On a petition of sicklecell and thalasamia child victims from G Udayagiri area in Kandhamal district, the Chief Justice of Odisha High Court has issued a direction to the district Collector, Kandhamal and also Odisha State Commission for Protection of Child Rights Secretary, specifically to take up immediate appropriate action for rehabilitation, sustainable healthcare and education of the victims.
Petitioners Jeeram Pradhan, Sujat Dalabehera, Atuli Nayak and Sunati Nayak expressed deep anguish regarding the expensive, delayed and complicated process of healthcare of their children.
Besides, they alleged that they have to bear regular travel expenses from G Udayagiri area to Phulbani or Brahmapur for blood transfusion.
“We are in dark about the use of RSVY as we are not told how much amount is deducted for what purpose”, alleged Jeeram Pradhan.
The children affected by the genetic health disorders undergo a painful process of constant, physical, mental and emotional suffering even during their schooling as teachers are not aware of the seriousness of the disease and thus not sensitive to the problems of the affected children. There is no specific provision for special care of the victims in the teaching and learning process, the petitioners complained.
Due to the need of residential facility near the schools, the children are forced to cover a long distance in hilly tracts of the scheduled district and even compelled to remain absent due to sickness. Even the child care institutions and residential schools lack the minimum sensitivity based arrangements for the inmates.
Kandhamal is a scheduled district and mostly the affected belong to tribal, Dalit and other marginalised communities and BPl category. The issue was highlighted when the problem with ground reality was put forth before Health and Family Welfare Principal Secretary Pradeepta Kumar Mahapatra, Women and Child Development Principal Secretary Arati Ahuja, School and Mass Education Principal Secretary Usha Padhee and State Protection of Child Rights Secretary in January by well known child rights defender Hemant Naik.
The rate of infant and maternal mortality of Kandhamal is reported to be highest in India and more than 80 per cent of families of Kandhamal are said to be affected by different genetic health disorders. Surprisingly, the required appropriate health service mechanism is yet to be developed for the control of sicklecell and thalasamia though it is a major health issueof Kandhamal.