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New Cystic Fibrosis Treatment


macs magic

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Nov 27, 2010
Messages
2,214
I find it hard to understand how Reilly has decided out of the blue to approve an annual budget of 20,000,000 Euro to treat 120 people with cystic fibrosis.
This comes weeks after the HSE said it was too expensive to be used.
Is this an example of FG giving a sweetener to the drug companies so they don't kick up a fuss about the generic drug issue.
I have no problem with these people being given better drugs to improve their quality of life,but why not wait for the patent to expire and then give them this wonder drug.
Why should we stop with the 120 people who will receive these drugs.
The people who the state infected with hepatitis c are surely entitled to the better treatments available even though the HSE has told them they can just make do with what they have.
 

imokyrok

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Joined
Mar 4, 2008
Messages
4,507
I find it hard to understand how Reilly has decided out of the blue to approve an annual budget of 20,000,000 Euro to treat 120 people with cystic fibrosis.
This comes weeks after the HSE said it was too expensive to be used.
Is this an example of FG giving a sweetener to the drug companies so they don't kick up a fuss about the generic drug issue.
I have no problem with these people being given better drugs to improve their quality of life,but why not wait for the patent to expire and then give them this wonder drug.
Why should we stop with the 120 people who will receive these drugs.
The people who the state infected with hepatitis c are surely entitled to the better treatments available even though the HSE has told them they can just make do with what they have.

What a bizarre post. What about the people who need this drug? They might not be around to wait for the patent to expire. Our country has high CF rates and a very poor record of treatment. A person with CF living in the Republic will die ten years earlier than one living in NI. My husband has lost many in his family to that dreadful disease and I find your disregard for the intense suffering of these people and their families exceedingly callous. But then you are a ffer so what can one expect.
 

The Field Marshal

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Aug 27, 2009
Messages
44,414
What a bizarre post. What about the people who need this drug? They might not be around to wait for the patent to expire. Our country has high CF rates and a very poor record of treatment. A person with CF living in the Republic will die ten years earlier than one living in NI. My husband has lost many in his family to that dreadful disease and I find your disregard for the intense suffering of these people and their families exceedingly callous. But then you are a ffer so what can one expect.
Nobody takes issue with alleviating the suffering of CF victims . The incredibly high cost raises concerns that larger numbers of equally deserving sick people might be comprised due to disproportionate expenditure for political media driven reasons.
 

bob3367

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Joined
Jan 11, 2007
Messages
8,083
What a bizarre post. What about the people who need this drug? They might not be around to wait for the patent to expire. Our country has high CF rates and a very poor record of treatment. A person with CF living in the Republic will die ten years earlier than one living in NI. My husband has lost many in his family to that dreadful disease and I find your disregard for the intense suffering of these people and their families exceedingly callous. But then you are a ffer so what can one expect.
They havent gone away you know.....
 

bob3367

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Jan 11, 2007
Messages
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Nobody takes issue with alleviating the suffering of CF victims . The incredibly high cost raises concerns that larger numbers of equally deserving sick people might be comprised due to disproportionate expenditure for political media driven reasons.
But most medicines of that caliber are expensive, and its not just confined to CF...

We will become a very useless society if we restart the practise of knowing the cost of everything and the value of nothing.
 

macs magic

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Nov 27, 2010
Messages
2,214
What a bizarre post. What about the people who need this drug? They might not be around to wait for the patent to expire. Our country has high CF rates and a very poor record of treatment. A person with CF living in the Republic will die ten years earlier than one living in NI. My husband has lost many in his family to that dreadful disease and I find your disregard for the intense suffering of these people and their families exceedingly callous. But then you are a ffer so what can one expect.
So these people are more deserving ahead of other seriously ill people:confused:
 

damus

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Jun 28, 2011
Messages
23,671
And how much does it cost in terms of in-patient admissions, community supports, lost work days, and the impact on the quality of life of the person with CF and their family without kalydeco :roll:?
 

bob3367

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Jan 11, 2007
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8,083
So these people are more deserving ahead of other seriously ill people:confused:
They are seriously ill people, indeed untreated CF will kill them at an early age.
 

imokyrok

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Mar 4, 2008
Messages
4,507
Nobody takes issue with alleviating the suffering of CF victims . The incredibly high cost raises concerns that larger numbers of equally deserving sick people might be comprised due to disproportionate expenditure for political media driven reasons.
If there is any other group of patients we have been failing as badly as the CF group I'd be interested to hear about it. Generally I think Ireland is very good at providing the best of medications for people who are ill. I'm aware of treatments and drugs we have access to that the average person in the US can't get for example. However we have failed the CF group as is obvious from the much shorter life expectancy here in Ireland. Now maybe you and the other ffer are happy to tell all people with CF that 'sorry we've decided to stick with only letting you live til you're thirty (if you're lucky) because some people want to play political whataboutery with your lives but it good to see that todays government is trying to do something to address the historical neglect of CF patients
 

The Field Marshal

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Aug 27, 2009
Messages
44,414
But most medicines of that caliber are expensive, and its not just confined to CF...

