Sorry, we left an implant in your brain

Summary

Podcast Summary: "Sorry, We Left an Implant in Your Brain"
Unexplainable, Hosted by Julia Longoria
Release Date: April 30, 2025

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Introduction

In the April 30, 2025 episode of Unexplainable, hosted by Julia Longoria, the focus is on a haunting issue within the realm of neurotechnology: the abandonment of life-changing brain implants. This episode delves deep into the personal stories of individuals whose hope for a better life was shattered when the companies behind their medical devices went out of business, leaving them with unsupported technology implanted in their bodies.

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Jen French's Tragic Accident and Journey

The episode opens with Jen French, who was working in the burgeoning consumer tech industry during the dot-com era of the late 1990s. On a memorable full moon night, Jen experienced a severe accident while snowboarding, resulting in a devastating spinal cord injury at the base of her neck. This injury left her paralyzed from the neck down, unable to perform even the simplest daily tasks.

Jen French (03:20):
“Um, well, it, it didn't, to be honest with you. I mean, I was in denial for a while.”

Struggling with her new reality, Jen sought experimental treatments and found hope in a clinical trial led by scientists at Case Western Reserve University in Cleveland. The trial involved implanting electrodes in her back and major muscle groups, aiming to restore movement through electrical stimulation.

Jen French (05:15):
“The first procedure was seven and a half hours. I just remember the room being full of people because it was an experimental surgery.”

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The Promise of Neurocontrol's Technology

The implanted electrodes acted as artificial nerves, bypassing the damaged spinal cord to stimulate muscle contractions. This breakthrough allowed Jen to regain partial mobility, lifting her spirits and offering a glimpse of a future where paralysis could be overcome.

Jen French (06:26):
“This is so cool, right? I mean, she's being able to stand up and look down, and all you see are your legs. And you don't see these big braces around it or any other big supports. It's just you standing.”

The company behind this technology, Neurocontrol, had plans to commercialize the device, potentially offering a permanent cure for paralysis. Encouraged by her initial success, Jen moved to Cleveland to continue her treatment and recovery.

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The Devastating Collapse of Neurocontrol

However, in 2001, just two years after Jen's implant, she received heartbreaking news at a conference held by the National Institutes of Health. A lead researcher informed her that Neurocontrol had gone out of business, dashing any hopes for further support or commercialization of the device.

Jen French (08:22):
“Neurocontrol went out of business. The whole aspirations of this being commercialized went down the tubes. It hit me like a brick.”

This abrupt abandonment left Jen and approximately 350 other patients in limbo, reliant on the now-defunct company's support to maintain their life-altering devices. Despite the initial success, without Neurocontrol, the implants could not be sustained, forcing patients to face the grim possibility of losing their regained mobility.

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Other Stories of Abandoned Neuro Implants

The episode broadens its scope by introducing two more individuals affected by similar circumstances:

1. Rita Leggett:
   Suffering from epilepsy, Rita benefited from a brain implant that could predict impending seizures, granting her the ability to take preventive measures. This innovation transformed her life, enabling her to marry and lead a more fulfilling existence. Tragically, when the startup behind her device failed, Rita was left with an unusable implant as the proprietary battery ceased production.

   Liam Drew (12:14):
   “It's like getting a brilliant device that saves your life and then losing it because the battery company went under.”

2. Markus Bull:
   An electrical engineer from Germany, Markus used an implanted nerve stimulator to combat debilitating cluster headaches. The device proved highly effective, but with the company handling it going bankrupt, Markus had to take matters into his own hands, sourcing rare batteries from abroad to keep his implant functional.

   Liam Drew (18:03):
   “He has been maintaining his own device, sourcing parts from the US and China to replace the batteries.”

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Exploring the Phenomenon of Device Abandonment

Freelance science journalist and former academic neuroscientist Liam Drew brings critical insight into this pervasive issue. In his article "Abandoned" published in Nature magazine, Drew highlights how economically driven challenges lead to the abandonment of effective neurotechnologies.

Liam Drew (12:07):
“I mean, it's often the battery that's the problem, something simple. Companies are coming up with proprietary batteries, and when the company goes, all support for that battery system goes with it.”

He underscores the systemic issues that prevent these technologies from sustaining long-term support, emphasizing that while the medical advancements are revolutionary, their commercialization often falls short due to financial constraints.

Liam Drew (21:16):
“Everyone wants that support to be in place. But I think if you're a business person dealing with a startup where margins are small and they hear those plans and they just think that's expensive...”

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Potential Solutions and Ongoing Challenges

The conversation shifts towards exploring solutions to prevent such abandonment. Drew and Longoria discuss ideas like escrow accounts, non-profit organizations, and legislative measures to ensure that once a device is implanted, it remains supported regardless of the company's financial status.

Liam Drew (24:04):
“Can't they put money in an escrow account? Can they set up a sort of non-profit parallel organization? Can they take out insurance?”

