New Delhi: A patients’ advocacy organisation today urged the Union health ministry to provide free prophylaxis transfusions to an estimated 12,000 to 13,000 children with haemophilia across the country to reduce their long-term risk of developing joint inflammation and damage.
The Haemophilia Federation of India, in a petition submitted to the ministry, said many international haemophilia treatment guidelines recommend prophylaxis in affected children, which can help prevent crippling damage to their joints.
The prophylaxis treatment involves the infusion of anti-haemophilic factors (AHF), typically twice a week, to reduce the risk of bleeding, the primary symptom in this inherited genetic disorder. The Federation says it estimates that prophylaxis would cost between Rs 2 lakh and Rs 3 lakh per patient per year. "The benefits of prophylaxis treatment outweigh on-demand treatment (when bleeding occurs)," said Vikash Goyal, the president of the federation.
Transfusion medicine specialists, however, say a prophylaxis programme needs to be accompanied by strong surveillance to determine the number of haemophilia patients. The federation has compiled a list of about 19,000 children and adults but experts believe this is too small a number given India’s population.
"We believe many haemophilia children and patients still remain undiagnosed – they need to be identified and provided services," said Manisha Shrivastava, professor at the Bhopal Memorial Hospital and secretary of the Indian Society for Transfusion Medicine.
The federation estimates that India could have 1.2 lakh patients with haemophilia. Goyal said the call for prophylaxis treatment follows an earlier campaign that had urged the government to provide AHF for on-demand treatment required when patients have bleeding.
In haemophilia, even minor cuts or bruises can cause persistent bleeding. Episodes of prolonged and recurrent bleeding in the joints or muscles can lead to inflammation and damage, even permanent disabilities. Bleeding from vital organs may lead to life-threatening episodes.
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