What Is Thalassemia?
The Thalassemics are a group of inherited (passed down through families) blood disorders that share in common one feature, the defective production of hemoglobin, the protein that enables red blood cells to carry and deliver oxygen. It involves decreased production of normal adult hemoglobin (Hb A), the predominant type of hemoglobin, from soon after birth until death.
Prevention is better than cure
Thalassemia can be prevented by:
- Population Screening: It is estimated that about 8-12% population carries thalassemia gene with no symptoms of the disease. This requires simple blood test of population at large to detect the carriers .Once identified the carriers are counseled about the disease and how they can help prevent the disease.
- Detection – Prenatal diagnosis by DNA based method using chorionic villi sampling, This specialized test is done in 10-12 weeks of pregnancy, as there are 25% chance of fetus to be affected in every pregnancy if both parents are carrier / thalassemia minor.
- 100,000 babies are born with severe forms of the disease.
- About 12,000 babies are born annually in India alone.
- 80-90 million people in the world carry the Beta thalassemia trait alone!
- The incidence of thalassemic carriers in India is between 8-12%.
- About 5000 thalssemic children are registered in Rajasthan while unregistered number might be much higher.
- Pallor Weakness, irritability
- Poor appetite
- Slow growth
- Characteristic facial features
- Enlarged Liver & Spleen
- At risk of multiple organ dysfunction, like thyroid, pancreas
- Most common causes of death are heart failure or infections
- Most of them die between 10-20 years of age
Quality of life of thalassemic children
- Regular Blood transfusion every 1 to 3 weeks (children are always at risk of blood transmitted diseases)
- Disease itself and medication hamper physical growth of the child.
- Restrictions on eating commonly consumed fruits and vegetables.
- Decreased life span.
Treatment of thalassemic children
-10-15% of units of blood per day from blood banks are released for Thalassemics alone.
-Cost of Blood transfusion, investigations and medications per child per year is a minimum of Rs 1.2 lac to 1.5 lac.
-Considering the life span to be around 20 years, the financial burden per child is anywhere between Rs 22 to 28 lacs!
Bone marrow transplant (BMT) is the only viable cure currently:
SEAIT is the only center in India which is working solely for Thalassemia. Cost of each BMT is approximately Rs 8 to 10 lac for a smooth clinical course of 60 days of hospitalization.
Comparative BMT Cost:
Patients in countries like Singapore, Malaysia, Brazil, Mexico, India, Thailand, Hong Kong and China spend anything between US$ 20,000 to 60,000 per BMT while average cost in United States, United Kingdom, Germany, France and other developed countries is as much as US$ 10,00,000 to 50,00,000, based on type of hospital. In comparison BMT at SEAIT is only US$12307 to 15384!!
Expansion of SEAIT:
To cater to the increased need of Bone Marrow Transplant for thalassemia there was a need of expansion and the center expanded from three transplant units in February 2012 to nine transplant units in October 2014 with help from private and corporate donations. In view of the massive disease burden, there is scope of further expansion.
Total number of transplants done so far is 60 (between February 2012 to March 2017), with a success rate of 86.6% Thalassemia free survival.