Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie
Hi there,
There is an issue with role permissions that is being worked on at the moment.
If you are having trouble with access or permissions on regional forums please post here to get access: https://www.boards.ie/discussion/2058365403/you-do-not-have-permission-for-that#latest

Life changing cystic fibrosis drug. What role should government play?

  • 12-12-2016 1:30pm
    #1
    Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭


    Lumacaftor/ivacaftor (brand name Orkambi) is relatively new combination drug for the treatment of cystic fibrosis. Cystic fibrosis is a disease caused by a range of mutations and deletions of the gene for a chloride transporter (CFTR) which transports chloride across membranes. If you are unable to move ions like chloride across membranes you'll also have problems regulating fluid. We have one of the highest incidences of Cf in the world with 1 in 20 people being carriers.

    Ivacaftor works as a potentiator of chloride channels that are already in place and lumacaftor works by refolding protein chloride channels resulting in a higher amount of expressed chloride channels. This drug will significantly enhance the lives of CF sufferers, but we can't afford it as It costs around 160 K per patient.

    I'm not having a go at the pharmaceutical company necessarily as it costs billions to get a drug to market. From the biochemical analysis that enables us to discover a drug target, to the chemistry that goes into designing a drug to fit a target and the human trials, no one can say this isn't a costly process.

    Treating illnesses currently doesn't work from a strictly capitalistic view point as some rare diseases with orphan status are partly government funded as the companies wouldn't make their money back. Should governments or charities do more or should the pharm companies do more?


«1

Comments

  • Registered Users Posts: 952 ✭✭✭s4uv3


    I'd need to see the exact figures from the pharma company before I could make a judgement.

    Fair enough it costs billions in R&D for these drugs, but what would be the profit margins? Yearly figures? All that has to be taken into account.

    We (our government), spend a right hape of money on some proper eejiting and messing every year, so we should be able to afford to pay for these lifesaving drugs, but not if the company involved is making a killing on profits.


  • Registered Users, Registered Users 2 Posts: 43,028 ✭✭✭✭SEPT 23 1989


    160 K per patient per year?


  • Registered Users, Registered Users 2 Posts: 68,317 ✭✭✭✭seamus


    Healthcare always comes down to a question of finances. There is no way to say "money is no object" without also opening the doors for all sorts of spending.

    Ultimately it's a question of effectiveness. If a drug is highly effective for a large proportion of those diagnosed, then we should be prepared to pay out the money for it. If it's only been proven to be effective in 1% of cases, or only offers a very limited improvement for the majority of cases, then it may not be worth funding.

    There should be no question really of "orphan status" illnesses. If someone is the only sufferer in Ireland of a rare illness, and a drug exists with 99% effectiveness that costs €500k a pop, then we should buy it.
    If 300 people have an illness and a drug with a 0.5% effectiveness costs €10k a pop, then we'd be stupid to pay for it.


  • Registered Users, Registered Users 2 Posts: 40,573 ✭✭✭✭ohnonotgmail


    s4uv3 wrote: »
    I'd need to see the exact figures from the pharma company before I could make a judgement.

    Fair enough it costs billions in R&D for these drugs, but what would be the profit margins? Yearly figures? All that has to be taken into account.

    We (our government), spend a right hape of money on some proper eejiting and messing every year, so we should be able to afford to pay for these lifesaving drugs, but not if the company involved is making a killing on profits.


    You also have to take into account the money spent on R&D for drugs that dont work. The pharma companies have to recoup those costs from the profits of successful drugs.


  • Registered Users Posts: 952 ✭✭✭s4uv3


    160 K per patient per year?

    Yup


  • Advertisement
  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    160 K per patient per year?

    Yes, pretty but might be about right for a combination drug.


  • Registered Users, Registered Users 2 Posts: 40,291 ✭✭✭✭Gatling


    How much does the government spend on methadone ,
    But won't pay for a life changing drug for CF


  • Registered Users, Registered Users 2 Posts: 28,789 ✭✭✭✭ScumLord


    You also have to take into account the money spent on R&D for drugs that dont work. The pharma companies have to recoup those costs from the profits of successful drugs.
    The pharma companies also have to take into account all the other drugs we buy off them.

    Really the government should be going in with a good overview of what they think the drugs are costing and working out some inclusive price. The pharma company is likely making good profit on other drugs, maybe offer some exclusivity to the market if they give big reductions on rare meds like these.

