Chandigarh yet to wake up to thalassemic patients’ needs

CHANDIGARH: While the adjoining states of Haryana and to some extent Punjab support the cost of the medicines for thalassemia, Chandigarh, which has 500 such registered patients have no such monetary relief.

Reena Das, department of haemotology, PGI said, “If in a couple both are beta thalassemic carriers, then every pregnancy has 25% chance of a baby having thalassemia major. So, we advise people, especially Punjabi women in whom the incidence is 4%, to go for screening before marriage.” She said, “The national average is 3-4% while the frequency is more in some communities. For instance, of the 4% in Punjabi women, 50% are Jat Sikh as they marry within the same caste.”
Rajinder Kalra, general secretary, Thalassaemic Children Welfare Association, PGI, said, “We daily see 22-23 such patients who come here for blood transfusion. Those who are from Haryana get free iron chelation drugs, which is free in Punjab only for school-going children. Despite our fight for over several years, there is no such support in Chandigarh.”
Though these medicines are given to remove iron from being overloaded after blood transfusion, the overall cost of the treatment for thalassemia runs between Rs 1,500 to Rs 10,000 a month. “There have to be follow ups, which require a number of blood tests to be conducted. If this disorder inflicts a poor person, he will be hit economically,” said Kalra.
The journey for those who come to PGI for blood transfusion seems to be unending as this is the only affordable treatment. Yashal(26) from Patiala has been coming to the PGI since he was one year old for blood transfusion. He is introduced by his family members as the boy who gets blood transfused. “I am so used to this introduction now. But after my medicines and blood transfusion, I feel fit and able to work normally,” said Yashal.
But for Sajjan Khattar(28) from Ambala, the journey has not been easy. “My blood group is A2-positive, which is not known to most. It used to take me several days to get this blood type for transfusion. Also, as an interior designer my work is stressful. So I need blood transfusion after every 15 days,” said Sajjan.