The Sickle Cell Podcast

Gene therapy is often called a cure for sickle cell disease, but is that really the right word?

In the eighth episode of our Tough Conversations about Sickle Cell Disease series, our panelists unpack what “cure” actually means, and who gets to define it. Dr. Halimat Olaniyan shares why her first thought after the approvals was access, why gene therapy doesn’t meet her own definition of a cure, and why patients need honest conversations about the risks, not just hopeful ads. Jimi Olaghere reflects on an outcome so life-changing it feels like a cure, from summiting Kilimanjaro to training for the London Marathon, while explaining why he still avoids the word publicly as he continues to produce sickle cells. Kyle Smith, who wasn’t a candidate for gene therapy, encourages warriors to stop chasing a “cure” and instead define their own North Star for treatment. Dr. Amy Cox closes with a reminder that if a therapy isn’t accessible to everyone who needs it, it isn’t fully a cure.

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.

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

Beyond new treatments, what does good sickle cell care actually look like, and how far are we from it?

In the final episode of our Tough Conversations about Sickle Cell Disease series, our panelists share what good care means to them and leave us with their key takeaways. Kyle Smith opens up about the day his hemoglobin dropped to 3.3, and why no one should need to know a hospital CEO to get the care that saves their life. Dr. Halimat Olaniyan explains why the answer isn’t only more specialists, but every provider caring about sickle cell, so patients can receive the same quality of care at any hospital in the country. Jimi Olaghere reflects on a cardiac arrest that could have been prevented if his care team had listened, and why good care starts with trusting the patient. Dr. Amy Cox shares why, as the mom of a 15-year-old, the transition from pediatric to adult care is one of her biggest fears. The panel closes with a call for more treatment options, for following your passion in the space, and for staying immovable about what you know to be true about your body.

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. Learn more at sc101.org.

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

Pain is the hallmark of sickle cell disease, but is it the only thing research should be measuring?

In the seventh episode of our Tough Conversations about Sickle Cell Disease series, our panelists rethink what clinical trials should track, and who gets left out of them. Jimi Olaghere shares what patients have told him while designing trials: many could tolerate the pain if they weren’t so tired. Dr. Halimat Olaniyan explains why lab values that matter to regulators don’t always reflect how patients actually feel, why surveys fall short, and how involving patients before a trial is even designed could lead to better outcomes. She also points to a hard truth: the support systems that help people thrive are often required to qualify for trials like gene therapy, leaving behind those who need them most. Kyle Smith calls for hemoglobin to be a more consistent endpoint and for research to look at how community and social networks shape health outcomes. Dr. Amy Cox raises the question of whether insurance priorities are driving what gets measured, and why preventing organ damage should be a priority, since it is already disqualifying people from curative therapies.

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.

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

What makes sickle cell pain so different from anything else?

In the sixth episode of our Tough Conversations about Sickle Cell Disease series, our panelists open up about what sickle cell pain really feels like and why it is so hard to understand from the outside. Dr. Halimat Olaniyan compares sickle cell pain to snowflakes, unique to every person, and describes her own pain as a pinch that keeps getting deeper and never lets go. Jimi Olaghere shares how indescribable his pain was before gene therapy, and highlights the mental pain of watching life pass you by. Kyle Smith talks about pain as a universal connector, how isolating the disease can feel, and how it takes away your choices. Dr. Amy Cox shares the caregiver’s perspective, from watching her son go from laughing to writhing in pain in a matter of minutes to learning to live with constant unpredictability.

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.

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

Are sickle cell’s biggest challenges rooted in systemic racism, or in the complexity of the disease itself?

In the fifth episode of our Tough Conversations about Sickle Cell Disease series, our panelists agree the answer is both. Jimi Olaghere reflects on how systemic racism is a problem no single industry can solve on its own, and why it continues to hold sickle cell back around the world. Dr. Halimat Olaniyan shares her experience being labeled as drug-seeking in the ER, why biased systems and metrics need to be rebuilt, and how much science is still learning about a disease that affects every part of the body. Kyle Smith makes the case for keeping racism in medicine and the complexity of the disease in two separate buckets, so each can be addressed on its own terms. Dr. Amy Cox closes by reminding us that more than one thing can be true at once.

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.

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

Why has sickle cell research moved so much slower than research for other diseases?

In the fourth episode of our Tough Conversations about Sickle Cell Disease series, our panelists agree on one answer: money. Dr. Amy Cox explains how historic barriers like redlining and discrimination have limited the wealth base that private foundations rely on, and why diseases like cystic fibrosis have been able to raise far more for research. Dr. Halimat Olaniyan talks about the need to move beyond preaching to the choir and get the right decision makers to care about sickle cell. Jimi Olaghere breaks down why sickle cell sits in an unusual place as a rare disease in the US but one of the fastest growing genetic disorders worldwide, and why getting therapies to patients globally requires a new way of thinking. Kyle Smith, drawing on his background in philanthropy, shares why the community needs influential voices to help break out of the echo chamber.

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.

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

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.

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.

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

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.

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

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.

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.

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

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.