I’m optimistic that at some point, I’ll be able to get a treatment to take care of my red green color blindness.
I’m well aware that it’s very much a first world problem, and rightfully should be very low on the totem pole of medical issues to cure.
But goddamnit, I want to see red.
I don't really know enough of the medical details - I thought people with color blindness lacked the proper receptors in their eyes, so it's not like in the article where a connection is restored; you'd have to grow new infrastructure in the eye which seems a bit more complicated. Nevertheless, would be very cool if possible - I know lots of men with color blindness.
In color blindness, the cone cells produce an incorrect opsin protein that isn't sensitive to red (or is sensitive to a frequency close to green). Gene therapy would fix that, though it'd probably take a while for the brain to understand the new information.
The main reason this therapy isn't available is because the FDA has decided that the risks of gene therapy aren't worth the benefit of curing color blindness. I agree with that evaluation, but I also think mavericks should be allowed to try curing their own colorblindness (assuming they had informed consent and paid for the therapy themselves).
I mean, what's stopping you? This guy cured his own lactose intolerance: https://www.youtube.com/watch?v=J3FcbFqSoQY
But I'm guessing — in part because you say "paid for the therapy" — that you don't really mean "should be allowed to cure their own colorblindness"; but rather "should be allowed to buy a colorblindness treatment from a vendor of such" or maybe "should be allowed to request a prescription of a colorblindness treatment from a doctor who acquires it from a vendor of such."
And you're already also allowed to do that — in theory. The FDA doesn't care about people buying medical treatments. It cares about companies selling them. Because companies are profit-focused, and the quickest way to money in medicine is to lie.
For you to be able to get what you want, there'd have to be an intermediate category that stops just shy of the current "FDA-approved medical therapy" category. For a treatment to qualify for this category, it would still have to pass both safety and efficacy studies. The only thing that would be different, is that the FDA wouldn't weigh the safety vs. the efficacy of the treatment at the end; but instead just put an absolute minimum threshold on both safety and efficacy, and leave the prescriber to determine whether the safety risk outweighs the efficacy.
But think about that word "prescriber." This would certainly allow people motivated to do this to go to their doctors and ask for such treatments specifically. But it would also enable doctors to choose such therapies for their patients, without the patient being previously aware of the treatment option.
And doctors can be bought. (See: doctors prescribing on-patent drugs when equally-effective generics are available; doctors adding on unnecessary adjunct therapies because a sales rep convinced them they should "give it a try"; etc.)
Do you want to live in a world where there's no ability for regulatory bodies to set a safety:efficacy-ratio threshold on a doctor's ability to prescribe drugs to patients? A world where a (bad) doctor might prescribe a drug that has a huge risk for very little chance of success, and all they have to do is put a consent form in front of the patient for the huge risk — without even having to explain the low-efficacy part?
(Honest question. Some people might very well prefer such a world.)
FWIW, doctors usually specify brands over generics when it actually matters if you have the same supplier every time. Bioavailability of generics is +/- 20% compared to the original branded drug by law in the US. So if you have a legal, generic drug here, it might be a 120% one, and your next refill might be an 80% one - you just got a 1/3 reduction in dose without warning. And if you have seizures? That’s a bad thing.
My wife is a neurologist. She deals with this. I’m an anesthesiologist; I just give more as needed because my patients don’t take their own drugs. Almost everything I give is generic, and the exceptions are when those fail.
You can make a very good living as a physician in the US without being a whore. Not worth my moral sense to make a few more dollars that won’t go to me directly anyway. Sure as hell not worth it to her; she’s a hospital employee.
True but it's not ±20%, it's "90% confidence interval of the mean is within +25%/-40%" which puts the dose much closer to 100% in practice.
https://www.pharmacytimes.com/view/debunking-a-common-pharma...
Still, these measured %ages should be much more explicit in the actual delivered drugs and in the range of values that are determined safe. There are plenty og drugs where double dose is fine and the therapeutic dose is "let's experiment on every patient evey day to see what works".
Thanks, that's good to know.
Antiepileptics are a very special category of drugs in that respect - they really do need to be right on target every time. I know a neurologist with epilepsy - not my wife - and he takes branded Zonegran. Thyroid hormone supplements are similar although the consequences are much lower (you're not going to accidentally kill anyone in a car wreck if your thyroid hormone is low).
