Thalassemia, a dreaded disease like AIDS, is claiming 60 per cent of the one lakh children affected in the country, but very little help is forthcoming from government institutions. In contrast, non-governmental organisations are doing their best to fulfil the affected children’s needs.
In 2014, Jain Seva Samithi, Mahaveer International, Dhanvantari Blood Bank and Goutami Eye Institute of Rajamahendravaram formed a support group for children with thalassemia. According to K. Madhu, executive director of Goutami Eye Institute, the affected children need blood transfusion every 15-30 days for life.
There is virtually no cure for the disorder —the only cure is a bone marrow transplant from matching sibling. The procedure, costing Rs. 15 lakh, is beyond the reach for many. Proper management costs over Rs.1.5 lakh per year (excluding transfusion costs). “Forget costs. Today’s average age of survival is approx 25 years, which is very pathetic,” Mr. Madhu said.
Dr. Srinivasa Rao of Dhanvantari Blood Bank say the affected children need iron removal medicine (chelator called Desferal) which has to be injected over periods of 6-8 hours per day, 4-5 days a week. Also, the children run the risk of contracting needle-related diseases such as HIV/hepatitis. If blood transfusions are not regular, the affected children become vulnerable to disorder of the heart, liver, endocrine system, and osteoporosis, etc.
Mr. Madhu recalled that the Union government has identified 30 diseases under Rashtriya Bal Swasthya Karyakram (RBSK) and it is listed in Arogyasri under general medicine. “RBSK is still in the womb stage and none of the hospitals empanelled and can treat under Arogyasri are not offering the services,” he said.
All blood banks in the country are by order should be giving blood to thalassemic child free of cost and as many times as the child needs. But the agony of the family of thalassemic child continues for procurement of blood once in 20 days, said Dr. Srinivas.
Jain Seva Samiti members are arranging meetings with parents of the affected children. The Youth wing of Jain and Mahaveer organisations is getting blood tests done at subsidised price in Thyrocare, making the availability of blood at Dhanvantari Blood Bank, organisation of blood donations camps every month, medical examination of all children with haematologist, cardiology examination with the support of GSL Hospitals.
Major initiative
The major initiative was to get 47 children test for Human Leukocyte Antigen (HLA) typing to find the match the child with donor for bone marrow transplantation. Ten children got the match and are being scheduled for bone marrow transplantation.
Ten children selected for bone marrow transplantation