A pioneer of sickle cell advocacy, Dr Sudam L Kate, has dedicated 36 years of his life to the problem. Kate has an extensive list of accomplishments regarding his work in research and patient care. The 86-year-old Padmashri winner tells The Indian Express how people from the tribal areas suffer from this disease that has no full-proof treatment.
How did you start working on sickle cell anaemia?
My journey began in 1972, when a team of Russian anthropologists visited India with the aim of studying genetic markers among tribal groups from Maharashtra and selected the Pawara tribe from Sahada taluka of Dhule district. I was at B J Medical College and was given the responsibility of studying genetic markers and survey among 20 different groups, particularly tribals and Scheduled Castes. While screening the Pawara tribal community for blood markers, I came across a few sickle cell trait carriers and one patient with sickle cell disease. This was the first finding within that area. I presented this data to my mentor Prof G S Mutalik, who then suggested me to continue with this project. I continued the work on genetic disorders, organising national symposiums on tribal health and also health camps in tribal areas of Maharashtra and other parts of India. These studies were further carried on with support and guidance from Prof Mridula Phadke, former Dean, BJMC and former vice chancellor of MUHS. The late Dr D Shirole, a renowned pediatrician of Pune, was also my close colleague, who helped in understanding the clinical aspects of sickle cell disease in these people. In 1998, we set up Sickle Cell Dawakhana, a centre at Dhadgaon tehsil in Nandurbar district that provided diagnoses, counselling and holistic treatment under the patronage of eminent socialist Shri Dada Gujar of Maharashtra Arogya Mandal, which is still actively supporting these activities.
What is the sickle cell anaemia project?
Sickle cell anaemia, a hereditary disorder of red blood cells, is commonly found among Scheduled Caste, Scheduled Tribes, nomadic tribes and other backward classes of Maharashtra. The disorder is very common among people from Chandrapur, Gadchiroli and Nandurbar districts. In these areas, on an average one out of five persons is Heterozygotes (trait or carriers) and more than 1 per cent Homozygote suffer from the disease (sufferer). There is no cure. Only early detection and supportive treatment can improve the quality of life. There is a drug hydroxyurea that can reduce the frequency of crisis. With generous support from the centre through AYUSH, we are currently evaluating low-cost sustainable treatment ideas. Hence, at Maharashtra Arogya Mandal (MAM) in Pune, an ayurvedic medical college, the sickle cell anaemia project was launched to cater to the needs of tribal people in rural areas. MAM provides a team of devoted medical staff and undertakes screening at over 25 villages for sickle cell disorder and other health problems.
Why was Dhadgaon tehsil selected for sickle cell control programme and what are the challenges you face?
Dhadgaon tehsil is located in the extreme northwest part of the state, sharing borders with neighbouring Gujarat and Madhya Pradesh. Here, the tribal population is backward and majority of the villages are scattered. It is also a difficult hilly terrain. It is tough to approach the area for any development project, and hence medical facilities available are also inadequate. We organise free health camps, where rapid detection of sickle mutation can be done on the spot. This helps us identify the “carrier” from “homozygous”. At our sickle cell camps, we reinforce the sense of urgency for counselling, diagnosis and treatment. For example, pre-marital and genetic counselling are offered, affordable and accurate diagnosis are done and free medicines are supplied to improve quality of life and reduce blood transfusions. This is important because once you can identify a carrier, marriage counselling will prevent the disease, which is otherwise incurable. One very important activity we have started now is community awareness programmes. During these programmes, we give lectures and create awareness among patients. One of the challenges we face is the need for more dedicated workers to provide primary healthcare. There is also a requirement for specialised clinics in remote areas to provide basic supportive treatment.
As there is no cure, so what steps should be taken?
No curable treatment is available at present. Techniques like Bone Marrow Transplantation (BMT), gene therapy and hydroxyl urea treatment are very costly and not affordable. Symptomatic treatment may give some relief. The Centre has made significant contributions in sickle cell assistance and support programmes. I think, for a sustainable programme, keeping resources and population in mind, a larger blueprint needs to be evolved with well-identified deliverables at various levels. Also, getting the attention of indigenous Indian pharma industry to develop therapeutics is essential. Larger human resource base needs to be developed. We have to involve more interdisciplinary areas in combining resources to study sickle cell disease that is now an endemic in several parts of India and is definitely a major tribal health problem. This includes fundamental researchers, pharma industries and infectious disease experts. We have to better characterise the Indian sickle cell disease in comparison with the African and Jamaican cohorts and focus on identifying factors that can aggravate sickle cell disease. I also plan to have a non-profit research foundation that will really take these activities further.
