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From the file

Into the dark: The broken promise of a bionic eye | Imagine being blind but thanks to the wonders of technology being able to see again. How would you then feel if that sight was taken away?

Into the dark: The broken promise of a bionic eye

Into the dark: The broken promise of a bionic eye

Imagine being blind but thanks to the wonders of technology being able to see again. How would you then feel if that sight was taken away?

Date commissioned
21 February 2022

Date published
21 March 2022


Why this story?

Second Sight promised to transform the lives of people suffering from a rare eye disorder, retinitis pigmentosa. The company was able to partially restore the sight of some 350 people around the world using a retinal implant combined with some clever technology. Jeroen Perk from the Netherlands was one of the first patients to receive the implant, and remembers crying with emotion when his device was switched on. It allowed him to see his wife on their wedding day. Ross Doerr, who also had the implant, remembers seeing his wife for the first time in many years and making out clouds in the sky.

But in early 2020 Second Sight ran into financial trouble and was on the verge of bankruptcy. The company decided it would no longer support the technology which kept the retinal implants working. It meant that all those people living with Second Sight’s device faced the prospect of losing their sight if it stopped working. 

This story was first reported by two journalists working for IEEE Spectrum. What interested us was the extent to which this was a story about cutting edge technology and a company which over-promised and ultimately let down its patients. It also raises a fascinating question about medical ethics: who is responsible for maintaining an implant when a company decides it won’t or no longer can? Over the next few years biotechnology is likely to play a bigger role in our lives, potentially offering treatment for things we never imagined would be curable. But as Eliza Strickland of IEEE Spectrum points out we are at the beginning of a bionic cyborg age and we’re going to see some messy parts before it gets settled. Jasper Corbett, Editor

Transcript

Carly Peruccio [field producer]: Ok.

Nicky Woolf: So it’s like up here on the left? 

Carly Peruccio: Looks like it. 

Nicky Woolf, narrating: It’s freezing cold in Augusta, Maine. If you look at a map of the United States we’re in the far north east corner – closer to Quebec in Canada than we are to New York. 

All the houses we’ve gone past on the way here seem to be clad with the same white-painted planks. Between that, the snow-covered ground, and the bare trees all around, it feels like a black and white world.

Nicky Woolf, narrating: We’ve come here to meet this guy… 

Ross Doerr: You want to bring your gear in first?

Nicky Woolf, narrating: Ross Doerr.

Nicky Woolf: Nice to meet you.

Ross Doerr: Nice to meet you too. Are we shaking hands again?

Nicky Woolf: Yeah let’s shake hands again. 

Ross Doerr: OK, nice to meet you. 

Nicky Woolf, narrating: I stick my hand out again – I’ve forgotten, for a second, that Ross can’t actually see me. There is a briefly awkward moment until his wife steps in and guides my hand to his.

Nicky Woolf: Hi, how you doing.

Jan Doerr: Hi, I’m Jan. 

Nicky Woolf: How’re you doing ?

Ross Doerr: My wife, Jan. 

Nicky Woolf: Where do you want us? What a beautiful home.

Nicky Woolf, narrating: It really is beautiful. And warm, which is welcome. And it’s old – built in 1789, it’s pretty much as old as the United States. I’m telling you this because, at times during this interview, you might hear the kitchen’s wooden floorboards creaking in the background.

Nicky Woolf:  So I guess if we could start by having you just sort of introduce yourself, um, and, and, um, yeah, and then we’ll go from there.

Ross Doerr: Okay. My name is Ross Doerr. I live in Augusta, Maine, and I am a retired attorney.

Nicky Woolf: I guess we could start out with… tell us about your blindness and how it developed, and when, and that sort of thing.

Ross Doerr: When I was very young, my eyes were not as good as other kids in the school. The whole thing about my eyesight began… I believe I was in first grade and I was not doing the schoolwork that the teacher was putting up on the blackboard and I was chastised for that.

Nicky Woolf, narrating: First grade means Ross was then about six years old. 

Ross Doerr: And one day my mother was summoned to school. When you’re in first grade, and your mother shows up to talk to the teacher about you, it’s a death sentence when you’re a little kid.

Nicky Woolf: Yeah it’s not a good sign. 

