A case for dedicated thalassemia wards in Himachal hospitals



An estimated 40 million Indians are Thalassemia carriers and over 10,000 Thalassemia major patients are born every year in the country. Of course, a good number of these patients may also be from Himachal, but, surprisingly, there is no authentic data about the number of children with thalassemia in the state. This in turn highlights the poor medical facilities available for such patients in the state. The nearest dedicated centre for thalassemia patients is at PGI Chandigarh, but not all patients from the state have resources to afford treatment there. On the brighter side, a beginning has been made by Umang Foundation, a non-profit, registered Public Welfare Trust, to take up the cause of thalassemia patients in the state and they have strongly been advocating setting up a dedicated facility for counseling of parents/guardians of these children in the state.

The Trust has already been supporting children with thalassemia from Shimla and nearby districts by organizing voluntary blood donation camps dedicated to them. In the last 1½ years, the Trust has been able to provide as many as 550 units of blood to IGMC Blood Bank and 60 units to DDU hospital Shimla. Besides, they have also been working among the students to sensitize the younger generation about thalassemia and the importance of voluntary blood donation.

Taking this initiative forward, Umang Foundation had now submitted a memorandum to the Chief Minister, charting out the future course of action for better treatment of such patients. The memorandum states that children with thalassemia face lots of problems during their visit to IGMC and other hospitals for blood transfusion. They have to get themselves admitted as indoor patient, which is a lengthy process and most of the time they do not get bed in the ward. The Trust has asked for a special ward dedicated to these children with dedicated staff of one staff nurse and one doctor.

The children with thalassemia in all districts of the state of HP have to face a lot of problems and their fundamental right to life is grossly violated. They don’t get blood on priority in the state except Shimla town. The most serious thing is that they have been transfused with wholesome blood, which is dangerous to their life. They require only the pack of red blood cells but the facility of component therapy is not available in the state except IGMC Shimla. But in IGMC Shimla, component separator machine is not properly used. If this facility is fully utilized in IGMC and is made available at Tanda Medical College and other zonal hospitals, one unit of blood can save the previous life of four patients.

Further, the Trust reasons out that there is no facility of counseling of parents/guardians of these children in the state. “The Government can start special clinics at IGMC Shimla and Tanda Medical College initially. The government should create a mechanism through which these children get cheaper medicines through government agency. Presently, the medicines to lower down the iron level of these patients are not available in the market and their supply is made through couriers only by the private companies. The government should ensure these medicines free of cost for the BPL/IRDP families.”

Thorough the memorandum, the trust has emphasized need for providing the same facilities, which are available to children and other persons with disabilities including special scholarship, reservation in jobs and soft loan for self-employment to them when they grow up. ”The children with thalassemia of government employees should be exempted from that rule in which the medical reimbursement of boys is not made after they attain the age of 25 years because the economic rehabilitation of these patients is very difficult till the age of 25. For this purpose, they should be treated at par with the persons with disabilities. The Government should also prepare a special insurance scheme for these children,” the memorandum reads.

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