This is an archive article published on June 20, 2022

‘Sickle cell disease needs to be notified’

In remote areas, the lack of proper medical infrastructure and knowledge of the healthcare workforce make timely detection, screening and treatment a challenge, says Gautam Dongre, Secretary, National Alliance of Sickle Cell Organisations (NASCO)

3 min readPuneUpdated: Jun 21, 2022 02:00 PM IST

A few states in India have a significantly higher SCD prevalence (Photo: Getty/ Thinkstock Images)

Sickle cell disease, a blood disorder, remains a public health challenge in India, which is estimated to have the second highest burden after Nigeria. “There is an urgent need to notify sickle cell disease,” says Gautam Dongre, Secretary, National Alliance of Sickle Cell Organisations (NASCO).

“SCD as a condition is often misdiagnosed as any other blood disorder. This delays treatment. Moreover, in urban settings, there is a lack of awareness about this condition. In remote areas, the lack of proper medical infrastructure and knowledge of the healthcare workforce make timely detection, screening and treatment a challenge,” he adds.

The most common drug is Hydroxyurea, which effectively manages and minimises pain. In some cases, patients also require blood transfusions and hospitalisation. Stem cell transplants are the closest to a cure for this condition. However, this comes with its own set of challenges. Therefore, as Dongre emphasises, there is a need for a better understanding of the disease and identifying and developing innovative solutions that would help overcome some of the challenges with the existing options.

Also read | Chhavi Mittal: Most cancers are curable but the healing journey depends on you

Nagpur-based Dongre, who has been a Sickle Cell Disease (SCD) carrier and father to two children with the condition, says timely detection and treatment are crucial for disease management. He has been stepping up awareness about the disease via webinars and Youtube videos that provide testimonies of patients suffering from SCD.

With around 18 million people with sickle cell traits and 1.4 million patients with sickle cell disease, India is expected to have the second-highest numbers in the world. Maharashtra is one of the 14 states in India that accounts for a large concentration of tribal groups, who are as vulnerable as Scheduled Castes and OBCs. SCD has a high prevalence in the eastern districts of Maharashtra, which include the Vidarbha region, Satpura ranges and a few districts of the Marathwada region.

Also read | Why stress-related illness is so hard to diagnose, and how a patient-centred playful approach can help

A few states in India have a significantly higher SCD prevalence: Chhattisgarh, West Bengal, Uttar Pradesh, Maharashtra, Madhya Pradesh, Jharkhand, Gujarat, Odisha, Kerala and Rajasthan. Collectively, these are referred to as the sickle cell belt. Although more common among tribal communities, the disease is gradually finding its way across the country due to migration and intermarriages, according to Dongre.

SCD requires a comprehensive model of care that includes timely and accurate treatment along with intense programmes for pre-marital, prenatal, and new-born screening besides administering Pneumococcal vaccination to adult patients.

Anuradha Mascarenhas

Anuradha Mascarenhas is a Senior Editor at The Indian Express, based in Pune. With a career spanning three decades, she is one of the most respected voices in Indian journalism regarding healthcare, science and environment and research developments. She also takes a keen interest in covering women's issues . Professional Background Education: A gold medalist in Communication and Journalism from Savitribai Phule Pune University and a Master’s degree in Literature. Author: She authored the biography At The Wheel Of Research, which chronicles the life and work of Dr. Soumya Swaminathan, the former Chief Scientist at the WHO. Key Focus: She combines scientific accuracy with storytelling, translating complex medical research into compelling public and human-interest narratives. Awards and Recognition Anuradha has won several awards including the Press Council of India's national award for excellence in journalism under the gender based reporting category in 2019 and the Laadli Media award (gender sensitivity -2024). A recipient of the Lokmat journalism award (gender category-2022), she was also shortlisted for the RedInk awards for excellence in journalism-2021. Her debut book At The Wheel Of Research, an exclusive biography of Dr Soumya Swaminathan the inaugural chief scientist of World Health Organisation was also nominated in the Popular Choice Category of JK Paper AUTHER awards. She has also secured competitive fellowships including the Laadli Media Fellowship (2022), the Survivors Against TB – New Research in TB Media Fellowship (2023) and is part of the prestigious 2025 India Cohort of the WomenLift Health Leadership Journey.” Recent Notable Articles (Late 2025) 1. Cancer & Specialized Medical Care "Tata Memorial finds way to kill drug-resistant cancer cells" (Nov 26, 2025): Reporting on a breakthrough for triple-negative breast cancer, one of the most aggressive forms of the disease. Discipline, diet and purpose; How a 97-year-old professor defies ageing'' (Nov 15, 2025) Report about Prof Gururaj Mutalik, the first Head of Department at Pune's B J Government Medical College who at 97 credits his longevity to healthy habits and a strong sense of purpose. 2. Environmental Health (The "Breathless Pune" Series) Long-term exposure even to 'moderate' air leads to chronic heart, lung, kidney issues" (Nov 26, 2025): Part of an investigative series highlighting that even "safe" pollution levels are damaging to vital organs. "For every 10 µg/m3 increase in PM2.5 level, there was 6-8% jump in medicine sales" (Nov 23, 2025): Using commercial data to prove the direct link between air quality and respiratory illnesses in Pune. 3. Lifestyle & Wellness News "They didn't let cancer, diabetes and heart disease stop them from travelling" (Dec 22, 2025): A collaborative piece featuring survivors who share practical tips for traveling with chronic conditions. At 17, his BP shot up to 200/120 mmHG; Lancet study flags why child and teen hypertension doubled between 2000 and 2020'' (Nov 12,2025)--A report that focusses on 17-year-old-boy's hypertensive crisis and reflects the rising global trend of high blood pressure among children and adolescents. 4. Scientific Recognition & Infrastructure For promoting sci-comm, gender diversity: IUCAA woman prof highlighted in Nature" (Nov 25, 2025): Covering the global recognition of Indian women scientists in gender studies and physics. Pune researchers find a spiral galaxy like the Milky Way from early universe'' (December 3, 2025)- A report on how Indian researchers discovered a massive galaxy that existed when the universe was just 1.5 billion years old , one of the earliest to have been observed so far. Signature Beat: Health, Science & Women in Leadership Anuradha is known for her COVID-19 reportage, where she was one of the first journalists to provide detailed insights into the Covishield and Covaxin trials. She has a dedicated interest in gender diversity in health and science, often profiling women researchers who are breaking the "leaky pipeline" in STEM fields. Her writing style is scrupulous, often featuring interviews with top-tier scientists and health experts from various institutions. ... Read More

📣 For more lifestyle news, click here to join our WhatsApp Channel and also follow us on Instagram

Loading Recommendations...

Aug 10: Latest News

Live Blog