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.  


  1. I have read a *little* bit about the Swedish health care system, and from the US, it looks very good. But, there are always pluses and minuses in everything. For all the problems with the US's system, we benefit greatly from medical technology.

    The main question I had was if his case has brought out umbilical cord blood banking. This is becoming more popular in the US with health care personnel (for their own personal use). The main advantage of banking the cord blood is that there is a ready supply of stem cells. It's better than a donation, and much quicker besides. (I tried the link to read about Hugo's case.)

    Thanks for your post. It was very interesting.

  2. I don't get it. In what way did this "represent the best of the American and Swedish systems"? Did they go to the US?

  3. @ Senchaholic Ha, fair enough, this is what happens when I make connections in my head then do not manage to get them down on paper - no, they haven't gone to the US, but they are hoping to have the transplant done here in Sweden.

    I guess it just shows, for me, how two systems can work together - the US has developed this new method which is still highly experimental and only done at this one hospital in the US, but still can communicate and work with Swedish doctors to make it available and financable by the Swedish health care system.

    I often feel like one of the biggest hinders with the Swedish healthcare system is that it doesn't allow for the amount of innovation and development that the US system does. Here we can see how the two can rely on each other's strong suits.

    This treatment is still not widely available in the US, but Swedish doctors are moving forward with it anyway.

    OK, maybe I make no sense. I have a head cold at the moment. This means I should probably reread the essay I'm finishing for school as well, I imagine it might have the same problem :)

    @boadicafemme - interesting, I don't know if umbilical cord blood would do much in this case, but it is something I wondered about when pregnant as well. I know we donated our cord blood and there was no easily available option to store it, and I felt good about the option to donate. But I will have to look into it more

  4. Good for you for donating the cord blood! It's getting easier to bank cord blood in the US. Because of your post, I went back to OB and Peds nursing classes' notes (finishing the classes this semester) to make sure I understood this. Only three sources for stem cells exist - bone marrow, cord blood, and peripheral blood (<- not so commonly used). Hugo's cord blood would be the best option because it would be the cheapest, quickest available method, and it's a sure match (no rejection would occur). Hugo's parents don't have it, or it would have been mentioned. A bone marrow transplant is expensive and hard to find a sure match if one can be found at all. Thanks for blog. It's very thought-provoking!

  5. I agree with you that both health care systems have their advantages and disadvantages. The best would be to have a mix or combination of both systems. The story about Hugo is an example of a great contribution between both systems.

  6. Not exactly medical care but when I lived in Sweden if someone had a dental appt. it was an excuse to get of everything and everyone was very respectful of the absolute necessity of being able to get the appt. This was in the early 80's so maybe there are more dentists.It really struck me as something very different than a dentist appt. at least where I am from in the US.

  7. Didn't read your entire post bc I was looking for more information on Hugo. It's kind that you've shared this with others. I think so many of us unknowns out there are rooting for this little guy and his family... Regarding health care though, I wanted to say that I've experienced care in the U.S. and Sweden, and while the U.S. isn't always perfect, it is light years and light years beyond Sweden in quality, expertise, efficiency, speed, general caring, treatments, medicines. I've been butchered in Sweden with permanent disabilities that no one will be held accountable for. Most doctors treat you worse than garbage, and they would rather you die than them spend YOUR insanely high taxes on you! Till my dying day, I will fight against this heartless disaster in the U.S. I have NEVER witnessed such cruel apathy and rampant disregard for human life as in Sweden. My heart goes out to all those suffering without help. Please don't give up and please know there are others who know your pain and who wish you love and healing. Blessings and peace.

  8. Such high medical costs will only encourage limited access to healthcare for the middle class and ultimately result in less preventative care costing taxpayers more in the long run. The problem is not the medical care in the U.S., still considered the best in the world, but its delivery system. It is when Medicare and the health insurance providers became the decision makers and took that power away from the physicians that the system began to unravel.