A Wish to Live Sans Pain
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14 March 2011
By Shailvee Sharda
Patients of Haemophilia and their parents continue to suffer due to unavailability of life-saving factors at SGPGI and CSMMU despite HC order
However, two years on, haemophilia patients continue to suffer in the absence of proper facilities in the city including the SGPGI and CSMMU.
Tanveer Ahmed’s son Kashif suffers from haemophilia. Kashif injured his right arm while sleeping on February 22 and was taken to Sanjay Gandhi Post Graduate Institute (SGPGI) for factor transfusion. But he failed to get treatment for his ailing son. "I pleaded them to help me, asked the doctors to suggest a way out. After a point, I realised I was wasting my time and my prayers were falling on deaf ears,’’ said Tanveer.
TOI spoke to chief medical superintendent (CMS), SGPGIMS, Dr AK Bhatt on the issue. He said, "What can we do when we do not have the factors.’’ He added that the departments buy the medicines themselves. Prof Shubha Phadke, head, department of medical genetics, which attends to haemophilia patients, attributes the unavailability of factors to funds crunch. "The state government had given a grant in 2009-10 which was exhausted by March 2010. Funds for 2010-11 were not sanctioned,’’ she told TOI.
She added that when the court pulled up the health department early this year, an interim grant of about Rs five lakh was sanctioned. "Using the funds we procured 185 vials (one vial has 250 units of AHF) of factors which were consumed by mid-February,’’ she said.
"It’s painful to see distressed and disheartened parents. As far as the disease is concerned, free and continuous availability of factors is essential to ensure a normal life for a haemophilia patient,’’ said Dr Phadke.
Disappointed at SGPGIMS, Tanveer took his son to Chhatrapati Shahuji Maharaj Medical University (CSMMU). But there too, he got the same reply. "We were told that the university had not been able to buy factors for the past 8-10 months,’’ said Kashif ’s mother Naznin who was completely broken by the denial. "Continuous loss of blood is life-threatening in haemophila patients,’’ she said.
The reason for unavailability of factors at CSMMU is same as SGPGIMS. "Delay in sanction of funds is the cause of trouble at our end. But using the interim grant, we have procured a stock of factors which will be available from Monday,’’ said Prof SN Shankhwar, chief medical superintendent of all hospitals under CSMMU.
He, however, admitted shortage of AHF in all government medical colleges. But the stock won’t last long since patients from all over the state come to CSMMU. All stocks would be over in about two months. I just hope the government sanctions grant on time in 2011-12, he said.
When contacted, director general health services, Dr SP Ram said, "In compliance with the high court order, we asked for a demand note from medical colleges where treatment of haemophilia is possible. The inputs have come and we would be issuing bank drafts of the funds very soon.’’ Some officials in the health department said that since the disease can be diagnosed and treated in tertiary care centres, which are medical colleges, controlling department of medical education should take charge of the situation.