Ross Doerr: And I was asked point blank, why aren’t you doing the work I put up on the blackboard? And I said, I can’t see it. And the teacher said, well, okay, stand up, walk up to the front of the room and tell me when you can see it. And I walked up, I got about two or three feet away from the blackboard and I say: “Oh, now I can see it.” And it got dead quiet. You could have heard a pin drop. And I guess my mother turned white as a sheet.

Nicky Woolf, narrating: His mum took him to the Mayo Clinic, a well-known medical care and research facility, where he was diagnosed with a genetic condition called retinitis pigmentosa.

Ross Doerr: Okay. You’re going to be losing your eyesight. You will go blind. And there’s nothing anybody can do about it. There is no treatment. There is no way to stop it. And that’s always followed up by the ever hopeful: “Well don’t lose hope. There’s all kinds of research going on all the time and you never know what’s coming.”

You hear it all the time. After hearing it for 20 or 30 years, it’s okay. You said the obligatory line. Now what’s next? And little by little, I went blind. As time went on, you know, I was not holding my breath on, on a miracle cure, or a good treatment to come up on it.

Nicky Woolf, narrating: But then, half a century later, one did. 

In 2018, during a routine cataract removal, Ross’s eye surgeon told him that his son – who was also an eye surgeon – was working with a tech company on an eye implant device called the Argus.

Ross Doerr: And he said, you might be a candidate for this, but you’d have to go to Boston and see my son. Now it’s up to you, you know, I’m not selling anything, I’m not getting anything out of this. But maybe you can talk to him.

Nicky Woolf, narrating: From Tortoise Studios, this is the Slow Newscast. I’m Nicky Woolf. 

In this episode, we’ll look at what the story of one company tells us about the promises and pitfalls of biotechnology. 

Nicky Woolf: And this on the table. This is the device here.

Ross Doerr: Yes it is.

Nicky Woolf, narrating: In 2002, a small California-based company called Second Sight Medical Products began clinical trials on a radical new device aimed at helping people like Ross see again. 

They named the retinal implant and the parts that went with it, the Argus, after a 100-eyed giant from Greek mythology. Their second-generation device, the Argus II, was approved for clinical use in the EU in 2011 and the US in 2013. Six years after its US approval, Ross underwent surgery in a hospital in Boston, and became an Argus II user. 

Nicky Woolf: So sort of walk me through it piece by piece. You’ve got these sort of Oakley sunglasses.

Ross Doerr: Yeah. 

Nicky Woolf: And you can see the camera in the middle of there. 

Ross Doerr: Yep. 

Nicky Woolf, narrating: There are several components to the Argus device. Ross has laid them out on the table to show me. 

Ross Doerr: This round hole here. That’s where the cable from the glasses gets plugged in. 

Nicky Woolf: And then there’s the sort of battery and general pack?

Ross Doerr: I’m going to turn it on. This is the visual processing unit.

Nicky Woolf, narrating: The real magic, though, is on the inside of Ross’s right eye. His condition had destroyed the light-sensing cells of the retina, at the back of the eyeball, that allow humans to see. The Argus implant, a tiny microchip consisting of a grid of electrode needles, was surgically placed onto Ross’s retina and connected to the optic nerve.

Ross Doerr: And I’m going to turn this on. You’re going to hear a couple of beeps.

Nicky Woolf, narrating: These glasses wirelessly transmit the signal from the camera to the chip, which translates them into electrical signals. Effectively, they perform the job that the cells used to do.

Ross Doerr: There we are. We just kicked in.

Nicky Woolf: And so tell me what you can see right now.

Ross Doerr: Now, I’m looking at something right now. Is that you?

Nicky Woolf: That’s me, hi [waves].

Ross Doerr: Oh yes. I detected [that].

Nicky Woolf: You can see that movement?

Ross Doerr: Yes. And it is so hard to articulate what is happening here. I’m seeing the flashing lights and as I move like this, what comes in and out of my visual field changes. 

Nicky Woolf, narrating: Ross was fully blind for 30 years. Today, he can see me. 

Ross Doerr: The surgery was done in April 2019 and I waited a month for the swelling to go down and all the rest of that. And I was activated, if you will, at the end of May, the following month. They programmed me and then they said: “Ok Ross, we’re going to turn it on.” And they turned it on. And I said: “where’s Jan? I want my wife.” And she walked in front of me and I said, “What was that?” And the doctor said: “That was your wife.”

Nicky Woolf: And you’d never seen…

Ross Doerr: I could still see a little bit when we got married, but I gotta tell you it was so nice to see her again.

