Blood Sweat and Cells: Gene Therapy & Sickle Cell Disease: What Families Need to Know

Gene therapy is emerging as a powerful treatment option for people living with sickle cell disease, but with innovation comes important questions about safety, access, cost, and trust.

In this episode of Blood, Sweat & Cells: Real Talk About Sickle Cell Disease, host Valerie Bey sits down with Sheri Reed, Patient and Community Educator at Genetix Biotherapeutics, for a plain-language education for individuals and families affected by all forms of sickle cell disease, including HbSS, HbSC, HbS beta-thalassemia, and related variants.

Together, they explore what gene therapy is (and what it isn't), how the treatment process works, what long-term monitoring looks like, and how Medicaid coverage and outcomes-based payment models are being discussed to improve access — especially for underserved communities.

This episode is designed to help individuals and families ask informed questions, understand their options, and make decisions that feel right for them.

🎧 This episode is for educational purposes only and does not replace medical or insurance advice.

Trusted Resources for Learning More about Gene Therapy

Centers for Medicare & Medicaid Services (CMS):

Medicaid coverage and policy

https://www.cms.gov/priorities/innovation/innovation-models/cgt

National Institutes of Health (NIH): Genome Research Institute

https://www.genome.gov/research-at-nhgri/Projects/Democratizing-Education/navigating-sickle-cell-disease-gene-therapy

American Society of Hematology (ASH): Patient education on sickle cell treatments

https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/sickle-cell-disease-guidelines

"Gene Therapy & Medicaid: What Families Should Know" handout and trusted educational resources link - https://heartogold.org/uncategorized/gene-therapy-medicaid/

Patient Support Therapy: www.genetixpatientsupport.com

Gene Therapy in SCD: https://www.sparksicklecellchange.com/treatment/sickle-cell-gene-therapy

Genetix Biotherapeutics: https://www.genetixbiotx.com/

Dental care is often overlooked—but for people living with sickle cell disease or carrying the sickle cell trait, it can be a critical part of staying healthy and preventing serious complications. In this powerful and eye-opening episode of Blood, Sweat, and Cells: Real Talk About Sickle Cell Disease, host Valerie Pearson Bey sits down with Linda Chandler Jacobs, registered dental hygienist, educator, advocate, and founder of The Potter's Smile, the only 501(c)(3) dental practice in the U.S. dedicated to serving patients with sickle cell disease and sickle cell trait.

With more than 50 years of experience—and lived experience as someone who carries the sickle cell trait herself—Linda explains how oral health is deeply connected to overall health. She shares why hydration, infection prevention, medication disclosure, and coordination with hematologists are essential; why extractions and implants can pose serious risks; and why patients must advocate for themselves by informing and even interviewing their dental providers. This episode is a must-listen for sickle cell warriors, caregivers, and healthcare professionals who want to understand how informed dental care can help prevent pain crises, infections, and long-term complications.

🎧 Tune in to learn how protecting your smile can help protect your whole body—and why dental knowledge can be lifesaving.

For information about The Potter's Smile or to send them an email with questions about dental care for patients with sickle cell disease or the sickle cell trait.

visit https://www.thepotterssmile.org

The Inova Adult Sickle Cell Center recommends The Nova Dental Clinic novadentalclinic.org

for persons living in Northern Virginia

We all love a good holiday meal with turkey, sides, and sweet desserts — but for people with sickle cell disease or compromised immune systems, a foodborne illness can be far more than an inconvenience. It can be a serious health threat.

I'm your host, Valerie Bey, board member with The Heart of Gold Sickle Cell Foundation of Northern Virginia. In this episode of Blood, Sweat & Cells: Real Talk About Sickle Cell Disease, I'm joined by Jodi King and Ian Armstrong, Environmental Health Specialists with the Fairfax County Health Department. Together, we break down why foodborne illness poses higher risks for people with sickle cell disease, especially during the busy holiday season.

We'll explore the most common holiday food-safety pitfalls — buffets, leftovers, undercooked meats, dairy risks, cross-contamination — and share practical, actionable steps you can take right now to stay healthy and enjoy your celebrations without worry.

For food-safety information, guidance on reporting suspected foodborne illness, and to view local inspection reports, visit: https://www.fairfaxcounty.gov/health/food

For national guidelines, education, and tips on safely buying, storing, preparing, and serving food — especially important for anyone at higher risk — visit: https://www.fda.gov/food

From the series: Blood, Sweat & Cells: Real Talk About Sickle Cell Disease

When Tatyana decided to stop her medication so she could have a child, she knew there would be risks. But nothing could have prepared her for the relentless pain that followed or the heartbreak of missing her baby's first milestones while fighting for her own life.

