[southernplaces7]

But in all seriousness, who would you direct your anger at in this case? For one thing, being angry in a general sense implies that a fortuitous blend of circumstances is owed to you by the world in a broad sense so that your specific, completely accidental (of nature) misfortune can be remedied. Secondly, many people suffer from much more common conditions that also have no remedy so far (i'm an example of such), and this doesn't mean that it's the fault of any system or person in particular. It's more the case that there are so many multitudes of types of suffering that could be made better in our world, and only limited, incremental resources for going after any number of them over time. Given that, it's obvious that many causes of suffering, including illnesses, will be left wanting at any given time without it necessarily being something that you could fairly fault human agency for..

I mean, do you really believe that in some realistic alternative system of organizing society, your specific, extremely rare condition would have already been addressed, or have had more of a chance of being addressed than under what exists now in the world?

Sorry for elaborating so much in this comment, but the complaint you make is one i've frequently seen and for the reasons above it has never seemed entirely logical to me.

[anon84873628]

I find this comment to be downright insulting to the parent. You manage to:

1) Call them entitled for feeling angry 2) Remind them that other people have it worse 3) Imply they're stupid for imaging things could work any other way

And then try to defend your obviously immature, unproductive, and unsolicited criticism in the "I'm just being logical!" excuse.

The parent didn't go on a screed and rage at the world. They didn't try to claim their anger is righteous. And they certainly didn't ask you to play two bit therapist.

Rather, they shared a totally reasonable and relatable emotional response to the situation they are in. I personally found it relevant and insightful to the discussion.

I highly encourage you to reevaluate to how you respond to these sorts of comments in the future.

[southernplaces7]

I see nothing insulting in my comment, unless you think that just so much as questioning any of the premises of an emotional response in someone suffering is automatically an insult. In that case, you're just wrong and irrationally so.

Being sick doesn't make a person free of possibly feeling entitled or coming to unreasonable conclusions, nor does it make it wrong to question their feelings. I did so fairly politely. In my comment above, I was honestly asking for them to clarify who they think is worth being angry at, and why. I also explained reasonable reasons for why it's misdirected to claim as unfair a very general thing that's removed from you specifically only because it hasn't yet gotten around to creating relief for a problem you have, in a complex world full of problems that can't all be solved all at once or in just the way any one person desires.

This is a reality that all of us live with, so how the hell is it insulting if someone points it out?

>The parent didn't go on a screed and rage at the world. They didn't try to claim their anger is righteous. And they certainly didn't ask you to play two bit therapist

No, but they commented about their problem in a comment thread where people comment back and debate randomly. I don't give shit one about being anyone's therapist, but if you mention something personal, in a comment thread of all things, expect the possibility of someone responding with questions or opinion, like you yourself are doing. Should I feel insulted too?

I too have a long-term, very tedious and problematic health condition I need to deal with day by day, and it has no real medical remedy yet. I try to temper my frustration though. I understand that some things just aren't easy to fix.

[anon84873628]

Please, you didn't just ask genuine innocent questions. You assumed many things about the OP's mindset then passed judgment on it.

You refer several times to argument and debate but you're tilting at windmills. The OP didn't make an argument. The closest thing is "Such is the state of medicine for profit, I guess." which is more of a resigned, bitter observation than overt indictment of capitalism.

If you want to use that as a prompt to say why no other funding model is better, then ok fine. But there are polite ways to do it which acknowledge the legitimacy of the person's feelings.

What's different about my comments is that they address things actually in the text and are in the spirit of bystander intervention and setting the tone of the commons.

[JohnMakin]

I genuinely appreciate these responses because you state them much calmer and clearer than I can. To me, and I’m not accusing anyone here of this, these discussions feel really dishonest or at the very least completely unempathetic. I see in another comment this user says they feel sympathy, but clearly not empathy. and that’s fine to me! very few people have experienced what I have and will experience, in the specific way that I have, and my heart personally reaches out to anyone else that deals with some health condition that limits their quality of life or worse. I have, however, spent a ridiculous amount of time in the healthcare system, for a variety of reasons other than this specific topic, and know that this kind of callousness is more of a feature than a bug. To my mind, it’s also extraordinarily inefficient.

