PRESS RELEASE

HC directs for appropriate care of Kandhamal Sicklecell Victims

Phulbani, Dtd. 19.03.2014: On the petition of Sicklecell and Thalasamia child victims from the very prone G.Udayagiri area of Kandhamal district, Honble Chief Justice of Odisha High Court have issued direction to District Magistrate and Collector, Kandhamal and also the Secretary, Odisha State Commission for Protection of Child Rights, specifically to take up immediate appropriate action for rehabilitation, sustainable health care of the victims and implementation of affected friendly education through the Deputy Secretary, Odisha State Legal Services Authority, Cuttack. The natural guardians of the victims Jeeram Pradhan, Sujat Dalabehera, Atuli Nayak and Sunati Nayak in their petition expressed deep anguish regarding the expensive, delayed and complicated process of health care of their children as they are pressurized to pay in spite of their arrangement of the alternative health donors in addition to making payment for the related Pathological tests. Besides they also bear regular travel expenses from G.Udayagiri area to Phulbani or Berhampur for the blood transfusion. We are in dark about the use of RSVY as we are not told how much amount is deducted for what purpose alledges the petitioner Jeeram Pradhan. The children affected by the said incurable genetic health disorders under go through 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 provisions for the special care of the victims in the teaching and learning process. Due to need of the residential facility near by the schools the children are forced to cover a long distance in hilly tracts of the said scheduled district and even compelled to remain absent due to sickness. Even so called 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 also from the BPL category. The issue was highlighted when the problem with ground reality was put forth before the Principal Secretary Cum Commissioner, Mr. Pradeepta Kumar Mahapatra, Deptt. Of Health and Family Welfare, Ms. Arati Ahuja, Principal Secretary Cum Commissioner, Deptt. of Women and Child Development, Ms. Usha Padhy, Principal Secretary Cum Commissioner, Deptt. of School and Mass Education and the Secretary, State Protection of Child Rights in the month of January 14 by the well known Child Right Defender Hemant Naik of Kandhamal. The concerned authority expressed their serious concern and directed the Director, NHM, Bhubaneswar to take appropriate health care initiative immediately with the special focus on people based sensitization process involving the victims, parents, medical staff, local

community based organizations, teachers, anganwadi teachers and asha karmies in the process as requested in the petitions. The rate of infant and maternal mortality of Kandhamal alarmingly reported to be highest in India and more than 80% families of Kandhamal 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 the major health issue of Kandhamal. Ms. Keshamati Pradhan, veteran indigenous women leader demanded to set up a full fledged Hospital at G.Udayagiri specifically for the purpose and 70% of the estimated budget to be spent for the awareness building and developing the sensitivity amongst all the stakeholders for creation of preventive awareness and timely care in a well coordinated planned, people based approach and participatory decision making process as a

Policy.

Local experienced development and communication experts claim that a people based

participatory approach with decentralized process would be, certainly, than the ongoing occasional camp based activities without follow up. Moreover, the budgets are released just before the March financial year ending and within one month 70% of the budget is utilized on purchase of costly machinery equipments and development of structures without any well planned appointment of technical staff for operation and maintenance of the equipments even the vehicles. Mr. Hemant Naik along with the victims and senior citizens of the district had demanded for a specific

legal enactment

to stream line the health service delivery process for the sustainable care and

treatment of the victims and also provide for free blood transfusion, medicines, pathological tests, treatment of other related diseases, travel card and pension benefits and other facilities as extended to the differently abled along with the provisions for joint decision making specifically in relation to recruitment and appointment, development of required structures, purchase of consumables, medicines, social audit, grievance redressal mechanism and penal provisions for irregularities and negligence as a policy. Besides this local based effective communication strategy need to be worked out basing on the local language and culture and also sensitive officials in key decision making positions may be posted to lead the process cordially. Since it is a mass issue all the political parties are appealed put it in their Party Istahar with priority concern.

Hemant Naik, Victim and Child Right Defender, Nuasahi (Kupanaju),Po: G.Udayagiri, Dist: Kandhamal- 762100 Cell: 09437645267 E-mail: clickhemant@gmail.com

Ms. Keshamati Pradhan Indigenous Women Leader, At/Po: G.Udayagiri, Dist: Kandhamal- 762100