Nicky Woolf: Wow.

Ross Doerr: Just flashing lights, but it meant the world. It really did.

Nicky Woolf, narrating: The field of what he can see is narrow – Ross says it’s like looking through a periscope. It’s also very limited in resolution.  There’s no colour or depth-perception.  

Nicky Woolf, narrating: To Ross, though, this felt like a miracle.

Ross Doerr: We went a year before last to see a lighthouse… stand on the ground and look at a lighthouse. You can see the outline and [there’s a] funny story connected with that. Jan told me we were about 75 feet away from the lighthouse and I said: “Fine. I think I’m looking at it.” And I started looking up. And then I saw something else that I wasn’t sure was the lighthouse. And I called Jan over. And I said: “What’s that? What am I looking at?” 

It’s a cloud. I could see a cloud. I hadn’t seen a cloud in years. That’s how much it means. A lot of people can’t understand that, you know, something that simple…

Jeroen Perk: When I was 11, I got diagnosed with retinitis pigmentosa.

Nicky Woolf, narrating: This is Jeroen Perk. He’s Dutch, in case you were wondering.

Jeroen Perk: Until my 15th [birthday] I could see very well. And after my 15th, it got worse and worse. In two years I lost 80 to 90 per cent of my vision. So it was a rough time, a hard time. And after that, the vision got worse and worse.

And I think when I was 35, 36, there was nothing left. Only a little bit dark and light. It was nothing. 

Nicky Woolf, narrating: When he was 11, Jeroen found out the same thing as Ross did – that he has the genetic condition retinitis pigmentosa, and that it was going to make him blind.

Nicky Woolf: What did that feel like when they first told you that diagnosis?

Jeroen Perk: In the beginning when I was 11 I don’t know what it was, but when I lost my vision, it was worse. I don’t want to be living in the dark. I got a little bit of a depression when I was 16. And then there was a moment, I think it was one or two nights, [when] I didn’t want to live anymore because you can’t do anything without sight. You can’t be who you want to be. 

Nicky Woolf, narrating: One Friday in 2013, he got an email from a colleague with a link to a news story about Second Sight. He began to imagine what it might be like to see again. 

Jeroen Perk: In the beginning. I was a little bit anxious because okay… “Do I want to have a little bit of vision back? Is it okay? My life is good.” And [for] two or three days I was thinking: “Must I do this?”

And I talked with a few people about it and I thought ok I must do it. I want to have that little bit of vision. So that was the decision. Okay. I want it. I’m going to do it. 

I sent a message to someone who I know at the eye hospital in Nijmegen. And I ask him: “Do you know the system?” And he gave me some information. And in that same email where there was the information about the Argus II system, there was one note in: there was a hospital in the Netherlands in Amsterdam which was looking for three patients to implant the Argus II systems.

And so they asked me, shall we bring you in contact? And I said, yes. And yeah, I had some talks with the eye hospital in Amsterdam, and I was one of the lucky bastards to get the system. One of the three patients in the Netherlands.

Nicky Woolf, narrating: A few weeks after the implant surgery, Jeroen’s device was switched on. 

Jeroen Perk: Camera goes on and there was my dog, I got a black dog Pedro, and he was on the white floor and I was scanning with the system and I [could] see the difference between the dog and the white ground. And it was so… it was so very amazing. So yeah. I was crying. It was emotional. 

Nicky Woolf, narrating: Jeroen became an ambassador for the company, speaking about the Argus system to the media and to potential patients. He used it when he went skiing…

Jeroen Perk: Yeah we went on the slopes and it happened so well and it was surprising. It was a miracle. 

And on the day he married his wife Nanda, in 2018.

Jeroen Perk: I think the first moment was the shape of her dress and, yeah, it was very nice. I never had seen that wedding dress from Nanda without the Argus. 

Nicky Woolf, narrating: It was science fiction authors like William Gibson, author of Neuromancer, who really brought the idea of “bionics” to the public consciousness. It has taken science decades to catch up with the imagination, but we are now pushing the boundaries of which bits of the human body and brain we can fix or even improve. And the development and use of bionic devices has become a multi billion dollar industry.   

Brain implants are now successfully being used to treat depression. Other companies like Elon Musk’s Neuralink are investigating how the brain could directly interact with a computer, or a bionic arm. 

But this industry sits at the nexus where altruistic science meets ambition, money, and, especially when Silicon Valley firms get involved, ego.

