How techies helped stop 45 births with blood disorders

BENGALURU: A group of techies who got together to mobilize blood for needy patients two decades back has facilitated 50,000 pregnant women from five states to undergo screening for thalassemia or sickle cell and prevented 45 births with blood disease.
In 2006, they began a systematic blood donation helpline, Disha, as part of various initiatives of Sankalp India Foundation, an NGO.
“Five years later in 2011, we noticed that a hospital was seeking blood frequently. Upon visiting, we came across thalassemia patients requiring recurrent blood transfusion," recalled Rajat Kumar Agarwal, board member of the foundation.
Thalassemia is one of the hemoglobinopathies, a group of inherited blood disorders. Sickle cell disease is another hemoglobinopathy.
Dr Adinarayana Makam, a fetal medicine specialist, highlighted the challenges faced by those living with major hemoglobinopathies: “The way to cure a person is a bone marrow transplant, but since the donor match is so rare, the person ends up having to undergo a blood transfusion almost every third week for the rest of his/her life.”
The low prevalence of these diseases and expensive screenings are said to be a hindrance to the universalization of tests to detect hemoglobinopathies. “The screening costs about Rs 1000 per patient,” Dr Makam noted.
The foundation stepped up to fill the gap left by the absence of mandatory testing for hemoglobinopathies in public healthcare. “Our organization has since held free screenings for thousands of women, their spouses, and fetuses in Karnataka, Andhra Pradesh, Maharashtra, Gujarat and Madhya Pradesh over two years,” Agarwal explained.
Sankalp’s model of testing is not universal either. They only test women under 20 weeks of pregnancy.
“Why we don’t test people before they get married is the stigmatisation. Why we test women below 20 weeks pregnant is they come for health checkups after the bump appears. Additionally, it gives them at least four weeks to decide on an abortion if the child is positive for a disease,” said Agarwal.
Explaining the process, Anjali Sanjay Nandurkar at Govt Medical College and Hospital in Chandrapur, Maharashtra, said a pregnant woman is first tested, and if the test result that arrives in three days is positive, the husband is tested.
For a 25% chance of the disease passing down to the child, both spouses should be positive. Once both parents test positive, the fetus of the woman is tested.
A needle is passed through the womb for a chorionic villus sampling (CVS) test or amniocentesis of the fetus to know the precise genetic disorder. The parents are counselled, and often, the family too. As part of the counselling and awareness, parents are introduced to those who already have a child with the disease to make an informed choice on whether it is viable to have the baby.
The relief for women who discover their fetus has tested positive for thalassemia or sickle cell before 24 weeks is profound. “The option to terminate the pregnancy after being informed that their child may carry a hemoglobinopathy makes a difference to the entire family,” Agarwal emphasized.