Groups seek implementation of state plan for haemophiliacs….Ranjani Raghavan
Ahead OF World Haemophilia Day this weekend, support groups in Mumbai which has around 1,500 haemophilia patientsare pushing the government to implement the Rs 92-crore plan that the state has envisaged for haemophilia, thalassemia and sickle cell anaemia, which has been pending for a long time.
Nearly 1,500 people with haemophilia have been registered by the Mumbai Haemophilia Society, although the actual number is expected to be 10 times more than those outside city limits have been documented, doctors say.
Haemophilia is a rare blood disorder where lack of factor VIII (8) or factor IX (9) in the blood prevents clotting from occurring when there is a wound. Replacement of this factor 8 or 9, essential for prevent continous bleeding, can cost a patient upto Rs 30,000 to Rs 40,000 at a time. The cost is prohibitive as the patient may require these injections twice or thrice a week, along with other medical help in the form of physiotherapy.
We have been hoping that the government will step in for quite some time. If they do not, we will have to move court, said Balshiram Gadhave, secretary of the Haemophilia Soceity Mumbai chapter.
The first state government to agree to pay for haemophilia patients was Karnataka; it was followed by many other states like Tamil Nadu, Andhara Pradesh, Gujarat, Kerala and Goa. At least five high courts in the country have directed the governments to intervene – the latest was the Rajashthan High Court. The Calcutta High Court also recently asked the West Bengal government to explain its plan of action for persons living with haemophilia, the Haemophilia Federation of India said.
This Sunday, on World Haemophilia Day, people with haemophilia in many states will be relieved and happy as their government has intervened to pay for the expensive treatment, but in Mumbai they will still be helpless, said Kanjaksha Ghosh, Director National Institute of Immunohaematology at KEM hospital Mumbai and also the president of the Hemophilia Federation of India.
The federation is also mapping out a directory of all the people living with haemophilia in Mumbai and other cities – for future research purposes, so any deviation in trend of haemophilia persons can be instantly identified. We will put together a directory by July, Ghosh said.
This plan was initially conceived only for haemophilia patients but after internal debates thalassemia and sickle cell anaemia patients were also covered. In thalassemia, the red blood cells in a patient are very low because of which the patient requires frequent blood transfusions. In sickle cell anaemia, the red blood cells take up the form of a sickle; this is predominantly observed in tribal areas.
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