    Ireland is a consumer group and we should be acting like one.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    Gatling wrote: »
    How much does the government spend on methadone ,
    But won't pay for a life changing drug for CF

    Considering methadone was synthesized during WW2 and heavily pre and proscribed it would be significantly less.


  • Registered Users, Registered Users 2 Posts: 36,170 ✭✭✭✭ED E


    People don't like to hear "price on a life" but healthcare is a beancounting exercise. Simple as.

    The HSE have a finite budget. This isn't disputed. So spending more on x means less for y and z.

    What does an ambulance driver under the NAS cost per year? Lets say its 40k inc pension etc. So you want to take 4 drivers (two ambulances) off the road for EACH patient? That doesn't help the national death stats.

    VRTX won't give us 30k pppa. They can't, because then france and Germany and the UK will want the same. We may have the highest occurrence but the absolute number is still way lower, we're small fry.

    Its tough for current patients but this is something that'll be offered way down the line to future patients. Politics be gone, there's very clear maths here.


  • Advertisement
  • Closed Accounts Posts: 1,488 ✭✭✭mahoganygas


    You also have to take into account the money spent on R&D for drugs that dont work. The pharma companies have to recoup those costs from the profits of successful drugs.

    We also must ensure we don't scare off investors. The best pharma companies in the world average a return of about 11% per year in the long term.

    If we cap profits on pharma companies at say 7% then investors will move their money to better paying assets, and overnight the pharma industry will shrink. That means upcoming cancer drugs, trials, R&D gets shelved and sick people are worse off.

    Interfering in the pharma market should not be a knee jerk reaction.

    *I say this as somebody who demonstrated at the Dail for Orkambi.


  • Posts: 17,378 ✭✭✭✭ [Deleted User]


    It's 30k / year for a drug recently released that would help my girlfriend a lot. The only drug released for this disease in 60 years. It's just a fact of life that's not easy to swallow but it's that way for the same reason that governments sell rights to search for oil etc. The public would never accept the loss but always want the results.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    ED E wrote: »
    People don't like to hear "price on a life" but healthcare is a beancounting exercise. Simple as.

    The HSE have a finite budget. This isn't disputed. So spending more on x means less for y and z.

    What does an ambulance driver under the NAS cost per year? Lets say its 40k inc pension etc. So you want to take 4 drivers (two ambulances) off the road for EACH patient? That doesn't help the national death stats.

    VRTX won't give us 30k pppa. They can't, because then france and Germany and the UK will want the same. We may have the highest occurrence but the absolute number is still way lower, we're small fry.

    Its tough for current patients but this is something that'll be offered way down the line to future patients. Politics be gone, there's very clear maths here.

    I think people who look at it as a bean counting exercise are often clueless to how health care is funded. The disease that's funded the most isn't always the one that gives the most return. Look at the money pumped into depression and mental illness research and tell me we're getting value for money.


  • Registered Users, Registered Users 2 Posts: 12,556 ✭✭✭✭Varik


    ScumLord wrote: »
    The pharma companies also have to take into account all the other drugs we buy off them.

    Really the government should be going in with a good overview of what they think the drugs are costing and working out some inclusive price. The pharma company is likely making good profit on other drugs, maybe offer some exclusivity to the market if they give big reductions on rare meds like these.

    Ireland is a consumer group and we should be acting like one.

    Going off memory from College, but only a 1/3 pay for their own research and of that 1/3 only a tiny amount will be "blockbusters" who can pay for everything else.

    You also have to take into account the limited time available to them, Pharma keeps thing a old fashioned secret as long as it can because as soon as they patent it the timer starts and they need to get through testing and clinical trials. There might not be much of that ~20 years patent when they finally make it to market.
    ScumLord wrote: »
    The pharma company is likely making good profit on other drugs, maybe offer some exclusivity to the market if they give big reductions on rare meds like these.

    Most of those making the good profit are the patent ones which already have an exclusivity (a patent is a state sanctioned monopoly). Extending patents is done, and has seen a lot of drug in the US extended far beyond their normal expiration date.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    ScumLord wrote: »
    The pharma companies also have to take into account all the other drugs we buy off them.

    Really the government should be going in with a good overview of what they think the drugs are costing and working out some inclusive price. The pharma company is likely making good profit on other drugs, maybe offer some exclusivity to the market if they give big reductions on rare meds like these.

    Ireland is a consumer group and we should be acting like one.

