Despite technological advancements in the treatment of hemophilia, health experts estimate that nearly 80 per cent of Indians are not diagnosed owing to the absence of proper diagnostic facilities in remote areas.

With around two lakh cases, India is estimated to have the second highest number of patients with hemophilia. According to Hemophilia Federation of India, the umbrella body for registration of patients with the disorder, hemophilia is caused by the inability of the body to produce the anti-hemophilic factor (AHF) in the required amount. There is no known cure for this disorder.

If not diagnosed early, repeated bleeding into joints, bones, and muscles can result in synovitis, arthritis and permanent joint deformities. The bleeding itself can lead to wasting and atrophy of muscles.

Dr Ruby Reshi, Head of Pathology Department at Government Medical College, Srinagar in Jammu and Kashmir, said that India is progressing in the field of hemophilia treatment but the core problem is of diagnosis.

There are only 20,000 registered patients of hemophilia in the country. There seems to be a huge gap as the total number of people with the disorder is somewhere around 2,00,000. Reshi said that there is a need for diagnostic centres that can help in diagnosis and making people aware of the seriousness of the disorder.

Dr Nita Radhakrishnan, Assistant Professor at a Noida-based Super Speciality Pediatric Hospital, stated that presently only about 20,000 patients are registered while more than 1.5 lakh are still not brought under the registry. Over 80 per cent are undiagnosed.

Doctors said that the government has done enough under the National Health Mission for hemophilia. However, proper diagnostic centres have not been established in remote areas of the country.

Dr Rajesh Kashyap, Associate Professor, Hematology Department at Sanjay Gandhi Postgraduate Institute of Medical Sciences in Lucknow, UP, said that an expansion of the net of diagnostic labs in the districts of the country can solve the problem. He added that unless the diagnostic net is expanded, neither hemophilia nor the gravity of the problem can be understood.

Kashyap stated that the tests for diagnosing hemophilia are inexpensive and can be done at district hospitals. The only challenge is about screening which faces a huge gap in the rural parts of the country.