With barely two weeks left in the fiscal year, the Health Ministry has completed a miniscule 1% of its ambitious target to scan one crore people for sickle cell disease in 2022-23. The Ministry is starkly behind schedule, having screened just a little over one lakh people this year, according to official data accessed by The Hindu from the National Health Mission’s portal for sickle cell disease.
Sickle cell disease is a genetic disorder in which the red blood cells of the patient turn into a sickle-shaped crescent shape, become rigid and sticky, and get clogged in the blood vessels. “The capacity of these cells to carry oxygen reduces, which leads to excruciating pain and organ damage in the affected patients. If a male and a female carrying a sickle cell disease trait have a baby, there is a 25% chance that their baby will have sickle cell disease,” a doctor working with the Ministry explained.
The minutes of a meeting of the 7th Mission Steering Group convened by the NHM reveal that the target set for 2022-23 was to screen one crore people. However, only 1,05,954 people have been screened so far, out of which 5959 people, or 5.62% of those screened were found to be carrying sickle cell disease traits.
‘Eliminate disease by 2047’
In her 2023 Budget speech, Finance Minister Nirmala Sitharaman said that India aims to eliminate sickle cell anaemia by 2047. This means that the incidence of the disease will be reduced to a specified level, with continuous efforts to prevent recurrence. Achieving this goal would involve screening at least seven crore people under the age of 40 years in multiple phases by 2025-26. A budget of ₹542 crore has been proposed by NHM for the massive exercise.
The Health Ministry has now written to the States and assigned tentative State-wise screening targets for timely completion of the exercise. While there are approximately 15 lakh estimated patients living with sickle cell disease, they have not been yet identified by the screening system. The challenge of data unavailability is huge, the Ministry has observed.
This challenge was flagged in an inter-ministerial meeting held last month between the Ministry of Health and Family Welfare, the Ministry of Tribal Affairs, the Indian Council of Medical Research and other stakeholders.
Central registry
The fear of a large number of these patients slipping through the cracks is real. This would mean that their access to diagnosis and treatment is scarce. The Health Ministry is now working to create and maintain a central registry for all screened persons. This will be the first such registry to be maintained at the central level. “Currently, data of sickle cell patients from various States is fragmented and scattered,” a senior Ministry official told The Hindu. The Ministry has now developed a portal and an app to capture the screening data.
In the inter-ministerial meeting, it was pointed out that one priority group for immediate screening is pregnant women. “In the long-term, screening of targeted population of unmarried adolescents between 10 to 25 years will be undertaken,” a senior official said.
Vaccine for newborns
For those born with the disease, the Ministry has indicated that administering pneumococcal vaccination to newborns is critical. “Currently, pneumococcal vaccine is not included in the universal immunisation programme, but for those born with sickle cell disease it is a must, as such children have low immunity and are susceptible to catching infections,” the official explained.
Regular and timely screening of the population is important because in a previous screening exercise of over 1.13 crore people in 2016, which was conducted separately by the Ministry of Tribal Affairs, up to 9,49,057 (8.75%) tested positive for the sickle cell trait. Up to 47,311 of these ended up with full-blown sickle cell disease. “The average life expectancy of a person who develops sickle cell disease is 30 years less than normal,” the official explained.
It is consequently important to vaccinate newborns and also provide timely drug treatment to patients, using Hydroxyurea which helps relieve pain. “Once the patients develop sickle cell disease, there is currently no definitive cure. We can only put the patient on maintenance treatment. Hence the solution would be to create awareness amongst those who carry the sickle cell trait to refrain from marrying another person who also carries the trait,” the official added.
