JUNE 19, 2023: Sickle cell disease (SCD) poses significant challenges for patients in India, as the availability of curative stem cell transplants remains limited. With only a few centres offering this life-saving procedure, patients face barriers due to limited access to care and a lack of awareness among the public about stem cell donation. The absence of specialized facilities and expertise further compounds the situation, leaving patients with few options. Experts nationwide are stressing the urgent need for heightened awareness, advocacy, and collaboration among stakeholders to improve care and outcomes for SCD patients in India.
India ranks second globally regarding the number of people affected by sickle cell disease (SCD), with over 20 million diagnosed patients. Tragically, 50-80 percent of children with SCD in India struggle to reach age five. Each year, around 150,000 to 200,000 children are born with sickle cell disease in India, facing chronic pain, anemia, organ damage, increased susceptibility to infections, stroke, and a shorter life expectancy. The rigid, sickle-shaped cells can block small blood vessels, leading to severe complications due to disrupted oxygen supply.
A stem cell transplant is a beacon of hope and a promising treatment option for individuals battling sickle cell disease. However, the limited availability of specialized facilities, the unavailability of stem cell donors, and the dearth of awareness surrounding this life-saving treatment pose significant challenges.
Dr. Santanu Sen, Consultant, Pediatric Hematology, Oncology, and Stem Cell Transplantation at Kokilaben Hospital, Mumbai, said, “A stem cell transplant is a promising treatment option for SCD that involves replacing the patient’s bone marrow, which produces red blood cells, with healthy bone marrow from a matched donor. The procedure can cure patients of SCD and alleviate symptoms such as pain, infections, and organ damage. However, a stem cell transplant is a multifaceted procedure that requires specialized infrastructure, trained personnel, and meticulous post-transplant care.”
Dr. Sunil Bhatt, Director and Clinical Lead Pediatric Hematology, Oncology, and Blood & Marrow Transplantation, Narayana Health, Bengaluru, said, “Sickle cell disease is a debilitating condition that can cause chronic pain, organ damage, and other serious health consequences. Patients with SCD in India face several challenges, including limited access to care and a lack of awareness among the general public and healthcare professionals. Moreover, due to the dearth of facilities and expertise, very few centers in India offer stem cell transplant as a treatment option for SCD, which is currently the only curative approach available.”
The lack of suitable blood stem cell donors remains a significant hurdle for those needing life-saving transplants, emphasized Patrick Paul, CEO, DKMS BMST Foundation India. “Sickle cell anemia leads to a substantial number of deaths in India, with 10-15% of patients succumbing to the disease before age 5. On World Sickle Cell Day, raising awareness about the challenges individuals face fighting this disease is crucial. At DKMS-BMST, we believe in the potential of stem cell donation, providing hope and a chance at life for those affected by Sickle Cell Disease. We urge more individuals to join our cause, as each new registration brings hope to those desperately seeking a life-saving stem cell transplant,” added Patrick.
Dr. Esha Kaul, Associate Director – Medical Oncology (Hematology, Hemato-Oncology, BMT), from Max Super Specialty Hospital, Delhi, explained the challenges related to awareness about stem cell transplant for Sickle Cell Disease, stating, “Stem cell transplant can be a life-saving procedure for Sickle Cell Disease, but its availability and accessibility in India are still limited. Patients often encounter obstacles like financial constraints, geographic distance, and the absence of a suitable donor, preventing them from receiving the necessary care. To enhance the care and outcomes for SCD patients in India, we require increased awareness, advocacy, and collaborations among stakeholders.”
DKMS BMST Foundation India has substantially impacted the battle against blood cancer and blood-related disorders such as Sickle Cell Disease and Thalassemia by registering 80,000+ stem cell donors and facilitating 90 transplants since its inception in 2019. The organization’s goal is to register many donors in India and around the world, providing a second chance at life to as many patients as possible.