Thalassemia breakthrough: NGO prevents nine births with inherited blood disorders in Karnataka

Bengaluru: Despite the lack of a statewide programme for screening pregnant women for inherited blood disorders, Bengaluru-based NGO Sankalp India Foundation screened over 8,205 women in Karnataka over the past two years, preventing nine births.

Under the programme for hemoglobinopathies prevention, the NGO’s coordinators in 45 high-workload maternity clinics across 36 districts in Karnataka, Andhra Pradesh, Maharashtra, Madhya Pradesh, and Gujarat screened over 50,000 pregnant women within 20 weeks of pregnancy.

If the pregnant women were discovered to carry the causative genes, their husbands underwent screening as well.

Rajat Kumar Agarwal, the foundation’s board member, said if both parents are carriers of the gene for a hemoglobinopathy, there is one in a four chance that the foetus will also be affected. In total, 390 such families were identified.

If the foetus was found to be affected after testing of a foetal blood sample, the families were counselled about available treatment to make an informed choice.

This led to 47 families across five states, including nine families in Karnataka, choosing to discontinue with pregnancy.

Across three centres in Karnataka, the foundation identified that the carrier rates for the screened women in Karnataka stood at 3.5% for all haemoglobinopathies, including a prevalence of 2.6% of the beta thalassemia trait.

Financial burden

Lifelong treatment for the condition include regular blood transfusions, medications and other supportive treatments, which can cost about Rs 2 lakh per year, while the cost of a bone marrow transplant, the only cure for these disorders, is Rs 8 lakh and upwards.

A paper published in the Journal of Community Genetics in January 2020 estimated the annual blood requirement for treatment in India to increase to 9.24 million units by 2026. Budgetary requirements are expected to see an 86% increase.

“We need to ask ourselves if we have the capacity to do blood transfusions and transplants for all. Instead, we could be screening more women to detect this even before pregnancy and prevent births at risk,” Agarwal said.

Prenatal screening

The Sankalp Program for Hemoglobinopathies Prevention has set a target of screening 1% of all births in the country, with their end goal being to facilitate universal prenatal screening of all blood disorders to have a thalassemia and sickle-free India.