The Union Health and Family Welfare Ministry’s recently released a policy on the Prevention and Control of haemoglobinopathies in India. With this, people living with thalassaemia, sickle cell anaemia and other haemoglobin disorders can now look forward to better screening and treatment.
Highlights of the policy:
The policy aims at creating treatment protocol benchmarks, to improve the quality of life of patients.
It is also a guide on prevention and control, which includes antenatal and prenatal testing to reduce the incidence of live haemoglobin disorder births.
Using public health awareness programmes and education, it highlights various haemoglobinopathies.
The guidelines include the creation of a national registry to plan future patient services. The registry will also collect useful data, such as the location of patients to identify areas of high concentration, ethnicity or other characteristics, age distribution, records of deaths and their cause.
Supported by the National Health Mission, Blood Cell and the Rashtriya Bal Swasthya Karyakram, the guidelines provide for screening of pregnant women during the antenatal check-up, premarital counselling at the college level and one-time screening for variant anaemia in children.
Thalassaemia and sickle cell anaemia are the most frequently encountered ‘rare blood disorders’ in the country and impose a significant economic burden on families. They are caused by errors in the genes responsible for the production of haemoglobin, a substance composed of a protein (globin) plus an iron molecule (heme) that is responsible for carrying oxygen within the red blood cell. These disorders can cause fatigue, jaundice, and episodes of pain ranging from mild to very severe. They are inherited, and usually, both parents must pass on an abnormal gene in order for a child to have the disease. When this happens, the resulting diseases are serious and, at times, fatal.