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Gene Therapy Was Hailed as a Revolution – Then Came the Bill

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Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#31

Post by Mirioron »

ludston wrote: post #29
Mirioron wrote: post #21

Earlier quoted context omitted.

It's ethical, because as a society we need to look at the long term rather than any specific treatment. It's better for us if private investors invest money into lifesaving treatments, because it means that more of them will be available earlier to people. If investors go and invest in something else then nobody's getting the benefit of the medicine. Let's say we have a disease that kills 1000 people per year. Let's…

I invent another imaginary hypthetical situation: 4. Nobody makes any attempt to create a treatment, but after only six months a miracle occurs. Nobody dies and everybody is cured for no reason. Not saying that there isn't any, but where is the evidence that a government funded research team would be slower than the privately funded one?

The problem isn't that a government funded research team is slower, it's that the private research team is in addition to the government research team. There are an uncountable number of illnesses and conditions that treatments could help with, but we have only so many resources to throw at these problems. Additional resources will allow us to find treatments for problems that we couldn't afford to research otherwise.

If the government invests $100 billion into medical research and private companies invest another $100 billion then we're probably getting more medical research done than if only the government invested $100 billion into medical research, and the private companies spent the $100 billion on making movies.

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#32

Post by yread »

refurb wrote: post #2

What this article misses is that even with a price tag of more than $1M, many of these therapies will save the system money . They kind of gloss over it when talking about Zolgensma, but the current treatment, Spinraza, costs ~$750K in the first year and $375K every year after. So even by year 2, you've already spent one million and you pay that indefinitely . So if Zolgensma shows 5 years of efficacy and Zolgensma c…

From a more general pricing perspective: how should you price your product versus the status quo? Is it really appealing if it's only 10% cheaper? For my SaaS I was aiming more at 50% cheaper. Am I leaving money on the table?

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#33

Post by contravariant »

Mirioron wrote: post #21
Reelin wrote: post #17

Earlier quoted context omitted.

Parent is asking how it can be ethical to place such a large price tag on a lifesaving therapy if the materials themselves are cheap. It's one thing for AMD or Intel to recoup engineering costs with outlandish per-chip costs as compared to the cost of manufacturing itself. However, serious ethical questions about profit margins and recouping R&D appear once someone's life is directly tied to usage. That being said, o…

It's ethical, because as a society we need to look at the long term rather than any specific treatment. It's better for us if private investors invest money into lifesaving treatments, because it means that more of them will be available earlier to people. If investors go and invest in something else then nobody's getting the benefit of the medicine. Let's say we have a disease that kills 1000 people per year. Let's…

I mean if we're only looking at made up numbers anyway isn't the 3rd scenario preferable? Almost the same number of people died, but there was no 20 year long period where people were paying extortionate rates for a medicine, and it took 30 years before the diseases was effectively cured, as opposed to the 20 years it took before a government funded cure came along.

You might even argue that the money saved by not having a patent could be used to save even more lives.

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#34

Post by mikekchar »

refurb wrote: post #13
tuxxy wrote: post #8

Earlier quoted context omitted.

How can anyone think this is ethical for lifesaving medical care?

Not sure what you mean. Are you saying it’s unethical that it’s hard to make new therapies?

It's interesting to speculate on the "It costs $1 to press the button and $10K for knowing which button to press" kinds of problems. I mean, if you spend several hundred thousand on a medical degree, it is ethical to ignore someone dying if they can't pay you? Personally, I think it is -- nobody should be forced to do something just because they know how. However, I can totally understand the other point of view. Do the clinics who refuse patients who can't pay watch those people suffer and die? Of course not. It would be horrible if they had to. Would you ever choose to expose yourself to the information that could save people lives if in exchange you would have to choose between watching people suffer or go into bankruptcy as you fail to repay your loans that gave you the information in the first place.

It sucks. I'm with some others who say that we should try to improve our society so that nobody would have to make such a choice.

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#35

Post by awongh »

One thing that I'd like to know is if the profit margin is the same for one of these one time treatments as a repeat treatment.

If we assume that these things must be produced within a market system, it seems like the real moral question isn't what the dollar amount is, (since it logically follows that the cost to produce it must increase with the total revenue it's going to produce) but it would seem troublesome to say that we only produce treatments that have %20 profit because our shareholders expect blah blah, etc. etc.

If they already have the treatment and don't want to sell it because they can't price it profitably enough that seems pretty wrong to me. Not sure what the solution is though. I see how all the incentives could be aligned this way. And the article seems to hint that this is already the case.

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#36

Post by codeulike »

refurb wrote: post #4
anfilt wrote: post #3

Earlier quoted context omitted.

At that point it's probably just cheaper to get a plane ticket to a country that does not patent or enforce a patent for the treatment.

Unlike small molecules, gene therapy isn't something that somebody can just whip up in a lab. Similar to biologics, there are often some trade secrets involved in the manufacturing that require a lot of time and money to figure out.

CRISPR's not that hard, this guy did it in his garage. Delivering it to cells is a bit harder, but not that hard unless you're talking brain cells, then the blood-brain barrier causes trouble.

https://www.theguardian.com/science/2017/dec/24/josiah-zayne...

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#37

Post by deadbunny »

smacke wrote: post #14
tuxxy wrote: post #8

Earlier quoted context omitted.

How can anyone think this is ethical for lifesaving medical care?

Playing devil's advocate: there may be an argument that such care would not have been developed without the free-market monetary incentive. (Maybe not; maybe it would have been developed thanks to some government-funded grant. The point is: it's worth understanding what's possible and impossible in our current system.)

I work for a government driven genome research company in the UK, there are many others like this across Europe. Gov funding isn't such a problem in Europe where healthcare is a government issue.

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#39

Post by onetimemanytime »

tuxxy wrote: post #8
refurb wrote: post #4

Earlier quoted context omitted.

Unlike small molecules, gene therapy isn't something that somebody can just whip up in a lab. Similar to biologics, there are often some trade secrets involved in the manufacturing that require a lot of time and money to figure out.

How can anyone think this is ethical for lifesaving medical care?

Hmmmm: The food that you ate last night might saved a life or two in Africa. Or given a child the nutrition it needs. You could have done just fine with half of what you ate...

Re: Gene Therapy Was Hailed as a Revolution – Then Came the Bill

#40

Post by Brakenshire »

yread wrote: post #32
refurb wrote: post #2

What this article misses is that even with a price tag of more than $1M, many of these therapies will save the system money . They kind of gloss over it when talking about Zolgensma, but the current treatment, Spinraza, costs ~$750K in the first year and $375K every year after. So even by year 2, you've already spent one million and you pay that indefinitely . So if Zolgensma shows 5 years of efficacy and Zolgensma c…

From a more general pricing perspective: how should you price your product versus the status quo? Is it really appealing if it's only 10% cheaper? For my SaaS I was aiming more at 50% cheaper. Am I leaving money on the table?

It’s a bit different to have a product which is demonstrated as better in a massive, independently audited, randomized control trial.
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