    Cystic fibrosis isn't rare really. Ireland has the highest prevalence of CF so maybe a deal can be made on that basis.


  • Registered Users, Registered Users 2 Posts: 2,881 ✭✭✭Kurtosis


    The price of Orkambi does not reflect the benefits it provides on average to CF patients who take it. Most other drugs, procedures, and services in other disease areas provide more patient benefits at the same cost. This is the big issue, the health gains if Orkambi was funded at the current price would be at the expense of other patients elsewhere in the health system.

    Vertex have to either reduce the price to a level that matches the overall benefits it provides or agree to some sort of risk-sharing or outcomes-based pricing system so that they only charge for patients for whom the treatment is effective.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    penguin88 wrote: »
    The price of Orkambi does not reflect the benefits it provides on average to CF patients who take it. Most other drugs, procedures, and services in other disease areas provide more patient benefits at the same cost. This is the big issue, the health gains if Orkambi was funded at the current price would be at the expense of other patients elsewhere in the health system.

    Vertex have to either reduce the price to a level that matches the overall benefits it provides or agree to some sort of risk-sharing or outcomes-based pricing system so that they only charge for patients for whom the treatment is effective.

    Results from the 2 clinical trials of Orkambi show that the number of exacerbations requiring hospital treatment was reduced by 39%. This has implications outside of the main symtoms of CF, for instance reduced cost to the taxpayer from less hospitalisations and reduced risk of hospital infections.

    While I agree the price doesn't currently justify it, I'm not so sure you can more benefits with several drugs.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    s4uv3 wrote: »
    I'd need to see the exact figures from the pharma company before I could make a judgement.

    Fair enough it costs billions in R&D for these drugs, but what would be the profit margins? Yearly figures? All that has to be taken into account.

    We (our government), spend a right hape of money on some proper eejiting and messing every year, so we should be able to afford to pay for these lifesaving drugs, but not if the company involved is making a killing on profits.

    Considering the HSE seems to be one long academic study in waste they should be very careful about what they say they can't afford.


  • Registered Users, Registered Users 2 Posts: 2,881 ✭✭✭Kurtosis


    steddyeddy wrote: »
    Results from the 2 clinical trials of Orkambi show that the number of exacerbations requiring hospital treatment was reduced by 39%. This has implications outside of the main symtoms of CF, for instance reduced cost to the taxpayer from less hospitalisations and reduced risk of hospital infections.

    While I agree the price doesn't currently justify it, I'm not so sure you can more benefits with several drugs.

    Reduced healthcare expenditure for managing exacerbations was taken into account in the economic evaluation that was carried out: http://www.ncpe.ie/wp-content/uploads/2015/12/Website-summary-orkambi.pdf. This indicated for every quality-adjusted life year (which is a measure of both quality and quantity of life) gained as a result of Orkambi, the cost would be ~€370K. Generally, the limit for new drugs to be deemed cost effective is €45K per quality-adjusted life year. Orkambi isn't even in that ballpark, hence why I said that at the current price, the same funding would do a lot more good elsewhere in the health system.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    penguin88 wrote: »
    Reduced healthcare expenditure for managing exacerbations was taken into account in the economic evaluation that was carried out: http://www.ncpe.ie/wp-content/uploads/2015/12/Website-summary-orkambi.pdf. This indicated for every quality-adjusted life year (which is a measure of both quality and quantity of life) gained as a result of Orkambi, the cost would be ~€370K. Generally, the limit for new drugs to be deemed cost effective is €45K per quality-adjusted life year. Orkambi isn't even in that ballpark, hence why I said that at the current price, the same funding would do a lot more good elsewhere in the health system.

    I agree with the funding but the pharmacodynamics should offer more of a health benefit than multi-drug therapy. Don't forget that this is multi-drug therapy.


  • Advertisement
  • Registered Users, Registered Users 2 Posts: 40,291 ✭✭✭✭Gatling


    steddyeddy wrote: »
    Considering methadone was synthesized during WW2 and heavily pre and proscribed it would be significantly less.

    It's currently costing €20 million per year supplying methadone to junkies but yet the government can't fund life savings drugs for people with a multitude of illness and diseases


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    Gatling wrote: »
    It's currently costing €20 million per year supplying methadone to junkies but yet the government can't fund life savings drugs for people with a multitude of illness and diseases

    So you're not in favor of funding disease related to self medication? Say goodbye to funding for diabetes type 2, certain types of lung and liver cancer related to substance abuse.


