Through an Implant Darkly
February 15, 2022 2:03 PM   Subscribe

Argus implants promised vision to a small group of patients, but now that the company has gone silent, no one knows what to do. At least one patient resorted to cannibalizing spare parts, but things clearly can't last.
posted by Alensin (20 comments total) 17 users marked this as a favorite
 
Sounds to me like the company has forfeited its patent rights, which should be immediately released into the public domain so we can make more
posted by JDHarper at 2:18 PM on February 15, 2022 [19 favorites]


The patents aren't much use if you don't have source and a toolchain that generates reproducible builds. (And, increasingly in modernity, a signing key.)

We're going to need some sort of legislation in the world that requires toolchains and code be tested and placed in escrow to protect device owners from abandonment, especially for medical devices.
posted by mhoye at 2:29 PM on February 15, 2022 [41 favorites]


This is the cyberpunk future we were promised.
posted by Leeway at 2:44 PM on February 15, 2022 [27 favorites]


This is definitely the cyberpunk future we were promised. I feel like this has to have been a story I read a version of in the SF digests back in the eighties.
posted by egypturnash at 2:51 PM on February 15, 2022 [15 favorites]


This is such nightmare fuel. I think the most telling thing is from the statement from the company they are merging with, "[We are ] committed to developing new technologies to treat the broadest population of sight-impaired individuals." Emphasis mine. Always money for the new and shiny thing, never money to maintain what is in the world.
posted by crossswords at 3:00 PM on February 15, 2022 [16 favorites]


SPeaking personally, I‘ve always been skeptical of devices like this, perhaps because I was born blind and thus don’t really know what I’m missing. But I’m profoundly upset for people who got them at great expense and are now being left to deal with the aftermath. I would definitely not agree to be part of a trial run by this company if asked.
posted by Alensin at 3:18 PM on February 15, 2022 [27 favorites]


.
posted by mbo at 3:38 PM on February 15, 2022


My husband's opthalmologist floated this to him several years ago after it got Health Canada approval owing to his eligibility and he noped out at the first suggestion on the gut feeling that it definitely had the feel of able-bodied tech bros grifting on the medical model of disability.

None of that is to say that this isn't a valid area for research and trials, but it needs to be considered in the context of a staggering lack of regulatory guardrails.

But this, from the article, is particularly fucked:

Doerr’s doctor scheduled an MRI scan to rule out a brain-stem tumor. But because an MRI’s intense magnetic fields can interact with the Argus II, MRI providers are instructed to contact Second Sight before performing any scans—and Second Sight wasn’t picking up the phone. Doerr eventually got a CT scan instead, which found nothing. “I still don’t know if I have a brain-stem tumor or not,” he tells Spectrum.
posted by mandolin conspiracy at 3:44 PM on February 15, 2022 [14 favorites]


Didn’t Stephen Hawking have a similar issue, where the system that allowed him to speak required custom work to maintain? Am I imagining this?

The only silver lining moment is that there are a lot more people that tinker with tech hardware as a hobby that means there could, theoretically, be a wider pool of people to support this kind of biotech. But between this and the recent heart devices that have problems and yet are difficult to remove, it makes the promise of cybernetic tech MUCH scarier.
posted by [insert clever name here] at 4:03 PM on February 15, 2022


Didn’t Stephen Hawking have a similar issue, where the system that allowed him to speak required custom work to maintain? Am I imagining this?

Absolutely correct!

It required some bespoke work to maintain. The reason Hawking kept it was that he said it had become his distinctive voice, and he was attached to it.

