cicero
12 May 2006 14:51
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Around the world
As you may have seen, we asked
12 young people with bleeding disorders about how their life is affected by having the disorder. The answers vary a lot and it is clear that if you come from Europe or Australia, where treatment is widely available, you are in a much better position to live your life as any other. If you happen to live in a developing country, treatment can be sparse and you are more likely to suffer joint damage, which in turn could become a major burden in your daily life.
Globalization has the potential to bring prosperity to developing countries and with the advancement of medical knowledge, leading to cheaper and more effective treatments, let us hope for a future, where medicine is available for all.
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cicero
17 Jun 2006 23:25
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A few days ago we added an extra person to the "Around the world" article. Walid from Egypt was kind enough to send us his answers and he thus became the first representative from Africa. Now we are only missing North and South America to have all the continents covered... hint hint!
Oh, we are also missing Antarctica of course, though the odds of finding any people with bleeding disorders down there are probably pretty slim. Maybe we should have a competition: who will be the first bleeder to log on to Los Bleedos from Antarctica...? :-)
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cicero
29 Jun 2006 23:30
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David from Canada also kindly sent us his answers, putting North America on the map. Now only one continent (except Antarctica) is missing.
South America: now the pressure is on you! :-)
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nship
06 Jul 2006 13:34
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actually in Indonesia, some of the places don`t make cryo, and those places usually have no concentrate. some places are lucky enough to have Fresh Frozen Plasma, and some just have to be content with Whole Blood.
as for the concentrate, you have to pay above the 100 USD for a vial of 250 IU.
I do really hope for a cheaper, more available and more effective treatments in the future. :)
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cicero
06 Jul 2006 20:18
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Just to put it into perspective, how much is an average monthly salary in Indonesia in USD?
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nship
08 Jul 2006 09:45
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actually, I don`t know. it varies. even my salary varies. :)as for me, as a single woman, usually 100 USD is enough for a month.
but one thing for sure... most of the hemophiliacs came from middle or lower class of economy. I cried when one of the mother came to me crying, and said "there`s no money even to buy food, so how could I afford the cryo?"
so, do you think she could afford a concentrate? :)
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e-win
16 Jul 2006 18:37
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Well, as we all know Haemophilia is a low volume (incident case) but high consumption (i.e. expensive treatment). Therefore, I guess if we have to really pay 100% of the medication costs by ourselves, most of us will never be able to afford it (not even for developed conutries).
What I am trying to say irregardless of how much our per capita income per person or based on our take-home salary, can we afford to pay for the concentrate solely by ourselves in long term.
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cicero
17 Jul 2006 21:12
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Actually, once - due to a mix-up at the hospital - I got an invoice for the concentrates I had picked up a few weeks earlier. The shipment contained enough concentrate to keep me going for about six months. If I multiply the amount on the invoice by two to get the yearly cost of the concentrates I use, that amount would exceed the income I have left after paying taxes. I am fortunate to have a well paid job and to not require that much concentrate to treat bleeds. Other haemophiliacs in my country are in a far worse position if they have to pay for their own medicine. Luckily for us, that is not the case now, but it is something we fear in the future as the pressure for reducing expenditure in the hospital system increases.
This is just to emphasize e-win`s point and to illustrate that even those of us who live in the developed world cannot take a proper treatment for granted.
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