Improving outcomes and quality of life for patients with transfusion-dependent β-thalassemia: recommendations for best clinical practice and the use of novel treatment strategies

Expert Rev Hematol. 2021 Oct;14(10):897-909. doi: 10.1080/17474086.2021.1977116. Epub 2021 Sep 15.

Abstract

Introduction: β-thalassemia is one of the most common inherited monogenic diseases. Many patients are dependent on a lifetime of red blood cell (RBC) transfusions and iron chelation therapy. Although treatments have a significant impact on quality of life (QoL), life expectancy, and long-term health outcomes have improved in recent decades through safer RBC transfusion practices and better iron chelation strategies. Advances in the understanding of the pathology of β-thalassemia have led to the development of new treatment options that have the potential to reduce the RBC transfusion burden in patients with transfusion-dependent (TD) β-thalassemia and improve QoL.

Areas covered: This review provides an overview of currently available treatments for patients with TD β-thalassemia, highlighting QoL issues, and providing an update on current clinical experience plus important practical points for two new treatments available for TD β-thalassemia: betibeglogene autotemcel (beti-cel) gene therapy and the erythroid maturation agent luspatercept, an activin ligand trap.

Expert opinion: Approved therapies, including curative gene therapies and supportive treatments such as luspatercept, have the potential to reduce RBC transfusion burden, and improve clinical outcomes and QoL in patients with TD β-thalassemia. Cost of treatment is, however, likely to be a significant barrier for payors and patients.

Keywords: beti-cel; gene therapy; iron chelation therapy; luspatercept; management guidelines; quality of life; transfusion; transfusion-dependent; β-thalassemia.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Chelation Therapy
  • Erythrocyte Transfusion
  • Genetic Therapy
  • Humans
  • Iron Chelating Agents / therapeutic use
  • Quality of Life*
  • beta-Thalassemia* / genetics

Substances

  • Iron Chelating Agents