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Old Nov 28th 2017, 1:54 pm   #16
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Default Re: Rare diseases and cost of medications

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Of course they do, if they didn't we would not have many drugs and without the ability to recoup the costs, there would be no incentive or reason to develop these drugs.
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?
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Old Nov 28th 2017, 6:20 pm   #17
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Default 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.
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Old Nov 29th 2017, 4:37 am   #18
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Default Re: Rare diseases and cost of medications

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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.
In Canada, the assessment is done by Health Canada, but they seem to largely depend on the FAA in the US.

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.
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Old Nov 29th 2017, 5:16 pm   #19
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Default Re: Rare diseases and cost of medications

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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.
Totally agree. I certainly don't want to spend years lying in a hospital bed doing absolutely nothing because society says that I have to stay "alive".
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Old Nov 29th 2017, 7:08 pm   #20
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Default Re: Rare diseases and cost of medications

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Personally I want out of this world at the earliest opportunity,
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.
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Old Nov 29th 2017, 11:10 pm   #21
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Default Re: Rare diseases and cost of medications

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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.
If anyone fancies a bit of reading, Being Mortal by Atul Gawande, a medical doctor talks about death, dying, living out the years the way you wish . It's an amazing read for anyone.
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Old Nov 30th 2017, 4:00 pm   #22
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Default Re: Rare diseases and cost of medications

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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.

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Originally Posted by BristolUK View Post
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.
There is a risk that even if you make it clear to everyone that you don't want resuscitation, if the right person isn't there at the right time.......

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If anyone fancies a bit of reading, Being Mortal by Atul Gawande, a medical doctor talks about death, dying, living out the years the way you wish . It's an amazing read for anyone.
I'll look out for it
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Old Nov 30th 2017, 6:20 pm   #23
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Default Re: Rare diseases and cost of medications

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There is a risk that even if you make it clear to everyone that you don't want resuscitation, if the right person isn't there at the right time.......
That's where the idea of "taking something" that needs a periodic antidote has an advantage. (unless, of course, someone knows and administers it but that's unlikely)

Just a problem if you're stuck on a bus or something and you can't get to the antidote.
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Old Nov 30th 2017, 6:39 pm   #24
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Default Re: Rare diseases and cost of medications

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Should lifestyle choices impact public health funding? There can scarcely be a soul alive in the West who doesn't know that smoking is terrible for you, or that smoking cessation support is available... should smokers take second place in the health queue?
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 ?
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Old Nov 30th 2017, 6:51 pm   #25
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Default Re: Rare diseases and cost of medications

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Totally agree. I certainly don't want to spend years lying in a hospital bed doing absolutely nothing because society says that I have to stay "alive".
1. We're getting closer to viable rejuvenation technologies every day. We already have the healthiest, longest-live mice in history in research labs, and some of those treatments are soon to be tested on humans.

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.
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Old Dec 1st 2017, 1:58 am   #26
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Default 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.
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Old Dec 1st 2017, 2:07 am   #27
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Default 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.


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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.
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Old Dec 1st 2017, 6:59 am   #28
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Default Re: Rare diseases and cost of medications

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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.
And yet there are others who derive great satisfaction in racking up the years, and have the attitude that there's no new thing under the sun!
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Old Dec 1st 2017, 6:22 pm   #29
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Default Re: Rare diseases and cost of medications

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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.
Whereas one of my friends died at 90 and was pee-d off that he'd seen so much change in his life but wouldn't get to see what was still coming.

Besides which, the part about all her friends having died wouldn't apply in a world where everyone can live a very long time.
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Old Dec 2nd 2017, 4:27 am   #30
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Default Re: Rare diseases and cost of medications

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Whereas one of my friends died at 90 and was pee-d off that he'd seen so much change in his life but wouldn't get to see what was still coming.

Besides which, the part about all her friends having died wouldn't apply in a world where everyone can live a very long time.
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.
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