Certainly, but I was mostly referring here not to doctors who actually make more money due to pharma companies; but rather to doctors who are "lobbied" / "direct marketed" to by pharma companies, using steak dinners, free samples (implicitly, to dispense directly to patients without insurance coverage — big in e.g. psychiatry), exclusivity arrangements with HMO boards, and so forth.
There's also the propaganda level: full-page ads in industry publications, biased (but technically unaffiliated) guest speakers presenting at industry conferences as a condition of sponsorship of said conferences, etc.
(My own wife is an optician. If you ignore frames and just focus [heh] on lenses, the optical industry is essentially a specific instance of the "medical device" industry. The number of people from the lens companies who come in to "educate" staff on "relevant use-cases for" their new technologies, but who end up instead trying to feed them specific marketing spiels, is ridiculous. The quantity of submarine product pitches I see disguised as factual content when I flip through her trade magazines is also ridiculous. And the industry-sponsored content that she had to wade through as part of her degree was downright abominable.)
I think you're speaking here of cases where a generic medicine is prescribed directly, which can get resolved to any old (white-label, store-brand?) formulation of the drug on each refill, or especially if you switch pharmacy.
But I was (clumsily) trying to motion at the idea of doctors prescribing an on-patent drug (that can only be manufactured by one company) vs. prescribing any specific brand of a sufficiently-effective, off-patent drug (where the lack of patent creates competition as many major pharma companies release their own formulations, which then lowers the price for all brands' versions of the drug, not just for the generic / white-label ones.)
This is specifically relevant in the case of patent lifetime extension — i.e. the classic https://www.youtube.com/watch?v=I0VIOQ4OpD8 — though also then see https://www.reddit.com/r/patentlaw/comments/16dyvfi/drug_pat.... Regardless of who's responsibility this phenomenon is, it does happen — doctors prescribing (expensive) X+1 rather than (now-cheap) X, because X+1 is now the standard of care... even though X was fine last week.
That's a really tough one. I just watched the lactose intolerance fix video you linked. Certainly that fabrication process is beyond my ability. But, after more of my own research, maybe I'd decide I want to pay someone else to produce the therapy for me. (I'm not anywhere near as lactose intolerant as the guy in the video, but it's bad enough that I'd be happy to rid myself if this problem.)
But should I be able to do that? Am I capable of evaluating the risks? Am I capable of even enumerating the various risk factors? This is not my field at all. Maybe the person making this for me is doing it in an unsafe manner, in a way that could result in dangerous contamination. How would I know?
I was blown away when I first saw the video, but he's completely reckless.
This Reddit thread has some interesting insight into just how dangerous it could have been: https://www.reddit.com/r/videos/comments/7x8x3q/dude_uses_ho...
Yep, and there it is -- I'd have no idea watching that video the risk mentioned by the top commenter there about the possibility of getting cancer for doing something like that.
This is why I'm leaning toward a "no" here... I probably shouldn't be legally allowed to pay someone else to make me something like this, regardless of what sort of informed consent form I sign.
The 'though it'd probably take a while for the brain to understand the new information' is an interesting question; on one hand people say you need to fix stuff early in development while the brain is still very plastic (so great for this kid); but then again there is that demo of people getting used to vertically flipped vision with weird glasses; so perhaps something is flexible?
The brain is good at re-mapping things where it can make a distinction, but it seems to only learn distinctions in so-called "critical periods". See doi:10.1038/228477a0 for a famous 1970s experiment on the subject.
There are lots of examples. Phonemes for language and are a very common example of things that can't be learned easily or at all later in life.
But huge changes like a major color might overcome that. Humans learn to recognize new major objects they've never seen before.
Humans can learn to recognise new sensory modalities, too (see paragraph 4 of doi:10.3389/fnhum.2019.00443's introduction) – but only if there's hardware that responds to them. The question is whether the visual cortex is capable of making the distinctions.
If colourblindness glasses (e.g. EnChroma®) work for you, then I suppose the answer is trivially "yes, because it already does" – and we should expect gene therapy to be useful. If there are people for whom those glasses don't do anything at all, I'd be more cautious.
yeah I'd be pretty surprised if your brain didn't figure it out in a week.
