Amir Ullah Khan, economist and professor at the MCRHRDI of the Government of Telangana, on why the objective should be not to make thalassemia more manageable, but to get to the root of the problem to reduce both— cost of care and the disease burden
Healthcare is composed of many threads. As we battle the pandemic that crippled healthcare infrastructures around the world, the thought is even more pronounced. We cannot make healthcare better by limiting our resources to counter only certain disease burdens. When hospitals flooded with COVID-19 patients, there were many vulnerable groups at the receiving end. One such group is that of thalassemia patients who need frequent blood transfusions. In a country with the largest number of children with Thalassemia Major in the world, we are fighting the odds here. While one to 1.5 lakh kids are born with the disease, about 10,000-15,000 children suffer from Thalassemia Major. From the rising healthcare costs to the kind of attention that vulnerable groups need, the virus has taught us many lessons. And the most important lesson here is— choosing prevention over management if we are to beat the rising costs of treatment on thalassemia patients and save lives.
What is thalassemia
It is a blood disorder which causes the body to produce an abnormal form of haemoglobin, leading to a large-scale destruction of red blood cells, leading to anaemia. Thalassemia is an inherited disorder. Haemoglobin consists of two kinds of proteins— alpha and beta. If the body does not form enough of these, the blood cells underperform and are not able to carry enough oxygen in the body. This leads to anaemia. In most cases, this condition starts in early childhood and last a lifetime. Anaemia can cause pale skin, fatigue, weakness and shortness of breath.
Pandemic-imposed lockdowns put thalassemia patients at the receiving end of the spectrum, as they struggled to get access to life-saving transfusions, which they need every two weeks depending on their haemoglobin level.
Understanding the need for advanced interventions
This is a good time for introspection to promote new therapies which have been approved worldwide that promise to reduce the time between two blood transfusions. India should look at making therapies like gene therapy available to more people. The objective is not to make the disorder more manageable, but to get to the root of the problem to reduce both— cost of care and the disease burden.
Another major hurdle standing in the way of reducing the thalassemia burden is the lack of awareness. The preventive norms in India are weak, which leads to the passing on of the genetic disorder unknowingly in children. As per statistics, in India, one lakh patients lose their lives to the disease before they turn 20 due to lack of access to treatment. What we need is a comprehensive policy to address the issue, the need for intervention and a framework that makes advanced treatments affordable and accessible for our patients.
The Future: Solutions we need
From awareness-led campaigns to ensure strategies to prevent its spread, diagnosis, and the importance of taking the treatment properly, it’s a long way ahead for India if we start now. For years, children with the disease relied on bone marrow transplantation as the close to possible cure, also, something not affordable by many. It is followed by repeated blood transfusions, and regular iron chelation therapy to remove the excessive iron overload. The time is now to take a pause and think about the solutions that promise long-term results. From advanced testing techniques to policies that promise to bring the right therapies to thalassemia patients, the government must act.