3 ms·

Here's the study: https://www.ncpe.ie/wp-content/uploads/2021/04/Libmeldy-Beneluxa-RG-Joint-Report-Summary-Ireland-Final.pdf https://www.ncpe.ie/wp-content/uplo

Here's the study: https://www.ncpe.ie/wp-content/uploads/2021/04/Libmeldy-Beneluxa-RG-Joint-Report-Summary-Ireland-Final.pdf https://www.ncpe.ie/wp-content/uploads/2021/04/Libmeldy-Bene... It's worth mentioning that the study in Ireland indicates that the treatment extends life by 14.49 QALYs (average "Total Life-years" moved from 8.92 to 22.74), which is a long way from a cure. If this is truly a cure, and the treated population lives a full life (life expectancy in Ireland is current 82 years, not 23), then this treatment will become cost effective without any change in the treatment or it's cost. The posted article agrees that this is the big open question. > The benefit of the therapy seemed to last several years, but at this point, "it is not yet clear whether it will persist life-long, and extended follow-up is needed," the EMA noted.

jiggawatts 4y ago
They can't possibly know that the drug extends life to "22.74" years, because it has only been approved for use for the last 3 years! This is like asking for 30 years of Kubernetes experience on a job application. Even if the estimate is accurate, there is a massive qualitative difference between slowly dying horribly for 'x' years and living a normal life for 'y' years. You can't just subtract 'x' from 'y' and come up with a delta and compute based on that. Reminds me of the studies that showed that Tamiflu is ineffective because it only reduced the duration of influenza symptoms by 1/2 a day on average. Yes, that's true, I've taken it myself and the symptoms continued for about the normal period of time. But it reduces the severity massively. It's like a light switch. The most severe flu suddenly turns into the mildest of mild cold-like symptoms in a matter of hours. But... that's hard to measure objectively, so it is not recommended because the according to a metric that doesn't matter it doesn't work. The statistics and metrics in medical papers are woeful, which is why it's commonly accepted that 1/2 of all medical research is false.
- louthy 4y ago
  > The statistics and metrics in medical papers are woeful Ok, this probably needs some extraordinary evidence … > which is why it's commonly accepted that 1/2 of all medical research is false. The irony
- timerol 4y ago
  > Even if the estimate is accurate, there is a massive qualitative difference between slowly dying horribly for 'x' years and living a normal life for 'y' years. The difference in measured in QALYs - quality-adjusted life years. The study attempts to take that into account. > They can't possibly know that the drug extends life to "22.74" years, because it has only been approved for use for the last 3 years! This is like asking for 30 years of Kubernetes experience on a job application. Yes, exactly my point. The long-term effects of this treatment are what will make it worthwhile or not. Trying to extrapolate a few years to a full life does not make that an easy exercise.
- cwillu 4y ago
  > Even if the estimate is accurate, there is a massive qualitative difference between slowly dying horribly for 'x' years and living a normal life for 'y' years. If only there was a measure that was adjusted for the quality of the year. Some sort of quality-adjusted life year. Yes, it's not a perfect measure (how could any quantitative measure of a qualitative thing be perfect?).

jiggawatts 4y ago

They can't possibly know that the drug extends life to "22.74" years, because it has only been approved for use for the last 3 years! This is like asking for 30 years of Kubernetes experience on a job application. Even if the estimate is accurate, there is a massive qualitative difference between slowly dying horribly for 'x' years and living a normal life for 'y' years. You can't just subtract 'x' from 'y' and come up with a delta and compute based on that. Reminds me of the studies that showed that Tamiflu is ineffective because it only reduced the duration of influenza symptoms by 1/2 a day on average. Yes, that's true, I've taken it myself and the symptoms continued for about the normal period of time. But it reduces the severity massively. It's like a light switch. The most severe flu suddenly turns into the mildest of mild cold-like symptoms in a matter of hours. But... that's hard to measure objectively, so it is not recommended because the according to a metric that doesn't matter it doesn't work. The statistics and metrics in medical papers are woeful, which is why it's commonly accepted that 1/2 of all medical research is false.

louthy 4y ago
> The statistics and metrics in medical papers are woeful Ok, this probably needs some extraordinary evidence … > which is why it's commonly accepted that 1/2 of all medical research is false. The irony
timerol 4y ago
> Even if the estimate is accurate, there is a massive qualitative difference between slowly dying horribly for 'x' years and living a normal life for 'y' years. The difference in measured in QALYs - quality-adjusted life years. The study attempts to take that into account. > They can't possibly know that the drug extends life to "22.74" years, because it has only been approved for use for the last 3 years! This is like asking for 30 years of Kubernetes experience on a job application. Yes, exactly my point. The long-term effects of this treatment are what will make it worthwhile or not. Trying to extrapolate a few years to a full life does not make that an easy exercise.
cwillu 4y ago
> Even if the estimate is accurate, there is a massive qualitative difference between slowly dying horribly for 'x' years and living a normal life for 'y' years. If only there was a measure that was adjusted for the quality of the year. Some sort of quality-adjusted life year. Yes, it's not a perfect measure (how could any quantitative measure of a qualitative thing be perfect?).