Thalassemia a blood disorder considered as a disability

National Policy on Thalassemia 
  • “Can be treated with a Stem Cell Transplant
  • DKMS-BMST brings hope to Thalassemia patients by helping them in finding a matching stem cell donor”
Bengaluru, December 02, 2022:

Thalassemia is a blood disorder, which happens due to a genetic defect in the protein hemoglobin, reducing the transport capacity for oxygen in the blood. In India, every year more than 10,000 children are born with this condition. Thalassemia is a disabling condition because it leads to chronic anemia, requiring regular blood transfusions.  It is also associated with other disabling co-morbidities like organ damage, bone damage, and cardiac complications, leaving the patient struggling to lead a normal life. Thalassemia can be treated with a stem cell transplant from a human leukocyte antigens (HLA) matched blood stem cells from a related or an unrelated donor.

Dr Govind Eriat, Consultant Hematology, Hemato-Oncology and Bone Marrow Transplant BGS Global Gleneagles Hospital, Bengaluru said “India being the thalassemia capital of the world, has a huge burden of the disease and records over 10,000 new cases every year. People with thalassemia may need lifelong blood transfusions and other therapies (like iron removal medications) which has a detrimental effect on the quality of life of the patient. Regular blood transfusion, checkups, diet and other restrictions reduces the quality of life and at the same time, being prone to various other health conditions has a debilitating effect on the physical and mental health of the thalassemia patient, leaving them disabled from leading a normal life. Some thalassemia patients need transplant, that gives them freedom from recurrent blood transfusions.”

In 2016, Government of India recognized Thalassemia and other rare blood disorders as a disability under The Rights of People with Disability Bill passed by the Parliament of India in December 2016.

Patrick Paul, CEO DKMS BMST Foundation India “DKMS-BMST has been at the forefront of organizing support to thalassemia patients by helping them find matching donors from within the patient’s family or unrelated donors through the global database of potential donors. To support the cause DKMS has initiated DKMS-BMST thalassemia programme. Under this programme, DKMS-BMST collaborates with NGOs and transplantation clinics to organize thalassemia camps.  During the camps, pediatric thalassemia patients and their family members give buccal swab samples for HLA typing.

The swab samples are then sent to DKMS laboratory in Germany and clinical matching reports are provided. DKMS also helps where there are no matching stem cell donors for the patients in their family, by finding unrelated donor in the international stem cell donor data base. Till now DKMS-BMST has tied up with 18 partners, which include 11 Transplant centers, 1 donor registry and 6 NGOs in India.”

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In 2022, DKMS-BMST and its Thalassemia partners conducted Thalassemia camps in Karnataka, Bihar, Rajasthan, Andhra Pradesh, Telangana, Punjab, Maharashtra, Madhya Pradesh, Odisha, Tamil Nadu, Kerala, Chhattisgarh, Goa and Delhi & Neighboring countries like Bangladesh and Sri Lanka and collected over four thousand swab samples from patients and their families and their efforts has benefited 1288 thalassemia patients.”

“Matching of human leukocyte antigens (HLA) between the patient and donor is required for a successful blood stem cell transplant. But in India, only 30% of the patients are able to find a matching donor within their own family and rest 70% are depended on an unrelated donor. However, Indians only account for 0.04% of total listed unrelated donors globally due to lack of awareness and prevailing myths around the stem cell donation process,” added Patrick.

December 3rd is designated by UN 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 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 to register as potential donors.

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