To suffer & endure... a haemophiliac’s life

Each time Siddhesh Sutar has a bleed, he has to travel six hours from his village to be in time in Pune for his life-sustaining shot — a vial of anti-haemophilic factor (AHF). Sarvesh Gaikwad, the 11-year-old son of a peanut seller, can only crawl. Dr Sunil Lohade, his physician, suggested corrective surgery following which he can straighten his right leg. The operation was risky and was costly as the boy required more than 10,000 units of AHF. This is the common story of adversity and pain for most of the people with haemophilia (PWH) in interior villages as they are still unaware of the disease and have no access to proper treatment. Haemophilia Society of Maharashtra (HSI), Pune Chapter, has been helping people with a genetic bleeding disorder for 22 years. The society locates undiagnosed persons with haemophilia, provides anti-haemophilic factor (AHF) besides educating and counselling PWHs and their families. It provides AHF at Rs 7.25 per unit against the market rate of Rs 25. Every week around 3,000 units of AHF are procured from Hemophilia Federation India (HFI), Delhi for the city centres. Following the society’s sustained efforts and a PIL filed against the Government of Maharashtra, free AHFs are being provided by the government since last month. Their widespread public awareness has led to over 450 registered PWHs at its various centres, around 25 walk-ins every year plus a couple of outstation patients. HSI Pune Chapter president Rashid Lilani said, “The primary symptom of an internal bleed is uncontrolled, spontaneous bleeding in different parts of the body. The bleeding happens at the spaces between joints resulting in pain and swelling.” Fresh frozen plasma has to be injected to check the internal bleed in PWH that may give rise to severe complications. This plasma is the liquid part of the blood (plasma) taken from a donor and frozen for later use. “The treatment is less expensive than donated and recombinant factor concentrates. As very large volume of fresh plasma is required to provide enough clotting factor to prevent bleeding and this amount of plasma is not easily kept at home, Cryoprecipitate (concentrated frozen plasma) can be used as it contains all clotting factors and fibrinogen used to treat clotting problems,” Lilani said. The society’s five chapters (Mumbai, Kolhapur, Nagpur, Aurangabad and Pune) are spread across Maharashtra with the city having three haemophilic treatment centres at Lohade Hospital in Chinchwad, Noble Hospital in Hadapsar and the Sahyadri Hospital in Kothrud. Dr Sunil Lohade said, “When a patient walks in to one of these centres for the first time, we take routine tests and provide the initial treatment. Major cases like fracture or surgery are referred to Noble Hospital or Sahyadri Hospital.” But these treatments are costly. A fracture requires 10,000 units of AHF, while a brain bleed may require around 20,000 units. If the PWH has to undergo surgery, he will require the prescribed units of AHF plus pay the hospital dues and physician’s fees.