9b) Thalassemia and Sickle Cell Prevention Programmes. ( Need For Intervention)

Thalassemia major is one of the disease which is include and has no medicine available for. This disease is genetically driven for children from their parents, if both of them are Thalassemia Minor. Thalassemia Major children hardly lives for 10 to 15 years and they require frequent blood transfusion. Since there is no medicine or treatment available to save the affected persons, it is found very significant to prevent from inheriting this from their parents by avoiding marriages between two Thalassemia minors.

Thalassemia can be prevented by pre-marital blood tests ans awareness programmes. Ew are organizing both blood test and awareness camps at free of cost. Each test cost us around Rs. 350.00 plus staff salary, cost of Documentation and use of our existing infrastructure. Department of education government of Gujarat has made this test compulsory for all schools and colleges in Gujarat. Despite of the financial constrains, our performance graphs in the past have been always high.

Thalassemia is life threatening disorder like cancer, aids, and hepatitis but it lacks social awareness, which leads to a further increase in its spread. An estimated 250 million people in the world suffer from Thalassemia. One major difference is that it is preventable by an inexpensive test. The test costs only Rs. 320.00 per person ans results in saving Rs.30,000, of treatment cost annually in india alone. We are working for a “Thalassemia Free World” for this; we have started a model project in Gujarat. While Thalassemia affects up to 4-5% of the people. 40 million Indian suffer from Thalassemia and 10000 new case are added every year.

There are two types of Thalassemia; Minor and major. Thalassemia Minor is a carrier state and the people affected lead a perfectly normal and healthy life. It is not s disease. Yet Thalassemia major is fatal, afflicting children of parents who are both hemoglobin, leading to a gradual failure of orguns. In the absence of treatment the child dies within 1 to 8 years of age.

Treatment comprise of monthly or bi-monthly blood transfusions. This has to be coupled with the injection of iron chelating of iron chelating drug for 8 hours at a stretch, minimum 5 nightcap week. In spite of all efforts, it is not a permanent cure and child does not survive beyond the age of 20. It is equivalent to fighting a lost battle. Besides tha financial burden, the diseases takes a heavy psychological toll on the family, despite of the staggering treatment cost; the child’s life cnnot be extended beyond a few years.