  • Registered Users, Registered Users 2 Posts: 36,170 ✭✭✭✭ED E


    Gatling wrote: »
    It's currently costing €20 million per year supplying methadone to junkies but yet the government can't fund life savings drugs for people with a multitude of illness and diseases

    You cant use absolute figures, it has to be relative to the treated cohort.


  • Registered Users, Registered Users 2 Posts: 2,881 ✭✭✭Kurtosis


    steddyeddy wrote: »
    I agree with the funding but the pharmacodynamics should offer more of a health benefit than multi-drug therapy. Don't forget that this is multi-drug therapy.

    I'm not sure I understand your comment. I know Orkambi is a combination of two drugs in a single tablet. The trial evidence shows it is effective at improving lung function and reducing exacerbations, the problem is it is not cost-effective, the fact it is a multi-drug treatment does not change that.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    penguin88 wrote: »
    I'm not sure I understand your comment. I know Orkambi is a combination of two drugs in a single tablet. The trial evidence shows it is effective at improving lung function and reducing exacerbations, the problem is it is not cost-effective, the fact it is a multi-drug treatment does not change that.

    I'm agreeing with you that it's not cost effective in the slightest. From your earlier posts I gathered you were implying that the same effect as Orkambi can be achieved with multiple treatments. I'm not sure how true that is.


  • Registered Users, Registered Users 2 Posts: 2,881 ✭✭✭Kurtosis


    steddyeddy wrote: »
    I'm agreeing with you that it's not cost effective in the slightest. From your earlier posts I gathered you were implying that the same effect as Orkambi can be achieved with multiple treatments. I'm not sure how true that is.

    Oh sorry, what I was saying was that most treatments in other disease areas (i.e. not CF) are more cost-effective, and spending the same amount of money on these would provide greater health benefits overall to society. If Orkambi is funded at the current cost, these extra health benefits would be sacrificed, which is the reality of opportunity of opportunity costs when making funding decisions in healthcare.


  • Registered Users, Registered Users 2 Posts: 27,564 ✭✭✭✭steddyeddy


    penguin88 wrote: »
    Oh sorry, what I was saying was that most treatments in other disease areas (i.e. not CF) are more cost-effective, and spending the same amount of money on these would provide greater health benefits overall to society. If Orkambi is funded at the current cost, these extra health benefits would be sacrificed, which is the reality of opportunity of opportunity costs when making funding decisions in healthcare.

    Sorry I misunderstood your post! Yes it's a pity but that's the way it works. Personally I think some lobby groups need to understand this.


  • Closed Accounts Posts: 615 ✭✭✭Boaty


    At a cost of nearly 400million over 5 years , this is a massive deal for Vertex, increasing their turnover by 5%.
    80 million out of a 14 billion euro health budget doesn't sound like much when you think about it.


  • Moderators, Arts Moderators Posts: 35,576 Mod ✭✭✭✭pickarooney


    The medical research should all be funded by an international NPO and the drugs should be free or at least affordable.


  • Advertisement
  • Closed Accounts Posts: 4,042 ✭✭✭zl1whqvjs75cdy


    The medical research should all be funded by an international NPO and the drugs should be free or at least affordable.

    Where does the money for that come from? And more than that, who does the manufacturing? All well and good having an excellent drug proven at small scale, but if you need 1000 kg plus a year of it who makes that for you? The capital cost of a new manufacturing plant is astronomical, and then you need staff to run it.


  • Registered Users, Registered Users 2 Posts: 6,276 ✭✭✭Ubbquittious


    If the government were clever they'd give some postgrad chemists a nixer synthesising this stuff in an underground bunker some place. Give them 50k a year each and threaten them with a harsh punishment if they spill the beans to anyone. Tell the CF patients a pack of lies about what pills they're getting and let some other country pay the megacorp that invented this drug.

    Most of the outrageous eye-watering price of this stuff is to provide a return on investment for the megacorp and the stuff is probably not expensive to make at all


  • Registered Users, Registered Users 2 Posts: 7,498 ✭✭✭BrokenArrows


    steddyeddy wrote: »
    Lumacaftor/ivacaftor (brand name Orkambi) is relatively new combination drug for the treatment of cystic fibrosis. Cystic fibrosis is a disease caused by a range of mutations and deletions of the gene for a chloride transporter (CFTR) which transports chloride across membranes. If you are unable to move ions like chloride across membranes you'll also have problems regulating fluid. We have one of the highest incidences of Cf in the world with 1 in 20 people being carriers.

