Rare diseases and cost of medications
#16
Re: Rare diseases and cost of medications
The recoup of costs is presumably linked to the rarity of the condition, so with fewer individuals who need each drug the cost per patient is higher. So what about a modification to the patent laws so that the length of the patent for a drug is linked to the number of indiviuals who need it, so that costs can be recovered over a longer period of time?
#17
Re: Rare diseases and cost of medications
It's also worth considering that these "wonder drugs" often touted by the media in relation to some tragic story are not proven to do the job that people think they should, a fact the media usually conveniently forget.
The UK has a NICE, National Institute for Clinical Excellence, they review the drug, risks, benefits and costs and decide if the benefit to the patient/s is worth the cost.
The UK has a NICE, National Institute for Clinical Excellence, they review the drug, risks, benefits and costs and decide if the benefit to the patient/s is worth the cost.
#18
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Re: Rare diseases and cost of medications
It's also worth considering that these "wonder drugs" often touted by the media in relation to some tragic story are not proven to do the job that people think they should, a fact the media usually conveniently forget.
The UK has a NICE, National Institute for Clinical Excellence, they review the drug, risks, benefits and costs and decide if the benefit to the patient/s is worth the cost.
The UK has a NICE, National Institute for Clinical Excellence, they review the drug, risks, benefits and costs and decide if the benefit to the patient/s is worth the cost.
BC has the Drug Assessment Working Group (DAWG) of the Therapeutics Initiative, which is at UBC, and whose mandate is to clarify the state of scientific evidence regarding effectiveness and safety of drug therapy and to relate that evidence to the care of individual patients. They then make recommendations to the Health Ministry.
They had assessed the $250,000 drug and apparently had deemed that there was not sufficient evidence for its use for this particular rare disease.
I like this statement from their website ..................
"None of the DAWG members receives any funding directly or indirectly from the drug industry, nor do they or their families have any stock in any of these companies, except through unassigned mutual funds found in University pensions."
The Health Ministry has now of course re-assessed their decision and is working on case-by-case decision making for drugs not included ..... especially for those being used for treatments that they were not designed for or not accepted to be used for.
I don't know whether other provinces have a similar Group.
#19
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Re: Rare diseases and cost of medications
And to take it one stage further - people who are just waiting out their time with incurable conditions, often in great pain, and no longer want to live. If they were not forced to struggle on, but could take an easy way out of the world - how much money would that save for treating patients who do want to live?
I now its a whole different issue, but the premise is the same. Use the money for those who want to live on rather than those who don't. Not that different from use the money for those who have an immaculate vice-free lifestyle, rather than for those of us who don't.
Personally I want out of this world at the earliest opportunity, I don't want my life extended so someone else has to care for me, and if that leaves more money for treating others, so much the better.
I now its a whole different issue, but the premise is the same. Use the money for those who want to live on rather than those who don't. Not that different from use the money for those who have an immaculate vice-free lifestyle, rather than for those of us who don't.
Personally I want out of this world at the earliest opportunity, I don't want my life extended so someone else has to care for me, and if that leaves more money for treating others, so much the better.
#20
Re: Rare diseases and cost of medications
That can be arranged. Half up front and half when the deed is done are my usual terms but I'm not sure that works in the proposed scenario.
Seriously, I think most people would take that choice over living on in pain etc.
But it's all a bit complicated when the time comes. Maybe someone could invent something we take which needs a periodic antidote to avoid scrabbling around for all the accrued meds we can find or facing legal battles.
Seriously, I think most people would take that choice over living on in pain etc.
But it's all a bit complicated when the time comes. Maybe someone could invent something we take which needs a periodic antidote to avoid scrabbling around for all the accrued meds we can find or facing legal battles.
#21
Re: Rare diseases and cost of medications
That can be arranged. Half up front and half when the deed is done are my usual terms but I'm not sure that works in the proposed scenario.
Seriously, I think most people would take that choice over living on in pain etc.
But it's all a bit complicated when the time comes. Maybe someone could invent something we take which needs a periodic antidote to avoid scrabbling around for all the accrued meds we can find or facing legal battles.
Seriously, I think most people would take that choice over living on in pain etc.
But it's all a bit complicated when the time comes. Maybe someone could invent something we take which needs a periodic antidote to avoid scrabbling around for all the accrued meds we can find or facing legal battles.
#22
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Re: Rare diseases and cost of medications
Seriously, I think most people would take that choice over living on in pain etc.
But it's all a bit complicated when the time comes. Maybe someone could invent something we take which needs a periodic antidote to avoid scrabbling around for all the accrued meds we can find or facing legal battles.
But it's all a bit complicated when the time comes. Maybe someone could invent something we take which needs a periodic antidote to avoid scrabbling around for all the accrued meds we can find or facing legal battles.
I'll look out for it
#23
Re: Rare diseases and cost of medications
Just a problem if you're stuck on a bus or something and you can't get to the antidote.
#24
Re: Rare diseases and cost of medications
What about those on high Carb diets or those who don't exercise, or those that let their dog pee on your lawn Where does it end ? Carousel from Logan's Run ?
#25
Re: Rare diseases and cost of medications
2. In twenty years, you won't be lying in the hospital bed doing nothing, because they'll plug you into a VR machine to keep you occupied.
#26
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Re: Rare diseases and cost of medications
I don't get why people want to live forever. There was a woman in NS who was over the 100 mark and she was doing OK healthwise but told the reporter she didn't want to go on much longer as the world had moved on much more than she was comfortable with, and all of her friends had passed.
#27
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Re: Rare diseases and cost of medications
My great grandmother died at 93 or so, but in her late 80s was growing tired of life and just wanted to go.
I don't get why people want to live forever. There was a woman in NS who was over the 100 mark and she was doing OK healthwise but told the reporter she didn't want to go on much longer as the world had moved on much more than she was comfortable with, and all of her friends had passed.
#28
Re: Rare diseases and cost of medications
I don't get why people want to live forever. There was a woman in NS who was over the 100 mark and she was doing OK healthwise but told the reporter she didn't want to go on much longer as the world had moved on much more than she was comfortable with, and all of her friends had passed.
#29
Re: Rare diseases and cost of medications
I don't get why people want to live forever. There was a woman in NS who was over the 100 mark and she was doing OK healthwise but told the reporter she didn't want to go on much longer as the world had moved on much more than she was comfortable with, and all of her friends had passed.
Besides which, the part about all her friends having died wouldn't apply in a world where everyone can live a very long time.
#30
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Re: Rare diseases and cost of medications
But can everyone afford to live for a very long time? I know an 80 year old who says they only planned to have a certain number of years retired and their money is running out.