Hemophilia is an inherited blood disorder due to which blood does not clot normally. There is no cure for it, rather, management involves administering Factor, numbered according to the type.

The Hemophilia Center at SMHS Hospital here is once more dry of Factor VIII, the life-saving component for patients of hemophilia.

Three hemophilia patients in critical condition are struggling to survive for want of these essential supplies.

The life-saving Factor VIII is not available at SMHS Hospital for more than 40 days now, according to patients. The regular shortage of Factor VIII, the component for stopping bleeding in hemophilia patients, is playing with the lives of the affected.

Hemophilia is an inherited blood disorder due to which blood does not clot normally. There is no cure for it, rather, management involves administering Factor, numbered according to the type.

The complacency of the authorities is such that even the second line of option for hemophilia patients, Fresh Frozen Plasma (FFP) that used to be readily available at SMHS Hospital, is also not being provided for a month. The patients complained that the Hemophilia Center at SMHS Hospital is a mere eye-wash in absence of these two essential supplies.

FFP is used in case of emergency and non-availability of Factor VIII to stop bleeds. Although not recommended due to high risk of infection transmission associated with it, FFP is a cheaper, less effective alternative for Factor VIII.

Dr. Nazir Ahmed Chaudhary, Medical Superintendent SMHS Hospital, agreed that hemophilia patients were not being provided the life saving Factor VIII and cited the paucity of funds for the shortage. “The funds for hemophilia patients are from plan component, but nothing has been released on that account yet,” he said.

Principal GMC, Dr. Rafeeq Ahmed Pampori denied the reports of problems in fund flow for the patients’ treatment. “We have an allocation of Rs 1.5 crore annually and that comes to us. Rs 75 lakh have already been spent since April this year,” he said.

Although SMHS Hospital administration claimed that ‘Rs. 75 lakh would be released in a week’, post which, it said that medicines and Factor VIII would be again made available for the patients; the insiders had a different story to tell. “There is a liability of Rs. 72 lakh for Hemophilia drugs. If Rs. 75 lakh are released and Rs. 72 lakh are used to settle liabilities, how much Factor VIII can they keep available with Rs. 3 lakh in hand?” asked a GMC official.

GMC had reportedly sent a requirement and justification for allocation of Rs. 5.58 crore for keeping the drugs available in the quantity to suit the requirement in Kashmir. However, sources said, this proposal was left to gather dust as more and more patients of hemophilia undergo complications that cause them health of their body parts and sometimes life too.

Regarding the provision of FFP at SMHS Hospital, Dr. Choudhary said, “We are providing as much plasma as is possible for us.” He rubbished the complaint of a defunct freezer being responsible for denying FFP to the hemophiliacs and said that such technical snags in equipment are not an issue and are routinely handled.

Meanwhile, in absence of any hope and respite for the patients, Vaqeel Ahmed (name changed), who has an abdominal hematoma (bleeding in abdomen), was taken by his family to a hospital outside the state. A relative of Vaqeel said, “The family struggled to arrange money for his treatment, but they are essentially hard-pressed.” He added, “But it was a matter of life and death for Vaqeel and the government has no heart to feel this pain.”

“There are many of us who have been rendered disabled because we could not get the drugs on time,” said Asif, a hemophilia patient.

Earlier this year, Minister of Health and Medical Education had promised ‘round the year’ treatment facilities for the patients and officials had claimed that the matter of fund deficit was being discussed with NRHM too. However, nothing seems to have changed for the patients.