Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Andy Battaglia on August 06, 2006, 03:31:17 PM
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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
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.
From http://www.impactchildren.org/About_Thalassemia.htm
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...
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.
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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
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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.
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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!
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!
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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
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Hello Peoples!
One thing that you're not considering is the cost of implementing screening programs. I know that testing is cheaper than treating, but health economics is a funny thing. As far as I understand people cover the cost of their own treatment in India? Is this true? If so, the government doesn't have an economic driver to introduce screening - at least not government funded screening.
But Shikha is right, putting thal on the government's agenda is one of the most important things you can do - and it might provide a great opportunity for awareness raising (especially if you get them tested and one of them is a carrier!). I am at the 11th International Congress of Human Genetics at the moment, and there are a few people from India talking about thalassaemia. One of them is Prof. Mammen Chandy who conducts BMTs in Vellore, and he put up a picture of a famous actor (whose name I have forgotten) and said he is a thal minor - HE might be able to help raise awareness in India??! :idea
Cheerio!
SalD
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I think , if i am not mistaken , Mr. Amitabh Bacchan is a thal minor!!!
And once upon a time, Mr. Sunil Dutt was present at the Mumbai thal conf.
shikha
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We have touched on this subject of adding spice to bring attention to thalassemia before... It is already being done with mention of thalassemia in movies and also fund raising by stars there.
In Kolkata, the Thal Association is working very very hard and for their fund raisings they have roped in famous personalities like film star Mithun Chakraborty and cricketer Surav Ganguly.Now Mithun Chakraborty is a big donor to the Thal Association of Kolkata.
Shikha Mitra
Yes, testing does cost money, and of course we have considered that, but the cost of care for thals is far more. The Indian government may mostly ignore thal on a national level, but as has been pointed out, some local governments are involved along with social organizations, in encouraging testing for the thal gene. The point of the statistics is to show that this is a problem that is too huge to ignore and that it is increasing at such an alarming rate, that it will not be possible for the government to perpetually ignore it. As the Indian economy continues its rapid expansion, health care will become more of an issue and the government and social institutions will become more involved. Do you really think that the government will continue to ignore thal as so many thousands continue to die from it each year? The economic driver will be the economy itself, as the growing class of those that have, demand better services, just as has been the case in the western nations. When I was a child, health insurance was rare in the US, but now well over 80% of the US population is covered. As health care issues become more a factor in Indian life, screening programs will be seen as the most cost effective way of dealing with thal.
The world wide thalassemia problem will only become worse in the coming years as emigration brings it to areas that have previously not seen it. The "boom" of cases in California demonstrates this and certainly the call for screening will get louder. As Shikha pointed out, all it takes is one bill in a legislative body to bring attention to this. Expect to see thal screening at birth to become more common around the world as goverments mandate it be included in the screening already done at birth for many conditions. With 7% of the world population carrying the thal gene, this is a problem that won't go away and won't be ignored. Screening will happen as the alternative will result in health care costs that no goverment will want to deal with.
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Mr. Amitabh Bacchan is a thal minor
I just read today that Amisha Patel(another film star in Indian movies) has Thal(minor) From:- http://timesofindia.indiatimes.com/articleshow/664928.cms
And we already know - Pete Sampras is a Thalassemia(Minor)
-Narendra
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Hi,
The Big B is also a thal minor. I keep thinking that it is a good idea to get some of this celebs to endorse a few public service messages on TV. Think about it. Is it a good idea?
Regards,
Namitha
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Hi Shikha,
I was reading your post where you make the statement that electrophoresis should be made MANDATORY for all pregnant women in India. My question is, why only the mother, it should be both the mother and the father as I believe that he should also be aware of his condition. Also, I know that people do go in for blood tests, and if they have depressed MCV and Hb, they should also get tested for thal. This should be done by the doctors. My belief is that government in itself cannot get the awarenessss for thal, it should also be the doctors who deal with the people person-to-person and as suggested in the discussions here, by some of the well known celebrities.
I do agree that getting tested during pregnancy will certainly help the silent carrier to know that she is a thal carrier. However, my concern with this approach is that a would-be mother who did not know earlier about her status may be depressed to such a degree that it might affect the innocent little baby as the well-being of that innocent little bundle of joy is tied integrally with the well-being and mental health of the mother (as well as the father and others who are in the immediate environment of the mother and can impact mother's mental frame of mind - maybe I am hypothesizing, but that's what I think).
