Kerala to offer free prophylactic treatment for haemophilia for children
300 children with haemophilia in the State will benefit from this new and expensive therapy which holds the promise of improved care and quality of life to patients
The State government has decided to offer Emicizumab prophylaxis therapy free of cost to all children with haemophilia up to the age of 18 years, Health Minister Veena George said here on Friday.
The therapy is being offered to children registered under Ashadhaara, the State government scheme for the care, treatment and follow-up of haemophilia patients. The Health department reckons that 300 children with haemophilia in the State will benefit from this new and expensive therapy which holds the promise of improved care and quality of life to patients.
This is another first for Kerala, which is perhaps the only State to offer Emicizumab therapy free of cost to haemophiliacs. The decision to offer prophylaxis therapy is yet another step being made by the State towards its goal of ensuring a life free of bleeding episodes and disability for haemophilia patients, Ms. George said in a statement.
Emicizumab prophylaxis therapy, which has been approved for haemophilia patients since 2021 is considered the gold standard for haemophilia care. Since 2021, this therapy was being offered for selected haemophilia patients in the State and the decision to extend this to all children with haemophilia was taken based on the results of the efficacy of the treatment over the past three years.
One of the main challenges for persons with haemophilia is the bleeding episodes they go through on a regular basis. The bleeding episodes are painful and frequent bleeding into the joints can affect mobility and lead to disability.
Haemophilia bleeding episodes can be managed either by treatment with blood factor replacement products as and when it bleeds or it can be administered prophylactically so that bleeding can be prevented.
Taking factor replacement treatment on demand has certain disadvantages. The half-life of factor VIII is 8 to 12 hours, which means that the amount of factor VIII working in the body drops by half, 8 to 12 hours after taking it. This means that severe haemophilia patients will need to be infused on a fairly regular basis with factor replacement products.
In order to maintain a protective trough level (the lowest level of factor 8 in blood before the next infusion is required), two to three infusions might be required for a patient every week. This creates a huge treatment burden and also, many patients may not be able to maintain this level of care consistently.
Prophylactic treatment would mean that the factor replacement happens routinely and a trough level is maintained throughout, preventing further bleeding episodes. Once a child with haemophilia is put on prophylaxis therapy with Emicizumab, the frequency of infusions comes down to just once a month, freeing up the child from the trauma of frequent hospital visits and factor infusions apart from the hassle of missing school days. For parents too, it is a relief from loss of work days
Some 2,000 haemophilia patients have registered under Ashadhaara scheme in the State. The factor replacement treatment, which was available mainly in medical colleges and Aluva taluk hospital has been de-centralised and is now available through 72 hospitals.
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