After several years of struggle by the Hemophilia Society of Puducherry Chapter, Factor concentrates, which clot blood in hemophiliac patients (type A), are now available in government hospitals including those at Puducherry, Karaikal, JIPMER, Indira Gandhi Government Hospital and Post Graduate Institute.
However, Factor IX concentrate which is used to treat hemophilia type B is still not available in any government hospital except in JIPMER. As the medication is very expensive, the government hospitals should stock the factor concentrates, pointed out Dr P Nalini, president, Hemophilia Society, Puducherry Chapter.
Statistics show that more than 75 per cent of the hemophiliac population in India cannot even afford treatment for the disease that has no cure, he added.
The society on Sunday conducted a rehabilitation camp, organised by the department of Physical Medicine and Rehabilitation, JIPMER, in which more than 200 patients turned up.
Hemophilia is a genetic, life-threatening bleeding disorder where blood does not clot normally due to deficiency or absence of clotting proteins called factors. Persons with Hemophilia (PwH) tend to bleed internally and externally even from a minor injury. It is primarily treated by injecting a clotting factor replacement into the veins, thus replacing the absent or abnormal clotting factors. Recurrent and prolonged bleeding in joints and muscles often leads to permanent disability.
However, those disabled by hemophilia are not recognised as disabled and are, therefore, not entitled to any benefits. Efforts must be made to include hemophilia under the Persons with Disability Act 1995 and the National Health Mission, Dr Nalini said.
Hemophiliac adults even struggle to get employment, hence, making a living is a major problem, she added.
As the disease is hereditary it is important to detect the women who are carriers of the gene. The Hemophilia Society is trying to identify such women, including the sisters of hemophiliacs and their close relatives.
When these carriers (women) are pregnant, they are sent to CMC, Vellore, so that their fetus can be tested. Porionic Villous biopsy detects if the fetus is carrying the gene. If positive, the parent is advised to abort the fetus, said Dr Nalini.
However, there is a lot of stigma in identifying women carriers as they find it difficult to find suitors. Moreover, the cost of the detection is around Rs 10,000.