India grapples with sickle cell disease (SCD), a severe genetic disorder that affects millions of people in the country. Despite the critical nature of this disease, access to curative treatments such as stem cell transplants is limited. Only a handful of centers offer this treatment, and the lack of awareness about stem cell donation aggravates the situation. Experts across the nation are calling for increased awareness, advocacy, and collaboration among stakeholders to enhance the care and outcomes for SCD patients in India.
India is ranked second globally in terms of the number of people affected by SCD, with over 20 million diagnosed patients. Alarmingly, 50-80% of children diagnosed with SCD in India do not reach the age of five. SCD affects the red blood cells, causing them to become rigid and sickle-shaped, which can block blood vessels and disrupt the supply of oxygen to various parts of the body. This leads to severe complications such as chronic pain, anemia, organ damage, and an increased susceptibility to infections.
Stem cell transplants present a glimmer of hope in this grim scenario. According to Dr. Santanu Sen, a consultant at Kokilaben Hospital in Mumbai, “A stem cell transplant involves replacing the patient’s bone marrow with healthy bone marrow from a matched donor. This can cure patients of SCD and alleviate symptoms such as pain, infections, and organ damage.” However, this treatment requires specialized infrastructure, skilled personnel, and extensive post-transplant care, which are currently limited in availability.
One of the significant challenges in availing of this treatment is the lack of suitable blood stem cell donors. Patrick Paul, CEO of DKMS BMST Foundation India, stresses the need for raising awareness about stem cell donation. He says, “Sickle cell anemia leads to a substantial number of deaths in India. On World Sickle Cell Day, raising awareness about the challenges individuals face fighting this disease is crucial. We urge more individuals to join our cause, as each new registration brings hope to those desperately seeking a life-saving stem cell transplant.”
DKMS BMST Foundation India has been instrumental in the fight against blood cancer and blood disorders like SCD. They have registered over 80,000 stem cell donors and facilitated 90 transplants since 2019. Their objective is to increase the number of donors, providing a second chance at life to as many patients as possible.
Dr. Sunil Bhatt, Director and Clinical Lead at Narayana Health in Bengaluru, highlights the importance of awareness among the general public and healthcare professionals. He points out the debilitating nature of SCD, which causes chronic pain and organ damage. With only a few centers in India offering stem cell transplants, which is currently the only curative treatment for SCD, it is crucial to build awareness and resources.
Tackling sickle cell disease in India requires concerted efforts from all stakeholders. Through increased awareness, advocacy, and collaborations, India can hope to overcome the challenges posed by SCD and improve the quality of life for millions of patients.