ASH 2025 | Key barriers to equitable hematologic care in India and priorities for the next decade

There are a few issues that still linger on. One is the issue of late diagnosis, limited access to specialists, limited transplant centers. There’s a huge rural and urban divide that still exists with regards to access to medical care. There’s an issue of financial toxicity and also there is a weak integration of chronic hematologic care into the primary and public health programs. I think the next 5 to 10 years, the efforts should prioritize in building a more distributed hematology workforce, an infrastructure that includes expanding screening programs, to establish registries, and to secure affordable access to essential and advanced therapies. And it should also include chronic programs like sickle cell disease, thalassemias, hemophilias, which are important and huge public health burden. Though India has a high burden of hematologic malignancies like leukemias, myelomas, it adds more strain to the already strained oncology system. And there’s also the problem of non-malignant chronic conditions like sickle cell disease, thalassemia, which is highly prevalent and we have more new cases being added into the community as we talk. Sickle cell disease as we know is concentrated in some of the tribal groups and some of the marginalized groups in our country and also there’s a significant number of, sorry, hemophilia patients as well. And there’s a major shortage of, and this is all, this always adds to the healthcare burden and the lack of access to effective and good treatment options. The second problem which I see is that which we need to work on is that there’s a major shortage and inappropriate distribution of healthcare workers in the rural and the urban areas. And this is one of the problems which I think there’s one of the problems that needs to be addressed in the long run. There’s also not, you know, not this lack of good blood banks, access to, you know, hematopathologists and trained lab staff in, say, in the district level and at the, you know, PHC, which you would call as primary health center level. This is one which, one area which that needs to be addressed so that, you know, hematology is available to anyone at the primary health center level which is one of the basic foundations of our healthcare system. We need to also strengthen our disease-specific programs like sickle cell disease screening programs, the thalassemia screening programs. Though there has been efforts by the government to establish the national sickle cell anemia elimination mission. However, it has been constrained by gaps in the frontline worker awareness. There has been problems with logistics for population screening and also problems with the regular care of the patients who are already diagnosed with, say, sickle cell disease. And same goes for, you know, other hemoglobinopathies like thalassemia. The lack of, again, lack of support for rare diseases like congenital dyserythropoietic anemia, fall under the blanket term of haemoglobinopathies. These are patients who are sort of marginalized and not recognized at least by the government as a part of rare anemia disease segment. Also I see problems with access, affordability, and availability and access to advanced therapies because most of the health expenditure is out of pocket and a lot of patients are not covered by the available government-funded healthcare. Access to allogenic transplant is better. CAR-T is, again, we have just two CAR-Ts available in India. At present, we would like to have, you know, more, obviously, it gives us more options and probably, you know, give the best options for patients. And these are some of the things we need to work on. We need to work on strengthening our logistic level, hematology, you know, deploy point of care and point of care anemia screening, hemoglobin screening and diagnostics, expand our disease-specific public health programs for sickle cell anemia, thalassemia, and for hemophilias, and invest in the workforce in training for creating awareness for hematology and create posts for hematology and, you know, make sure that the patients are not deprived of, you know, an equitable and accessible care. So these are some of the things we need to work on.

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