Pune: Maharashtra's ambitious push to eliminate sickle cell disease (SCD) by 2047 has led to the screening of more than 1.08 crore people for the condition. The latest government data reveals a sobering reality: thousands of patients are living with the debilitating genetic disorder while lakhs carry the disease silently.
Screening Results
As of June 15, the state government has identified 29,686 individuals suffering from sickle cell disease and 2.23 lakh carriers through mass screening under the National Sickle Cell Elimination Mission.
Dr. Suhas Mohnalkar, deputy director of haemoglobinopathy, state health services, told TOI that while screening is the first step to diagnose patients, preventing the genetic chain is the only way forward. He added, "The state offers free solubility testing for screening and the high-performance liquid chromatography test for diagnoses, free medicines like hydroxyurea and folic acid for patients, regular health checkups for patients on hydroxyurea, and free blood transfusion if need be. However, the most effective treatment remains preventing the chain of transmission in the next generation, for which we counsel young individuals and couples to take an informed decision before conception, especially those who come from affected areas."
The state also offers monthly financial aid for patients and insurance coverage, he said.
Understanding Sickle Cell Disease
SCD alters the shape of red blood cells and restricts blood flow, causing severe pain, recurrent infections, organ damage, and premature death. The challenge is particularly acute among several tribal communities, where the sickle cell gene has historically remained concentrated. Data shows districts of Nandurbar, Palghar, Gadchiroli, and parts of Chandrapur and Gondia have high prevalence.
On World Sickle Cell Day, marked on June 19 each year, experts highlighted that screening alone will not be enough. Informed marriage and reproductive decisions reduce the chances of SCD being passed on to future generations and a lifelong burden on entire families.
Expert Opinions
Dr. Tejas Hambir, consultant and head of paediatrics and neonatal intensivist at Jupiter Hospitals, Pune, said, "SCD is a lifelong and often very painful disease, especially for children. Many young patients have sudden attacks of severe pain that can be frightening and traumatic and can affect their daily life, school, and play. It is not just a medical challenge for families but also an emotional and financial challenge. Parents juggle between hospital visits, medicines, blood transfusions, and emergency care, which can be exhausting and expensive. Seeing a child suffer over and over can be emotionally taxing for the whole family."
He added, "What is needed is early diagnosis, better awareness, and access to affordable treatment. Regular check-ups, preventive care, and counselling support for families can decrease complications and improve the quality of life. With more public health support and community education, we can lighten the load on families and ensure that children with SCD get prompt care and a more hopeful future."
SCD is often misunderstood as a child may appear normal between episodes, but medically it is a chronic disorder, said Dr. Jayant Khandare, consultant of paediatrics at Surya Mother and Child Super Speciality Hospital, Pune. He said, "India accounts for around 14.5% of the global SCD burden and has the second highest number of predicted SCD births. This makes early and continuous care especially important. Care must move upstream through newborn screening, early diagnosis, regular follow-up, vaccination, hydroxyurea where appropriate, stroke screening, safe transfusion support, genetic counselling, and stronger financial protection for families. Individuals from affected communities must undergo screening before marriage, understand their carrier status, and seek genetic counselling."