Maybe I am playing devil's advocate, but I think your suggestion regarding a detailed blood that tests for thalassemia be made mandatory for issuance of a marriage license may have some holes in it. In case of India (or maybe for that matter the other south-east asian countries, like Pakistan, Sri Lanka, Bangladesh, Maldives, etc) think of the vast multitude of population that live in the villages who get married off and their marriage is not even registered, so there is no question of a license to be issued and thus no need for a blood report.
I think a better option would be get every new born tested asfor thalassemia a part of the vaccination program, which I know no parent ignores in any part of this world. This will ensure that the family as well as the patient is aware of the condition if he/she has it and necessary precautions taken during their development into adulthood and then subsequently, during marriage. And, since the blood report would be available as a part of the vaccination regimen, the parents can match the blood reports (as they do match blood reports for HIV nowadays - beleive it or not I read it in one of the bengali panjikas (almanac)) when they are busy matching horoscopes (sorry, I could not let that pass :)).
Any thoughts on this ....
Bostonian
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HI,
I agree completely with this...
I think a better option would be get every new born tested as for thalassemia
I think this needs to be done worldwide. With literally hundreds of millions of carriers of the thal trait in the world, it makes sense to test every newborn for the trait so they have this information available for their life planning. It would also serve to educate the public about the danger involved when two carriers have children. This is a task to be appoached anywhere from your local hospital and local government to the UN and WHO,
From the local to the national to the international level this effort needs to be made. Let's end the surprise of thal major births in our lifetimes. Let's employ every avenue to both encourage testing and to publicize thalassemia.
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HI ALL
Andy how many time i have to say we must have an army for fighting against the PpL who just want to colect money and live all the world go to the hell ((am sorry but am realy angry :mad)) it's not only in these area which you said it's all the world even in USA .
so my plan is prebare all thalassimic with spicial treaning :letsgo :bat and go to UN and hold all the deplomatic on one corner so even they lestning to us or give them some hard time :evilplan
khalifa
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Hi Bostonian
I was talking about the indian situation, where hardly anyone will go for a blood test unless and until absolutly needed.
So since in India, all pregnant women do go for a blood test at least ONCE during their pregnancies, then that is the best time to get them tested, or esle make ELCTROPHORESIS compulsory in India along with a registration cerificate for marriage. India, 90% of the marriages are not registered, because we have these socail ceremonies.
Then again, Blood is not tested but horoscopes matched, which is ridiculous.. so how does one spread an awareness, unless by law?
And only the Govt. can do that ina counbtry like ours, where we have a huge population, ruled by different customs and basic education is still a long way off.
So we do need to make a law and make registration of marriages compulsory along with a blood analysis of the couple.
And I am sure this will be a far somple process.
We do have a hearing coming up for the gay rights in the supreme court soon!! It depends how loud your voice is!!!
shikha
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When I visited India in Feb 2006, some NGO's mentioned they did testing in schools(Pre-K's are better) prior to admission of the kid (This obviously can be late - but atleast they can detect a minor) and if they find a carrier, provide genetic counselling to the family with a red flag if they plan for another baby
-Narendra
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Dear all
The situation in India is not different from what we have in Egypt. It is exactly the same.
The outcome of ignorance is what i am suffering now although i am well educated. In the mass media no one has ever mentioned any thing about thal. Actually many doctors don;t know what it is, they have just read it once in the medicine school. If i only knew i was carrier many things would have changed. I am thankful to God for whatever i have,but hope that we are more informed about the disease. When my son was diagnosed two months ago, i wanted to do something so that no one will be in my shoe again. I started telling my friends and family members that they have to do CBC for themselves. They should be aware of there bodies.
In addition, I am going to contact a friend of mine who is a famous anchor here in Egypt and i am going to suggest discussing the topic of thal in her show which is seen on a free to air channnel.
What is funny is that we only have one doctor who knows everything about thal management ( she has done tremendous efforts in this field and i will post it later in another topic ) and works in many researches with professor Laucarelli, but what if any thing happened to her. Believe me many are going to suffer including me. Of course we have two or three other doctors,but no one like her.
