Srinagar, Jan 8: When 27-year-old hemophiliac Yasmeen (name-changed) bled from her mouth, she immediately rushed to Day Care Centre at SMHS Hospital Srinagar, only to find that it has run out of medicines.
“After an hour long wait, the doctor told me that the supplies haven’t been restocked and we should come after a week. I felt deflated on hearing this. It seemed as if death stood seconds away from me,” she said
Yasmeen is among 100 hemophilia patients including children at SMHS Hospital who are susceptible to life threatening diseases due to non- availability of drugs.
Hemophilia is a rare genetic disorder that keeps blood from clotting and leads to excessive internal or external bleeding. The treatment is very expensive. A single dose of the clotting factor costs from Rs 4,000 to Rs 24,000.
“Majority of the patients, particularly children, require three doses of the clotting factors (factor-VI, VIII and IX) every week to prevent internal injuries and deformities in the bones. There are some patients who need to take the factor two times a day,” an official at SMHS Hospital said.
There are around 327 patients (310 males and 17 females) registered with the Centre — a lone tertiary-care facility in Kashmir.
President of Hemophilia Society of Kashmir Syed Majid Qadri said patients are without anti-hemophilia drugs like Factor IX, Feiba, and Wanvilibrand Factor.
“Government Medical College Srinagar has failed to procure these drugs for the needy patients despite obtaining no-objection certificate (NOC) from Jammu and Kashmir Medical Supplies Corporation. The authorities are playing with the precious lives of patients,” he said.
Qadri said due lack of anti-hemophilia drugs, patients are given FFP which has resulted in multiple ailments, infections and deformities.
“The doctors posted at Day Care Centre of SMHS Hospital have no specialization to tackle the problems of hemophilia patients. They are violating the guidelines of World Federation of Hemophilia (WFH) as patients are provided less dosage than the recommended norms,” he said.
Qadri said inappropriate treatment, imbalanced dosage, inefficient prescription and unnecessary referral of patients, to other units was a clear violation of WFH guidelines.
“Day Care Centre building has been converted into a store, leaving hardly any space for treatment of hemophilia patients. The laboratory has been occupied, making hardly any space for the required machinery, which results in improper analysis. Physiotherapy equipment is rusting in the boxes”, he said.
Medical Superintendent, SMHS Hospital, Dr Nazir H Chowdhary said they are already in the process of replenishing the drugs. “The medicines will be made available to them in two to three days,” he said.
HS hospital sans life-saving drugs: No country for hemophilia patients