cancer. #BCSM began in 2011 as a conversation on Twitter and has grown into a world of support, guidance, and reliable information. In this episode, we meet breast cancer survivors and co-moderators of #BCSM, Alicia Staley and Jody Schoger. We also find out how Dr. Deanna Attai got involved in the online patient community.
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The fight for equitable healthcare goes to Congress. Plus, we meet the next generation of breast cancer activists.
Relevant Resources:
Leslie’s Week
METAvivor - Political advocacy work
Tigerlily Foundation - Political Advocacy Work
Tigerlily Foundation - RAISE
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Because of years of being delayed, dismissed, and denied, metastatic patients have had to become the experts in their own care. With the help of doctors and researchers, these patients are now changing the healthcare system from the inside out.
Relevant Resources:
Tigerlily Foundation - Barriers Toolkit
Storm Riders Network - Christine’s Database for Clinical Trials
The BECOME Project - Stephanie Walker’s Study
Trials of Color - Sharon Riveria-Sanchez’s Org
METAvivor - Research - Exciting MBC research made possible by METAvivor grants
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For decades, only one type of patient has been represented in the breast cancer awareness movement. In this episode, we learn the consequences of this representation gap and meet patients who are flipping the script.
Relevant Resources: METAvivor - Health Disparities in MBC
Tigerlily Foundation - Barriers Toolkit
Tigerlily Foundation - My Life
Shonte Drakeford - My Life, My Legacy
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