Today I came to know of a parent who virtually killed their own child due to the harassment faced at the hands of hospital staff. Their child was a Thalassemia major, AB-ve. After suffering from heavy medical expenses, negligence and rash behavior from staff, frustration and helplessness, they decided to stop bringing their child for regular transfusions. The child died in 3 months. This came as a shock for me. A slap on all those faces who may want to believe they are working in the field of transfusion medicine. How tough this decision would have been on those parents?
Well, I was disturbed and restless about this. So I started to browse through various Thalassemia sites. Then I came across this wonderful story of change, the story of Cyprus. Cyprus is the country with highest number of Thalassemia carriers in the world. Cyprus has almost one in 7 trait carrier. This means there are chances of 1 in 158 births being Thalassemia major. And this was exactly the number of Thalassemia majors in the country till 1973. Then something changed and 38 years down the line, no thalassemic babies have been born in the last 5 years in Cyprus!
Before 1973, Cyprus was a developing nation. The average life expectancy for Thalassemia majors was 3-4 years. Due to the high occurrence of the genetic disorder, there was a tremendous demand for transfusions. This increased the cost of transfusions which in turn affected other medical costs, threatening the very existence of entire healthcare system of Cyprus. In 1973, WHO recommended screening for trait carriers before marriage. The Cyprus government went a step ahead and made the screening compulsory. Cyprus is an orthodox country where communities are majorly influenced by Orthodox Church of Cyprus. The role of the Church was crucial because engagement and marriage of Cypriot couples requires blessing and a certificate from the Church. And the Church actively supported this program.
Over the years, two things happened in Cyprus:
i) Due to the advances in medical field and rise in country’s economics, people were able to afford better treatment. The children born with Thalassemia major started to live longer. Now their average life expectancy is about 30 years. Many of them are married and even have normal children.
ii) Though the tests were compulsory before marriage, two carriers were free to marry. But, due to the increased awareness, today almost none of the trait carriers marry each other. Interestingly, the obligatory screening and counseling for Thalassemia in Cyprus is against the standard bioethical norms. But as a nation, Cyprus chose health and prosperity over the ethics!
In India, every year about 10000 children are born with Thalassemia major which corresponds to the ratio of 1 in 16000 births. Compared to Cyprus’ rate of 1 in 158, this is much lower. Still, we are far behind what Cyprus has achieved. So what can we learn from this program? I can only think of one suggestion from Dr Arvind Lal, Chairman & Managing Director Dr Lal PathLabs Pvt Ltd, “Match blood rather than Kundlis!” Better awareness, proper screening for Thalassemia trait resulting in early detection, better healthcare facilities for children already suffering with disorder are some of the steps which would ensure that none of the parents have to face the fate of those mentioned above. Let’s fight Thalassemia together.