News clip 1: This is really fascinating stuff. What you are looking at right now is a paralysed man using his mind in order to create the words that appear…

News clip 2: It’s implanted like a pacemaker just underneath your collarbone. And these two wires are inserted directly into the brain…

News clip 3: We have here a wheelchair driven by the brain of the monkey...

Nicky Woolf, narrating: The hype around biotech is enormous and for years Second Sight was part of it. 

News clip 1: But a new camera implanted into people who see only darkness is bringing light into their lives…

News clip 2: 60 electrodes…

News clip 3: These patients completely blind before the surgery…

News clip 4: Surgically placed into the retinal tissue…

News clip 5: The real takeaway here is that we are eliminating human blindness…

Jeroen, in 2013, was one of the earliest patients to have the Argus device implanted. Six years later Ross would turn out to be one of the last. It was Ross’s stepson who first told him something was wrong in March 2020.

Ross Doerr: He went to college with a guy who works out in California, and he got an email from him. And his friend said: “The company that manufactured the Argus II. Isn’t that Second Sight Medical Products? isn’t that who your stepfather got his Argus II from?”

And the response was “Yes.” And he said: “Doesn’t Ross know they’re going out of business?”

And he walked in the front room and said: “Hey Ross, I just got this email from a friend of mine out west. He says Second Sight Medical Products is going out of business.”

Nicky Woolf, narrating: Looking for reassurance, he called his patient support technician at Second Sight.

Ross Doerr: And I said: “Ana, I just heard thus-and-so. Is this true?” And she said: “Well, funny thing you would call me Ross. We all just lost our jobs.”

First thing I said was: “What did Second Sight Medical Products tell you to relate to those of us with the implant.” She said: “We asked them that and they said anybody who has any questions, refer them to our website. That was it.” And I was thunderstruck. I said: “You’re kidding.” She says: “No, I’m not. And I’m sorry, you had to learn about it this way.” 

Nicky Woolf, narrating: Ross, and Jeroen, and the hundreds of other people with the Argus II device, suddenly found themselves with obsolete and unsupported gadgets in their eyes. Although they might still work there was no longer any assurance of repairs or replacements in the future.  And no one could tell them when they might be plunged back into the dark.  

Ross Doerr: I use it a lot more sparingly now, because if it wears out or breaks, you’re dead. You’re dead in the water. you’re stuck. You have about half a million dollars worth of technology in your eye. That is completely useless. Thank you, Second Sight. 

Nicky Woolf, narrating: Jeroan’s in the same boat.

Nicky Woolf: What happens now with the implant when you run out of spare parts. What happens then?

Jeroen Perk: Dancing in the dark [long silence, then laughs].

Eliza Strickland: I think Second Sight is really a sad story and a cautionary tale. 

Nicky Woolf, narrating: This is Eliza.

Eliza Strickland: I’m Eliza Strickland and I’m a senior editor at the technology publication. IEEE Spectrum.

Nicky Woolf, narrating: It was Eliza along with investigative journalist, Mark Harris, who broke the story that Second Sight had gone bust.

Eliza Strickland: I have been following this company since about 2011. That’s when the company had just gotten approval for its retinal implant in Europe, and it was working towards approval in the US and I wrote a story that was really kind of a ‘gee whizz’ story. Like: “Isn’t this technology amazing? They’re bringing eyesight to the blind.” But then in 2020, they ran out of money and basically weren’t able to hold up their end of the bargain at that point.

Nicky Woolf, narrating: The company went into freefall.

Eliza Strickland: They sold everything at auction, they sold their laptops, they sold their equipment. They sold their shelving units. So they had nothing left to help people with. 

Nicky Woolf: I guess this might be a good time to get into the business. story. What went wrong? 

Eliza Strickland: Well, it’s a combination of factors. And that’s really one of the questions that motivated our reporting when we started out. Was it that they had a bad business plan? Did the technology not work well enough? Were their regulations too oppressive? And it seemed to be a combination of those three things.

Nicky Woolf, narrating: On top of that, the pandemic had struck, drying up a lot of grant funding across the medical world for anything non-Covid related. Eliza calls it bad luck. 

Eliza Strickland: The people who started the company were definitely coming from the science side. These were MDs and engineers who were really trying to make a revolutionary medical device for people. And I do believe they had the best of intentions and really hoped to help people. 