Anyway, i will call my friend as i told you and will keep you updated.
Manal
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Hello Manal,
It's not just your part of the world that there is ignorance in regards to this blood disorder .I live in Perth west australia and I struggle with my health every day and yet waiting, to get a good satisfying answer from a heamatologist, as it is now I've been told that they can't do anything for me.
My general practionioner will treat me and prescribe medications for the arising conditions that I already suffer from. such as Diabetics, Hypertention, high colestrols, osteoarthritis in both knees and intermittent pains in my bones and joints.When faced with stressfull situations I get so muddled and exausted that I feel I want to kill my self. still I feel that everyone one concern that can treat me think its a joke and this continue to fustrate.Yes today is one of my bad days :-\
I have practically given up on the doctors and trying my best to keep me sane and treat myself the best way I know how and that takes a lot of efforts on my part.
P:S it has been ascertained that I have defected genes. such is lfe I have to learn to accept the thing that i cannt change and make the most of what life I've got while i still have it.
thank-you for your time and good luck to all.
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Kathy,
Sorry to hear you are having a bad time. I know some days are better than others, and some can be downright awful. I spent 4 hours in the emergency room on Sunday, and I have to have a CAT scan today. It's the constant dealing with chronic health problems, and working with medical people who don't know what to do that is so frustrating. As the thal population gets older, there are new medical issues that no one has dealt with before. Also, in some parts, doctors have no thal experience at all. :rotfl
You have so many medical issues, I can see where you get so down. I really feel for you and can see how you get to the point of wanting to just forget about it all. Please hang in there! There may be medical advancements which can help you in the future. You are a good person who has given encouragement to others in this group, and now I'm giving it back to you. It is so good to have a place where we can express our frustrations - it has meant a lot to me.
Kathy, please take care and know I am thinking about you and wishing you well. Jean
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Hi all,
In case of India (or maybe for that matter the other south-east asian countries, like Pakistan, Sri Lanka, Bangladesh, Maldives, etc) think of the vast multitude of population that live in the villages who get married off and their marriage is not even registered, so there is no question of a license to be issued and thus no need for a blood report.
Just to let you know that even in the remotest of islands in Maldives, marriage cannot be performed without the presence of majistrates and witnesses, hence every marriage in Maldives is registered and a marriage certificate is issued. In Maldives, testing before marriage has been made mendatory by the law, hence no couple in Maldives can marry unless they provide the cards (or reports) which indicate thier thalassaemia status, so even if two carriers marry, they are aware of thier status, given genetic counselling and told of the consequences they may have to face and of the options they have if such a consequence arises.
But i agree with what you have said, that is, if the marriages are not registered, making the blood test mandatory before marriage may not be so useful and the best way in such cases would be as you have said, putting it into the vaccination system so that every newborn baby is tested.
Maako
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Dearest Kathy :heartred :heartred
Come on be strong. I know sometimes we feel that we cann't struggle any more, but this our role now to remind you that you can and you will always do. You kathy had given me a lot of support when i first started to post. Where are you words to me. Please remember as long as you are good from inside you can do any thing and endure every thing. Please take good care of yourself and try to go out with people you like, sit in cafes, go to cinemas, this will change your mood and remember that we are all there for you. feel free to talk to me at any time. Show me your smile now! :smile2 :smile2
Take good care
Manal
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Thanks Manal your kindness and encouragemnt is appreciated. Today i'm going to do my volunteer work, that will cheer me up.there I meet with people from different part of the world and they are so eager to learn.I Always feel better after my two classes.
kathy.
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HI Jean.
Thank-you for your support ,I hope your cat scan result is good.life goes on I need to be gratefull I have made it this far, sometimes I wonder why :dunno
Its another day in paradise I'm going to work and that is a blessing to me.that is because I'm still being of service to others.take care and good luck my friend :flowers
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I think , if i am not mistaken , Mr. Amitabh Bacchan is a thal minor!!!
And once upon a time, Mr. Sunil Dutt was present at the Mumbai thal conf.
shikha
Yes, you are right. I saw it too somewhere but can't find it again. I also read somewhere that besides Amitabh, Pete Sampras (Tennis player) and Zinadin Zidan (French Soccer player) are also Thal minors.