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/