SRINAGAR, INDIAN-OCCUPIED KASHMIR: A Year after Jammu and Kashmir Government issued a sum of Rupees 2 Crore for the procurement of standard Hemophilia drugs one each for Government Medical College (GMC) Jammu and Kashmir respectively, reports suggest that the provided fund falls inadequate leading to the shortage of drugs. The Hemophilia (blood clotting disorder) patients in the valley have criticized the indifferent attitude of state Government towards the sufferings of Hemophiliacs.
Syed Majid (31), is suffering from Haemophilia ‘A’ (clotting factor VIII deficiency), the most common form of this disorder in the state and is one among the 190 patients that are being treated at Shri Maharaja Hari Singh (SMHS) Hospital. Till date, Majid, who has spent around 50 Lakh on his treatment, said that the budget should not be less than 5 Crore. “Given to the larger number of patients suffering from Hemophilia the support that Government provided is quite less. There is shortage of drugs in Government hospital because there is lack of funds. According to me, the budget should be around 5 Crore,” said Majid.
Lamenting over the insufficient amount of funds available, the Hemophiliacs demand monthly pension and a category from the Government. “Hemophilia is an incurable disease that can make a person disable anytime. There are number of cases where patients have been disabled forever. That is why we demand for a category. If In states like Gujrat and Delhi, Hemophiliacs are provided with monthly pension up to 8000, why not here,” added Majid.
Another patient from Tral, Pulwama, Parvez Ahmed Rather (22) had a similar say. The treatment has cost him 20 Lakh till the time he registered himself with Hemophilia society of Kashmir. Parvez says that Sher-i-Kashmir Institute of Medical Sciences (SKIMS), being the super specialty hospital should provide free treatment to Hemophiliacs. “It is a kind of disease where one can die if the injection is not supplied on time. Sometimes, the bleeding starts during late hours, and at that moment it is really difficult for patients like me who live far away to reach the hospital. I appeal the Government to provide free medication in district level hospitals and home delivery of medicines in case of emergency,” said Rather.
The Government apathy towards Hemophilia patients in Kashmir was earlier this year showcased by two Sociology postgraduates in their short documentary titled ‘Neglected Blood’. Showkat-ul-Islam Bhat, one of the producers of the documentary had originally formulated a report on the Hemophiliacs during his internship period.
“I submitted my report to Health department to make the plight of the patients known, but it was all in vain. Then I along with my friend decided to make a film on it being the easiest and wider source of awareness. The basic problem is the lack of awareness among people about the condition of such patients. That was the only motive,” said Bhat.
Hemophilia is a group of hereditary genetic disorders that impair the body’s ability to control blood clotting or coagulation, which is used to stop bleeding when a blood vessel is broken. As per World Health Organization (WHO), the most common form of male predominant disorder, Haemophilia ‘A’ occurs in about 1 in 5,000–10,000 male births due to the deficiency of clotting factor VIII, while Haemophilia ‘B’ that occurs in 1 male birth in 20,000–34,000 male births due to the deficiency of the clotting factor IX.
Dr Mukhtar Ahmed Masoodi, a Haematologist at SKIMS said, “If we apply WHO parameters in J&K, then more than 1000 male are suffering from this disorder, considering the population of the state as 60 Lakh. However, only 258 cases have been registered in the state, 190 in Kashmir and 68 in Jammu.”
Stating that Hemophilia is not curable, Dr Masoodi maintains that the mortality rate of Hemophiliacs has decreased over couple of years. “Hemophilia is not curable but it is manageable though. It certainly cannot be prevented but over the recent years the replacement of the missing factor is available here in Kashmir which has decreased the mortality rate among such patients,” Dr Masoodi told this reporter.