Thalassemia…The Lesser-known Evil!
“What is Thalassemia?” asked my friend. I was talking to her telling about my Round Table India friends (RTI) who want to further the cause of making people aware of Thalassemia. When asked this question I realized that I didn’t know much either about this illness. Just that it is a genetic blood disorder. Those suffering from this illness need a blood transfusion.
And mind you we are a part of the intelligentsia, yet are so ignorant of this particular illness that is less known and can be as fatal.
Shame on me. I decided to meet Dr. Vijay Ramanan the best in this field. If I could help spread awareness about Thalassemia with his help I certainly would.
Dr. Vijay Ramanan has been doing a lot to help people with Thalassemia, to help diminish the large numbers prevailing.
Sitting in his room at the Cancer Centre, Ruby Hall Dr. Vijay Ramanan spoke his heart out.
“In a nation of a 120crore people, we must have 4 or 5 corers who have Thalassemia… that is 2 to 3% of the population.
The sickle is another disorder that comes along with Thalassemia. It occurs especially when two people who have Thalassemia marry one another.
HBE is highly prevalent in Asian Countries. East Bengal is one.
Talking about all these three issues, carriers of the illness would be 12% to 15%. Patients would be 30 lakhs.”
What about blood transfusion with such large numbers suffering?
“Not all need blood transfusion. People who have Thalassemia major need to undergo blood transfusion. Thalassemia minor does not have to. But yes, India loses 3.5 crore blood bags in transfusion.
Thalassemia is prevalent largely among economically backward classes.
If you are transfusing those 3 crore blood bags, its price being Rs.1500 or Rs.2000 each, cheap by the Indian standard as compared to the UK and Canada…multiply Rs.2000 by 3 crores. It is Rs.6000 crores.”
“You can save those 6000 crores and give it to the patients. We can buy them a treatment and get all those 6 lakhs kids out of blood transfusion. We can save that much blood.”
He speaks of the psychological impact on those who have Thalassemia and need to go undergo a transfusion regularly.
“All of them are depressed and suffer from inferiority complex.”
He speaks of his own relative who shies away from telling others and her friends whenever she has to go for her blood transfusion every 21 days.
Why does it have such a stigma?
“I would not really call it a stigma in some cases. The patient does not want sympathy from others. Can you imagine the burden the sufferer carries every time he or she does not tell the truth! The psychological growth of these people is obtunded. Patients who undergo transfusion regularly have a short lifespan…not beyond 20 to 25 years of age.
A child can die by the age of 25. Blood transfusion increases the iron content. The heart can fail due to this. The liver can fail.
Transfusion and transplants are not a solution for Thalassemia in this country.”
Yes, in certain strata’s of society there is a stigma attached to it. It is understood and believed that Thalassemia is transferred to the child only by the woman, not by the man. And so, it leaves the man free to marry again and of course spread the illness. Hence for the sake of marriage people don’t voice this illness.
Another reason why screening of the blood becomes an issue.”
Transplants? Bone marrow Transplants?
The Cancer Center at Ruby Hall is also a Transplant Centre.
“In 30 years all over the world, 5000 transplants have taken place. Every year during that period 50,000 people with Thalassemia were born across the world.
We created 15 lakhs new patients in 30 years when you treated 5000. Out of those 5000, only 2000 lived. Others died because of complications of transplant.
So, what have we really done with transplant in the last 30 years, when actually the numbers are increasing?
This is not the solution for the future. A Solution has to cater to 50% to 60% of the population. You cannot have a solution that caters to only .03%”
This was a person who had his math in place. I was not very good at the subject. But all that he said made sense. He made it easy for me to understand.
Understand what? That some measure needs to be taken soon to contain this illness? How?
“The government needs to step in.”
“Modi had a free screening for kids in school. However, none came to collect the reports. Anything given free is not valued. People should be charged a minuscule amount and the amount be given back when collecting the report.”
He is of the firm belief that the government should start screening kids in schools and then in high schools and then colleges. One should not wait for screening to be done just before marriage.
In fact, if any member of the family is diagnosed with Thalassemia the entire family should undergo a checkup it being a genetic disorder.
The check-ups should be synched to the Aadhar card. Make the screening mandatory.
“Cypress”, he says has controlled the illness by 95%. At the time of marriage, they had to go to the priest. If any of them had Thalassemia they were given a red card. If one did not have it he was given a green card…No two individuals who had Thalassemia could marry.”
India needs a solution for screening. For a treatment that will benefit the broader bottom of the pyramid and not the top of the pyramid; the few who can afford the lakhs for a transplant.
“People who get free treatments; remember someone else is always paying for that. Nothing is got free. It costs.”
Dr. Vijay Ramanan recently went to Delhi to the Rajya Sabha to speak on Thalassemia.
One of the ministers from the ministry posed a question wanting to know if there were other remedies besides transfusion and transplant. The answer was in the negative.
According to Dr. Vijay Ramanan, a proper initial Complete Blood Count (CBC) test should indicate signs of Thalassemia.
The report needs to be read properly.
Sometimes thalassemia is masked by anemia (iron deficiency). Indian women are prone to iron deficiency. It is attributed to poor eating habit. However, it needs to be ascertained that it is anemia so one can rule out thalassemia minor. To determine the iron content there is a test called Ferratin.
Dr. Ramanan has created an app for the play store called Thalassemia Diagnosis. One can check his or her blood count. It gives a rough idea of where you stand. It is a cheaper solution. If there is a doubt that the patient has thalassemia, he or she can go for further screening. Not all can afford Rs.1000 for the screening.
“56 crore people have a mobile at least they can get tested.”
Wheat germ has curing abilities. It is used in curing cancer and now is also used for controlling Thalassemia.
“In 1994 Dr. R. K. Marwa came up with a paper where he mentioned a treatment with a wheat germ that helped control Thalassemia. He supported 25 patients suffering from Thalassemia. However, he himself did not go beyond the number. He was a government employee and kept on innovating for Thalassemia till he passed away in 2013.”
There are strategies being experimented to bring in a permanent cure. And the next best therapy is the GENE THERAPY.
2000 survive in a Transplant. With Gene therapy 4900 will survive.
“The Stem Cell therapy is less dangerous as it is the patients own cells being used. The cells are taken out modified and reinfused.”
I asked him if by this we were limiting the numbers, as this also could be expensive.
“It is labor intensive. Just by reading an article on gene therapy being used for a cure the therapy will not get done. It takes years. Let’s say we work with 50,000 patients a year to cover 30 lacs, it would need 6 years.”
When numbers go up the mortality rate goes up. To maintain quality, we need to focus on a lesser number.
According to Dr. Ramanan, this is the best and the only cure for people who have Thalassemia.
He also feels the need of the media being involved, and this is where I would love to step in.
“It would be brilliant if a celebrity would step in and speak of this.”
I hope some stalwart in the Indian Cinema is reading this!
“We need first to educate the people and make them aware of this illness called THALASSEMIA!” is his message to all.