Tuesday, May 21, 2013

CF Awareness Post 3 - Differences in Treatments

For this one I asked a few of my non-American CF friends to help me.  Since the question deals with treatments in other countries, I could not answer.  Thank you to Julie , Alice  and Tracy for helping!!!
A little background on my helpers.

Julie is from Canada.  She still has her original lungs.  
Alice is 5+ years post transplant living in South Africa.  
Tracy is 5+ years post transplant and living in Australia.

Question: Hey, Amy! I have a CF question... how does CF treatment vary between countries? Or, maybe another perspective would be, how does America differ from other countries in its CF treatment? I know each individual case is unique, but it seems like if I've read a blog based in Canada vs the UK vs America that each demonstrate a different approach to their treatments. Some examples might be: when a person is listed for a transplant, or how aggressively something is treated, or what conclusions are drawn from the same data… is the nation’s healthcare the #1 factor? Is it more dependent on the medical team you’re with? Or is there a general impression that depending on where you live, you can expect a certain response? I’ve read a few blogs where the individual may have gone on ECMO, for example, and it seemed like that was only an option for a few days, while others may remain on ECMO for many weeks and that is okay… though I know there’s no one-size-fits-all approach. So this rambling post is to ask how much does WHERE you are have to do with HOW you’re treated?


Tracy: Australia does not have the vest.  

Alice: CF treatment in SA differs quite a bit depending on weather you live in a big city or not and if you've got health insurance or not. Where I grew up (smaller city) treatment depended on what I wanted, if I felt I needed IV's they gave me IV's. If I said I wanted to try oral antibiotics first then they let me. Here in Johannesburg, I live now post transplant, they treat the CF patients WAY more aggressively. Not sure about the ECMO, but I doubt they'll transplant someone on ECMO (but that might also be because they do only about 5-7 lung transplants a year so the odds of someone surviving long enough on ECMO is slim).  

Julie:  Canada has universal healthcare and I have private through my disability plan. CF patients in Ontario have a provincial drug plan that covers almost everything, and what it doesn't cover like Pulmozyme (waiting for the patent to run out on it) we have section 8's that cover the cost. I don't pay anything for any of my drugs, so everything, including Boost, insulin, enzymes everything is covered.

CF exacerbations are treated depending on how I feel.  If I want to try orals we do and if I want to skip than we skip and do IVs, or if I feel I can get over it on my own we do nothing. It depends on how much of a drop I get in FEV1 if I'm just down around 35% from 39% we'll try orals, if I'm down anything below 35% we usually do IVs. And those if we can help it are usually done outpatient because they like to keep us out the best they can. We have isolation rooms but we all know there are so many bugs that can be picked up in the hospital. So as long as we're not terribly sick we can opt for outpatient PICC line and home care. But I have a friend who refuses PICC lines, so she has to go in patient for the full course of IVs.  I find each CF person is treated on a person to person basis, some people are treated more aggressively while others may not be, but they still get good healthcare. If that makes sense. I mean if you want to be treated aggressively they will, if you don't then they trust you know your body. 

We have a CF gentleman in the ICU right now waiting for his second set of lungs and he is on ECMO and has been for a long time, we use it as a bridge to transplant... where you know the situation with Rhi, at her transplant hospital being on ECMO makes you untransplantable while on it. That is more probably varying from center to center, just like some transplant hospitals want you 3 years post cancer and some want 5. 

We have all the same drugs you do in the US as far as nebs. We have access to the Vest but it isn't covered under our healthcare plan nor is it usually covered through most private insurance because it's coming from another country... from what I've heard anyways.  And there are people in Canada with the VEST, I know quite a few but they raised the money or was donated it to them. As for myself, since there's not really any proof that the VEST is that superior to manual CPT I stick with my flutter and hubby beats me when I ask him to. Other people still have percussors, mine crapped out and died years ago and I gave up on them because they're always dying.

Exercise is a big part, we see a physio therapist with every clinic visit and clinic visits around here are mandatory every 3 months for everyone no matter their lung function.  So is nutrition, we see a dietitian every 3 months as well.

My clinic has strict infection control. We have isolation rooms for in patient and if you have certain bugs you are not allowed to leave your room. At clinic they don't let us stay in the waiting room very long, we're shuttled of to a private room to try and keep us all separate. Cystic Fibrosis Canada is trying to adapt the American CF control policy and many people (mainly adults) aren't happy with it.

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