Sickle Cell Disease Psychosocial Support and Advocacy

Program Chair(s)

• 

  Yvette Tanhehco, MD, PhD, MS, CABP(AABB)

  Associate Professor of Pathology and Cell Biology, Medical Director of Cellular Therapy Laboratory
  Department of Pathology and Cell Biology, Columbia University Irving Medical Center
  New York, New York, United States

  Disclosure(s): No financial relationships to disclose

  PDF

Speaker(s)

• 

  Yvette Tanhehco, MD, PhD, MS, CABP(AABB)

  Associate Professor of Pathology and Cell Biology, Medical Director of Cellular Therapy Laboratory
  Department of Pathology and Cell Biology, Columbia University Irving Medical Center
  New York, New York, United States

  Disclosure(s): No financial relationships to disclose

  PDF
• 

  Adrienne Shapiro (she/her/hers)

  Founder & CEO
  Axis Advocacy
  Pasadena, California, United States

  Disclosure(s): No financial relationships to disclose

  PDF

Sickle cell disease (SCD) is a beta hemoglobinopathy caused by a single point mutation that causes a chronic debilitating disease characterized by recurrent pain crises and end organ damage. Various treatment modalities are available such as disease modifying drug therapies, red blood cell transfusions, and stem cell transplantation. In December of 2023, the FDA approved two gene therapies, Casgevy and Lyfgenia, that utilize the patient’s own hematopoietic stem cells (HSCs) as the starting material for genetic modification and subsequent autologous transplantation. The list price for Lyfgenia is set at $3.1 million, while Casgevy will cost $2.2 million, making gene therapies for sickle cell disease one of the most expensive treatments worldwide. Access to this therapy will become a challenge for a lot of patients in the absence of insurance coverage. The successful management of patients with SCD, however, goes beyond medical treatment. Patients who have adequate emotional, mental, and spiritual support have shown a better quality of life. Individuals with chronic diseases have a higher risk of mental disorders which are exacerbated by social/relationship problems. Patients with SCD with severe depressive symptoms experience poorer pain outcomes, lower quality of life, and increased risk of opioid misuse. Participation in religious practices facilitates coping with a chronic illness such as SCD. It provides social support and hopefulness that can help alleviate depressive symptoms. This education session will focus on advocacy for patients with SCD in the era of gene therapy and discuss the benefits of psychosocial support.

CABP CE Eligible