Context

  • The Union Health and Family Welfare Ministry had recently released a policy on the Prevention and Control of haemoglobinopathies in India.
  • People living with Thalassaemia,
  • sickle cell anaemia and other variant haemoglobins can now expect a better screening and treatment practices

Why in the news?

  • The guidelines include the creation of a national registry for future patients.
  • The registry shall further 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.
  • 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).

Abstract

  • Haemoglobinopathies and thalassaemia are inherited disorders which affect a large number of individuals in India and impose a significant economic burden on families
  • Thalassaemia is the name for a group of inherited conditions that affect a substance in the blood called haemoglobin.
  • With a population of 950 million and a birth rate of 28 per thousand, it has been estimated that there would be about 42 million carriers and about 12,000 infants born each year will be inheriting a major haemoglobin disorder in India.
  • In view of this heavy genetic load, frequent blood transfusions, high cost of treatment and management, physical trauma, and psychological and mental harassment to the patients and their families, it has been realized that the preventive genetic approach is the most suitable for the Indian setting.
  • After carrier detection, prenatal diagnosis and genetic counselling are important options for couples at high risk for Haemoglobinopathies, a prerequisite for a successful prevention and control programme is health education, public awareness and sensitization, and screening of the population for identification of heterozygotes or carriers in the community.

Loopholes in the Policy Carrier testing for relatives

  • The policy makes no reference to carrier testing for relatives of patients as a result people with the genetic disorder unknowingly pass it on to their children, as preventive checks are not the norm in India.
  • 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.

Free treatment

  • Only 20% of patients in India can afford treatment for This makes it more important that free treatment is given to all patients.
  • Further, all chelation drugs should be made available free because one drug does not suit all
  • Right now, the only states that offer free treatment are Rajasthan, Uttar Pradesh, West Bengal,
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