In what way do you agree with that evaluation then? The FDA certainly doesn't force anyone to undergo a treatment. And my understanding was the FDA doesn't decide who pays for a given treatment. In particular I don't think they define what medical insurance companies (or Medicare/Medicaid) have to pay for, do they? I think they just say whether the treatment is ethical to be performed at all. So when you say that mavericks should be allowed to try it, I think you're simply disagreeing with them?
Could you provide the ref/details of this particular gene therapy and FDA views? I can understand why the FDA wants to move ahead slowly unless the condition is life-threatening or the impact is life-changing.
Instead of modifying existing eyes, they should grow additional one/two.
Not sure why you're being downvoted for advocating for spidermen.
It's the cones in the eye -- they have a defect and make them less receptive to red wavelengths. If you gene-edited them, you could have new cells without that defect.
Have you tried color blindness glasses (e.g. EnChroma)? I am not familiar with them but some reaction videos were pretty heartwarming.
Those videos are fake the glasses don't do very much.
https://www.youtube.com/watch?v=RY-NF_7R-pk&t=559
Colorblind person here. This debunking video is piling on more BS, like oh, colorblind people learned to be amazing at detecting slight color changes! No, we are not. We learned what names are attached to what color, but we see them differently, much poorer (save for blues). Enchroma apparently helps with separation, as parent comment suggests. That being said, the fake dramatic videos are definitely shameful scam, agreed.
What boggles my mind a bit is that true colorblindness glasses don't seem that difficult to me. Standard red-blue 3d glasses almost do it, it's just you need red-green differentiating glasses. I don't think this would Open the World of Color!, but it would with a bit of practice probably allow you to at least perceive a difference.
But the glasses need to be visibly-differently (to a non-color-blind person) tinted. If they look the same, they're not going to work. Just like a "blue-reducing" pair of glasses needs to look visibly yellow, or it clearly (in all senses of the term) isn't doing anything.
A truly optimal pair would take some sciencing but bashing something prototype-quality with something like https://www.amazon.com/dp/B0928YT83C would be a matter of holding up the cyan-ist of the films up to one eye and the magenta-ist of the films to the other, and looking at some red and green things, concentrating on which eye the object is bright in.
RB 3GD glasses remove color to create a different image. I don't see how that would generalize to add color.
It wouldn't. It would subtract, but differently for each eye. Differential subtraction between two eyes is not addition, but it has certain characteristics in common with it.
If one removes red while the other removes green, then if something looks dark through the lens that blocks green, and looks bright in the one that doesn't block green (but blocks red), then one could tell that it is green. (and visa versa for something red)
Not that this would give the same subjective experience of a person w/o colorblindness seeing red vs seeing green, but I wouldn't be surprised if it allows one to pass r/g colorblindness tests fairly well?
Well that was eye opening
Im red green colorblind. When wearing my enchroma, some things I thought were brown are actually very red.
On the other hand green lights lose their green.
On a day to day basis I can functionally see red and green, but sometimes when a red or a green is next to a brown I cant distinguish them.
And versions of red that regular people might have a hard time distinguishing would be impossible for me to distinguish.
I have, yes. I can describe it sort of like this:
Imagine you're watching a black-and-white movie on an old TV, and it looks kind of washed out. You fiddle with the contrast, and suddenly the movie looks much crisper and with better contrast. You're not actually seeing more colors -- its just grayscale -- but you can optimize it to give you more depth of perception.
That's what EnChroma does. It doesn't actually make you see red, but it heightens the contrast to make it stand out more.
So, does it just look like different green? Like still green, but you can tell it apart from "true" green? Like wearing them could you pass a colorblind test even though you still can't see red?
i can see reds and greens, but very similar shades next to each other, i can't tell. i also can't see either color very well when it's a really small sample size (for example, the green under my power switch on my wireless mouse to show that it's on).
the way i think about it is that people who aren't colorblind have a maximum green value that is much higher than mine. the enchroma glasses, which i've tried, effectively make greens more green. i feel like it makes things inaccurately colored, but exaggerates colors enough to be able to better differentiate. i still can't see past my "maximum green" value though, which is why those marketing videos of people crying are total bullshit. it just looks like a very saturated instagram filter. it doesn't make me see colors i haven't seen before.
i didn't try a color blindness test with them but i should have. the best memory i have of using it is that it was fall time and the leaves on a bush in my yard were turning red, but i had no idea until i put the glasses on, and i could distinctly tell which leaves were turning and which weren't.
i liked them and wanted to keep them, but i couldnt justify the $220 price or whatever it was, so i returned them. i want to get another pair some day
That's what I imagined it to be, a slight improvement but obviously no miracle.
shameful marketing campaign
I've tried them, they kind of make reds pop a little more.
