With this backdrop, ETHealthworld, in association with Hematology Education and Research Trust as the Knowledge Partner, organized a virtual event. The West Bengal edition comprised discussion on Hemoglobinopathies treatment practices and approach wherein healthcare officials, clinicians, payors and policy makers of the state discussed the achievements in management of said hemoglobinopathies and new approaches that are required to strengthen the program. The event was powered by Takeda.
Dr. Prakash Kumar Manda, Associate Professor, Dept of Hematology, NRS Medical College moderated the panel discussion. Dr. Mandal pointed out, “Expected Persons with Hemophilia (PWH) in India is 1.3 lakhs. However, only 23,000 patients have been medically diagnosed with hemophilia. Therefore, the diagnosis rate is only 18-20% in India, which is a trivial proportion.”
Role of the administration in curbing under-diagnosis of hemophilia
What should be the roles of State and Central health authorities in reducing this huge gap between the diagnosed and undiagnosed cases of hemophilia? Dr. Debasis Bhattcharya, Director – Medical Education, West Bengal, opined, “There is an urgent need to form a registry of hematological disorders. This is because currently, we are working mainly on extrapolated data based on which we manifest our plan of action to manage hemophilia. Quite naturally, this issue needs to be addressed and we should develop a registry for the patients who are genuinely suffering from such disorders so that this problem of under-diagnosis does not arise in the future.”
Sharing his insightful outlook on the same, Ajay Roy, Civil Society Representative, West Bengal, said, “To identify more cases of hemophilia, awareness programs must be organized not only in medical colleges and hospitals, but also at a district level. Secondly, the administration must allow more and more district hospitals to diagnose those who suffer from hemophilia so as to make the diagnosis process more feasible for them.”
Indigenous guidelines and framework for treatments
Commenting on the significance of creating indigenous guidelines and policies for treating people with Hemophilia, Dr. T. K. Dolia, Professor & Head – Department of Hematology, NRS Medical College Kolkata, said, “Having a balanced guideline pertaining to the Indian context for treating people with hemophilia is imperative. We have to adopt our own policies in India to manage hemophilia – and these policies must be centered at improving the quality of life of people with Hemophilia without any disability. We should not emulate the guidelines of western countries.”
Correlation between per capita consumption of coagulation factors and quality of life Does per capita consumption of coagulation factors correlates with quality of life? Dr. Madhumit Nandi, Professor and HOD, Department of Pediatrics, North Bengal Medical College, opined, “Per capita consumption of factors is very much related to quality of life. More per capita consumption means better management of patients and if patients are better managed then there will be less amount of arthropathy. So naturally, the quality of life will improve if the per capita consumption of coagulation factors improves.”
Dr. Biplabendu Talukdar, State Blood Cell Coordinator, West Bengal, emphasized the importance of factor availability 24/7 for hemophilia patients, “If a patient is not getting factor concentration at the right time, then he/she has a greater chance of developing a deformity. That is why the 24/7 availability of coagulation factors is very important for hemophilia management.”
Adopting prophylaxis and home-based therapy
Dr Dolai Highlighted West Bengal Bleed Impact Model narrating impact of current treatment approach on patient quality of life, health outcome and Healthcare resource utilization, on the basis of these data points Dr Dolai advocated for the initiation of prophylaxis for hemophilia management, “The adoption of prophylaxis, particularly in the India setting, is very important. Taking the prophylaxis approach for the management of hemophilia can have significant long term cost outcomes that will lead to better standard of care and improvement in the quality of life of persons with hemophilia.”
Will home-based therapy be a better option for a person with hemophilia? Dr. Nandi opined, “Home-based therapy is a possible approach for better quality of life for a person with Hemophilia since it eliminates the need for a hospital admission or going to a far-off place for the therapy. Furthermore, home-based therapy offers a more familiar and disturbance-free environment to the patient and all the stakeholders in his/her life.”
Sharing his views on the same, Dr. Mandal said, “Home-based therapy or personalized prophylaxis approach is far better than hospital-based prophylaxis since the former results in better standard of care, improves quality of life for the PWH, and also saves the adjunctive therapy costs.”
Commenting on the future of hemoglobinopathies treatment, Dr. Bhattacharya said, “We all should work together to create awareness in the society regarding hemophilia and other blood-related disorders. Hospitals and healthcare authorities must direct their efforts towards early diagnosis of hemoglobinopathies and initiating Prophylaxis as preferred treatment for hemophilia, and the administration must plan for home-based therapy in the future.”
Hemophilia and thalassemia are inherited bleeding disorders that currently affect thousands of Indian men, women and children. While there is no known cure for such rare bleeding disorders, they can be effectively managed through regular check-ups and timely treatments. But the management of hemoglobinopathies can only be done if there is an effectual system in place that ensures equity in treatment and healthcare facilities.