British Woman Denied Life Saving Drug, Even Though It’s Free

This is from the Daily Telegraph, courtesy of David Henderson:

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 says 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at Heartlands Hospital in Birmingham say it would be unethical to provide the drug under the deal, only for it to be withdrawn later.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.

Comments (18)

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  1. Cindy says:

    There are so many complex ethical issues here. I’m not sure if I think it is cruel to promise a drug that could alleviate symptoms and then take it away (the free trial promises at least the possibility of a longer life, more good days, etc.). I do think that if the patient, knowing the deal, wants it, she should have it. It’s her life, there’s no up-front cost — it should be her choice.

  2. Devon Herrick says:

    This drug costs $292,000 per patient per year. If every British citizen who would benefit received it, the total cost to the NHS would be nearly $79 million dollars each year. Public Choice Theory, which the NCPA has written about, explains how the politics of medicine plays out. Politicians in a publically-funded system cannot afford to “waste” $79 million dollars in resources on 272 people year after year. Thus, the NHS’ cash-strapped system is better served — at least politically — to deny this care and direct the resources towards the vast number of people who only need episodic care. By contrast, a privately-insured patient in the United States would likely receive this life-saving drug because federal law would prohibit insurers from denying this care.

  3. Buster says:

    If I were to guess, I say the British hospital is negotiating with the company who sells this drug. Why else would it refuse a “free” treatment? The treatment isn’t free — it’s £182,000 annually. Once the free trial runs out, the hospital would not be in a good position to refuse to pay for continued treatment. The hospital knows that once started, it’s stuck paying for it. The drug company knows this. By refusing to allow the free limited-time gift on ethical grounds, the British hospital sends a message to the drug company that it cannot just set prices arbitrarily and expect the hospital to just pay them.

  4. Alex says:

    That’s absolutely unthinkable. They are basically signing off this woman as already dead.

  5. Paul says:

    This is what happens when you put government in charge of deciding someone else’s health.

  6. Cindy says:

    Devon, that explanation is an extremely helpful way to look at this. It’s also a worthwhile reminder that utilitarian calculations in health care are inevitable but some systems deal with competing claims more ethically than others.

  7. Laurel says:

    I agree with Cindy. If the manufacturer is offering the drugs for free to the patient, then why is the hospital, or anyone else for that matter, getting involved? It’s her decision, knowing the pros and cons of taking the drug, to accept the deal and have access to it for a limited time and then see how to proceed once they take it away from her. But it shouldn’t be up to no one to decide whether the manufacturer can give her the drug or not. This is pretty much a death sentence to her knowing there’s a slight possibility for her to live a little longer, and perhaps in the meantime find other ways to cope with her condition.

  8. Robert says:

    I agree with Cindy…who is to say that one should be denied a few extra weeks of life? If the company is truly offering it up, and it works, she could at least take the chance to go knock some things off her bucket list in clear health (for the first time in her life, apparently).

  9. Spencer says:

    More and more proof of the negative consequences of letting governments and their regulations control the health care system.

  10. Robert says:

    Apparently the drug was developed with the assistance of $75 million from the Cystic Fibrosis Foundation and is offered free to patients that make less than $150,000/year…not finding anything about it being a trial ‘scam’.

  11. Charlotte says:

    Regardless of the fact that the medication is going to be withdrawn later, it’s still giving her more days to live. Isn’t this enough reason to let her take the drug? Who are they to dictate how long a patients gets to live? Geez.

  12. Jimmy says:

    I believe that this hospital might have their ethics out of whack. Extending the life (or saving it) is reason alone for offering a drug.. Regardless if it may, or may not be their in the future.

  13. hgstern says:

    The Much Vaunted National Health Service© has relented:

    “Following these discussions, we are very pleased to announce that they have taken the decision to offer the treatment on a compassionate basis to named patients, without limiting the offer to a fixed period of time.”



  14. John Fembup says:

    Thanks hgstern.

    You seem alone in realizing that the issue was not whether the medication was “free”. The issue was that it would be “free” for a limited period of time–after which the hospital trust would (a) have to withdraw it – and face an outraged public – or (b) continue to provide the medication at its own expense.

    That’s why the issue was resolved when the drugmaker agreed to remove the time limit for providing the medication “free”.

    IMO an even larger issue is the rapidly growing role of the veterinary ethic. The veterinary ethic? Yeah, that’s when the master and the medical provider decide between them what medical treatment the pet shall receive.

  15. Baker says:

    It seems like an amazing drug

    “Kalydeco marks a breakthrough in CF treatment because it is the first drug to address the underlying cause of cystic fibrosis. All other therapies available address the symptoms of the disease, not the underlying cause”

    “Kalydeco helps unlock that gate and restore the function of the CFTR protein, allowing a proper flow of salt and fluids on the surface of the lungs. This helps to thin the thick, sticky mucus caused by CF that builds up in the lungs.”

  16. Jordan says:

    +1 Cindy and Charlotte

  17. Kyle says:

    Would have been nice to see some sort of precedent here. Have to agree with Charlotte. Seems far more cruel to deny someone additional time, however limited.

  18. seyyed says:

    wow, neither scenario seems to work in favor for the patient. either she gets the drug for free, but only for a limited time, or is denied it altogether