To bring down the country’s burden of thalassaemia, every person in the country ought to be screened to find out if they are carriers of the blood disorder, said pediatric hematologist D. Ramana.
The probability of a child suffering from the genetic disorder is 25% if their parents are carrier. If one of the parents is a carrier, the child could either be normal or a carrier.
According to World Health Organisation, thalassaemia is a blood related genetic disorder which involves the absence of or error in genes responsible for production of haemoglobin, a protein present in red blood cells.
Medicine, test costs
When a child is born with thalassaemia, he or she has to undergo blood transfusion once a month. The cost of medicines and medical investigations could cost around ₹12,000 per month per patient if the person is not eligible for Aarogyasri, the State’s health scheme.
Apart from this struggle, patients might suffer from transfusion-related infections, allergies and side effects which further affects not only their quality of life but also that of their family. “One of the side effects is accumulation of iron in liver and heart. We check patients after every 10 transfusions, and iron-removing drugs are given to them,” said Dr Ramana at a press conference here on Saturday.
Preliminary screening
Stressing how screening tests can help cut down the number of cases, the doctor said a couple can undergo ‘haemoglobin electrophoresis’ test, which costs roughly around ₹600 to ₹800, to find out if they are carriers of the disorder. In case both are carriers and still decide to have a child, another test helps in knowing whether their child is thalassaemic, a carrier or free of the disorder altogether.
“Cord blood sampling (CBS) test can be conducted during eight to 10 weeks of pregnancy to know if the child has thalassaemia. If the child indeed has it, parents are counselled on what the disorder is, its implications and complications since the person will have it for life,” Dr Ramana said, adding that it is then up to the parents to go ahead with the pregnancy or abort the foetus.
Through CBS sampling, many countries have ensured babies with thalassemia are not born, he added.
750 cases in TS
With ‘Thalassaemia-free Telangana by 2022’ as the aim, members of Thalassaemia and Sickle Cell Society-Telangana have called for a government order directing all gynaecologists to prescribe haemoglobin electrophoresis test.
The test helps to determine if one is a carrier of thalassaemia and if done through the society, costs about ₹350.
Society president Chandra Kant Agrawal said a Continuous Medical Education programme was held with gynaecologists and senior doctors to underscore its importance in prevention of the disorder. Every year, around 750 new thalassaemia cases are reported in the State. The society serves around 2,590 patients and at least one case is registered every second day.
He said medicines and investigation tests cost ₹12, 000 per patient per month. “The only permanent cure available is bone marrow transplant which is expensive, and therefore, unaffordable for the poor,” he added.
