Cystic Fibrosis sufferer denied 'chance of life' drug by NHS

  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 3:05 PM GMT
    http://www.telegraph.co.uk/health/healthnews/9639090/Cystic-Fibrosis-sufferer-denied-chance-of-life-drug-by-NHS.html

    A 29-year-old woman will die without a new drug that the NHS is refusing to provide despite the manufacturer offering it to her for free, it emerged today.

    Caroline Cassin, 29, who suffers from Cystic Fibrosis (CF) has been offered a new drug free of charge for a limited period by the makers but her NHS hospital is refusing.

    Her family say she will die soon without it, yet managers at Heartlands Hospital in Birmingham say it would be unethical to provide the drug under the deal, only for it to be withdrawn later.

    The drug, Kalydeco also known as ivacaftor, costs £182,000 per patient per year, and works for five per cent of people with CF who have a certain defective gene, around 270 people in England.

    It corrects a malfunctioning protein which causes the characteristic build-up of fluid and mucus in the lungs that causes devastating damage.
    It usually kills in the late 30s.

    The drug, effectively allows sufferers to lead a normal life, and has been available in America since January, and is successfully trialled and licenced in this country.

    However it has not yet been approved for use on the NHS and an expert specialist group is due to make recommendations to health service funding organisations by December.

    Vertex Pharmaceuticals has offered to make the drug available on compassionate grounds to certain patients.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 3:15 PM GMT


    For free in perpetuity, Riddler? It's almost 300 thousand dollars a year for one person.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 3:28 PM GMT


    Meanwhile, here's some truth instead of nonsense.

    http://investors.vrtx.com/releasedetail.cfm?releaseid=712776

    in particular:

    ""KALYDECO was approved less than ten months ago in the U.S., and since then, the majority of eligible patients have started treatment."

  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 4:02 PM GMT
    meninlove said

    For free in perpetuity, Riddler? It's almost 300 thousand dollars a year for one person.


    Ah, so the government should just make that choice for them? I mean why stop there? Any treatments that cost above $50k? Let's just stop all those. I mean you do understand what the purpose is of insurance?

    In this case, the absurdity is that at least the drug company was willing to provide the drugs for free but the UK government was unwilling to let her have it - even on humanitarian grounds.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 4:03 PM GMT
    meninlove said

    Meanwhile, here's some truth instead of nonsense.

    http://investors.vrtx.com/releasedetail.cfm?releaseid=712776

    in particular:

    ""KALYDECO was approved less than ten months ago in the U.S., and since then, the majority of eligible patients have started treatment."



    Ah so it was approved in the US, what about usage in the UK and under the NHS?
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 4:08 PM GMT
    Meanwhile... imagine if a corporation was caught doing stuff like this

    http://www.telegraph.co.uk/education/9639650/Girls-of-13-given-birth-control-jab-at-school-without-parents-knowledge.html

    In Bristol, which has one of the highest rates of teenage pregnancy in the country, contraceptive jabs have been given to schoolgirls aged between 13 and 16 on 430 occasions in the past two years.

    Schoolgirls aged 13 have been given the jabs 19 times, 14-year-olds 129 times, 15-year-olds 190 times and 16-year-olds 92 times.

    The jabs are offered at drop-in sexual health clinics, called 4YP Bristol, in 16 secondary schools and colleges.

    A spokesman for NHS Bristol, which oversees the scheme, said there was no requirement for either nurses or pupils to seek parent’s permission “due to the confidentiality of the service”.

    In Northumbria, schoolgirls aged 13 have been given jabs three times, 14-year-olds 40 times, 15-year-olds 142 times and 16-year-olds 144 times.
    Co Durham and Darlington NHS Trust said that up to 20 girls aged 15 and 16 had been fitted with contraceptive implants in schools.

    Nurses have given contraceptive jabs to 14-year-old girls on up to 10 occasions, 15-year-old girls up to 37 times and 16-year-old girls more than 60 times.

    The Heart of England NHS trust in the West Midlands has given contraceptive injections to eight 15-year-old girls, while around 15 girls aged 14 and 15 have been given the injections in Peterborough.

    Contraceptive injections have also been given to schoolgirls in Berkshire.
    In Southampton, 33 schoolgirls were fitted with contraceptive implants under a scheme administered by Solent NHS trust. Thousands of schoolgirls are also given contraceptive jabs and injections in family planning clinics.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 9:07 PM GMT
    The NHS is a massive organisation. In fact, it is the 4th largest employer in the world. Is it perfect? No, but most of the time it does a great job.