I think they weren’t able to predict how the money issues would play out. One of the co-founders told me that the device was reimbursed at the cost of $150,000, but it probably should have been reimbursed at three or four or five times that amount to actually make a go of it. But at the time it seemed astronomical that they were getting $150,000 per device. So it didn’t seem like they could even ask for more.

Second Sight Medical Products: Thank you for calling Second Sight Medical Products. We are unable to return your call immediately. If you are a current Argus II user or an implanting centre…

Please leave your message after the tone. 

Nicky Woolf: Hi my name’s Nicky Woolf, I’m a reporter with…

Second Sight Medical Products: Did you say your last name is W O O L F? 

Nicky Woolf: That’s correct yep.

Second Sight Medical Products: You said a reporter with where?

Nicky Woolf: Tortoise Media. 

Nicky Woolf, narrating: Not unexpectedly, we couldn’t get anyone from Second Sight to speak to us, and repeated attempts to contact them went unanswered. The company has gone through several leadership changes since its crisis, and none of the previous CEOS or the acting current CEO responded to our interview requests. 

At the time it went under scientists at Second Sight were trialling a new technology called the Orion, that would use a brain implant, rather than an ocular implant, to transmit vision. Another biotech firm, Nano Precision Medical, is now in the process of buying Second Sight. But there isn’t much left to buy – apart from the Intellectual property on the Orion and the Argus. 

The CEO of Nano Precision Medical did agree to speak to Eliza for her article with IEEE.  

Eliza Strickland: And he said the right things. He said that he wants to help the patients. He doesn’t want to repeat the mistakes of the past, but it’s really unclear what he could do to help people. Second Sight has a very limited inventory of external spare parts of glasses and video processing units. They’re not making any more. They don’t have the equipment or the staff to make any more. They can’t repair or replace the retinal implants. Basically what they have right now is that limited inventory of spare parts, a little bit of institutional knowledge left, and this great IP with the brain implant – though it’s not clear if that’s going to be developed. 

New England Eye Center: Thank you for calling the New England Eye Center at Tufts Medical Center…

Second automated response: We’ll give your call all the time you need …

Third automated response: If this is a medical emergency please hang up and dial 911…

Nicky Woolf, narrating: It’s not just the company which we found hard to get hold of. Lots of the scientists and surgeons who were quoted in the media in the early 2010s as the first to provide the Argus II implants now seem very reluctant to speak. One of the doctors did tell us he was working on a way of keeping the Argus system going, but he didn’t want to be interviewed. 

In the process of reporting this story, the thing that’s really stuck with me is how cruel it feels, to have been given sight, and then to have it taken away. 

There is also a wider point that’s been bugging me. Is it a good idea, is it sensible for this kind of vital medical device to be at the whim of the free market? 

Margaret McLean: Because on the one hand, you may have stockholders – publicly held companies have stockholders to whom you have an obligation as a business to return share on and profit. On the other hand, you have stakeholders who are the patients who are benefiting from this technology. And at times those two things pull in different directions.

Nicky Woolf, narrating: Margaret McLean is a senior lecturer in bioethics at Santa Clara University. She shares my concern that a fully private healthcare company might not be the best way to go, especially when it comes to experimental treatments. 

Margaret McLean: If it’s solely in the private sphere, there’s a door between the public and what’s going on in that clinical trial. There are walls and a door. What public funding gives you is a window into that clinical trial. You know, the Covid-19 vaccines are the poster vaccine of the really great synergy that can be achieved by public private funding and public private partnerships.

Nicky Woolf, narrating:Second Sight was the sole provider of the Argus II. Doesn’t that mean it had a responsibility to its users?

Margaret McLean: So it’s one thing if a pharmaceutical company decides: “You know what, we’re not going to make ibuprofen anymore.” Okay. There are plenty of companies who make ibuprofen. I’m not worried. But if you make the only thing that a particular group of patients relies on. That’s a different story. 

And I would guess that, most of us, if we had some assistive device implanted and it went wrong – that we would assume that we could go back and get that fixed.

Nicky Woolf, narrating: For Margaret the most important thing is that patients should be able to rely on their medical providers to act in their best interests.

Margaret McLean: And it’s the case in clinical trials. It’s the case with cutting edge biotech and it’s the case in everyday medicine. The whole darn thing is predicated on trust.

Nicky Woolf, narrating: I asked Eliza what she thinks lies ahead with this kind of technology.  

