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Journalism of Courage
Way back in 2019, 91-year-old Prof Sudam Laxman Kate, emeritus scientist with the Indian Council of Medical Research (ICMR) and former Deputy Director, Tribal Health Research project, B.J. Medical College, Pune, was crusading to help tribals suffering from Sickle Cell Anaemia. Today, Union Finance Minister Nirmala Sitharaman, while presenting the Union Budget, declared it as a national mission.
He has done pioneering research in Sickle Cell disease, specially among tribal populations of India. He was the first scientist to find Sickle Cell disorder in the tribes of north Maharashtra in 1972. “Diseases of the poor often get neglected in discussions on health. So, the mission to eliminate Sickle Cell anaemia, as announced in the Union Budget, is a welcome move. Prime Minister Narendra Modi has played a vital role in mobilising every resource to treat the diseases of the poor and marginalised sections of society, especially Sickle Cell anaemia in affected populations. I was fortunate to discuss this with him and am confident this step will go a long way to alleviate the suffering of the poor,” says he.
Dr Kate has set up two centres dedicated to Sickle Cell anaemia in northern Maharashtra. He explains the nature of the disease and why a national mission is needed to combat it.
What is sickle cell anaemia?
It is an inherited genetic disease where a point mutation in haemoglobin makes it abnormal and prone to structure change. This causes the red blood cells to take an abnormal “sickle” shape, which obstructs blood flow. This can lead to severe haemolysis, persistent anaemia and affects the functioning of other organs in the later stages. Common symptoms are anaemia, jaundice, liver and spleen enlargement. In severe cases, patients have debilitating orthopaedic conditions called avascular necrosis of femur. The disease can be very severe and reduces quality of life. Patients have very painful conditions called “crisis.” There is no complete cure. The only way we can help the patient is by providing symptomatic treatment and pain management. Improve nutritional status. There is a drug called Hydroxyurea that has been shown to reduce morbidity. Currently, my organisation, Sudam Kate Research Foundation, is conducting a clinical trial of this drug on patients in collaboration with ICMR to see its efficacy in Indian Sickle Cell patients.
What is the burden of disease?
The disease burden from Sickle Cell anaemia in India is prevalent in tribal populations, especially in Maharashtra. The disease burden figures may exceed 14 lakh across India, but with intensified screening, the numbers are likely to increase. Tribes like Pawara, Bhil, Madia , Gond and Pardhan from Maharashtra have a very high prevalence. Approximately more than three lakh patients in the tribal areas are affected. Sickle cell anaemia is most prevalent in the central India belt covering states like Gujarat, Maharashtra, Chhattisgarh, Orissa and parts of Bengal. There are pockets in the south, Tamil Nadu, Kerala and parts of Telangana.
Why is Sickle Cell anaemia so under-diagnosed and how can it be prevented?
There is a lack of screening awareness and inadequate screening centres/facilities in tribal and rural areas. Also, failure to access primary healthcare is a concern. Please note that Sickle Cell anaemia is a genetic disease. The only prevention lies in a timely diagnosis through cost-effective and large scale screening camp along with marriage counselling. Prenatal diagnosis can also play an important role.
What are your concerns?
Resource utilisation, proper definition of the projects, implementation at grassroot level and collaboration between government and NGOs are the key. We have treated more than 5,000 patients over the years. Based on early field experience in remote inaccessible tribal areas, our main challenge was lack of adequate medical laboratory infrastructure. We developed point-of-care indigenous, low cost, simple and minimally invasive diagnostic tests for hemoglobinopathies that could be performed at homes of these remote tribal populations. We set up a community health care centre in 1998 called “Sickle cell Dawakhana” in the remote Satpuda hilly areas of north Maharashtra under the aegis of Maharashtra Arogya Mandal Hadapsar, Pune.
