With nearly 10,000-12,000 babies born with Thalassemia every year in India, the Union Health Ministry has issued its first-ever set of guidelines that intend to improve the detection and management of the patients suffering from the inherited blood disorder.
The guidelines under project Stop Thalassemia provide a detailed road map focusing on creating awareness, screening and offering affordable cure by setting up appropriate infrastructural facilities such as labs at the hospitals and primary health centres.
The move to frame guidelines is significant as India despite having one of the highest Thalasssemia rates globally yet lacks the medical structures and personnel to support and cure patients with the disease across the States.
A senior official in the Ministry admitted that very little data base is available to assess the burden of the disease, its social financial and emotional impact as well. Thalassemia major is 100 per cent preventable.
Though management of Thalassemia cases is available at the tertiary care centres guidance from the State Governments is still needed to identify and upgrade the treatment, official added.
The guidelines stress on creating a national registry to not only provide numbers but also ensure an important tool for planning patient services. Meanwhile, incorporation of disease-related messages and information in school education ( text books) and school health programs and adolescent programme and incorporation of a chapter at undergraduate level by putting in MCI curriculum is equally important.
The guidelines also focus on counseling at-risk couples who need to be identified prior to marriage, on the assumption that they will then decide to separate and each find another, non-carrier partner. There is a need to counsel carrier couples as well.
Capacity building for health service providers on screening protocols and counseling, infrastructure strengthening such as provision of screening facilities up to PHC level, training of doctors and nursing staff are some of the major features of the guidelines.
It also stresses on the need to identify Bone Marrow Transplant centers (BMT) at various states, setting up a thalassemia day care centre across the districts having facilities for component therapy, electronic weighing scale, emergency kit for managing blood transfusion reactions, blood transfusion sets and availability of leukodepleting filters if possible.
It is estimated that over 300,000 affected children are born every year globally comprising one third from India.