We will become a very useless society if we restart the practise of knowing the cost of everything and the value of nothing.
I know that but no treasury is limitless and my concern is that the astronomical cost of this drug may limit and comprise expenditure on patients suffering from other illness,S. this point must be addressed as the drugs budget is not infinite. It's odd that only after an RTE programme that this truly colossoal level of expenditure was authorised to benefit a small number .
 

Howya

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Joined
Feb 29, 2012
Messages
1,690
I find it hard to understand how Reilly has decided out of the blue to approve an annual budget of 20,000,000 Euro to treat 120 people with cystic fibrosis.
This comes weeks after the HSE said it was too expensive to be used.
Is this an example of FG giving a sweetener to the drug companies so they don't kick up a fuss about the generic drug issue.
I have no problem with these people being given better drugs to improve their quality of life,but why not wait for the patent to expire and then give them this wonder drug.
Why should we stop with the 120 people who will receive these drugs.
The people who the state infected with hepatitis c are surely entitled to the better treatments available even though the HSE has told them they can just make do with what they have.
Waiting for the patents to expire would mean waiting for many years - how many CF patients could be helped in the meantime? And based on your logic, all patients should wait while patents expire and in turn why would teh drug companies invest in R&D if that was the case?
 

bactrian

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Joined
May 11, 2004
Messages
1,221
So these people are more deserving ahead of other seriously ill people:confused:
Are they any less deserving than other seriously ill people
 

sic transit

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Jan 30, 2008
Messages
25,580
So these people are more deserving ahead of other seriously ill people:confused:
Engaging in whataboutery is not an argument. What pharma companies are charging and deals that can be struck with them is far more important.
 

Howya

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Joined
Feb 29, 2012
Messages
1,690
I know that but no treasury is limitless and my concern is that the astronomical cost of this drug may limit and comprise expenditure on patients suffering from other illness,S. this point must be addressed as the drugs budget is not infinite. It's odd that only after an RTE programme that this truly colossoal level of expenditure was authorised to benefit a small number .
So the real debate is how to prioritise a limited pool of money - which patients are more deserving? And by extension which group of people is more deserving; serious ill patients; welfare recipients; child benefit recipients; politicians pensions to name just a few.
 

macs magic

Well-known member
Joined
Nov 27, 2010
Messages
2,214
I know that but no treasury is limitless and my concern is that the astronomical cost of this drug may limit and comprise expenditure on patients suffering from other illness,S. this point must be addressed as the drugs budget is not infinite. It's odd that only after an RTE programme that this truly colossoal level of expenditure was authorised to benefit a small number .

40% of the HSE budget for new drugs is being spent here.
The cost analysis done when the original HSE decision was made obviously shows that the cost outways the benefit to the taxpayer and that's why it wasn't given the go ahead.
Again I have to ask why we should stop with the cystic fibrosis patients.
One FG TD's daughter may benefit from this also.
 

damus

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Jun 28, 2011
Messages
23,671
I know that but no treasury is limitless and my concern is that the astronomical cost of this drug may limit and comprise expenditure on patients suffering from other illness,S. this point must be addressed as the drugs budget is not infinite. It's odd that only after an RTE programme that this truly colossoal level of expenditure was authorised to benefit a small number .
Seemingly they managed to negotiate a much better price with the pharmaco.
 

ger12

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Joined
Feb 25, 2011
Messages
48,255
And how much does it cost in terms of in-patient admissions, community supports, lost work days, and the impact on the quality of life of the person with CF and their family without kalydeco :roll:?
The Irish Times today reporting that two clinical studies of the drug, which found it resulted in significant and sustained improvement in lung function in CF patients, lasted 48 weeks and involved 213 patients. Perhaps this is why National Centre for Pharmacoeconomics didn't support funding this drug?

It's a tough one. Someone will lose out as Kalydeco is about one-third of the entire budget for new drugs this year. We are using drugs in many areas like cancer treatments, that other countries simply can't afford to use. Raising eyebrows in other countries.


Price of CF drug may be health cuts elsewhere - The Irish Times - Sat, Feb 02, 2013
 

imokyrok

Well-known member
Joined
Mar 4, 2008
Messages
4,507
Are they any less deserving than other seriously ill people
Isn't it just a bizarre thread?! Like something you'd read on some teaparty thread in Mississippi. When did life become something we measure in euros and cents in Ireland?
 

bob3367

Well-known member
Joined
Jan 11, 2007
Messages
8,083
I know that but no treasury is limitless and my concern is that the astronomical cost of this drug may limit and comprise expenditure on patients suffering from other illness,S. this point must be addressed as the drugs budget is not infinite. It's odd that only after an RTE programme that this truly colossoal level of expenditure was authorised to benefit a small number .
How many will have private insurance?

When I was sick some of my monthly costs for treatment were over €30k, my insurance covered it, cost the state nothing.
 

sic transit

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Joined
Jan 30, 2008
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