    You won't see anything like this in the UK:

    They came in their thousands, queuing through the night to secure one of the coveted wristbands offering entry into a strange parallel universe where medical care is a free and basic right and not an expensive luxury. Some of these Americans had walked miles simply to have their blood pressure checked, some had slept in their cars in the hope of getting an eye-test or a mammogram, others had brought their children for immunisations that could end up saving their life.


    http://www.independent.co.uk/news/world/americas/the-brutal-truth-about-americarsquos-healthcare-1772580.html
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 9:16 PM GMT
    Ex_Mil8 saidThe NHS is a massive organisation. In fact, it is the 4th largest employer in the world. Is it perfect? No, but most of the time it does a great job.

    You won't see anything like this in the UK:

    They came in their thousands, queuing through the night to secure one of the coveted wristbands offering entry into a strange parallel universe where medical care is a free and basic right and not an expensive luxury. Some of these Americans had walked miles simply to have their blood pressure checked, some had slept in their cars in the hope of getting an eye-test or a mammogram, others had brought their children for immunisations that could end up saving their life.


    http://www.independent.co.uk/news/world/americas/the-brutal-truth-about-americarsquos-healthcare-1772580.html


    Just more brutal policies like this? Where's the accountability? You think it would be better if the US government ran the entire healthcare system?
    http://www.metro.co.uk/news/892352-patients-denied-care-if-they-fail-nhs-fat-and-fags-test

    It found one West Country commissioning group, Peninsula, banning patients from IVF treatment unless they have been non-smokers for at least six months.

    Although it claimed to be following National Institute for Health and Clinical Excellence guidelines, the authority only gives some fertility drugs to patients if they have a body mass index of between 19 and 29.9 – where 18.5 is underweight and 30 and above is obese.

    NHS Hertfordshire has extended a policy that bans hip and knee operations for patients with a BMI of more than 30 and denies all routine procedures to smokers except in neurology, cardiac and cancer surgery.

    And at NHS Tees, patients must have a BMI of 40 or more before they are considered for weight-loss surgery.

    Shadow health secretary Andy Burnham called on the government to intervene over the ‘discriminatory policies’.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 10:07 PM GMT
    riddler78 said
    meninlove said

    For free in perpetuity, Riddler? It's almost 300 thousand dollars a year for one person.


    Ah, so the government should just make that choice for them? I mean why stop there? Any treatments that cost above $50k? Let's just stop all those. I mean you do understand what the purpose is of insurance?

    In this case, the absurdity is that at least the drug company was willing to provide the drugs for free but the UK government was unwilling to let her have it - even on humanitarian grounds.


    Oh for Pete's sake:
    http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=5084
    It's approved and has been since July. However, my initial question remains; for how long is it free? In perpetuity?
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 11:32 PM GMT
    meninlove said
    riddler78 said
    meninlove said

    For free in perpetuity, Riddler? It's almost 300 thousand dollars a year for one person.


    Ah, so the government should just make that choice for them? I mean why stop there? Any treatments that cost above $50k? Let's just stop all those. I mean you do understand what the purpose is of insurance?

    In this case, the absurdity is that at least the drug company was willing to provide the drugs for free but the UK government was unwilling to let her have it - even on humanitarian grounds.


    Oh for Pete's sake:
    http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=5084
    It's approved and has been since July. However, my initial question remains; for how long is it free? In perpetuity?


    It clearly states that it is temporary. However, are you making the argument then she should be denied access to it while it's free and extend her life during this period? And your claim that it has been approved still doesn't negate the fact that they are preventing her from having access to the drug. For Pete's sake? Yes, for Pete's sake let's just throw her off a cliff because that would mean even more healthcare dollars available for everyone else? Is that what you're trying to say?
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 11:44 PM GMT
    And how would she fair under the current US model?

    She wouldn't be able to afford the drug. icon_rolleyes.gif
  • Posted by a hidden member.
    Log in to view his profile

    Oct 29, 2012 11:47 PM GMT
    Christian73 saidAnd how would she fair under the current US model?

    She wouldn't be able to afford the drug. icon_rolleyes.gif


    It's quite likely she would have insurance - like the vast majority of Americans. If not, at least she might have access to the drug on humanitarian grounds versus being denied by her government.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 30, 2012 12:01 AM GMT
    riddler78 said
    meninlove said
    riddler78 said
    meninlove said

    For free in perpetuity, Riddler? It's almost 300 thousand dollars a year for one person.


    Ah, so the government should just make that choice for them? I mean why stop there? Any treatments that cost above $50k? Let's just stop all those. I mean you do understand what the purpose is of insurance?

    In this case, the absurdity is that at least the drug company was willing to provide the drugs for free but the UK government was unwilling to let her have it - even on humanitarian grounds.


    Oh for Pete's sake:
    http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=5084
    It's approved and has been since July. However, my initial question remains; for how long is it free? In perpetuity?


