BENGALURU: Thalassemia patients in the city are disappointed with a recent notification that spells out how the extent of disability for patients is calculated. They are unhappy specifically with a ‘scoring system’ which they say is unfair to patients. Patients argue that since the disease is a genetic disorder that progresses with time, issuance of a disability certificate should not be based on whether they have organ failure or how high their iron content is.
They want all patients, irrespective of how many blood transfusions they get, to be considered 100 per cent disabled. Thalassemia is an inherited blood disorder characterised by less oxygen-carrying protein (haemoglobin) and fewer red blood cells in the body than normal. In April last year, the government enacted the Rights of Persons with Disabilities Act 2017 that increased the disability categories from seven to 21. This included blood disorders too like haemophilia, sickle cell anaemia and thalassemia. But the guidelines or rules to implement the law were worked out earlier this month.
The patients are disappointed over the scoring system that treats them the same as physically challenged individuals. Gagandeep Chandok (34) has been a thalassemia major all his life. A member of Thalassemia and Sickle Cell Society of Bangalore, he said, “The notification says if you have HIV or organ failure then you can be certified 100 per cent disabled and only then can we get all benefits. They are not understanding that thalassemics are blood dependent and require complete support.”
India is the thalassemia capital of the world with 40 million carriers and 1,00,000 plus thalassemia majors taking blood every month. Patients also require costly iron chelation medicines and other supplements plus lab tests every month to stay alive. Every year 10,000 children with thalassemia major are born in India. Of these 50 per cent die before the age of 20 due to poverty. Gurinder Singh Chandok, president of Thalassemia and Sickle Cell Society of Bangalore, said, “You can’t be cured of Thalassemia.
It is lifelong unless one undergoes gene therapy that we are still trying for. How can we get certificates every year? An infection may be there this year and not be there next year. They require blood transfusions twice or thrice a month. They require pumps to be put in the stomach 4-5 times a week to pump out the iron.” Chandok said protests would be organised in all major Indian metros if the guidelines are not corrected.
HAUNTING FIGURES
40 million carriers
1,00,000 plus thalassemia majors taking blood every month.
10,000 Every year children with thalassemia major are born in India