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Thread: Cystic fibrosis mothers' plea over 'life-changing' drug

  1. #1

    Cystic fibrosis mothers' plea over 'life-changing' drug

    https://www.bbc.com/news/uk-wales-45215134

    Cystic fibrosis mothers' plea over 'life-changing' drug

    Kimberly Roberts is the mum of three-year-old Ivy, who has cystic fibrosis - or CF - which is a genetic lung disease with no cure.

    Along with her friend Alison Fare, who has two daughters with the condition, they want access to one of the most advanced treatments - the drug Orkambi.

    ...

    But the manufacturer and NHS bosses have been locked in arguments over its 100,000-a-year price tag since 2015.

    ...

    Nice - the body which recommends whether a drug or treatment is available on the NHS - has said that the ongoing bills for the drug would be "considerably higher than what is normally considered a cost-effective use of NHS resources".
    Pete (is having a rather depressing morning)

  2. #2
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    There are no death panels in socialized medicine.

    Sorry Pete. You know I'm not much of a prayer guy but I do it all the same for you and yours.
    "Democracy is a form of worship. It is the worship of jackals by jackasses." H.L. Mencken

  3. #3
    Yeah...it's not just Great Britain:

    https://www.cbc.ca/news/canada/briti...suit-1.4759935

    'Lives are on the line:' Cystic fibrosis patients file class action lawsuit for $250K-a-year drug

    Class action lawsuit says B.C. decision not to cover drug for rare disease violates Canadian Charter of Rights


    For a B.C. mother who suffers from cystic fibrosis, taking four pink pills a day made it possible to get out of bed, feed her kids and take them to school.

    "For the first time in a long time, I got to be a mother to them," said Melissa Verleg, 34, of Vernon, B.C., whose children are seven and nine years old.

    "Life was fantastic."

    The pill was Orkambi, a medication designed to treat cystic fibrosis in patients with a specific mutation.

    Patients like Verleg call it life-changing, but B.C. and other provinces don't cover its hefty cost: about $250,000 per patient per year or $170.54 per pill.

    Since Verleg's extended health plan also ruled it too expensive in January, she says her lung function has become "unstable," and she spends half her days on IV antibiotics.

    Now, she is one of two lead plaintiffs in a class action lawsuit against the federal minister of health and others for $60 million in damages for denying the coverage.
    Canada. The country a third of our people want to emulate.

    Pete (thinks most of those people haven't got a clue what they're talking about)

  4. #4
    The bottom line is this:

    I understand the national healthcare providers for not wanting to cover the drug. It's hellishly expensive and in some patients has marginal or even negative benefit (in some patients the liver reacts in a way that counteracts the benefits...don't ask me to explain it). So it's a tough sell to spend a quarter of a million dollars to not make patients better.

    But some patients respond really well to Orkambi. And you don't know which you are until you take it. To the best of my knowledge, we don't know why some perform better than others.

    Further, the copays in the USA are steep. A lot of patients self-select out of Orkambi because it's not making them better and the copay (specialty drug copays are usually not capped) can be five figures. In the UK and Canada though, there's no such incentive. You take it because you think you're entitled to it, and you don't give a rat's ass what it costs.

    Orkambi really highlights some of the stupidities inherent in a socialized healthcare system. Don't get me wrong, there are stupidities in our system too... but when people propose the Canadian or UK model, I protest vehemently. My daughter's doctor should decide what my daughter's treatment should be, not some bureaucrats in Washington whose primary concern is their budget.

    Pete (suspects this country will get fucked up for CF patients in the very near future too)

  5. #5
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    I had a meeting recently with the head of a major ICU who's a pulmonologist. He said a number of depressing things about rules for witholding antibiotics from CF patients unless their need was extremely dire. These are things like amakacin, which is currently the true drug of last resort for gram negative infections.
    They speak in bulletpointese leftist nutjob drivel. It doesn't matter. Nothing is as great a motivator as the chance to truly be free.
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  6. #6
    Quote Originally Posted by Jester View Post
    I had a meeting recently with the head of a major ICU who's a pulmonologist. He said a number of depressing things about rules for witholding antibiotics from CF patients unless their need was extremely dire. These are things like amakacin, which is currently the true drug of last resort for gram negative infections.
    For cost purposes or other reasons?

    Pete (wonders)

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    to minimize resistance to the only drug they have which works.

    This dude couldn't have cared less about costs unless you were talking about reducing days in the ICU, then his eyes lit up -- apparently most of the time, the hospital has to eat the cost of a person staying in the ICU because they're considered at fault for not keeping the patient out of the ICU; particularly for relapsing infections.
    They speak in bulletpointese leftist nutjob drivel. It doesn't matter. Nothing is as great a motivator as the chance to truly be free.
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  8. #8
    Quote Originally Posted by Jester View Post
    to minimize resistance to the only drug they have which works.

    This dude couldn't have cared less about costs unless you were talking about reducing days in the ICU, then his eyes lit up -- apparently most of the time, the hospital has to eat the cost of a person staying in the ICU because they're considered at fault for not keeping the patient out of the ICU; particularly for relapsing infections.
    I can't really argue with that. When it's your last resort...you have to guard that.

    Pete (suggests we find new resorts)

  9. #9
    Pete was any of the drug researched or funded by the CFF?

  10. #10
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    Quote Originally Posted by Danisr1 View Post
    Pete was any of the drug researched or funded by the CFF?
    substantially, but so did vertex. If they're prevented from profiting off the drug, the CFF foundation will find it needs to fully fund any future drugs.
    They speak in bulletpointese leftist nutjob drivel. It doesn't matter. Nothing is as great a motivator as the chance to truly be free.
    -Mr. Raceboy

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