PUDUCHERRY: Factor concentrates for blood clotting among haemophilia patients remain unavailable in JIPMER and Indira Gandhi Government Hospital and Post Graduate Institute and also in government hospitals in the outlying regions of Karaikal, Mahe and Yanam.
Haemophilia is a genetic, life-threatening bleeding disorder where the blood does not clot normally due to deficiency or absence of clotting proteins called factors.
Persons with haemophilia tend to bleed internally and externally even if there is a minor injury.
It is primarily treated by replacing the absent or abnormal clotting factors by injecting a clotting factor replacement into the veins.
Factor VIII concentrates treat hemophilia A, and factor IX concentrates treat hemophilia B. As the disease is a lifelong bleeding disorder, incurable in nature and expensive to manage in terms of medication and care, patients are dependent on government hospitals, said Dr P Nalini, president of Haemophilia Society, Puducherry chapter and retired paediatrician from JIPMER.
Each vial costs around `3,000 and four or five vials are given each time when there is bleeding, Nalini added further.
Unfortunately, the drug had gone out of stock for the last two months. Due to the non-availability, around 12 patients, mostly children, are suffering. Recurrent and prolonged bleeding in joints and muscles often lead to permanent disability.
Around 250 people in Puducherry region, most of them small children, are registered with the Haemophilia Society though the number is four times larger, said Dr Nalini. Many do not come for registration and want to suppress it, she added.
On account of funds crunch, the medicine have not been purchased, sources said.
JIPMER is yet to get the annual grant from the Health Ministry as the Union Budget is yet to be conducted. Similar is the case in IGGGH&PGI also.
Sources in the hospital said that orders have been placed for getting the stock of medicine.
Since haemophilia is a hereditary disease it is important to detect the women who are the carriers of the gene causing it.
The Haemophilia Society is making efforts at identifying such women with great difficulty and when they conceive after marriage the foetus is tested for the existence of the gene.
Pregnant women, who are the carriers are sent to CMC, Vellore, for the detection test (Porionic Villous Biopsy), to detect whether the foetus is carrying the gene.
If detected as positive, the parent is advised to abort the foetus, added Dr Nalini.
However, the process of identification of women carriers of the gene has its drawbacks in marriage.
Greater awareness is required on haemophilia and its management by having sufficient coagulation factors stocked in government hospitals, said Dr Nalini.