Country-wide programme needed for prevention and cure of thalassemia

The COVID-19 outbreak has prompted people to stay indoors due to which hospitals are not able to conduct blood stem cell donor registration drives

World Thalassemia Day, Thalassemia, COVID-19, Blood stem cell transplant, DKMS BMST Foundation India, Dr Sunil Bhatt

World Thalassemia Day which is observed on 8th May every year, marks attention towards Thalassemia, a health condition characterised 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, has urged people across India to register themselves as a potential blood stem cell donor and become a lifesaver.

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.