At the same time, Hawking had the resources and connections to maintain it on that basis -- average people don't have the co-founder of Intel approaching them with one-off upgrade, maintenance, and development offers.
posted by mandolin conspiracy at 4:16 PM on February 15, 2022 [10 favorites]


It's a conundrum: you have to test new systems on human subjects to see if they work (and there's a wide spectrum between "doesn't work at all" and "works great for everyone"). The first people to get it are unlikely to see much benefit, compared to those who wait. But if no one steps up to be first, it can never be improved down the line. Early adopting is one thing when it's a phone, but when it's your brain? It sure doesn't seem like there was enough testing or enough oversight of sales once it was approved. The reality didn't live up to the hype for many (most?) patients, and that's not good for a half-million-dollar-each product/service.

I feel for the people abandoned by the tech. Tech needs to be sold as tech, everybody who got these should have had to sign off on knowing they were either going to fail or be superceded by something better within a few years. Capitalism sucks.
posted by rikschell at 4:47 PM on February 15, 2022 [4 favorites]


"We gave up on our old tech and left our old patients in the lurch, but please sign up for our new study, and this time we're putting the implant in your brain" doesn't seem like a great pitch.

Related:
For three years after her operation, Leggett lived happily with her device. But in 2013 her neurologist gave her some bad news. NeuroVista had run out of funding and ceased operations. Leggett’s neural device would have to come out.
posted by BungaDunga at 4:56 PM on February 15, 2022 [3 favorites]


A single eye cost half a million dollars, Second Sight lost money on each one, and now that the company is bankrupt the folks who know hide like cowards behind NDA's. Infuriating, primarily because I don't see any particular avenue for any of the knowledge or IP to be used to continue this avenue of potential medical treatment.
posted by zenon at 5:01 PM on February 15, 2022 [2 favorites]


I don't see any particular avenue for any of the knowledge or IP to be used to continue this avenue of potential medical treatment
Well, given a corporation has snapped up the remains of Second Sight and confirmed it won't be pursuing development or supporting current users, you're obviously correct. But hey, at least the IP is in the safe hands of a corporation where it won't be able to be used by any other entity to help people without making a profit, right?

Patents should be like trademarks - use 'em or lose 'em.
posted by dg at 5:28 PM on February 15, 2022 [10 favorites]


Given that for over thirty years, my passions have relied on digital technology in order to realize them, I have dealt with loads of frustration and irritation in regards to companies canceling products, which then become obsolete, bugs, more bugs, computers and OSs getting updated and then breaking other hardware, crappy support, etc and so on. The thought of invasive medical technology would scare the hell out me. I know there are a lot of people who could benefit from these kinds of innovations, but companies driven by profit are not the saviors we hope for. Magical blood testing machines anyone?
posted by njohnson23 at 5:29 PM on February 15, 2022 [4 favorites]


The recent movie Big Bug features a cameo of a guy whose eyes were "repossessed" because he couldn't make the payments.
posted by CheeseDigestsAll at 8:23 PM on February 15, 2022 [7 favorites]


I read about this right after seeing the dystopian sci-fi movie BIG BUG, where something very similar happens to a blind character.

-EDIT- whoops! Looks like CheeseDigestsAll beat me to it
posted by UltraMorgnus at 5:00 AM on February 16, 2022 [1 favorite]


An important part of this story is that the Argus product just didn't work very well. Maybe this is a failed tech and liberating the patents wouldn't help. But it's 100% unethical to leave a bunch of folks with the implant in the lurch. The merger with NPM confounds things, there must be something left of value at Second Sight even if NPM isn't pursuing vision work. It's puzzling the NPM leadership "doesn’t yet know what contractual obligations the combined company will have to Argus and Orion patients". In a just world caring for patients should be a primary legal obligation to the patients of the original and merged companies.

I've faced a similar conundrum for treating my sleep apnea. One new treatment ("Inspire") is to implant an electrode in the tongue with a wire threaded through the neck down to a pacemaker-battery-like thing near your collarbone. The electrode stimulates the tongue and prevents your airway being blocked. Sounds kinda neat, and reports are it works.

Except... once the thing is implanted it's very difficult to remove because the body grows around the wire. It's also a major problem if you need an MRI, just like the patient Doerr in this story about Argus. And while it seems to be working it feels awfully experimental.