    Ivacaftor works as a potentiator of chloride channels that are already in place and lumacaftor works by refolding protein chloride channels resulting in a higher amount of expressed chloride channels. This drug will significantly enhance the lives of CF sufferers, but we can't afford it as It costs around 160 K per patient.

    I'm not having a go at the pharmaceutical company necessarily as it costs billions to get a drug to market. From the biochemical analysis that enables us to discover a drug target, to the chemistry that goes into designing a drug to fit a target and the human trials, no one can say this isn't a costly process.

    Treating illnesses currently doesn't work from a strictly capitalistic view point as some rare diseases with orphan status are partly government funded as the companies wouldn't make their money back. Should governments or charities do more or should the pharm companies do more?


    https://www.cfireland.ie/about-cf states that 1200 people have CF in Ireland.

    at 162k per year per paitent thats 192 million per year which to be honest is insane.

    Regardless of the cost of production there is no way they can justify that price. If it was a cure then maybe but as something which just makes the patients lifes better and needs a lifetime of treatment.

    The average lifespan of a CF patient is 37 years. Thats 6 million over a life time to these drug companies for a single person.


  • Registered Users, Registered Users 2 Posts: 40,573 ✭✭✭✭ohnonotgmail


    If the government were clever they'd give some postgrad chemists a nixer synthesising this stuff in an underground bunker some place. Give them 50k a year each and threaten them with a harsh punishment if they spill the beans to anyone. Tell the CF patients a pack of lies about what pills they're getting and let some other country pay the megacorp that invented this drug.

    Most of the outrageous eye-watering price of this stuff is to provide a return on investment for the megacorp and the stuff is probably not expensive to make at all


    do you think they should just write off all the research costs and sell it for the manufacturing cost?


  • Registered Users, Registered Users 2 Posts: 7,498 ✭✭✭BrokenArrows


    do you think they should just write off all the research costs and sell it for the manufacturing cost?

    They should be recovering the costs over a longer period of time resulting in cheaper medicine.

    Honestly organisations like the EU or the economic division of Nato should fund a single huge research centre which develops these drugs and sells to all participating nations at cost price.

    A world wide collaboration on medical technology would be amazing. Never going to happen but it would be amazing.


  • Registered Users, Registered Users 2 Posts: 6,276 ✭✭✭Ubbquittious


    do you think they should just write off all the research costs and sell it for the manufacturing cost?

    Let some other country pay them. There are plenty of countries absolutely milking it off national debt payments from us and they're rolling in so much money they can well afford to pay 80,000 for a pack of pills.

    IF we weren't 200bn in debt I'd say take the easy way and just buy them but when the ould kitty is empty you have to improvise


  • Advertisement
  • Registered Users, Registered Users 2 Posts: 40,573 ✭✭✭✭ohnonotgmail


    They should be recovering the costs over a longer period of time resulting in cheaper medicine.

    Honestly organisations like the EU or the economic division of Nato should fund a single huge research centre which develops these drugs and sells to all participating nations at cost price.

    A world wide collaboration on medical technology would be amazing. Never going to happen but it would be amazing.


    They have a limited period of time to recover those costs. once their patent expires anybody can make the drug.


  • Registered Users, Registered Users 2 Posts: 7,498 ✭✭✭BrokenArrows


    They have a limited period of time to recover those costs. once their patent expires anybody can make the drug.

    Ya but the patent length is 20 years. Assuming 8 years from invention through to public sale that gives them 12 years to recover costs.

    12 years at these prices put total earnings at 13 billion (assuming only 1% of CF patients take the product) when the cost of development for the average new drug is 2.5 billion.


  • Registered Users, Registered Users 2 Posts: 2,100 ✭✭✭ectoraige


    https://www.cfireland.ie/about-cf states that 1200 people have CF in Ireland.

    at 162k per year per paitent thats 192 million per year which to be honest is insane.

    Regardless of the cost of production there is no way they can justify that price. If it was a cure then maybe but as something which just makes the patients lifes better and needs a lifetime of treatment.

    The average lifespan of a CF patient is 37 years. Thats 6 million over a life time to these drug companies for a single person.

    Your annual cost estimate can be halved. Orkambi is only useful for a specific form of Cystic Fibrosis, and isn't given to children under twelve, which precludes about 50% of Irish patients. A small number of children won't survive to be able to receive Orkambi. It is during adolescence that sees the biggest spike in CF deaths, so it is hoped that we'll see fewer teenagers dying from the disease.


