In a move that would ensure better medical management of persons with hemophilia (PwH) soon, the Union Health Ministry is preparing guidelines for the treatment and prevention of the genetic blood disorder that diminishes the ability of a person’s blood to clot.
PwH are at risk for excessive bleeding when injured. The treatment is very expensive and since it has no cure it requires continuous care all their lives.
Sources in the Ministry said a comprehensive protocol will be ready by March next year with an aim to streamline treatment as well as medicine procurement and identify un-diagnosed patients suffering with the disorder in the country.
They said that guidelines envisage setting up a hemophilia treatment centre in each district and at least one comprehensive hemophilia care centre in every State. Patients treated at comprehensive care clinics have been shown to have better access to care, less morbidity, and better overall outcome.
Guidelines will also mandate upon the States to ensure a dedicated budget for treatment and prevention of the bleeding disorder. “Once guidelines are formulated, States will have certain norms to look upon. Presently, they are following varied policies, depending on their priorities,” said sources.
For instance, States like Uttar Pradesh, Karnataka, Tamil Nadu, Gujarat and Kerala are utilising the funds in a very systematic manner with good projects in place. However, some States like Maharashtra are not able to utilise the funds due to various bottlenecks and patients are suffering there, said Vikash Goyal, president of Hemophilia Federation (India), the apex body of haemophilia federations across the country.
He said that medicines procured for the Hemophilia patients (Factors) by Karnataka is the best at the lowest price in the country. This has prompted many other states to reduce their price too, Goyal said.
At present, only 15 per cent of the total Haemophilia population has been identified in India. Just about 18,000 patients registered with the HFI.
However, the activists in the sector suspect that their number could be 7 times more.