Kashmir valley’s lone Hemophilia Center located at Shri Mahraja Hari Singh (SMHS) hospital here in Srinagar is grappling with inadequate drugs and staff. The situation has left hundreds of hemophilia patients into anguish.
Hemophilia is a rare genetic disorder that keeps blood from clotting and leads to excessive internal and external bleeding.
327 patients are currently suffering from hemophilia disease in Kashmir valley. The incidence of hemophilia in J&K is one per 10,000.
The lack of space at hemophilia center has irked the staff. The patients are only able to get some treatment within just two rooms of the center. The doctors and para-medical staff lamented over the lack of infrastructure and poor facilities. “Due to space crunch we are unable to treat patients properly. Government should either construct new building for hemophilia center or expand the old center,” said a hospital employee wishing anonymity.
Another employee lamented that in absence of basic facilities many patients have stopped visiting the center.
The misery of patients does not end here but there is also shortage of drugs at the center which has put the life of patients at stake. The patients are without anti-hemophilia drugs like factor VII and IX, feiba and wanvili brand factor. As per sources, the hemophilia center is facing the shortage of drugs since many months. “Every time I come here with an intention to get good treatment but unfortunately I return upset because the basic drugs are unavailable here,” said a patient Ghulam Hassan from Budgam.
Without providing timely drugs to the patient he added a patient can lose his life. Due to lack of drugs patients are given FFP which has developed many ailments infections and deformities among them. “The patients usually face problems in blood clotting and require immediate drugs which they do not always get at the center. The treatment is otherwise expensive. A single dose of the clotting factor costs between Rs. 4000 to Rs. 2400,” said a doctor.
Pertinently, in 2011 the Jammu and Kashmir High Court directed the health department to keep the factor available round the clock in the center “but things hardly changed on ground”.
Many patients and their attendants questioned the role of hemophilia center when it does not serve the patients. Either government should provide the proper facility to patients or simply wind up the center, said an angry attendant outside the hospital.
The lack of adequate doctors at the center is not only further blow to the patients but doctors also face the brunt and remain overburdened. “In absence of proper and adequate staff the center during the day remains jam packed and doctors also do not get time to have lunch,” said a doctor at the center.
Government he suggested should appoint adequate staff which could ease out things at the health center.
The association of hemophilia patients—Hemophilia Society of Kashmir has also raised concerns over the lack of proper facilities at hemophilia center. They have urged government for the timely intervention to resolve the issue immediately.
President Hemophilia Society of Kashmir Syed Majid Qadri said that patients are facing numerous challenges and don not get comprehensive treatment. “If a patient does not get medicines in time he or she can die. Hemophilia patients are bound to suffer internal bleeding multiple times a week and can die,” said Qadri.
When contacted medical superintendent SMHS Dr. Nazir Choudhary said: “Regarding this matter kindly ask principal GMC.”
Principal GMC Srinagar Dr. Pervaiz Shah denied the lack of hemophilia drugs at SMHS. “We cannot let our patients suffer. Except factor nine we have managed to get most of the drugs now,” he claimed.
Regarding space crunch and shortage of staff Shah assured the problems will be redressed shortly. (KNT)