  • Registered Users, Registered Users 2 Posts: 40,573 ✭✭✭✭ohnonotgmail


    Let some other country pay them. There are plenty of countries absolutely milking it off national debt payments from us and they're rolling in so much money they can well afford to pay 80,000 for a pack of pills.

    IF we weren't 200bn in debt I'd say take the easy way and just buy them but when the ould kitty is empty you have to improvise

    I'm sure other countries would be more than willing to pay them on our behalf. Especially given the high rate of CF in this country.


  • Registered Users, Registered Users 2 Posts: 6,276 ✭✭✭Ubbquittious


    I'm sure other countries would be more than willing to pay them on our behalf. Especially given the high rate of CF in this country.

    We are a small broke pesky Island nation out in the atlantic somewhere and a small market.
    Have some minister come out and say the stuff is too expensive, make it on the QT and be done with it.

    Tis not up to us to Trump up the dosh, do the moral capitalist right thing and ensure everyone in VRTX gets their Christmas bonus.


  • Advertisement
  • Closed Accounts Posts: 12,452 ✭✭✭✭The_Valeyard


    It's easy to look at costs and say 'to expensive,' but just take a stroll through the children's hospital with babies hooked up to ventilators and wires for machines, if there was a drug that only had a 10% chance of success. You'd want to be made of steel to say no.


  • Closed Accounts Posts: 7,275 ✭✭✭Your Face


    Id like to see the bill for this incomparison to the daily wasting of government funding.


  • Registered Users, Registered Users 2 Posts: 2,881 ✭✭✭Kurtosis


    Where does the money for that come from? And more than that, who does the manufacturing? All well and good having an excellent drug proven at small scale, but if you need 1000 kg plus a year of it who makes that for you? The capital cost of a new manufacturing plant is astronomical, and then you need staff to run it.

    The money could come from existing expenditure on pharmaceuticals. Traditionally drug discovery, development, and manufacturing are all funded through the price paid for medicines at the point of delivery to the health system through the patent system. It's perfectly reasonable to look at alternatives to patents as a means of funding drug development research and innovation. There's some information on this concept of "delinkage" here. This isn't something Ireland can really take a solo run on but it is an option that could result in more affordable drug research.

    As happens at the moment, there is plenty of capacity in the generic medicines manufacturing industry to manufacture off-patent drugs. A new system may just mean new drugs are effectively off-patent from the start and could be licensed to one or all manufacturers to produce.


  • Registered Users, Registered Users 2 Posts: 40,573 ✭✭✭✭ohnonotgmail


    Kurtosis wrote: »
    The money could come from existing expenditure on pharmaceuticals. Traditionally drug discovery, development, and manufacturing are all funded through the price paid for medicines at the point of delivery to the health system through the patent system. It's perfectly reasonable to look at alternatives to patents as a means of funding drug development research and innovation. There's some information on this concept of "delinkage" here. This isn't something Ireland can really take a solo run on but it is an option that could result in more affordable drug research.

    As happens at the moment, there is plenty of capacity in the generic medicines manufacturing industry to manufacture off-patent drugs. A new system may just mean new drugs are effectively off-patent from the start and could be licensed to one or all manufacturers to produce.

    if you are charging a licencing fee to recover the costs of R&D those fees are going to be very expensive for a drug with a small target market like CF. And how do you recover the cost of drug research that doesnt lead to a usable medicine?


  • Registered Users, Registered Users 2 Posts: 1,935 ✭✭✭Anita Blow


    It's easy to look at costs and say 'to expensive,' but just take a stroll through the children's hospital with babies hooked up to ventilators and wires for machines, if there was a drug that only had a 10% chance of success. You'd want to be made of steel to say no.

    That's fair enough as someone not in the DoH to say, but the reality is that these decisions have to be made. The money doesn't grow on trees and the money dedicated to helping the relatively small number of such children, of which just 10% would benefit, would be taken away from other drugs which could benefit far more people with a higher success rate. It's the reason we have the Quality-of-life-adjusted Years system of judging whether to fund a drug, so we can view the merits of a drug dispassionately without being swayed by emotion.


