On 19th August 2025, Sickle Cell elimination mission announced that it had completed screening of 6 crore individuals. As of now the program envisages screening entire population (upto 18 years of age) in tribal dominated districts of 17 states of India (Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar and Uttarakhand).
As per the dashboard accessed today on 15th November 2025, of about 6.5 crore individuals screened, 18.2 Lakh individuals have a trait and 2.30 Lakh have Sickle Cell Disease. These numbers mean that about 2.8% of screened individuals have a trait (carry sickle cell gene), and 0.35% manifest the disease.
My interactions with Sickle cell Disease
My medical undergraduate as well as postgraduate training was in the thick of sickle-cell belt of India. We saw many adolescents and young adults, who would come to the hospital in extreme excruciating pain. Their pain could start from any of the limbs, chest, or trunk. One of these sufferers of Sickle Cell Disease was a medical student, who would come to hospital quite frequently, and we would run fluids and painkillers through her veins. Most would go back home with less of pain, and some would again come back later, again and again.
Since this condition has a geographic and social distribution, I never encountered such patients in northern and eastern part of the country where I had worked. But coming back to Bhopal, it is again at a northern fringe of India’s sickle cell belt. Physicians who have not trained in the belt, would never encounter those with Sickle Cell Disease. However those who have, are quick to flow enough fluids and painkillers through the blood vessels of their patients. Managing acute painful crisis in sickle cell disease has remained virtually unchanged over last many decades.
Diseases also have their social standing
Unfortunately some diseases are more neglected than others. Health systems prioritizes diseases that are numerically large, affect the influential, receive more media coverage, or where success is a low hanging fruit. Sadly, sickle cell disease fits-in none of the above paradigms. So, after so many decades of neglect when in 2023 India launched a drive towards its elimination, it was a bitter-sweet moment. Bitter as we diagnosis needs a molecular test, and for treatment we still have only a few tools with us. Sweet, as we as a nation were finally talking about it.
What does screening achieve
First premise of a screening test is, that if it is positive it should really confirm the disease. When it comes to Sickle Cell Disease, Hb HPLC fits well on this criteria. Second, we should be really able to do something about those who are screened positive. We can prevent infections, and educate those with sickle cell disease. However, the Achilles heel is Sickle cell trait. For every disease, there are 6-8 individuals with a trait. Genetic counseling (so that two individuals with a trait or a disease, understand the risks when they raise their progeny) is currently the only public health remedy. This stands a chance only when large numbers in the community are screened.
Advocacy gets a postage stamp
Another tryst with Sickle cell disease was on 15th November last year, when India post issued India’s first postage stamp on the condition. I trudged along with my colleagues to Dhar – a small tribal dominated town in Madhya Pradesh. With colorful attires, and amongst thousands in audience, there was a stamp moment. Hon Governor and Chief Minister of Madhya Pradesh released the stamp, and later posed with the stamp blowouts. The diagnostic testing and genetic counseling machinery has chugged on. Low cost tests are being tested, and hopefully better treatments are not far away.