    It clearly states that it is temporary. However, are you making the argument then she should be denied access to it while it's free and extend her life during this period? And your claim that it has been approved still doesn't negate the fact that they are preventing her from having access to the drug. For Pete's sake? Yes, for Pete's sake let's just throw her off a cliff because that would mean even more healthcare dollars available for everyone else? Is that what you're trying to say?


    Nope, but nice attempt to put words in my mouth, almost as good as your natural ability to put your foot in yours. icon_lol.gif
  • Posted by a hidden member.
    Log in to view his profile

    Oct 30, 2012 12:03 AM GMT
    riddler78 said
    Christian73 saidAnd how would she fair under the current US model?

    She wouldn't be able to afford the drug. icon_rolleyes.gif


    It's quite likely she would have insurance - like the vast majority of Americans.


    *laughing at this absurd assumption, unless you happen to be supporting Obamacare which will mean the vast majority WILL have insurance*
  • Posted by a hidden member.
    Log in to view his profile

    Oct 30, 2012 12:39 AM GMT
    meninlove said
    riddler78 said
    meninlove said
    riddler78 said
    meninlove said

    For free in perpetuity, Riddler? It's almost 300 thousand dollars a year for one person.


    Ah, so the government should just make that choice for them? I mean why stop there? Any treatments that cost above $50k? Let's just stop all those. I mean you do understand what the purpose is of insurance?

    In this case, the absurdity is that at least the drug company was willing to provide the drugs for free but the UK government was unwilling to let her have it - even on humanitarian grounds.


    Oh for Pete's sake:
    http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=5084
    It's approved and has been since July. However, my initial question remains; for how long is it free? In perpetuity?


    It clearly states that it is temporary. However, are you making the argument then she should be denied access to it while it's free and extend her life during this period? And your claim that it has been approved still doesn't negate the fact that they are preventing her from having access to the drug. For Pete's sake? Yes, for Pete's sake let's just throw her off a cliff because that would mean even more healthcare dollars available for everyone else? Is that what you're trying to say?


    Nope, but nice attempt to put words in my mouth, almost as good as your natural ability to put your foot in yours. icon_lol.gif


    Er sure... heh, you seem as delusional as that racist TropicalMark
  • Posted by a hidden member.
    Log in to view his profile

    Oct 30, 2012 12:42 AM GMT
    meninlove said
    riddler78 said
    Christian73 saidAnd how would she fair under the current US model?

    She wouldn't be able to afford the drug. icon_rolleyes.gif


    It's quite likely she would have insurance - like the vast majority of Americans.


    *laughing at this absurd assumption, unless you happen to be supporting Obamacare which will mean the vast majority WILL have insurance*


    Absurd assumption? How many people in the US have healthcare insurance? And of those, how many qualify for Medicare?

    You persistently betray your ignorance of most issues whenever you run into any issue that requires basic facts.

    http://www.cnn.com/2012/06/27/politics/btn-health-care/index.html

    The situation could clearly be improved but the vast majority of Americans do have health insurance.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 30, 2012 12:50 AM GMT
    Sorry, I'm having trouble keeping track here. Who are we bitching about? England? America? Canada? I'm so confused.

    Oh what the hell....blame Canada!

  • Posted by a hidden member.
    Log in to view his profile

    Oct 30, 2012 12:51 AM GMT
    Caslon21000 saidSorry, I'm having trouble keeping track here. Who are we bitching about? England? America? Canada? I'm so confused.

    Mars
  • kew1

    Posts: 1595

    Oct 30, 2012 11:31 AM GMT
    riddler78 said
    Christian73 saidAnd how would she fair under the current US model?

    She wouldn't be able to afford the drug. icon_rolleyes.gif


    It's quite likely she would have insurance - like the vast majority of Americans. If not, at least she might have access to the drug on humanitarian grounds versus being denied by her government.


    In the UK insurance companies would refuse her cover in the first place, are American insurance companies compelled to cover existing (genetic) conditions?

    Also it's not the government refusing her the drug,the hospital did.
  • Posted by a hidden member.
    Log in to view his profile

    Oct 30, 2012 3:15 PM GMT
    kew1 said
    riddler78 said
    Christian73 saidAnd how would she fair under the current US model?

    She wouldn't be able to afford the drug. icon_rolleyes.gif


    It's quite likely she would have insurance - like the vast majority of Americans. If not, at least she might have access to the drug on humanitarian grounds versus being denied by her government.


    In the UK insurance companies would refuse her cover in the first place, are American insurance companies compelled to cover existing (genetic) conditions?

    Also it's not the government refusing her the drug,the hospital did.



    BINGO, which means she has recourse, IF she in fact has the specific type of CF that will respond to this drug, and doesn't have other conditions that the side effects will exacerbate. (at the cost of 300,000 thousand a year someone will be getting very rich on the backs of others' life threatening illness, now how classy is that?)