I’ll pose an argument to the rationalist crowd that I feel likes to think and feed deeply off these types of discussions:

say I’m destined to create the cure for cancer or bring about the singularity or whatever. I’m not, but let’s say I was. And I fall and hit my head one day and die because some billionaire decided that my condition wasn’t worth investing a miniscule fractional percentage of his wealth.

would that be wasteful?

[JohnMakin]

It is, which is why I'm not really going to engage with it directly. honestly, this attitude is so insanely common and I struggle to understand it personally so I dont really engage with it much. In real life people often struggle to understand, like, if you look at me I "look" fine, yet, I am mobility limited and have to use a cane a lot. They'll be casually dismissive about it like "oh, there's gene therapies now, someday they will cure you." Like, no, and I still have to live with it until and if that day comes (it probably will not). Saying things like that diminishes the very real struggles I deal with for pretty much no reason at all and is really callous, even though people are often unaware of how it sounds.

I'm also being purposely vague here to protect my privacy but I think most people if they had a condition that (and this is all true):

- causes severe pain and limits mobility to the use of a wheelchair over a period of time. No ability to exercise or have sex after it has progressed enough;

- Limits your ability to procreate because of the above bullet point but also because of the high risk of passing it off to offspring

- A cure exists but society hasn't deemed you special enough to put time into it

That.. wouldn't make you angry a little bit? I don't have to even blame anyone or anything to be allowed that. It's enormously frustrating. I'm not being entitled by being frustrated and angered by it, that idea is of course perfectly absurd. As is the idea that the anger needs to be "directed" anywhere. I guess I maybe drink a little too much and that's where it goes? honestly, who cares? And if I may borrow the parlance of the GP comment, their doesn't seem very "logical" from my POV. As is the downvoting swarms that usually accompany any kind of sentiment against the Almighty Altar of Capitalism. I'm not even making a critique of it, or offering an alternative, because I don't have one, but I don't need to provide one. It does suck, albeit for a small amount of people. But I guarantee you if you added up the sum of rare but probably treatable/curable diseases that we havent spent time on because of the rarity, the sum of those people is probably a significant chunk of the population.

[southernplaces7]

For what it's worth, I actually sympathize a lot with your frustration and have felt the same, but was honestly questioning if you were arguing from some sort of real claim that it's unfair for you to not have a solution now, or just from general emotional frustration.

For the first one, my arguments above, for the second one, fair enough, it happens to anyone suffering enough from something, and though I've tried to calm and redirect it when I feel that way, it's hard to pull off.

You also didn't explain, and i'm honestly curious: is this something that has no remedy for someone who's an adult, or something that has a treatment, but it's too expensive for you?

>But I guarantee you if you added up the sum of rare but probably treatable/curable diseases that we havent spent time on because of the rarity, the sum of those people is probably a significant chunk of the population.

Well yes, but there are also many much more widely devastating problems that we can also treat, but which haven't been fixed yet, and the reasons for that are way too complex to blame any one thing, or capitalism. Governments and all their immense resources are around too, yet they also don't quite seem to get around to fixing so many things that have solutions. Again, comparing the real world with your desires is never going to work. The world needs to be compared with its previous states for a fair sense of perspective.

[itake]

I think they are angry because a solution is available but not accessible.

People are gatekeeping resources that would enable access to treatment because for big companies, spending $1 to earn $1 isn’t a sustainable business model.

