The Sickle Cell Podcast

Latest Episodes:

The Sickle Cell Care Landscape in 2026 | Tough Conversations about Sickle Cell Disease - Episode 2 Oct 13, 2026

Show notes

Where does sickle cell care and treatment really stand in 2026?

In the second episode of our Tough Conversations about Sickle Cell Disease series, our panelists take an honest look at today’s care and treatment landscape. Dr. Halimat Olaniyan explains how the conversation is shifting from pain to fatigue, and why measuring something so personal remains one of research’s biggest challenges. Jimi Olaghere calls this sickle cell’s “red carpet moment,” as gene therapy brings long overdue investment into the space, while warning that progress keeps taking two steps forward and one step back when those therapies remain out of reach for most patients. Kyle Smith reminds us that two truths can exist at once: scientific progress is real, but health systems and policy have stayed largely the same, and every person with sickle cell deserves to walk into their nearest hospital and feel safe.

Moderated by Cassandra Trimnell, Founder and Executive Director of Sickle Cell 101.

Tough Conversations is a candid forum to say what usually goes unsaid, shining a light on the topics often glossed over but still very real barriers and priorities for the sickle cell community. This series is part of Sickle Cell 101’s Community Educational Initiatives program.

Historical Progress | Tough Conversations about Sickle Cell Disease - Episode 3 Oct 13, 2026

Show notes

Has anything in sickle cell care actually been fixed?

In the third episode of our Tough Conversations about Sickle Cell Disease series, our panelists look back at the historical problems in sickle cell and ask what has truly changed. Kyle Smith reflects on his time working at a children’s hospital, where health inequities between floors were impossible to miss, and why sickle cell finally drawing funding and attention matters. Dr. Halimat Olaniyan pushes back on the word “fixed,” pointing instead to the shrinking stigma, a new generation sharing their stories openly, and a life expectancy that has climbed from 30 to 50, 60 and beyond, bringing new challenges for adult care. Jimi Olaghere highlights how much public awareness has grown, from people not knowing what sickle cell is to seeing it represented on national TV. And Dr. Amy Cox, drawing on her background as a historian and her experience as a parent, talks about the lasting impact of medical mistrust, and how it shapes clinical trial participation and the future of treatment.

Moderated by Cassandra Trimnell, Founder and Executive Director of Sickle Cell 101.

Why Sickle Cell? | Tough Conversations about Sickle Cell Disease - Episode 1 Oct 13, 2026

Show notes

What brings someone to sickle cell disease, and what keeps them fighting for change?

In the first episode of our Tough Conversations about Sickle Cell Disease series, four thought leaders driving progress in the sickle cell space share their “why.” Dr. Amy Cox talks about finding the community through adoption and becoming an advocate for her son. Jimi Olaghere shares how a gene therapy clinical trial, now known as Casgevy, transformed his life, and why he now works in research labs to make it accessible to every patient who needs it. Kyle Smith reflects on growing up with sickle cell in Philadelphia, the losses that shaped his journey, and co-founding the Crescent Foundation. Dr. Halimat Olaniyan explains how one nurse changed the way she saw her diagnosis and led her to medicine, where she is a patient, a provider and a researcher.

Moderated by Cassandra Trimnell, Founder and Executive Director of Sickle Cell 101.

What Good Care Looks Like for Children w/Sickle Cell: Puberty, Mental Health and Growing Up Sep 29, 2026

Show notes

When should conversations about puberty and mental health start, and what should your child know before leaving pediatric care?

In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob talks about growing up with sickle cell disease, from delayed puberty and early sexual and reproductive health conversations, to how mental health is screened in kids and teens, to the key things every young adult should know before transitioning to adult care (genotype, baseline hemoglobin and medications). She also shares her advice for parents raising a child with sickle cell, and a message for the young people living with it.

Dr. Jacob is the Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders and Co-Director of the Lifespan Sickle Cell Program at Indiana University.

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Agios, Beam Therapeutics, and Pfizer.

What Good Care Looks Like for Children w/Sickle Cell: Milestones, Shared Decision-Making and the ER Sep 22, 2026

Show notes

What should parents watch for at home, and when is it time to go straight to the ER?

In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob walks through what good care looks like for children with sickle cell disease, from shared decision-making as kids grow, to the red flags that mean it's time to seek care right away (fever, an enlarged spleen, priapism), to what a strong ER experience should look like for your child.

Dr. Jacob is the Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders and Co-Director of the Lifespan Sickle Cell Program at Indiana University.

Thank you to our Care and Treatment 101 sponsors: Agios, ⁠Beam Therapeutics⁠, and ⁠Pfizer⁠.

What Good Care Looks Like for Children w/Sickle Cell: Screenings, Labs, and What to Track Sep 15, 2026

Show notes

What does good care actually look like for kids with sickle cell disease? Part 2: Screenings, Labs, and What to Track

In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob dives into the screenings and labs every family should know. She covers why transcranial Doppler stroke screening is non-negotiable, why penicillin remains a critical preventative measure, emerging neurocognitive screening for young children, and organ-function checks that evolve as your child grows. She also breaks down the key labs to track over time, including hemoglobin, white blood cell count, platelet count, MCV, and reticulocyte count, so parents can better understand what's typical for their child and what's not.

Dr. Jacob is the Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders and Co-Director of the Lifespan Sickle Cell Program at Indiana University.

Thank you to our Care and Treatment 101 sponsors: Agios, Beam Therapeutics, and Pfizer.

What Good Care Looks Like for Children w/Sickle Cell: First Steps and Medical Home Sep 08, 2026

Show notes

What does good care actually look like for kids with sickle cell disease?

In this episode of our What Good Care Looks Like for Kids with Sickle Cell series, pediatric hematologist Dr. Jacob breaks it down. She covers what to do the moment you get the diagnosis, building your child's medical home, and putting together the full care team, from specialists to social workers to school support.

Dr. Jacob is the Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders and Co-Director of the Lifespan Sickle Cell Program at Indiana University.

Thank you to our Care and Treatment 101 sponsors: Vertex, Chiesi, Pfizer, and Medunik.

Sickle Cell + Blue Therapy Aug 31, 2026

Show notes

This episode features Damika “Dami” Jones from Netflix’s Blue Therapy. Dami and her husband, Jermaine, faced a deeply personal decision involving sickle cell disease. She shares the story behind their decision and reflects on how her sister’s experience living with sickle cell has inspired and shaped her.

Part 4: What Good Care Looks Like for Adults With Sickle Cell Disease – Sickle Cell Research Jun 09, 2026

Show notes

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on the evolving landscape of sickle cell research and data collection.

Dr. Kanter walks through the latest drug development approaches, such as fetal hemoglobin induction and reducing cell adhesion, while highlighting why safe data sharing through national registries is absolutely essential to advancing personalized treatments for the community.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the ⁠National Alliance of Sickle Cell Centers⁠ (NASCC).

This episode is part of Sickle Cell 101's Research 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Research 101 sponsors: ⁠⁠Agios, Pfizer⁠, and ⁠Beam Therapeutics.

Part 3: What Good Care Looks Like for Adults With Sickle Cell Disease – Treatment Options Jun 09, 2026

Show notes

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on navigating treatment options and disease modifiers.

Dr. Kanter breaks down the most prominent medications and therapies available today, including hydroxyurea, crizanlizumab, L-glutamine, and blood transfusions, explaining how patients and providers can work together to personalize care and find the best treatment path.

Thank you to our Care and Treatment 101 sponsors: ⁠Vertex⁠, ⁠Chiesi⁠, ⁠Pfizer⁠, and ⁠Medunik⁠.

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