I hear you. The problem is there really is no fair way across the board with medical treatment. If you want new treatments and new innovations then you get those within a driven market place for product with the trade off of higher health care cost. If you want to make sure everyone is covered the trade off is much slower new treatments and innovation as well as treatment rationing. Sure I would love if everyone had medical care and the best treatment. Who wouldn’t? The problem is it takes people and a huge amount of money to come up with new drugs and treatments often with no sign in sight if that money invested will cone back in sales. Drugs fail, treatments don’t work out the cost gets back adsorbed. There is two sides to everything the ying and yang if you will. Nothing is free of consequence I guess we have to choose which consequence does the least harm.
What frightens me is if some one like my roommate with lymphoma is ‘too expensive’, will he be sentenced to die because they won’t treat?
I remember on the news back in the Early 80’s a man in the UK was turned away for Kidney treatment (Dialysis/transplant) because he was indigent. I worry that people who aren’t “Perfect” will simply be allowed to die. NAZI right? I dunno. it does scare me.
As far as the new technology goes, what about Europe where most of the new stuff comes out from? They mostly have a ‘socialized medicine’ but can still come off with new things. Not many are turned away like that guy was either. I’ll admit, I’m no genius, but as a layperson, I’m scared I’ll have my pump taken away, forget about CGMS or any of the things I have, even out of pocket payment now.
I’m from the UK and I’ve had nothing but great service from the NHS over my 30 years of diabetes. All of my diabetes medication (syringes, lancets, insulin, metformin) is free as well as all my non-diabetes medication (contraceptive pill, high blood pressure pills). I know that I pay National Insurance so, technically, it’s not “free” but you only start paying this when you start work meaning that if you are out of work or too young to work you can still get treated in any doctor’s surgery or hospital for nothing. The only thing you may have to prove is that you are resident in the UK, although those in the EU get reduced, or free treatment too (and the other way around, so someone from the UK just needs an European Health Insurance Card to get treated for free in EU countries).
Don’t get me wrong, I’m not saying that the NHS is perfect - far from it. But can you name one that is? Over here I know that I will never have to worry about rationing insulin or BG testing strips in my life and can’t imagine a life where I’d be checking my bank balance before looking after myself. I know which one I’d prefer.
Hi Sam I know many people who get great care from the NHS but I also know some people who don’t. I have some old business partners there. They have had to pay out of pocket to get some things now when needed but it is not for diabetic care. Some newer treatments for ALS to be exact. Some options for Kidney cancer since it is rare and considered deadly with both kidneys are involved. The NHS is great for chronic illnesses like diabetes. The reality is if everyone is going to get treatment some people have to not get treatment for the greater treatment of many. I am not calling it bad. Just like in private treatment the cost can become massive.
The biggest issue at least for those who have coverage is dis-closer from the insurance companies here in the US.
It needs to be straight and open. I am blessed because my DH used to put together health plans for companies and we know exactly what to ask so I have zero restrictions. Many people here do not know to ask what the DME coverage is. That would include pumps, CGM’s and sometimes strips. Most of the rationing takes place with government subsidized plans. When I get new insurance I have a list of questions that I make sure they answer in writing. The good thing about here is with a disease like ALS you could get the latest unproven but suspected might help treatment covered. That is not really an option for diseases like that under a National health plan. For diabetics it might be great simply cause supplying the things cuts the long term cost. But if the illness is expensive to treat with little or no hope of beating it then it is a different story and that is the real hard thing about all this. For anyone to say you must accept some things as part of aging that is indeed not part of aging is a very dangerous thing
I think the NHS in the EU has done well but considering what our government has done with Social Security and pork bills I don’t see them handling anything for anyone well.
