Discussion Forums > General Chatter

Thalassemia in India

(1/5) > >>

Andy Battaglia:
We have talked about the problems of thalassemia care in India and elsewhere, where many people do not get adequate care due to lack of funding and resources. What is the reality in India? How much progress has been made?

From http://news.pacificnews.org/news/view_article.html?article_id=03137385cc6b723926f634331f8ef4ec


--- Quote ---The most common genetic blood disease in the world, thalassemia affects some 7 percent of the world's population worldwide. An estimated 3.9 percent of India's population, or 1 in 25 people, carries the gene for thalassemia...In India, around 80 to 90 percent of the 10,000 babies born each year with the disease die from it....The World Health Organization has predicted that one million people will have the disease there in the next 40 years.


--- End quote ---
From http://www.impactchildren.org/About_Thalassemia.htm


--- Quote ---In certain Indian communities like Assamese, Bengali, Gujarati, Maharashtrian, Marwari and Punjabi, as high as 25% of the population are silent carriers of a defective Thalassemia gene...

--- End quote ---

You will find similar statistics in countries like Pakistan and Thailand among others. Things have improved in some major cities like Mumbai for those who can afford care but the stark truth is seen in these statistics. We can choose to just accentuate the success stories or we can deal with reality and try to change the way things are. An assertion has been often made here that the Indian government has too many bigger problems than thal. These statistics argue that. 4% of the poplualtion carries the gene and one million are expected to have thalassemia major over the next 40 years. This is no small matter and the Indian government cannot ignore it forever, and it does no good when the people themselves resign themselves to accepting that government won't help.

Shikha Mitra:
Hi Andy

What a wonderful thought... yes, the success stories pale in comparison to the reality.

I have repeatedly written in Newspapers, that we need to start at the root levels and make Electrophoresis of Blood testing  MANDATORY for ALL pregnant women in India. Maybe that is the only way a silent carrier will ever know that she could be a carrier.
Sometimes there is no history of Thalassaemia in a family, but many of that family members could be carriers.

In my family, there is no one with Thalassaemia, except my daughter.But I have cousins, who are carriers and their children who are carriers. And they know they are carriers, because we had this one child who was born with Thalassaemia.

Most people  are not even aware what Thalassaemia is in India.
Yes we have a huge population. There are other pressing issues which need more attention, but that does not give us any excuse .
Among the Bengali community, E Beta thal is as high as 4-5 %.. which is quite alarming.. then ofcourse there are  the Kuchis, Bohris.....
The cost of treatment for thalassaemia is too  expensive for a country like India and 99% people will not be able to afford it. So in our situation, prevention is the need of the hour.

But how?

Shikha

Andy Battaglia:
Shikha,

You hit the nail on the head but I will go one further. All babies everywhere, should be tested for the gene at birth. Every child has the right to know whether they carry this so that they can make responsible decisions as adults as far as who they decide to have children with. Testing after marriage and before pregnancy is being done in some areas. This is woefully inadequate! Prevention of the birth of thal majors is a worthwhile goal and the best way to accomplish this is testing before people marry. If anyone can give me a reason why thal major should be propagated I would love to hear it.

India's government may say thal is not serious enough but if you do the math you willl realize that there are somewhere in the neighborhood of 50 million carriers in India! This does sound serious to me!

We need to push for universal testing. With current immigration trends, thal will become a booming phenomena across the globe unless checked by testing and responsible decision making by parents to be.

§ãJ¡Ð ساجد:

--- Quote from: Andy on August 06, 2006, 06:33:20 PM ---India's government may say thal is not serious enough but if you do the math you willl realize that there are somewhere in the neighborhood of 50 million carriers in India! This does sound serious to me!
--- End quote ---

The government won't do anything big until they have children with Thal. of their own. I've heard that there is only one Thal in whole of Pakistan that gets Exjade and Surprise! Surprise! he is the kid of some high ranking army personnel!

 :mad Third World politics!

Shikha Mitra:
Hi Andy / Sajid

It is not the question of the Government not wanting to do anything.. it is just the lack of awareness among the Government officials. I am sure, in India, in all probability,  the Health Minister or his cronnies, both at the National and State have not even heard of the word "Thalassaemia".

It just needs one bill for the govt. to spread awareness.. if they make it mandatory that all marriages ( arranged or otherwise)  be registered and they have to present a blood report along with it ( just as there are rules they you must have a domicile certificate and so many other documents for nothing - and without which NOTHING gets done in India).. so why cant we make a blood report mandatory for all marriages?

Or at least make Blood testing  ( Electrophoresis) compulsory for all pregnant women?
 In our society, the poor dont get treated at all in any case!. But at least all pregnant women in the lower middle class, the middle class, the upper middle class and the rich have their blood tested al least once in their lifetime, when they are pregnant. So that is the time to make them aware I guess.
At least they will have an option to decide.
To get into something knowingly is much better than landing into something, which they cannot cope with.

And I think we need to involve the Govt. Health Centers and the OBG s in this process.
And wait till our Govt shakes up and does something!!

shikha

Navigation

[0] Message Index

[#] Next page