Policy to curb genetic disorders in works

The Union Health Ministry is firming up a national policy envisaging mandatory genetic screening of all the pregnant women with an aim to cut down or prevent Haemoglobinopathies,  prevalent inherited disorders such as thalassemia and sickle cell anemia.

Manoj Jhalani, Additional Secretary, Union Health Ministry, said, “We have recently released a policy on the Prevention and Control of haemoglobinopathies in the country. Now a panel set up under the Directorate General of Health Services is working on a national policy to make mandatory genetic test for such disorders.”

The move has been long awaited as prevention is the best modality to reduce the disease burden in the country, experts said on Tuesday at an event here on the occasion of World Thalassemia Day.

According to an estimate, Indians have the largest Thalassemia burden in the world and nearly 4 per cent people in India are carriers of ß (beta) Thalassemia trait. About 10,000 - 15,000 babies with Thalassemia major are born every year.

To prevent such births, it is important that pregnant mothers are screened for such disorders.

Deepak Chopra, President, Thalassemic India, an NGO, rued that while crores of rupees are being spent on lifestyle diseases not much is being done to create awareness in the urban as well as rural areas among couples who are getting married. Unfortunately, even gynecologists and pathologists are not aware of the disorder.

“If every person pledges to make aware at least one person daily about the disorder, we will see sea change in the sector,” he added.

Vineeta Srivastava, Consultant, Blood Cell, Union Health Ministry, talked about various initiatives undertaken by the Government such as free blood availability for the patients, Free iron chelatrion therapy in every district and joining hands with PSU Coal India for free bone marrow transplant to cure the thalassemic kids.

Bollywood actor Jackie Shroff who has taken the cudgel on behalf of Thalassemia India to spread awareness about the disorder too felt that everybody should be aware of it and before having a baby, one should get a blood test done.

“Otherwise, if you have Thalassemia minor and you get a baby with Thalassemia major, then it’s a problem. Every 15 days the child will need to undergo a blood transfusion. So why make the child suffer because of the parents’ ignorance?” he said.

Delhi Minister for Social Justice and Welfare Rajendra Pal Gautam said that to make the country free of Thalassemia by 2025, all the sectors need to join hands and reach out to the people at the rural level where even basic medical facilities are missing.