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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

#21

Post by Mirioron »

Reelin wrote: post #17
refurb wrote: post #13

Earlier quoted context omitted.

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

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 look at a 40 year period.

1. No cure is researched or found in 40 years. Total death count: 40,000.

2. For the first 10 years no cure is found. After 10 years a company comes along and creates a lifesaving cure, however it's expensive - only 500 people per year can afford it. The patent on it lasts 20 years. After 20 years another company creates a generic version of it that 990 people can afford. In the first 10 years 10,000 people die, in the following 20 years another 10,000 people die, in the last 10 years 100 people die. Total death count: 20,100.

3. No cure is found in the first 20 years, then a government funded research team finds a cure. A company picks it up and creates a generic, where 99% people can afford it. In the first 20 years 20,000 people die. In the latter 20 years 200 people die. Total death count: 20,200.

Being early matters in medicine. It's always easy to look at an expensive treatment and say that this should be much cheaper, but we usually don't consider that forcing investors out of healthcare means that less research will be done. This means fewer treatments and a longer time before a treatment is found.

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

#22

Post by rjf72 »

Reelin wrote: post #17
refurb wrote: post #13

Earlier quoted context omitted.

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

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…

Another important factor is that it's not just a matter of funding but a matter of motivation. So for instance imagine we just do away with market economics and decide 'Okay, from now on the government will distribute $x billion per year to fund research and development of new drugs. In exchange, prices will also be government controlled to ensure equitable access for all to life saving treatment.'

This sounds great. We'd like to imagine that the companies would now expend all their energy towards developing new treatments, even ones that might not have been economically feasible before (think: the 'problem' of cure vs treat), and everybody would live happily ever after. Unfortunately, there's another way of looking at this. You just changed the company's goal away from market success and onto playing a game of min-maxing on government funding.

We have countless analogs to draw from here. Anytime a complex industry starts getting involved with government funding suddenly the entire game changes. It's not about producing anything, but instead about doing exactly what's necessary to keep, and maximize, the amount of funding received. And sure we'd like to imagine you could just create a million rules and regulations to try to ensure that this means exactly 'producing new amazing treatments' but actually doing that is not really practical. And, that's also ignoring the fact that these systems also rapidly lend themselves towards corruption:

'Well I tell you what Senator Pharmaceutical Commission Chair, we've been looking at building a new pharmaceutical research facility. And [your state] is looking right top notch. And you know what, voters will love those jobs we'll bring, and it'll even be a tax windfall in the longrun. The only thing that's stopping us from this is resources. Just something to keep in mind when you go draw up that next fiscal allotment. And ya know, you also might want to consider retirement. Once you leave office - we'd be mighty grateful for some of those great insights you have. We're always looking for consultants with the right sort of experience, if you know what I mean.'

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

#23

Post by anfilt »

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.

Still does not stop someone from trying since they now know what to look for. Also genetic synthesis has gotten cheaper and so has sequencing.

Moreover a lot techniques for gene therapy are already in the literature. Moreover you have to document what it's doing or what your doing for approval (in-case of a procedure).

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

#24

Post by waterhouse »

aaronbrethorst wrote: post #20
skwb wrote: post #18

Earlier quoted context omitted.

But due to insurance churn, you don’t want to be footing the bill for your competitor down the road. As an insurance manager, your unit of analysis is not healthcare system or society, but your quarterly bottom line.

Sounds like a great argument for Medicare for All, the NHS, or other nationalized systems.

Or for insurance companies to form an association that comes up with policies that would benefit all of them if they all did them, and then requires all member companies to implement them. Not sure exactly what carrot or stick they could use to ensure that any remaining insurance companies have an incentive to join the association rather than trying to free-ride off what they're doing, but one might be able to come up with something.

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

#25

Post by Reelin »

tuxxy wrote: post #19
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…

This is a great comment, but I have to say my comment was rather rushed. I was implying more that the idea of trade secrets on life-saving treatment was unethical. The question of funding is an important discussion, but I was trying to discuss the trade secret details and I didn't really get my point across in the comment.

That honestly hadn't occurred to me; I'm much more familiar with fields where most of the important details end up patented. I generally view all forms of intellectual property (patents, trade secrets, copyrights) as nothing more than mechanisms by which to exact funding.

I suppose a trade secret would prevent circumventing IP law by heading to a more permissive jurisdiction and is potentially indefinite. But then again, if anyone ever successfully reverse engineered it (or it leaked) my understanding is you can't patent it in retrospect? So it seems like a huge risk to me.

From an ethical standpoint, I'm not seeing where it would be any worse than a patent (one that's actually enforced). Unless you're concerned about the possibility of the knowledge becoming lost to humanity? Or something else?

An aside: I wouldn't be optimistic about the usefulness of trade secrets on their own in the biomedical sciences. It can certainly be tedious to reverse engineer something, but my impression is that it's generally the IP laws that stop your potential competition.

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

#26

Post by aaronbrethorst »

waterhouse wrote: post #24
aaronbrethorst wrote: post #20

Earlier quoted context omitted.

Sounds like a great argument for Medicare for All, the NHS, or other nationalized systems.

Or for insurance companies to form an association that comes up with policies that would benefit all of them if they all did them, and then requires all member companies to implement them. Not sure exactly what carrot or stick they could use to ensure that any remaining insurance companies have an incentive to join the association rather than trying to free-ride off what they're doing, but one might be able to come u…

This Wikipedia page might offer some ideas: https://en.wikipedia.org/wiki/Cartel

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

#28

Post by Gatsky »

I'm ashamed when I see how much they are trying to charge. Glybera was a gene therapy that nobody used basically because it cost too much. This is a clear example that a company will never reduce the price of such a therapy. The actions of Mylan and the scumbag Shkreli also highlights the thought processes of pharma companies. As such, we shouldn't waste our time. The government should be allowed to negotiate pricing. I don't believe this will suppress research into rare conditions. There has in fact been an explosion of therapies for rare conditions in the last 10 years.

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

#29

Post by ludston »

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 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?

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

#30

Post by Jweb_Guru »

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?

Considering that many effective research teams are government funded, I suspect there is essentially no evidence of that.
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