Policy boosts care for blood disorders
The Union Ministry of Health and Family Welfare 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 look forward to better screening and treatment.
Thalassaemia and sickle cell anaemia are the most frequently encountered ‘rare blood disorders’ in the country and impose a significant economic burden on families. But the policy makes no reference on carrier testing for relatives of patients. This leads to instances where people with genetic disorder unknowingly pass it on to their children, as preventive checks are not the norm in India.
Objective 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, aimed at reducing the incidence of live haemoglobin disorder births (currently pegged at 10,000-15,000 live births a year)
- It also envisages creating a national registry to plan future patient services. The registry will collect useful data such as location of patients, to identify areas of high concentration, ethnicity or other characteristics, age distribution, records of deaths and their cause
- Since not more than 20% of patients can afford treatment, the government should ensure that all patients get it free. All chelation drugs should be made available free because one drug does not suit all
Ways to achieve policy objectives:
- The policy is supported by the National Health Mission and the Rashtriya Bal Swasthya Karyakram
- The policy guidelines also provide for screening of pregnant women for rare blood disorders during antenatal and prenatal check-up, pre-marital counselling at college level and one-time screening for variant anaemia in children
- Public health awareness programmes and education, to highlight various haemoglobinopathies can also help achieve objectives of the policy