I hope you feel I am being respectful within this conversation. I can see and understand both sides. Or course I want everyone treated and helped but I am not sure how that can be down without not treating some
Hi Sam, I was diagnosed IDDM in 1984 in the UK, and lived there till 1992 when I came back here. It’s true I have had BASIC diabetic treatment, but forget pumps -unless I was to have a family- nevermind CGMS or anything ‘new’. I don’t know what this will mean for my friends’ mom who gets things for Osteoporosis, some of them would be termed ‘experimental’ and quite possibly, her age would preclude her from anything new after this new thing takes effect I am thinking…
I’ve been told by Diabetes UK that CGMS are now available on the NHS… Surely these weren’t available back in 1992 when you left here though? It might take a few years for the NHS to catch up when it comes to the latest innovations in diabetes technology but when it does, it makes them available for free along with all the supplies. I really don’t know what you mean by “BASIC diabetic treatment” - I’m still on twice daily injections of pork insulin but this is my choice not my doctor’s. In fact, my diabetes doctors have been trying to get me to switch to human insulin using pen injectors for years now but I see no reason to change as I have great control (A1c of 4.9 last time) and no complications after 30 years. In my view “what works works” and what works for one person might not be right for another. The good thing about the NHS is that it doesn’t try to “sell” me the latest drugs etc because it’s not a business and isn’t out to make money so I get to choose my treatment.
As I said before though, it’s not without its failings and there’s a lot of stuff that could be improved (like waiting times for operations, easy access to pumps etc) but I can’t see how you’d prefer a system that excludes those who can’t pay for insurance and rewards those who can with the latest technologies and treatments - how is that fair?
I hope you’re right. I saw another post from a woman on TuDiabetes who has been fighting for a pump CGMS, and despite her constant attention to this, she still hasn’t received any joy. BUT!! a woman a few roads down from her in another postal code was granted a whole set up without much preamble.
The OP said it was like a lottery of sorts. she was disappointed and rightfully resentful at the way the NHS was handling her case.
And it’s true, only a select few had insulin pumps. They were mainly under private insurance or clinical studies. I saw a person on a pump in the hospital as I was getting diagnosed, and understood the sense of the pump, even back in 1984 and wanted to have one, but I was laughed out of every dr’s office I tried to get a pump from. No one would hear me at all.
It was 3 years after I got back to the States that I bought one second hand and started it on my own with the help of a couple of rogue doctors and CDE. It’s not that I want the system you cite in the last part of your letter, I AM on medicaid and technically ‘poor’ here. But I also don’t want to be shuffled out the door when I even speak of an alternative avenue in my own treatment.
I have an Ophthalmologist’s appointment today. I know he’s going to try to make me get a cataract op despite my having only one good eye from premature birth and a 24% risk of complete retinal detachment, because he gets $35.00 to see a patient like me. He makes his $$$ on the operations an his office looks like a cattle run of patched eyes and old people. I don’t want bad pay from Medicaid to make doctors risk what I have either.
I pay for my own CGMS sensors and did pay for pump supplies until I raised a big fuss at CalOPTIMA. Please, do not judge me, as my economic status is not as Luxe as you seem to think it is. I just don’t want to see those new treatments and possible help banished because the new plan says it’s ‘experimental’.
Hi Sam it is not fair but neither is having ALS and not being able to get the new treatments that for the first time in history has shown some effect on a disease that is deadly with no help other then making you a bit more comfortable until you die. Flight to the US for him, wife and kids 10,000 and change. Out of pocket 60,000 in 2 years of treatment. From a drug that has been 40 years in the making with only pay out by the “awful” pharm company to make it, It bought him 4 years and that there is no price for. This does not make health care in the NHS bad but neither is all good. The price seems the same to me. Some don’t receive treatment on either a NHS type or the current type we have in place here in the US.
Now if they allow for private pay here in the US and a NHS type system for those who can not get insurance then that might work but I don’t want those in the NHS system not to be able to get what they need. Nor do I want to pay more then the high amount I pay now for the coverage I get. I have diabetes but I can not use a myopic view of only that disease to view health plans. I have to look at all. If oyu look up treatments for ALS, Bi-lateral Kidney cancer you will see a huge difference in treatments and outcomes. I do not want a system that tells those people because of what they have that they have no right or ability to fight with the latest ammunition. They are death sentences and the list can go on for about 30 more. I hope we can find a way to preserve the cutting edge and include everyone. I just do not trust our government to do so. The waste amount already shows an inability for open and honest business practices so how can I trust them with more. sigh I think Sam we are both right we want the best for all. I hope that is a reality soon