And I forgot to add, I especially liked the real talk on dialysis, which I know as a patient I learned a lot about the reality of, from talking to those who are doing that, than ever was apparent to the lay person; Generally it seems to always be presented as no big deal to live with it, but the way I like to think of it is 'life support', not the type where you are confined to a bed and die the minute the plug is pulled, but still, you need it, very regularly, or you will die and, as you say, the life you lead on it is not remotely like that of a health person for most.
Thanks for your very kind words about the piece, Bob.
I wonder how much of this comes from the fact that routine long-term dialysis is older than routine transplantation. The technology for long-term dialysis was figured out in the late 1950s and rolled out in the early 1960s; whereas cyclosporine, which enabled successful transplants between non-relatives, wasn't discovered until the early 1970s.
If these discoveries had happened the other way around, would our healthcare system would still think it's acceptable to treat dialysis as a long-term solution, and would our culture would have imbibed the idea that it's basically fine? I mean, dialysis certainly is 'fine' compared to what it was like to have chronic kidney disease before the 1950s, and that was the alternative to dialysis when it was discovered, so the idea entered into collective medical consciousness. But - as you say - it's not 'fine' compared to the life of a healthy person or a transplant recipient. Interesting how these things turn out.
One other thing about dialysis that a lot of people don't know is how insanely expensive it is for the state. I think the UK spends >£500m on dialysis every single year, Ireland about half as much. The machines are incredibly expensive to buy and incredibly, incredibly expensive to run, and there is a significant cost in terms of nursing and doctor man-hours. Measured per person, I think it might be the most expensive 'routine' treatment? (Depends on how you define 'routine'.) I don't bring this up to be crude, saving lives should obviously be the priority for the health system and money squarely secondary. But as a matter of fact, a lot of healthcare administrators will only listen to you if you're speaking the language of budget savings.
I think reframing 'dialysis is normal' to 'dialysis should be exceptional' would be helpful here too: healthcare administrators and governments should be thinking of dialysis costs less as a regrettable but necessary expenditure, and more as a measure of their failure when it comes to transplant policy. If they worked hard on living kidney donation, they'd not just save lives - they'd save money. While money perhaps shouldn't be their priority, in many cases it is their priority, so it's very helpful in this case that budget savings and patient needs line up (that very rarely happens).
Very good points again there. I have had another experience with medicine as a business in the past, with respect to the use of low doses of Naltrexone for auto-immune diseases, another one where money is most definitely a factor. Our wee group petitioned both Holyrood and Westminster over access, the issue being it's an out of patent medication, so very hard to get anyone to do research on it for alternate uses, as is the case for many 'orphaned' drugs. The governments can't get their head around this as they just fall back to their existing meagre schemes to fund some research, but that doesn't solve the issue when there is no take up and more lucrative avenues for researchers.
Excellent piece Peter, really informative, and I say that as someone in need of a transplant and soon to go on the list here in France. Will be sharing that with interested folks.
Fantastic article Peter! I had always assumed that having one kidney would increase risk of death -- that's quite the counterintuitive fact. Thanks for helping raise awareness of this 👏
And I forgot to add, I especially liked the real talk on dialysis, which I know as a patient I learned a lot about the reality of, from talking to those who are doing that, than ever was apparent to the lay person; Generally it seems to always be presented as no big deal to live with it, but the way I like to think of it is 'life support', not the type where you are confined to a bed and die the minute the plug is pulled, but still, you need it, very regularly, or you will die and, as you say, the life you lead on it is not remotely like that of a health person for most.
Thanks for your very kind words about the piece, Bob.
I wonder how much of this comes from the fact that routine long-term dialysis is older than routine transplantation. The technology for long-term dialysis was figured out in the late 1950s and rolled out in the early 1960s; whereas cyclosporine, which enabled successful transplants between non-relatives, wasn't discovered until the early 1970s.
If these discoveries had happened the other way around, would our healthcare system would still think it's acceptable to treat dialysis as a long-term solution, and would our culture would have imbibed the idea that it's basically fine? I mean, dialysis certainly is 'fine' compared to what it was like to have chronic kidney disease before the 1950s, and that was the alternative to dialysis when it was discovered, so the idea entered into collective medical consciousness. But - as you say - it's not 'fine' compared to the life of a healthy person or a transplant recipient. Interesting how these things turn out.
One other thing about dialysis that a lot of people don't know is how insanely expensive it is for the state. I think the UK spends >£500m on dialysis every single year, Ireland about half as much. The machines are incredibly expensive to buy and incredibly, incredibly expensive to run, and there is a significant cost in terms of nursing and doctor man-hours. Measured per person, I think it might be the most expensive 'routine' treatment? (Depends on how you define 'routine'.) I don't bring this up to be crude, saving lives should obviously be the priority for the health system and money squarely secondary. But as a matter of fact, a lot of healthcare administrators will only listen to you if you're speaking the language of budget savings.
I think reframing 'dialysis is normal' to 'dialysis should be exceptional' would be helpful here too: healthcare administrators and governments should be thinking of dialysis costs less as a regrettable but necessary expenditure, and more as a measure of their failure when it comes to transplant policy. If they worked hard on living kidney donation, they'd not just save lives - they'd save money. While money perhaps shouldn't be their priority, in many cases it is their priority, so it's very helpful in this case that budget savings and patient needs line up (that very rarely happens).
Very good points again there. I have had another experience with medicine as a business in the past, with respect to the use of low doses of Naltrexone for auto-immune diseases, another one where money is most definitely a factor. Our wee group petitioned both Holyrood and Westminster over access, the issue being it's an out of patent medication, so very hard to get anyone to do research on it for alternate uses, as is the case for many 'orphaned' drugs. The governments can't get their head around this as they just fall back to their existing meagre schemes to fund some research, but that doesn't solve the issue when there is no take up and more lucrative avenues for researchers.
http://www.ldnnow.com/
http://www.ldnnow.com/51601.html
https://www.youtube.com/watch?v=oXX_XcbDYHQ
Excellent piece Peter, really informative, and I say that as someone in need of a transplant and soon to go on the list here in France. Will be sharing that with interested folks.
Fantastic article Peter! I had always assumed that having one kidney would increase risk of death -- that's quite the counterintuitive fact. Thanks for helping raise awareness of this 👏