Despite being home to the largest numbers of patients with haemophilia (PWH) in the world, over 80 per cent of the patients in India are still undiagnosed due to unawareness and inadequate diagnostic facilities.
With an aim to meet the gap in medical research and treatment, the Department of Biotechnology under the Union Science and Technology Ministry has sought proposals from scientists in the country to find ways to diagnosis the blood disorder as well as implement viable, practical and sustainable care strategies for the PWH.
Haemophilia is a bleeding disorder which prevents the blood from clotting correctly and can cause continual bleeding with injuries. April 17 is marked as World Haemophilia Day across the globe.
Talking about the need for calling proposals in the sector, a senior official from the DBT said that in the developed countries, management of haemophilia has proceeded through replacement therapy, prophylactic treatment and taking care of post-treatment complications such as vulnerability to infections like HIV/HCV, development of allo-antibodies called inhibitors that neutralise the replacement proteins (clotting factors) and osteoporosis.
In the coming years, gene therapy is expected to be the most attractive treatment option for people.
“However, in India, when it comes to treatment, PWH still do not have adequate options or opportunities within the country.
“To Indian haemophiliacs, factor concentrates have become available through the public health care system mostly in the last five years only. While this is a good development, much more needs to be done,” he added.
The poor availability of diagnostic and treatment facilities along with the lack of awareness about hemophilia amongst primary care physicians and specialists is the major impediment for the management of haemophilia in our country, the official pointed out.
Therefore, considering large number of challenges and to find ways to implement viable, practical and sustainable haemophilia care strategies in the country, we are seeking proposals from investigators to conduct research in the field, he added.
In India, approximately 1,00,000 people suffer from the disease, out of which only 16,000 are diagnosed, according to the Haemophilia Federation of India.
The Federation has been stressing on providing prophylaxis treatment to children to prevent them from having permanent damage in joints as has been experienced by many adult haemophilia patients.