My doctor discussed it with me along with all the other treatment options. But her strong advice, which I took, was to try a CPAP machine first. Because it's a simple non-invasive treatment and while it's a nuisance every night, it's not irreversable. CPAP turns out to work great for me. I made the right choice.
posted by Nelson at 7:31 AM on February 16, 2022 [8 favorites]


As the father of a deaf child with cochlear implants, this is the sort of thing that terrifies me. Unlike the retinal implants of the story, which were used by a few dozen people, tens of thousands of people in the US have cochlear implants right now.

CIs use an electrode and coil implanted in the cochlea of the ear and under the skin of the head, coupled with an external receiver that looks more or less like a hearing aid. The internal elements require extensive, and not always successful surgery in order to implant them, and the results of surgery are highly variable, ranging from a reasonable approximation of typical hearing to painful and incomprehensible stimuli that has no benefit at all (approximately half of all children who receive CIs end up not using them by the time they're 18.)

The external receivers use several consumable parts: rechargeable batteries that eventually fail, mic covers that get clogged with dust, and magnetic coils which interface with the coil beneath the skin, whose wires suffer constant wear and tear, not to mention the main units which are subject to occasional failure and periodic software updates and maintenance. Right now there are 3 manufacturers in the US, and none of their products are interoperable, and none of the software that drives the receivers is open source (to my knowledge.)

Choosing to have a CI for your baby is a nerve-wracking and ethically complicated process for a lot of reasons, but one thing that was definitely on my mind was the chance that the company that makes the product might fail. Should his equipment supplier go out of business, there would be a period of months or years where spare parts might be available, but soon the only alternative would be to have a new round of surgery in order to implant new compatible electrodes from a rival company, which would then be subject to the same threat of failure. Mandating interoperability would be one cushion against this threat. Another would be some sort of federal "cyborg insurance" that would pick up manufacturing and service if a company goes out of business. To my knowledge, there are so safety nets of any kind right now.

Cybernetics are highly romanticized in our culture, but the "sexy" cybernetics that get all the attention are actually are expensive and complex tools used by highly marginalized groups; Jillian Weise has written very thoughtfully about this. They are nearly always designed by able-bodied people with good intentions and a shocking lack of imagination and often bigotry towards the people they are designed to help. Layered on top of that is the profit motive, which is considerable in the CI world. The overall cost of my son's devices and surgery is easily half a million dollars all told, and this creates an additional loathsome pressure on the medical community to default to cochlear implants for every child, regardless of circumstance.

For all these reasons, among many others, I am raising my son with American Sign Language as well as English. Its a complete technology that he will always have access to, that he can use and modify as he sees fit, with a robust user-base and low cost of implementation. His CIs will never be his alone. But his language will always live inside him.
posted by Playdoughnails at 10:57 AM on February 16, 2022 [16 favorites]


I met one of the Argus patients and was present at the moment when Second Sight technicians switched it on. The enthusiasm and excitement was extraordinary, and although the patient's expectations were high - too high - he was still blown away by the crude black-and-white image (the array is only 60x10 pixels, so even in the best cases the image is just grid of light and dark blocks that give a basic impression of the world in front of the camera). But still: this blind man suddenly has 'some' sight. it was an emotional and hopeful moment.

For him, after the first few weeks of 'training', the implant seemed genuinely useful. It added a layer of basic visual information to the sound and tactile clues that built his image of the world. Now the tech is defunct I don't know whether he regrets the decision, but he knew the risks going in. I have great respect for the researchers who tried to make this work (and perhaps the next generation of implant will be more successful for more people).

Perhaps regulation can create a system to protect the recipients of orphan devices, and certainly patients should be made fully aware of all the risks - medical and otherwise.
posted by leebree at 12:38 PM on February 16, 2022 [3 favorites]


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