While this is uplifting, it's also good marketing for a dubious drug. The studies do show an extended lifespan after diagnosis, but it was approved on the back of a single study of 137 people, and...
While this is uplifting, it's also good marketing for a dubious drug. The studies do show an extended lifespan after diagnosis, but it was approved on the back of a single study of 137 people, and will cost cost about $12,500 for a 28-day supply, or $158,000 a year before insurance, far above the Institute for Clinical and Economic Review's recommended price of between $9,100 to $30,700 per year. The company releasing the drug promises that all the profits will go into researching the next generation of ALS drugs, but given that this drug is merely a combination of two previous drugs, the profits they'll receive seem exorbitant.
My mother died of ALS, and on the morning of her death she wished that there would be news of a miraculous cure that would reverse the impact of ALS on her body and let her live a full life again. This is not that drug. It'll let people live a little longer (an additional 20% expected lifespan post-diagnosis is nothing to sneer at,) but it draws out a process that is already full of suffering. It may be the right choice for some people, to let them try to reach one more important landmark in life, but even if the effects do persist in a larger sample size it's not universally the right choice.
Ah, dang. That's actually quite disappointing to hear that the drug unfortunately isn't all its cracked up to be in this article, and is also far more expensive than it probably should be. Thanks...
Ah, dang. That's actually quite disappointing to hear that the drug unfortunately isn't all its cracked up to be in this article, and is also far more expensive than it probably should be. Thanks for sharing your knowledge about it regardless though. Also, sorry about your mom. :(
While this is uplifting, it's also good marketing for a dubious drug. The studies do show an extended lifespan after diagnosis, but it was approved on the back of a single study of 137 people, and will cost cost about $12,500 for a 28-day supply, or $158,000 a year before insurance, far above the Institute for Clinical and Economic Review's recommended price of between $9,100 to $30,700 per year. The company releasing the drug promises that all the profits will go into researching the next generation of ALS drugs, but given that this drug is merely a combination of two previous drugs, the profits they'll receive seem exorbitant.
My mother died of ALS, and on the morning of her death she wished that there would be news of a miraculous cure that would reverse the impact of ALS on her body and let her live a full life again. This is not that drug. It'll let people live a little longer (an additional 20% expected lifespan post-diagnosis is nothing to sneer at,) but it draws out a process that is already full of suffering. It may be the right choice for some people, to let them try to reach one more important landmark in life, but even if the effects do persist in a larger sample size it's not universally the right choice.
Ah, dang. That's actually quite disappointing to hear that the drug unfortunately isn't all its cracked up to be in this article, and is also far more expensive than it probably should be. Thanks for sharing your knowledge about it regardless though. Also, sorry about your mom. :(