“NEED OF THE HOUR IS TO HAVE AN EFFICIENT, COUNTRY WIDE PROGRAM FOR PREVENTION AND CURE OF THALASSEMIA”
Mumbai: World Thalassemia Day which is observed on May 8 every year, marks attention towards Thalassemia, a health condition characterized by abnormal formation of hemoglobin. Often, a blood stem cell transplant is the most critical form of treatment for a Thalassemia patient. Hence, this World Thalassemia Day, DKMS BMST Foundation India, urges people across India to register themselves as a potential blood stem cell donor and become a lifesaver.
DKMS BMST Foundation India is a non-profit organization dedicated to the fight against blood cancer and other blood disorders, such as thalassemia and aplastic anemia. Our aim is to improve the situation of patients suffering from blood cancer and other blood disorders in India and throughout the world, by raising awareness about blood stem cell transplantation and registering potential blood stem cell donors. By doing this DKMS-BMST provides patients in need of a blood stem cell transplant with a second chance at life.
DKMS-BMST is a joint venture NGO of two reputed non-profit organizations: BMST (Bangalore Medical Services Trust) and DKMS, one of the largest international blood stem cell donor centers in the world.
Thalassemia is an inherited disorder where the body produces reduced quantity of blood. In the current Indian context, every year 10,000 new cases of Thalassemia are diagnosed. Parents, who are usually asymptomatic, are the carriers of this disease and have a 25% chance of passing this disease to their children.
Dr. Sunil Bhatt, Director and Clinical Lead, Pediatric Hematology, Oncology and Blood & Marrow Transplantation, Narayana Health, Bengaluru said “Considering the cases of Thalassemia in India, the disease burden is significant and requires immediate attention. A blood stem cell transplant is the only curative intervention available for a transfusion free status with a normal life span for Thalassemia patients. Stem cells are collected from blood of the donors and transplanted into the Thalassemia patients after their bone marrow has been destroyed. Only 25-30% patients who need transplants have a fully HLA matched donor in their family, rest of them depend on an unrelated donor. This is where blood stem cell registries like DKMS-BMST come into play by enrolling adult healthy unrelated donors.”
Blood stem cell registries are the nerve centers of unrelated donor transplant process that counsel donors, enroll donors, get their HLA typing done, facilitate search of the donors and later facilitate the blood stem cell collection and transplant. Hence, it is important to strengthen these registries and have maximum donor recruitments. “Need of the hour is to have an efficient, countrywide program for prevention of Thalassemia, as the magnitude of this health condition both economically and socially is huge,” added Dr. Sunil.
Talking about this year’s World Thalassemia Day theme of “Universal access to quality Thalassemia healthcare services: Building bridges with and for patients”, Patrick Paul, CEO, DKMS BMST Foundation India says, “Thalassemia patients are mostly children who go through painful blood transfusion for several years in their life. Blood transfusions have its challenges and risks for the patients. A successful blood stem cell transplant depends on a perfect HLA tissue match. Patients and donors of Indian origin have unique HLA characteristics that are severely under-represented in the global database, which makes the probability of finding a suitable donor even more difficult. Indian patients mainly require an Indian tissue match. This calls for increased awareness and need to encourage many more people in India to register as a potential blood stem cell donor.”
“The COVID-19 outbreak has prompted people to stay indoors due to which we are not able to conduct blood stem cell donor registration drives. To bridge this gap and continue our fight against blood cancer, we urge people across India to register themselves as potential blood stem cell donors through the online registration link which we recently launched. By doing this, the planned-on ground registration drives can take place digitally instead and the database of potential stem cell donors can increase” added Patrick.
DKMS has facilitated around 85,000 second chances at life globally. DKMS-BMST at present has over 42,000 registered potential blood stem cell donors and has given a second chances at life to 28 patients. This number will increase considerably over the years with the aim of finding a matching donor for every patient in need.