Let's Make India Thalassemia Free
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Thalassemia happens to be one of the most burdensome non communicable disease (NCD) affecting children in our country. It is estimated that every year nearly 10,000-12,000 children are born with this disorder. This is in addition to the estimated 200,000 children already living with this condition. Children with this disorder need regular blood transfusions every 3 weeks and regular medications to prevent complications all through their lives.
Thalassemia is a genetic condition meaning it is passed on from the parents to children at birth. If both parents are said to have a thalassemic trait then there is a 25% chance that the child is born as a thalassemia major. An earlier study of a sample population estimated that nearly 4% of the Indian population is said to have a thalassemia trait. Perennial blood shortage, absence of public funded healthcare, lifelong suffering to the children, parents and families truly make Thalassemia a grave national health challenge
Thalassemia prevention is a possibility. It requires a simple blood test of expecting parents to confirm that they have a trait. However, unfortunately this is not part of the routine investigations planned by gynecologists. If every woman gets checked for this at the time of her first pregnancy and is found to have a trait, the partner also could be tested. If both of them have the trait, then antenatal diagnosis can be carried out to determine if the foetus is positive for thalassemia major. If yes, there is an opportunity at hand to prevent the birth of a child with thalassemia and avoid potential suffering for a lifetime for the family.
In several forums the Government has announced that universal screening for thalassemia will be done for pregnant mothers to prevent the birth of more children with this disorder. Unfortunately, this announcement has not converted into any action substantial action on the ground. Expectant parents have no idea on where they can get screened. For example, a March 2017 Government of Karnataka order mentioned that screening will be implemented in all district healthcare facilities. Unfortunately, children with thalassemia continue to be born.
This petition is to serve a reminder to the Ministry Of Health & Family Welfare, Government of India and Government of Karnataka on the need to urgently start working on their own commitment and ensure the screening for thalassemia for pregnant mothers. The Government must also insist gynecologists to include this as part of the routine investigation set that is mandatory during the first few weeks of pregnancy.
Read more about thalassemia prevention here: http://www.sankalpindia.net/page/sankalp-program-thalassemia-prevention
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