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The Maldivian Mission: Life and Death in Paradise

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Narendra:

--- Quote ---Why say forget the government because they have too many other problems in a country like India, where 3% of the population carries the thal gene (out of over one billion people). That's a lot of people carrying the gene and a smart government will eventually catch on to the fact that mass screening for the gene will prove to be more cost effective than treating thals. Why shouldn't the Indian government be involved? It may not be easy but the government will become more involved with social concerns as the Indian economy develops at its record rate.
--- End quote ---

Andy,

While my visit to India in Feb 2006, I met some very good doctor's and they mentioned that the government has been made aware of the issue with Thalassemia(especially in Gujarat where there are approximately 3000 kids born with Thalassemia each year). He also mentioned they had a meeting with the Health Minister of Gujarat and that they were going to open a very big center in Gujarat (When that would happen is a question), but I think what you mention about the government being involved has started to happen.

-Narendra

Andy Battaglia:
Narendra,
That is good news and it needs to be done throughout all of India. Goverment is supposed to be there to serve and we should always take the attitude that we are going to insist that they do just that. Thalassemia is just a huge problem in countries like India and Thailand and it affects so many thousands each year, that it has to become an issue that governments deal with. If we make enough noise and get the attention of the media, government and other institutions will take more notice. And we need to be prepared with good arguments. If we show governments that both prevention entirely, and also proper treatment of those affected, are more cost effective ways of managing thalassemia we will make good progress in our battle.

Andy Battaglia:
We arrived in Maldives after an overnight flight from Dubai, where we had been able to meet our friends, Mam and Danny and their son Teddy, and also paid a visit to the home of Ambareen and her brother Affan, and also met their family. Their parents were very sweet and once again...and how does everyone seem to know this is my favorite?  :biggrin...I was served some delicious pudding and mangoes..  :yum 
We had ended up in Dubai for longer than planned, after thal day was shifted from May 8 to the 12th, but it was great to catch up with our friends and also this time we did get to go dune bashing and had a great time.   



We arrived in Maldives to quite a surprise. We thought a few people would be meeting us but the size of the crowd was much bigger than expected and we were thrilled to meet so many friends so soon.

Poirot:

--- Quote from: Andy on May 27, 2006, 03:38:54 AM ---Why say forget the government because they have too many other problems in a country like India, where 3% of the population carries the thal gene (out of over one billion people). That's a lot of people carrying the gene and a smart government will eventually catch on to the fact that mass screening for the gene will prove to be more cost effective than treating thals. Why shouldn't the Indian government be involved? It may not be easy but the government will become more involved with social concerns as the Indian economy develops at its record rate. Corporations will also become involved in terms of health care plans. But to hasten this, the Indian people must be diligent in their efforts to expand awareness and acquire adequate care for thals. The saying is the squeaky wheel gets the grease, so start squeaking!  :biggrin
--- End quote ---


Ummm, Andy, you have done a fair bit of beating up on me about my govt post and a couple of other things, time for me to pushback!!!

Why do I say ... forget the government in India?  Because the government is dysfunctional, to a degree that you can not even imagaine. The Thal association  in Delhi has been lobbying the goverment for ages ..... what have they achieved .... nada. Here is my viewpoint and the context for it - I came of age during the whole liberalisation thing .... the first wave started in 1982 with Rajiv Gandhi and the second age in 1992 with Narasimha Rao .... I have seen private organisations grow and flourish in each and every area that the government has vacated, providing far a more effective solution. And, I think India will continue down this path for many more years .... the govt will vacate and private organisations will fill the vacuum. The reason for this is very simple - the government consumes itself whatever revenue it generates through taxes - for paying its people, for supporting loss making govt units, for defence, for internal policing. Then, add in the graft. Very little is left over for constructive social infrastructure - education, healthcare, rural sanitation, roads, ports. And, THIS IS THE REALITY. The government just does not have that much money to spend.

This is why lobbying the government for thal is unproductive at THIS POINT IN TIME. We may think that our needs are as great as infant mortality, but this is simply not true .... because the politicians will get more votes out of tackling 1% of infant mortality and malaria than they can get if they tackle 100% of thal ...... THIS IS THE REALITY, because those are the numbers.