But imagine this. You put on a pair of pink tinted glasses to fix your vision. Ok great, but everything is tinted now. I don't find it pleasing at all. My normal is my normal, putting tinted glasses on me doesn't make things look better, it looks wrong.
And I want to see UV like our proto progenitors, enough of these little brown birds we can't tell apart.
The problem there isn't your receptors, which are UV sensitive. The problem is your lens, which filters it out. Remove the lens and you can see UV just fine.
Until you get eyeball cancer, that is. UV is mutagenic. That's why you filter it out.
People with cataracts get replacement lenses, and some exist that don't filter the UV. I think they're hard to get, what with the whole "eyeball cancer" thing. But if I get to my 70s and need replacement lenses (I do have a family history), I'm going to campaign to see if I can spend a couple of decades looking at the pretty birdies.
It's not just cancer right? UV light will damage those sensitive photoreceptor cells, so you would end up seeing less and less of anything over those couple of decades. Even non-UV blue light is hard for the eyes to deal with. Personally I'd just prefer wearing glasses that shift the UV to some other part of the spectrum.
Does this exist? I thought those kinds of non-linear effects only happen at extremely high fields (e.g. with a very fast pulsed laser to concentrate energy in time)
No, at least not without active electronics.
Fluorescence?
Are you eyes more sensitive to UV than the rest of your body?
I guess melanin absorbs UV in the skin, so this serves a similar purpose in the eye?
"Sensitivity to light" is the primary function of the eye.
I'm not sure about more sensitive, but I know the immune system (which cleans up a lot of pre-cancerous cells before they become a problem) is much less active in the eyeball, so it probably pays to have extra defense against cell damage.
This implies that birds don’t get eye cancer even though their lenses are different. I wonder what their protection is
At a guess: they don't live long enough for it to outweigh the benefits. While there are exceptions, wild birds often live only a few years.
I am really curious what the subjective experience of a color-blind person undergoing gene therapy gradually being able to perceive the difference between two colors that previously appeared the same.
See also https://en.wikipedia.org/wiki/What_Is_It_Like_to_Be_a_Bat%3F and https://en.wikipedia.org/wiki/Knowledge_argument
I guess the person would have no associations with the pure color red. Non-colorblind people have a life full of memories where red is associated with blood, lipstick, flushed cheeks, race cars, etc. plus the associated feelings.
I'm guessing they only really get the full effect of the therapy after they've lived without colorblindness for a while and made those associations.
Do you think there's a fundamental difference between getting a new color receptor and training yourself to recognize/differentiate more of the colors you already have the receptors to distinguish?
I think most people misunderstand color blindness in that most red-green colorblind can see red, it's just muted. I know what red looks like, but it needs to be plain old bright red.
protanopia: can't see red. protanomly: some red is visible.
The guy I worked with who was RG CB couldn't wire up stepper motors (typically use 4 wires, red green blue black), he couldn't tell the difference and had to use a multimeter.
Red is a great. I hope that it would be like the reaction videos of kids having their Cochlear implant turned on for the first time.
I'm not attempting to speculate, I'm just saying I wonder what the subjective experience would be like. I stopped trying to think what it would like to be a bat a while ago.
Small tangent, but I first learned of the "What is it like to be a bat?" question via the book The Mountain in the Sea by Ray Nayler. Really good book that deals with the ethical problems of emerging sentience in a species of octopus, while set to the backdrop of climate change, sentient AI and overfished oceans.
If it makes you feel better, red is overrated.
I think it's rated pretty appropriately.
I think whatever it is rated, by definition, is the appropriate rating.
Sure. Green though? It’s the best.
You know, I’ve never thought of this: does anyone with a type of color blindness consider their “favorite color” to be the ones they can’t distinguish?
Im the same way with my keratoconus. Tired of seeing two balls in tennis, two red lights at night, etc.