In this deeply moving third episode of our special series on half-matched bone marrow transplants, we hear from Tatyana, a 30-year-old sickle cell warrior who refused to give up. From pregnancy complications and endless hospital stays to a life-changing decision made from her hospital bed, Tatyana opens up about her emotional journey toward healing and the day her younger brother became her half-match donor.

This is a story of a mother's love, a family's strength, and a medical breakthrough offering hope to thousands living with sickle cell disease.

For anyone who'd like to learn more about this procedure, you can visit https://www.hopkinsmedicine.org/transplant/programs/bone-marrow

On this episode of Blood, Sweat, and Cells, host Valerie Bey sits down with Dr. Robert Brodsky from Johns Hopkins to talk about a groundbreaking half-matched bone marrow transplant, opening the door to cures for more sickle cell patients than ever before.

Learn how this breakthrough procedure compares to gene therapy and what it means for the future treatment of patients with sickle cell disease.

For anyone who'd like to learn more about this procedure, you can visit https://www.hopkinsmedicine.org/transplant/programs/bone-marrow

Born with sickle cell disease, KeAndra Hickman endured years of painful crises, countless hospital stays, and constant uncertainty about her future. Then she discovered a groundbreaking option—a half-matched bone marrow transplant—and decided to take the leap.

In this episode of Blood, Sweat, and Cells, host Valerie Bey sits down with KeAndra for a powerful and deeply personal conversation about the highs, lows, and ultimately life-changing outcome of her transplant journey.

Most people with sickle cell disease will never find a perfectly matched bone marrow donor. But the good news is that almost everyone has a half-match. KeAndra shares how her successful transplant at Johns Hopkins, under the care of Dr. Robert Brodsky, transformed her life—and why this option could bring hope to so many others living with SCD.

If you'd like to learn more about this procedure, visit hopkinsmedicine.org/transplant/programs/bone-marrow.

And stay tuned for a future episode featuring Dr. Robert Brodsky himself, where he'll discuss the latest research and explain who makes the best candidates for a half-matched bone marrow transplant.

Imagine a place where kids facing unique health challenges can just be kids. A place filled with laughter, friendship, and adventure, where medical needs for children with sickle cell disease are understood and met with expertise and compassion. That's exactly what Super Campers Always provides. Camp dates for 2025 are July 6-11.

We'll be talking with Lulu Moeller, Director of Recreation Center & Youth Services with Melwood Community Services. They will share the inspiration behind this unique camp, the impact it has on campers and their families, and how it creates a supportive and empowering environment for these incredible young people

Blood, Sweat, and Cells: Real Talk about SCD is a podcast that provides in-depth, educational information about sickle cell disease (SCD). Each episode features interviews with patients or family members, doctors, and researchers who share their insights and experiences living with and treating this chronic condition. Our primary aim is to educate and advocate for patients with SCD and help them live their best quality of life.

We all want to take charge of our health, and with new technology, there are more tools than ever to help us manage it. But sometimes, the greatest gains come from something more human: connection. For people living with chronic health conditions like sickle cell disease, the healthcare system can sometimes feel impersonal and focused solely on the physical aspects of the illness.

In this episode, we're diving into a vital aspect of well-being that goes beyond medical charts and treatment plans: the power of peer support. We'll explore how connecting with others who understand your journey can make a profound difference in living with sickle cell disease. Guests: Donisha Holley, Social Worker and Support Group Organizer from the Inova Adult Sickle Cell Center, and Sickle Cell Warrior Sunday Coleman.

Discover the incredible story of a young man and his bone marrow transplant experience. In this episode, we hear from a courageous young man and his supportive father as they recount their transformative journey through a bone marrow transplant that cured his sickle cell disease. Despite facing numerous obstacles and enduring many hardships, their unwavering determination led to a successful outcome. Now, they share their triumphant story of hope, perseverance, and ultimate happiness.

🎧 Listen now to be moved by their tale of overcoming adversity and achieving medical miracles. Don't miss this inspiring episode!

#Podcast #BoneMarrowMiracles #SickleCellAwareness #MedicalBreakthroughs #FamilyStrength #Inspiration

On this edition of Blood, Sweat and Cells: Real Talk About Sickle Cell Disease,

We delve into the unique challenges women face when managing sickle cell disease, from menstrual issues to fertility concerns. Join us as we have a candid conversation with Dr. Sheinei Alan, an expert in sickle cell disease and its impact on women's health.

Discover what you need to know about pregnancy complications, genetic counseling, and optimizing the chances of a healthy pregnancy and childbirth. We'll also explore the emotional and psychological well-being of women living with sickle cell disease and discuss specific concerns for older women.