Eliza Strickland: We’re at the beginning of this sort of bionic cyborg age, and we’re going to see, we’re going to see some messy parts before it gets settled. You don’t want to stifle innovation. No one wants to stifle innovation, but at the same time there needs to be some kind of plan in place for these kinds of people.

Ross Doerr: Since i’ve retired one of the things I’ve done is I’ve started writing murder mysteries. 

Nicky Woolf: Oh, amazing! Can I read some of them?

Ross Doerr: Well they haven’t gotten published yet! 

Nicky Woolf, narrating: Ross has a good sense of humour and is pretty philosophical about everything that’s happened. But he is also understandably angry. 

Ross Doerr: They made a promise and then they not only dumped me and didn’t tell me, but didn’t have the guts to contact me after the fact.

Nicky Woolf, narrating: He’s actually in a particularly bad situation right now. He needs an MRI scan to check for possible cancer – but he has been unable to contact anyone at Second Sight to find out if the procedure would be safe with the implant. It took him four months and a concerted campaign of phone calls and constant social media posts to even get an answer from the company about whether he could safely get a routine dental x-ray.

Ross Doerr: “I wasn’t born last night,” you know. “Don’t keep me in the dark about stuff. But you are. You’re keeping me in the dark. Do something.”

Nicky Woolf: Literally right? I mean…

Ross Doerr: Yeah. Actions speak louder than words. If you say you’re gonna do something, do it.

Nicky Woolf, narrating: Jeroen, who isn’t facing the kind of dire choice Ross is, is more relaxed.

Jeroen Perk: I don’t want to talk about mistakes but I think the most sense of frustration is with patients and a lot of surgeons. There is no information about “why did we stop then, what is happening now” and I think that’s the only mistake. 

Nicky Woolf, narrating: A few months after he’d discovered Second Sight had gone bust, Jeroen’s Argus actually broke.

Jeroen Perk: It was in November when I used the system, in November 2020. And I was on this holiday weekend and I was wearing the system. And the system fell on the ground and it was broken. And at that moment there was no support anymore in Europe for the system for Second Sight. So I was thinking: “Ah, now my system is broken. What now? Okay. Must I live in the dark again?” And on that Monday or Tuesday after the weekend, I thought: “Okay, I want it back. And I want to fight for it.”

Nicky Woolf, narrating: He found a way to jerry-rig fix his device, and got it working again. And since then he’s been buying up potential spare parts online.

Jeroen Perk: You know the song by the Beastie Boys? It’s not even “you fight for your right”, but “you fight for your light”. And that was what happened. I want to fight for the light. I want it back – to have that system.

Nicky Woolf: This hasn’t put you off using those technologies? You want to just keep going, harness progress as much as possible?

Jeroen Perk: Yeah, but that’s my style of living, Nicky [laughs]. I’m just positive and I believe in the future chips and I want to have that progression because I know how I lived that nine years. I had big dreams and it was going very well. We did a lot of trips. I married my wife. I think it was the most wonderful time in my life, the nine years. So when I get that offer, I think tomorrow or the day after, I don’t have to think twice. I’d do it.

Nicky Woolf: Ross, thank you so much both of you.

Ross Doerr: Thank you for listening to me ramble. 

Carly Peruccio: Sorry, it’s always the packing. So many cables! 

Nicky Woolf, narrating: On the way back from interviewing Ross, my field producer Carly said something I thought was very insightful. That, to her, how Ross feels might be about much more than how he personally was treated – it’s more about what this has all meant for the whole field, the industry, and most especially, for others who the device might have helped. When I listened back to the interview, I knew exactly what she meant.

Ross Doerr: When I went through the surgery, the cost of the implant, the cost of the surgical team, the whole thing – all of the medications; you’re talking top-notch surgeons doing cutting edge surgery, the whole bit – I couldn’t afford that. My insurance company did, plus Medicare. After the surgery, when we got the first breakdown of the costs: $497,000. 

Nicky Woolf: Wow.

Ross Doerr: Just shy of half a million dollars. 

Nicky Woolf: That’s a flabbergasting amount of money. 

Ross Doerr: Now that’s a big chunk of change that the insurance company parted with. The next time somebody goes to the insurance industry and says I want this because it’ll give me my eyesight back or it’ll give me my hearing back. How do you think they’re going to react?

Nicky Woolf: Right. 

