The Maldivian Mission: Life and Death in Paradise

I will try to cover both the events and issues in Maldives and also sprinkle in an assortment of photos. Be patient, as these trips put me so far behind at work that it takes some time to get through all of this too.


The first thing I noticed as the plane approached Hulhule Island where the airport is, was how beautiful the islands and ocean were. The ocean is a blue that I have never seen along the Atlantic shore. Hopefully, the photos will do justice to the true beauty of the Maldives.

There is a definite irony to life for thalassemics in the Maldives. In spite of living in what most people would call a paradise, many patients find little hope in their own lives. Care is relatively new to the Maldives and is not as comprehensive as needed, but great strides have been made in recent years and will continue to be made. The oldest thal there just turned 26. The reality that they can live longer is just starting to be realized, but some don't seem to have much incentive to go on. The reasons for this go beyond medical and go to the heart of a society that has only barely begun to change their mindset towards the possibility of survival in thals. So much needs to be done there to bring acceptance to thals. Only then will all of the patients see real hope for their lives.

We have lost three of these young people in the past few months. In each case, a lack of chelation compliance was the major factor. Shilpa and I are talking to our friends regularly, encouraging them to comply and trying to show them that life is worth living and we need your help. Please give your input on what makes you chelate and why. Let these people know they are not alone and that there are always reasons to live. We have found such genuine, wonderful friends there and I think if you take the time to talk to some of them online, you will agree.

Let's see what we can do to help change this topic's title to simply Life in Paradise.

Andy – what I think needs to be done is to use the pyramid effect of education. You need to educate the members at the top such as you medical team treating doctors working with thal patients, the nurses caring for them and then come your associated members such as your cardiologist, endocrinologist, social workers and so on.

Once the medical team knows what thal is, how it works and what happens then they are able to direct the parents and patients and any family members.

If you have a well educated medical team, parents & patients are well educated then you have the ability to attempt to educate the wider community.

Question: Has TIF (Thalassaemia International Federation) ever done a delegation visit to the Maldives?

IF yes – did they assist in anyway?
IF no – perhaps its time for a delegation visit to take place.

They have all the right material to educate and possibly direct or assist in getting the govt to start awareness. 

Question: Have any of the doctors from the Maldives attended any of the TIF Conferences?

I know I did meet some lovely young ladies from the Maldives in Dubai that worked in a research lab I think it was. But you need the doctors attending to get the hands on experience from our more senior doctors that deal with the older generation of thal patients.

As for the patients in the Maldives and any other part of the world that are here on this forum your not alone out there living with thalassaemia, you have many like you around the world and we are all united by heart but it’s the distance that makes us so far apart. You can do this – think positive

I agree completely about the necessity of educating parents, patients and care-givers. And this is being done to some extent in the Maldives. They still have a long way to go, but they have to be commended for their efforts in recent years, which have been done within limited financial budgets, but are reaping some success. However, there is a definite shortage of doctors and especially specialists, the thal center is smaller than needed, blood is generally scarce, resulting in lower than optimum Hbs (8), and there are some serious social issues that need to be solved. I could go on about what is needed there.

Our trip there was an educational and morale-building mission to the parents and patients and also to the organization people. We have seen a significant effect already and we are trying to build on this. I do hope the members of this group will take some time to talk to our friends, not only in Maldives, but around the world, and let them know how things are where you live. Share information, teach, learn, use this group for everything you can get out of it and also for what you can give. Don't assume it's the same everywhere. When you make your appointment, go in and get blood with no hassles you can tend to forget how hard it may be just to secure the blood in many places, let alone how different the care system may be there.
 
I have no involvement with TIF, so Miaki, you may be better able to find out what TIF has done in Maldives than I am. I do know when I asked about it at SHE, the answer was that they were a bit mystified by the amount that TIF has (or hasn't) been active there. WHO does lend some support but it can only be used for educational and awareness programs, which is ok but they have immediate needs for things like pumps and good quality needles, and that takes more money than they have. Blood filters are a luxury there because of their high cost and many patients don't get to use them. We know this isn't good. Considering the amount of patients getting transfused there, pre-filtering would probably be a better choice for blood, but that will involve an outlay of funds that don't exist unless something else is short-changed.

I do believe at least one doctor from Maldives attended the TIF, Dubai conference. The doctors there are trying but there are not enough doctors for the amount of patients there. Overall, there are too few doctors in general in Maldives and a doctor such as Dr Niyaf, who recently was doing research in Melbourne is now in pediatrics instead of working with thals because there is a shortage of pediatricians.

None of this will change overnight but it will change and we have to do our best for these people and really for thals everywhere. I have read a lot in this group about the best ways to get attention for thal and what type of institutions are the best sources of help, but I think we shouldn't limit ourselves. Let's be shameless promoters of the cause and use EVERY method available to bring attention and find help for thals. 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!  I take every opportunity to educate about thal, including talking to the airline counter people about why I was going to Maldives to the immigration and customs people in Male and New York City. The more awareness that can be created, the stronger public support will be.

We need to find solutions. We need to find ways to increase awareness and acceptance of thals. As the speaker in India said, we need more garam masala in thal. More spice. We have to make some noise and it starts with each person. If you can get enough attention it will lead to better funding and better care.


Thanks to Shilpa for her considerable contribution to ideas in this post. 

Well said Andy.

I will look into things with TIF and see what has been or can be done for Maldives.

I will keep you all posted.

Miaki

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.

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

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.

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?  ...I was served some delicious pudding and mangoes..   
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.

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! 

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 .....  .... really, Andy, you must let me know when you meet one!!!!   

Take care, mate.

Poirot

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

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.

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.

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.

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.

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.

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

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.

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?

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 ) 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