What is my suggested solution ...... form more private organisations that can take over the role of raising money, generating publicity for both getting untainted blood and for creating awareness, for setting up diagnostic centres. Once you get a critical mass in this, then you can lobby the govt that much more effectively, and at that point, the govt will listen, even if it still does not do anything. I will give you two examples of how this has actually worked in India ..... First is the National Aids Mission .... The govt turned a blind eye to the problem for ages until the noise level from NGOs got too loud for them to ignore, and the media got into the act. The other is our IT industry .... it grew without any govt support successfully and now it has reached a size that it gets the govt to listen to it. Witness the action in Bangalore, Pune and now Kolkata ..... that is the power of critical mass. And, we just don't have it right now. So, we can cry as much as we want .... the govt isn't going to listen ..... that is my cynical but realistic view of the situation.

As far as mass screening goes, that will happen as awareness increases .... but, you know something, Andy? It is not a simple issue - this screening business, because most Indian marriages are arranged. Many a times conservative families refuse to accept girls (sometimes boys) as suitable marriage material after tests reveal them to be minors - bet you didn't know that - so the education has to be not just about getting tested but about how minors are "normal" people.

And, finally, "smart government" ..... what an oxymoron ...... hahahahahahaha .....  :rotfl .... really, Andy, you must let me know when you meet one!!!!  :rotfl  :rotfl

Take care, mate.

Poirot

Andy Battaglia:
I will refer to what Narendra has said earlier in this thread. Government can and will be used.


--- Quote ---While my visit to India in Feb 2006, I met some very good doctor's and they mentioned that the government has been made aware of the issue with Thalassemia(especially in Gujarat where there are approximately 3000 kids born with Thalassemia each year). He also mentioned they had a meeting with the Health Minister of Gujarat and that they were going to open a very big center in Gujarat (When that would happen is a question), but I think what you mention about the government being involved has started to happen.

--- End quote ---

Believe me, I am no fan of goverment, and I live in a country where we have a federal government that wants to ignore most human needs, but the public does have demands and not everything can be ignored. Goverment may never be efficient, but it is foolsih to think it can never help. I also think I did say in another recent post that we have to have other ways to get through to government other than traditional lobbying.


--- Quote from: Andy on May 27, 2006, 08:13:38 PM ---We need a massive lobbying effort to get through to government, but perhaps the old lobbying methods are not the most effective. In today's world, it is essential to get the attention of the media if you are also going to get the attention of the government.
--- End quote ---

The problem is, that old inefficient methods of getting the government machine to work, are not the answer. We need new approaches. Just because someone else failed with faulty methods doesn't mean we will fail if we use better methods. Obvioulsy, from what Narendra told us, government can help. And as I said before, it may be best achieved at local levels in a country like India. But there may also come a day when the national government does help. Government doesn't only happen at the national level. People have much more influence at the local level and it is often the best place to start.

The major point of my argument has been that it is best that we get the attention of the MEDIA. This is the reality of today's world and if you want attention, it is through the media that this will happen.

Your point about the IT industry, actually demonstrates what I have said. Industry growing well without the help of governmnet isn't even relevant, although there are deep political issues involved here that actually have more to do with a US government allowing jobs to be exported to a nation with low wage scales, than anything the Indian government may or may not have done. But once this IT industry is established, they suddenly do have the ear of the government. And once the thal movement is also well established, it too, will have the ear of the federal government.

Another note I'd like to make is about your statement that infant mortality does get the attention of the government. Well, let me ask. How much can this mortality rate be reduced by treating all thalassemics? This is part of the problem in India and the government will take note of that if it is serious about reducing this dreadful statisitc.

We do have organizations like TIF and Thal India, and if they are not effective, why will more new orgs make a difference? The orgs are here. We need to demand better of their leadership, and frankly if that leadership doesn't work, we need to replace them with people who will put the function above politics. I do agree we could use a new org though because the orgs that do exist think mostly in terms of education, and that is very important, but we also need material help. Pumps, needles, desferal, blood filters, blood banks and the list goes on. Education is great but it doesn't take care of those who already have thal. We need orgs that also concentrate on this.

It's never easy to get government to work, but it is more possible at local levels and with the attention of the media, even the national governments do act. I saw the amount of media exposure that Thal Day got in Maldives and  it was amazing. It can be done and in little Maldives they are showing us it can happen. The media is the most powerful tool we have. Let's use it. It will open many doors that now are closed. Just please don't say the word impossible to me. There are solutions. It will take much hard work and much faith in ourselves, but why declare defeat when we haven't even tried? Let's not rule out any source of help that may be there. Let's maximize every possibility.

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