Sunday, November 27, 2011

Saving Hugo- When Swedish and American Healthcare systems get it right, together




One of the questions I still get asked, on both sides of the pond, is 'But what is the healthcare like, really.' And I am pretty sure that what they really want to hear is 'Yeah, it pretty much just sucks over there, you guys have it so much better, here.'

In truth I am kind of on the fence on this one. There are things I love about both systems, and I will say that I never, in the US, had to beg, lie and threaten to get a doctor's appointment and I never, in Sweden, received a 5 figure bill (in dollars) on a pre-approved procedure. But I have had such experiences in the opposite countries, and they sucked.

But my healthcare experiences are not the point here. This is a story that illustrates how both systems have great things to offer and they can actually help each other, without bucket loads of prohibitive bureaucracy.


Now please excuse my summary to follow, I am not an expert here, I'm just summarizing some of what I read. If you really want to know more, I suggest you go and read the websites, mostly in Swedish, but Google translate helps.

So there is this little baby named Hugo � you can read about him here if you understand Swedish. He was born with a horrible disease, whose name I am not going to even try to spell, because the spelling of it is probably the least horrible thing about it, but is nightmare in and of itself. It is a disease known as EB.There are, apparently, several kinds of EB, and the kind Hugo has is terminal. Most babies with EB of this kind die before they turn 1. EB means there is something wrong with these children's skin, if it is touched it forms blisters. This happens not just on the surface but in their throats, mouths and ears. It is a terrible disease for which there is no cure.

There is, however, one hospital in the US, which started running experimental bone-marrow transplants on children suffering from various forms of EB. Most of these patients were in pain and had short life expectancies. There have only been about 20 patients thus far. Some have seen great success, better skin quality and improved quality of life, some have died during the process � which is also painful and difficult. But the fact is that this bone marrow transplant is the only window of hope for these families.

Which brings us to Hugo's parents, who began a campaign last month to get their son this bone marrow transplant treatment under the Swedish healthcare system. They got some publicity through Expressen and suddenly things started moving. Almost immediately they met with teams of doctors in Sweden who specialized in this sort of thing. And in a few short weeks, they managed to get approval for their young child to go through this process.

I cannot say how impressed I am by the Swedish healthcare system that they were able to get this procedure approved so quickly and so efficiently that it might actually benefit Hugo and his family. Even more importantly, it makes it so much easier for other families in this situation to be able to step up and ask for this treatment if need be.

To me this represents the best of the American and Swedish systems, and I am so happy to see them collaborating in such a positive light. I wish the best to the families involved and hope this can be the miracle they need.  

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