Lack of facilities, skilled manpower and absence of round the clock treatment in Kashmir hospitals is one of the causes of deaths among haemophilia patients, President Haemophilia Society of Kashmir (HSK) Sunday said.
Ruing government apathy towards them over the years, President HSK, Syed Majid Qadri during a relief distribution function organised for the valley’s haemophilia patients in Srinagar said, “There are 308 haemophilia patients, mostly males and some children, who are part of HSK. Most of them hail from poor families and live a miserable life,” he said.
Qadri said due to irregular supply of medicines especially Factor-VIII and Factor-VII at the Haemophilia Day Care Centre at SMHS hospital—lone facility in Kashmir—has caused Hepatitis-C to many patients endangering their lives.
“In the past ten years, at least 10 such patients died either due to lack of medicines or they were unable to reach the hospital on proper time and were denied ambulances,” he said.
He said of the total patients around 150 are suffering from Hepatitis-C citing reasons that they were given—fresh frozen plasma (FFP)—which can cause HIV, and hepatitis.
To ensure safety of patients, Qadri said the day care facility at SMHS must be started 24/7 and such centres be opened in district hospitals where patients suffer for want of treatment.
“The building in which the daycare haemophilia centre functions has been declared unsafe after 2014 floods by the disaster management,” he said.
Despite the fact that the blood clotting disorder patients bear brunt of huge financial burden Qadri said they are striving hard to help the patients from time to time.
“At SMHS there should be a separate ward for us. The existing facility lacks infrastructure and skilled manpower. There is no policy with the government for us,” he said
“Often there is a shortage of Factors and lack of manpower has left us in lurch. Another issued we face is that there is always a delay in the procurement of haemophilia drugs,” Qadri said.
Expressing dismay over the lack of skilled manpower he said the physiotherapy centre at the hospital (SMHS) be attached with the haemophilia centre to avoid delay in treatment.
“Physiotherapy is need of the hour. One more thing is that an orthopaedician has been recently transferred and patients are compelled to travel to Bone and Joints Hospital, Barzulla for minor consultations,” he said.
Qadri also expressed resentment against Jammu and Kashmir Medical Supplies Corporation Limited (JKMSCL) for delaying the procurement of haemophilia drugs.
Haemophilia patients have been demanding the state government to recognize the blood clotting disorder as a disability but the government is in no mood to consider the same.
“There is no comprehensive budgetary provision for inclusive haemophilia care which often cause shortage of medicines and that compels us to approach NGOs for help,” they said.
In the event Haemophilia Society of Kashmir provided relief cheques worth one lakh rupees to patients hailing from across the valley. Patients hailed HSK for helping them at tough times.