[southernplaces7]

My understanding of the comment wasn't that. It was that a solution for his adult version hasn't yet been developed because it's not commercially viable to do so due to its rarity. This of course brings me right back to the points I made in my own comment above. Resources are scarce, and commercial viability, or at least resource viability for all the effort of development, is a factor under any system you choose to look at. There are just so many priorities out there and we all know this. We can't compare the world of our ideal vision of how it should be with what's the case. We need to compare what's the case with what's realistic, and with was previously the case, and how it has changed, either for better or worse.

If on the other hand, a solution for his problem does exist and is simply not available, I don't see how that makes sense. Why wouldn't it be sold if it were available?

[itake]

I think we are saying the same thing. Companies chase high risk high reward over low risk low reward.

Presumably, curing a genetic disorder for a very small number of people using existing technology is low risk and low reward.

> Why wouldn't it be sold if it were available?

Just because something works in a small lab doesn’t mean it’s ready to sell. To launch a product, companies need to do a lot more: testing, certifications, licenses, marketing, training, and more. Sometimes, even when a product is finished, companies decide not to launch it if their budget or priorities shift elsewhere.

A related example could be unreleased movies like Batgirl Or Coyote vs. Acme. The films were completed, but they felt their marketing dollars would be better spent on other projects.

[mandevil]

> Presumably, curing a genetic disorder for a very small number of people using existing technology is low risk and low reward.

At the present state of medical understanding, in vivo gene therapy is not low risk, just from a financial perspective, leaving aside the medical risks.

In 2017 the FDA approved Luxterna, the first in vivo gene therapy treatment (it had an original list price of 425,000/eye). It fixed RPE65 associated Retinitis Pigmentosa. This spring J&J announced that their LUMEOS trial had missed its primary endpoint, even though it was basically treating the exact same disease, in the same way, just a different gene (RPGR). But only 22 of the 55 treated patients showed improvements on at least two of their measures, and there was no statistically significant improvement on their primary measure. So this stuff is still very much a financial risk, because we simply don't understand human bodies well enough to predict outcomes in a RCT for gene therapy. And if you have to do a Phase III trial to know whether it works or not, then you are going to be forced to spend a whole lot of money to bring any gene therapy to the market.

[toast0]

> Presumably, curing a genetic disorder for a very small number of people using existing technology is low risk and low reward.

I don't know if that presumption is reasonable. Yes, low reward; but I suspect the risk/cost for a gene therapy is about the same, regardless of the number of people affected. You still need to do all the pre-human trials, which are still expensive; then you've got to do human trials, which are still expensive ... and if there aren't enough potential patients, you might not even be able to run a reasonable trial. (although the article describes a situation of a single patient treatment, you obviously can't run a human trial of that). IMHO, that makes it higher risk than targeting something that affects many more people.

[anon84873628]

Perhaps in the future we will have regulation that allows, let's call it, "experimental" genetic therapy for diseases with a very small patient population, similar to what is already allowed for certain terminally ill patients. That could reduce the economic barriers to treating these groups.

[JohnMakin]

I thought it was pretty clear that's why, but I guess people will read what they will. Not sure why you're being downvoted - it's extremely angering to have a condition that severely limits your quality of life have a cure that society easily has within reach that will likely never become available to you because market forces deemed so. Wouldn't that anger anyone? Like am I supposed to go, "oh gee shucks, that's just the all knowing invisible hand, oh well?"

Weird comment thread. Not bad, just surprises me.

[JohnMakin]

Besides how insulting this comment is, which I'm going to ignore, I'd just point out a common theme in this thread is "limited resources" yet those limited resources are currently being incinerated on things like AI sex bots. Seems like a bit of a fallacy or cope to me. Research for some of these things costs essentially a rounding error. The limited resource you're mentioning here is "profit," not actual resources. it's not like society can't decide to invest in these things instead of the enrichment of a very small group of people.

[mrlatinos]

Profit is driven by demand. It incentivizes meeting demand. Profit is not what is scarce. It's our ability to meet everyone's demand. In a reality where profit does not exist, rare disorders are still at the bottom of the list, because demand and net impact is still low.