BHUBANESWAR: Social stigma continues to pose a greater challenge to people with sickle cell disease (SCD) than the disease itself. The stigma scale ranges to the extent of untouchability in many pockets, thanks to the lack of awareness about the disease and its features among the society, health experts said here on Saturday.
The first meeting of the newly-formed National Alliance for Sickle Cell and Thalassemia Control (NASCETC), held on the sidelines of the 16th annual congress of the Odisha Haematology Association, focused on three S’s – screening, stigma eradication and social awareness on SCD.
Joint secretary of the organisation Asish Kumar Pradhan, working as a senior executive in a national PSU, narrated his experience of living with SCD. Despite leading normal life with effective treatment, he has been subjected to various challenges ranging from fear of socialising with him and even in marriage.
His dignified well-paying job, a stable career and family background could not come to his aid as a long relationship could not convince his partner’s family to agree to the marriage. A person with SCD can marry and have normal conjugal life and progeny but with proper screening of the partner so as to avoid both having sickle genes, experts said.
“Kundli milao ya na milao, lekin sickle cell reports milana zaruri hai (Match horoscopes or not, but matching sickle cell medical reports is a must),” said deputy director of the National Health Mission, Madhya Pradesh, Ruby Khan.
Senior haematologist Prof RK Jena said the Union government’s National Sickle Cell Anaemia Elimination Programme (NSCAEP), launched on July 1, 2023 across the 17 high-prevalence states including Odisha, aims to eliminate SCD as a public health problem by 2047 and is being watched internationally for its scale.
Odisha is among 17 states in the country with a high prevalence of SCD. Official data shows around 10.61 per cent of the population screened in the state carries either the sickle cell trait (SCT) or the disease itself. “Medical interventions alone are not enough, and that patients themselves must lead awareness efforts to break the taboos surrounding the disease,” he said.
The voluntary organisation has been set up to build a stronger support system for people living with genetic blood disorders like SCD and thalassemia. On the day, around 156 SCD patients and their family members attended the meeting which also featured a screening and health check-up camp by leading hematologists of the country.
Alliance president Dr Arpita Priyadarshini and member Sraddhita also spoke. Renowned hematologists Prof Manoranjam Mohapatra of AIIMS-New Delhi, Prof Tuphan Dolai of NRS MCH Kolkata, Prof Maitreyee Bhattacharjee, director of Institute of Hematology & Transfusion Medicine Medical College, Kolkata, Prof Jina Bhattacharyya of Gauhati Medical College, Debarpita Mohanty, scientist with Regional Medical Research Centre and Dinabandhu Sahoo, former team leader of NHM Odisha, were present among others.