  • Closed Accounts Posts: 12,452 ✭✭✭✭The_Valeyard


    Anita Blow wrote: »
    That's fair enough as someone not in the DoH to say, but the reality is that these decisions have to be made. The money doesn't grow on trees and the money dedicated to helping the relatively small number of such children, of which just 10% would benefit, would be taken away from other drugs which could benefit far more people with a higher success rate. It's the reason we have the Quality-of-life-adjusted Years system of judging whether to fund a drug, so we can view the merits of a drug dispassionately without being swayed by emotion.

    You make perfect sense, but sometime I think Charlie Chaplin was right when he said "We think too much and we feel too little


  • Registered Users, Registered Users 2 Posts: 3,253 ✭✭✭jackofalltrades


    Boaty wrote: »
    80 million out of a 14 billion euro health budget doesn't sound like much when you think about it.
    And how many people could you take off the waiting lists for medical procedures by spending €80 million a year over the next 5 years?
    I would consider that a significant sum.
    It's easy to look at costs and say 'to expensive,' but just take a stroll through the children's hospital with babies hooked up to ventilators and wires for machines, if there was a drug that only had a 10% chance of success. You'd want to be made of steel to say no.
    But our health budget is fixed.
    Saying yes to one person means saying no to another.
    And when it comes to drugs that aren't good value it means saying no to a disproportionate amount of people.
    How many patients will be left in a worse off position due to this deal?
    That and deals like this will probably be used as a justification for the next large price medication.
    You make perfect sense, but sometime I think Charlie Chaplin was right when he said "We think too much and we feel too little
    And how many health budgets did he manage?
    Feelings should be removed from decisions like this as far as humanely possible.


  • Closed Accounts Posts: 12,452 ✭✭✭✭The_Valeyard


    And how many people could you take off the waiting lists for medical procedures by spending €80 million a year over the next 5 years?
    I would consider that a significant sum.

    But our health budget is fixed.
    Saying yes to one person means saying no to another.
    And when it comes to drugs that aren't good value it means saying no to a disproportionate amount of people.
    How many patients will be left in a worse off position due to this deal?
    That and deals like this will probably be used as a justification for the next large price medication.

    And how many health budgets did he manage?
    Feelings should be removed from decisions like this as far as humanely possible.

    Remove humanity from the decisions and people become monetary units to the meat grinder.


  • Registered Users, Registered Users 2 Posts: 1,935 ✭✭✭Anita Blow


    Remove humanity from the decisions and people become monetary units to the meat grinder.

    I understand what you're trying to say, but it's essentially meaningless. Our budget is fixed and there's nothing we can do about that so decisions have to be made about opportunity costs.
    Do you spend 80 million on a single drug available to just ~800 people, of which just a percentage will benefit? Or do you spend the 80 million on hiring 10 new consultants, a hundred new doctors/nurses/physios/OTs that can wipe out paediatric waiting lists for a number of diseases (some of which are life-limiting) for tens of thousands? Common sense suggests that you go with the option which has the greatest potential to do good for the most people.

    And there's another problem with the emotive argument. It becomes a sort of Hunger Games for different disease groups. Patient advocacy groups for the more common diseases might have the budget and pool of patients to campaign heavily for investment in their disease, but why are they any more deserving than a person who has a disease that only 5 other people in the country has? Our current system judges the merits of a drug based on how effective it is and how economic it is, regardless of how "popular" a condition is.


  • Registered Users, Registered Users 2 Posts: 2,881 ✭✭✭Kurtosis


    if you are charging a licencing fee to recover the costs of R&D those fees are going to be very expensive for a drug with a small target market like CF. And how do you recover the cost of drug research that doesnt lead to a usable medicine?

    Those considerations already play into the current system, orphan drug designation for rare diseases gives pharmaceutical companies extended patents etc. to help recoup costs. Likewise the cost of failed research is covered through what we pay for successful research that results in useful medicines.

    The suggestion is that rather than handing pharmaceutical companies a big of pot of money to buy medicines from them which funds the costs of all of their activities, why not try to separate the reward/payment for R&D. Right now, the companies themselves get to decide how much of the big pot to invest in R&D and what areas to pursue R&D in. They of course are going to target this at areas where they think they can most yield a profit. Some of the strategies involved in delinkage would mean governments/policy makers could decide on what priorities areas for research should be. How rare a disease is wouldn't matter to companies pursuing the R&D, they would receive funding whether it's a treatment for 100 people or 100 million, the cost of R&D doesn't really vary by disease prevalence.


  • Advertisement
Advertisement