Ross Doerr: You know? 

Nicky Woolf, narrating: I think Carly’s right. I think the way Ross feels is about more than just his own experience. He’s sad that something that had the potential to be a huge breakthrough has come to nothing, at least for this company. 

Ross Doerr: My view of the whole darn thing is, the next time something like this crops up, who’s going to trust the company, doing it? You have just dumped 350 people worldwide. Who trusted you. Now, who’s going to trust you? Whether it’s Second Sight Medical Products or anybody else you have destroyed trust in this field. How are you going to rebuild it?

Nicky Woolf, narrating: He’s angry because of what the debacle means for other people. Other patients, current and future. There’s a nobility in that, I think.

Ross Doerr: I think, for the future, when it comes to this kind of biomedical prosthetic, there needs to be some sort of an international understanding where if you promise people something like this, you’re going to support them, you actually have to do it.

You can’t just say: “Gee, we’re not making the profit we used to make. Sorry.” And walk away. They dumped people all over the world and I’m sorry but that’s unforgivable. You just don’t do that. 

Nicky Woolf, narrating: Jeroen gets directly to the point, in a way that I’ve come to understand is characteristic of him.

Jeroen Perk: It’s a little bit of risk you’re taking, but one company must be the pioneer, but also one of the patients must be the bio… pioneer. So yeah. 

Nicky Woolf: The bionic pioneer.

Jeroen Perk: I want to be a bionic pioneer, I think. Yeah, that’s right. 

Nicky Woolf, narrating: Ross, in our interview, demurred when I asked if he considered himself a pioneer. But I think he is one nonetheless. I think they both are. He and Jeroen were part of a grand adventure, as well as an experiment. Something that was truly meaningful, for them and it felt for the future of mankind. That’s been taken from them. It’s a complicated set of feelings.

Ross Doerr: One of the other things I knew I was getting into was: “This is experimental. It’s the very first version. I might not live long enough to see the final version, but it’s a start.”

And if people like me didn’t step forward and say, yes, I’ll let you put that in my eye, how are you going to get real information on what does and doesn’t work?

Nicky Woolf, narrating: I think I’ve identified the vibe I was trying to wrap my head around as I processed my conversation with Ross. The combination of the intense joy and pride at being part of this pioneering cohort – and then the bone-deep sorrow of being one of the last of them. 

The feeling of having come from the darkness into the light – and then not knowing when you’ll return to that darkness again. It would be easy to take all of this as a lesson in hubris – but I think that’s not right either. There’s a lot of hope here. People like Second Sight’s patients are still trailblazers, whatever happened to the company. 

We don’t stop exploring just because one trail is a dead end – we press on, explore more. That’s what progress is. The lessons of Second Sight will be learned, and one day – possibly soon – a new team will pick up from where they left off. The road won’t always be smooth. But we won’t slip back into darkness forever.

Actually I’ll let Ross have the last word on this. 

Ross Doerr: There’s an old saying. I don’t know who wrote it, but it goes: “The religious man said if God would have meant man to fly have given him wings. The scientist said God gave man the intelligence to make his own wings. And the adventurer said: ‘I have wings. Show me the way.’” Here’s my wing. I was willing to do that. Lots of other people weren’t. But once again, I just have to keep going back to saying: “It’s a start. It’s a beginning. It’s the building block.” I mean the Wright brothers built a fixed wing aircraft, the first powered airplane. They started somewhere. I mean, now we’re flying to the moon. We’re sending robots to Mars. You had to start somewhere.

This story was reported by me, Nicky Woolf, and produced by Hannah Varrall. The sound design was by Karla Patella, and field producing by Carly Peruccio. The editors were Jasper Corbett and Basia Cummings.

How we got here

Our first instinct on hearing this story was to ask what went wrong at the company. Was there fraud or misconduct? Did someone in the C-suite take the money and run, leaving staff and patients in the lurch? While we encountered a lot of silence when trying to speak to Second Sight, it became clear that there was no wrongdoing apart from bad management. And unfortunately that tells us this won’t be a one-off – other companies will suffer the same fate, meaning other patients will experience the hell of knowing the device that is helping them out, alleviating their symptoms or providing a better quality of life, may be taken away from them. So how can this industry be regulated in a way that ensures these companies act transparently and ethically towards their patients, in a way that still encourages innovation? Hannah Varrall, Producer


Further reading


Past reporting

Engineering the human body

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