Subhojit Roy, Partner & Co founder Connections & Rotarian Volunteer for Thalassaemics
Over 40 million carriers in India
Over 1.1 million major carriers
An average of over 1 lakh spend per patient
A burden of over 2.5 lakh blood transfusions every year
Over 90% of spending from pockets of the patient party with no Government support
50% of thalassaemics unemployed
It is said some of the biggest movements in the world were started by the student community and since the world celebrated the International Thalassaemia Day on 8th May, this is an awareness write up for students to raise their social responsibility.
In 1938 India recorded its first case of thalassaemia, a genetic blood disorder, commonly characterised by the abnormal production of haemoglobin in the body. The abnormality results in improper oxygen transport and destruction of red blood cells. It has wide-ranging effects on the human body like iron overload, bone deformities and in severe cases can cause heart diseases. People living with thalassaemia require regular blood transfusions as an effective measure to prolong life.
No major effort to set up a prevention and control programme at the national level
As the World Thalassaemia Day approaches us on May 8, India is regarded as the thalassaemia capital of the world with over 40 million carriers plus and over 1,10,000 thalassaemia majors undergoing blood transfusion every month.
But despite such alarming figures there has been no major effort to set up a prevention and control programme at the national level. As the numbers grow the only solace for the patients are from private or non- governmental organizations. Figures are quite shocking; with over 1lakh patients dying before they hit 20 years as every year over 10,000 children are born with thalassaemia major, the misery is piling on and is a sad commentary on Indian health care system.
Need for national policy
What India needs today desperately is a National Policy or frame work implementation to deal with the increasing burden of thalassaemia victims. In a federal structure which is herculean but not impossible.
There is very little awareness about the disease in the absence of a national plan to prevent, control and provide adequate treatment for patients. Although some States provide free transfusion and some free medicines to thalassaemics, there is a need for a better care facility and emergency services and lab tests.
Strategies to control thalassaemia need to include 1) Educating health professionals, school and college students, pregnant women and the population at large 2) Establishing prenatal diagnosis facilities in different regions of the country 3) Setting up a greater number of Day Care Centres for managing existing thalassaemia patients 4) Developing cost-effective facilities for stem cell transplantation across the country. This review explores strategies by which Central and State Governments, NGOs, Parents-Patients Societies and Corporate Houses can work together to successfully reduce the burden of hemoglobinopathies in India. The good news is Guidelines for implementation of such a national programme have recently been prepared by the National Health Mission, Ministry of Health and Family Welfare with the help of several experts in the country.
Every student must be the ambassador for the campaign to not only get himself/herself tested for thalassaemia carrier but also build up a movement where he/she can mobilse and sensitize their friends, family members, immediate neighbourhood to get their blood tested for trait carrier.
Let every student become ambassadors of change.