Why in News ?
People living with Thalassaemia, sickle cell anaemia and other variant haemoglobins can now look forward to better screening and treatment, based on the Union Health and Family Welfare Ministry’s new policy.
Ministry released a policy on the Prevention and Control of haemoglobinopathies in India.
What is Thalassaemia, sickle cell anaemia?
Sickle cell disease and thalassemia are genetic disorders caused by errors in the genes
for hemoglobin, 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.
Thalassaemia : Is the name for a group of inherited conditions that affect a substance in the blood called haemoglobin. People with the condition produce either no or too little haemoglobin, which is used by red blood cells to carry oxygen around the body. This can make them very anaemic (tired, short of breath and pale).
About 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 (currently pegged at 10,000-15,000 live births a year).
- Supported by the National Health Mission, Blood Cell and the Rashtriya Bal Swasthya Karyakram, the guidelines provide for screening of pregnant women during antenatal check-up, pre-marital counselling at college level and one-time screening for variant anaemia in children.
- 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.
- 20% of patients can afford treatment, the government should ensure that all patients get it free.
- Such free treatment is given in States such as Rajasthan, Uttar Pradesh, West Bengal, Odisha and Karnataka besides Delhi, and others should follow suit.
- All chelation drugs should be made available free because one drug does not suit all.
Not Address in the policy
The policy, makes no reference to carrier testing for relatives of patients. In Pakistan, a law making carrier testing compulsory for relatives of Thalassaemia patients was passed in February. A similar system is in place in Dubai, Abu Dhabi and Saudi Arabia.
Source : The Hindu
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