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The Maldivian Mission: Life and Death in Paradise

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Poirot:
You are absolutely right about the power of the media in today's world and using the media to help get our job done. I don't think we have even scratched the surface of how we can use the media in India to raise awareness of the issue. So, there is a lot for us to do.

RE: The Gujarat government - they are one of the most efficient, if not the most efficient, state government in India. It's good to see them being aware but as Narendra points out, action is another topic! At the same time, the issue of thal is more acute in Gujarat as the Gujarati community has the highest incidence of the thal gene in India. Hence, it is a more burning issue for the local government. If the local government actually does provide funding for setting up a major thal centre, then that would be a great example for others.

New orgs - you hit the nail on the head, Andy, when you said that we need orgs that concentrate on other things beside education - blood, filters, diagnostic tests, etc. I can see this diff clearly between Bombay and other cities ..... In Bombay, we have the Indian Red Cross Society organising huge blood donation drives, so that no one in the thal centre associated with the IRC has to run around for blood. Similarly it raises a fair bit of money along with another foundation (We Care Trust) to provide free L1 and desferal to those who can not afford it. And, neither of these are "Thal Associations". I think there are a couple of similar of orgs in Ahmedabad (in Gujarat) too. And, I think we need these type of orgs in all the other cities too.

Unfortunately, I think the major Thal orgs in India are in a bit of rut .... and, to be honest, those of us who care about this have no idea about how we can really change these orgs. So, if anyone has any ideas about this, we are all ears.

Thanks.

Poirot:
RE: working with government or making governments work - I think we will agree to disagree, Andy. I have had to deal with both state and national governments at differents points in time, both for personal and work reasons, and I have invariably been fatigued. So, I prefer to work with/for private orgs where I can see the effect of my efforts, and I get a bigger bang for my limited energy.

But, this is not to discourage those who still want to influence the govt through lobbying. It's only my personal opinion that the money and effort is better spent elsewhere.

Cheers

Andy Battaglia:
Poirot,
We may agree on this more than you know. I said local government is the best place to work if you want a response. I agree about state and national governments. My own state government is a dinosaur and not much can be done to change it. But at the local level, things are much different. In fact, the more a wheel squeaks, the more it gets attention. And they are also extremely responsive when there is a lot of media coverage. Using the media in today's world is where we will get our best results and it is about the only way we can get government to move at all. Government on its own may be mostly useless but with the proper prodding they will sometimes act to save their own skins.

The problem with orgs is also not easily solved because they also become embroiled with politics. And new orgs concentrating on action may be part of the answer.

Obviously, we have a huge battle before us but I do believe we have to use every method we can and use every org, public or private in our fight. I've seen them using media in Maldives and they are having some success although the problem of too few resources is huge there, as it also is in India, Pakistan, etc....the list is too long. And we do need to find private sources of funding because government is already either overburdened or corrupt, depending on the government, so let's not close any doors while we try to open some new ones.

SalD:
Media advocacy, the strategic use of the media to influence decision makers in public policy, can be successfully used for an issue such as this.  But a campaign needs to be carefully planned as the media is a wild beast that can do the unexpected at any moment!  There is a large literature surrounding media advocacy and techniques that can be used, should anyone be interested.  This could be used equally in the Maldives or India.

The discussion has centred around government and private organisations - but what about engaging NGO's? Philanthropists?

Just throwing around some ideas...

Oh, is there a national thalassaemia organisation in India?  Or just local/regional groups?

§ãJ¡Ð ساجد:
Media is definitely the best choice for public awareness. Recently in Pakistan, the top level government used the media; such as newspapers and TV (especially the national TV showing the Health Minister taking a bite on a drum-stick :rotfl) to spread the awareness that there is no threat to the public from the recent Avian Influenza Virus H5N1 (a.k.a bird-flu) because the poultry industry was taking a huge blow from the scare; consequently the government was also suffering losses in terms of taxes on this industry. As a result, people are now, slowly getting back to the normal routine.

What I am trying to say that if the top level government gets involved, then there is a much bigger and faster response than the efforts of the handful organizations. Unfortunately, our government cannot be easily convinced to fund and motivate the media if there is no direct incentive for them like the taxes as in the case of Bird-flu. They are not concerned about people's health; all they are concerned about is the sound of "Cha-ching"

That's my findings of our government that is focused more on personal benefits than the community  :mad

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