by Suman Gupta
BENGALURU, DECEMBER 04, 2023 – Thalassemia, a genetic disorder affecting hemoglobin, presents a significant health challenge in India. With the world’s largest population of Thalassemia Major children, ranging from 1 to 1.5 lakhs, and around 42 million carriers of the beta thalassemia trait, the country is struggling with a substantial burden of this condition. Thalassemia was included under the Person with Disability Act as it is a lifelong disease and one where constant care and monitoring are required.
As the most prevalent genetic disorders globally and in India, hemoglobinopathies, particularly Thalassemia Major, require focused attention. Thalassemia patients are mostly children who go through painful blood transfusions for several years. Continuous blood transfusions and iron chelation therapies have their challenges and risks for the patients. The implication of continuous blood transfusion and other therapies impacts the patient and their families and has a huge social and economic burden on the nation. Guidance related to treatment, financial support, and planning are the most critical factors affecting access to transplantation in India. To combat this challenge, DKMS BMST Foundation India has come up with a Thalassemia Programme for such patients.
Dr. Sunil Bhat, Director and Clinical Lead Pediatric Hematology, Oncology, and Blood and Marrow Transplantation at Narayana Health Group of Hospitals, said, “In view of International Day of Persons with Disability, it’s crucial to spotlight the challenges faced by Thalassemia patients in India. India is called the Thalassemia Capital of the World, as every year, more than 10,000 children are born with this genetic disease. Addressing the Thalassemia challenge in India requires a comprehensive approach, and stem cell transplantation is a cornerstone in this endeavor. It offers a real chance at a healthier life, disrupting the course of this genetic disorder and bringing newfound hope to individuals and their families. Thalassemia is a preventable genetic disorder, and prevalence has been brought down drastically in many countries with effective prevention strategies.”
Patrick Paul, CEO of DKMS BMST Foundation India, said, “The DKMS-BMST Patient Funding Programme and the DKMS-BMST Thalassemia Programme, integral to the DKMS mission, strive to enhance accessibility to transplantation for underprivileged patients in India. Collaborating with local NGOs and transplantation clinics, the Thalassemia program organizes events facilitating free HLA typing for pediatric patients and their siblings. DKMS Germany covers the associated costs. This initiative extends support to cases without matching siblings, aiding in an unrelated donor search. Since 2018, over 14,800 Thalassemia children and family members have received free HLA typing, leading to 345 successful transplants and offering a transformative impact on their diagnostic accuracy and potential for stem cell transplantation.”
In the battle against Thalassemia, survivor Gurnaz Kaur, diagnosed in 2013, was struggling with monthly transfusions and Iron Chelations; her parents sought a lasting solution. Consulting Dr. Joseph John from CMC Ludhiana, they embraced the hope of a blood stem cell transplant. Gurnaz, part of DKMS-BMST’s Thalassemia program, found a perfect match in her elder brother. The transplant, facilitated by CMCL and DKMS-BMST, unfolded a new chapter for her. Two years post-transplant, Gurnaz Kaur now revels in a healthy life, a testament to the significant impact of the program on her well-being.
The life of Gurnaz Kaur and patients like her are true inspirations. DKMS-BMST works with 18 partners across India, like CMC Ludhiana and Narayana Health, to name a few, to continue the mission of supporting more patients under the Thalassemia program. With a vision to identify a matching donor within the family as well as support unrelated donor searches for patients who do not find a suitable match within their family.
The UN designates December 3rd as the International Day of Persons with Disabilities and aims to raise awareness and understanding of various disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities. Thalassemia, as a disability, can be cured with a stem cell transplant, but there is only a 1 in a million chance that someone comes up as a match for a patient, and Indian patients mainly require an Indian tissue match. Blood stem cell donation is a completely safe process, and more and more young Indians need to come forward and register as potential donors.