Despite these suggestions, Drew expresses skepticism about their feasibility, noting that startups may find these additional financial burdens prohibitive without external mandates.

Liam Drew (22:05):
“But it feels like your reporting shows, like the economics don't always work out, even if it's a technology that works.”

The complexity of maintaining and updating neurotechnologies in a rapidly evolving market further exacerbates the issue, making it difficult for any single solution to address all challenges comprehensively.

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Jen French's Resilience and Advocacy

Despite the setbacks, Jen French remains steadfast in her resilience and dedication to advancing neurotechnology. She leads a nonprofit, Neurotech Network, focusing on education and advocacy, driven by her experiences and the desire to prevent others from facing similar abandonment.

Jen French (31:13):
“No way in hell. No way. It's been an incredible journey. I wouldn't have taken this career path if I didn't get implanted.”

Her unwavering commitment underscores the human spirit's capacity to turn personal tragedy into a force for positive change, advocating for better support systems for those reliant on life-changing medical devices.

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Conclusion: The Need for a Unified Approach

Unexplainable closes by highlighting the collective acknowledgment of the problem within the neurotechnology community. Professionals, patients, and researchers agree on the urgent need to address device abandonment, yet solutions remain elusive. The episode calls for a unified approach, combining innovation, policy, and advocacy to ensure that technological breakthroughs translate into sustainable, long-term benefits for all users.

Jen French (29:20):
“I have to give this back, you know, and I don't want to get too attached to it, even though I know I am.”

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Additional Resources

Listeners interested in exploring this critical issue further can read Liam Drew's article "Abandoned" in Nature magazine and visit the Unexplainable episode description for more information.

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Produced by: Julia Longoria
Editing: Meredith Hoddinott
Mixing and Sound Design: Christian Ayala
Fact Checking: Melissa Hirsch
Music: Noam Hassenfeld
Editorial Director: Jorge Just
Legal: Byrd Pinkerton

For more insights and to support Unexplainable, visit unexplainableox.com or join the Vox membership program at vox.com/members.

Transcript

[Narrator]

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[Julia Longoria]

Our story begins.

[Jen French]

In the late 90s March of 1998, the dot com era, when the Internet was coming about. It was really an exciting time to be in consumer technology.

[Liam Drew]

You've got mail.

[Julia Longoria]

Jen French was working for a consumer tech business.

[Jen French]

It was laptops and printers, a very young company.

[Julia Longoria]

And her company was about to go public.

[Jen French]

It was kind of a work hard, play hard type of lifestyle.

[Julia Longoria]

She worked hard to launch the company's ipo and then we rented a house.

[Jen French]

On the side of a ski mountain in New England.

[Julia Longoria]

She played hard. And for Jen, playing hard really meant.

[Jen French]

Playing snowboard during the day and play poker at night and have lots of fun.

[Julia Longoria]

She's big on games and sports. She loves to sail, loves to snowboard.

[Jen French]

That weekend there was a full moon. And if you've ever snowboarded under a full moon, it's beautiful. Like the ski slopes just glow. So a dozen of us went down for what's called the midnight run and 11 made it to the bottom and I didn't. I hit a patch of ice, went down a 40 foot embankment and hit a bunch of trees and ended up face down in the snow. I don't remember much from that night. I have little spots of memory looking up at the full moon and crying for help and being really cold. Being in an emergency vehicle covered in thermo blankets, shivering, not being able to move. Waking up in the emergency room when they had put me in traction, it's when they try to pop your spinal cord back into place. They came into a room and explained to me that I have a spinal cord injury and that I would be paralyzed for life.

[Julia Longoria]

The injury was at the base of Jen's neck.

[Jen French]

So I could move, like, my arms. I could shrug my shoulders. I could, but I really didn't have any movement below that.

[Julia Longoria]

The prognosis was that she'd never walk again. What did you feel at that moment when you're. I mean, when it's sort of starting to hit the realization?

[Jen French]

Um, well, it, it didn't, to be honest with you. I mean, I was in denial for a while.

[Julia Longoria]

It started to sink in. In rehab, she was able to restore some of her hand movements. But even when she finally went home three months later, she was still unable to do so many of the things she used to be able to do.

[Jen French]

Oh, my God, you name it. I couldn't get in and out of my house independently. I couldn't drive, I couldn't make myself food. I mean, dressing myself was a full on workout. There would be days where I couldn't put my shoes on. I'd throw them across the room. I mean, I think I went through phases of denial and windows of depression.

[Julia Longoria]

And Jen was always looking out for a cure, A clinical trial, or experimental treatment that could give her hope of walking again.

[Jen French]

At the time, stem cells were the big thing, but, you know, I didn't understand all the biologics behind it. And if I don't understand something, I have a hard time jumping in. But, you know, I understood electricity.

[Julia Longoria]

Scientists at case western reserve in Cleveland claimed they could implant electrodes inside the body and use electricity to make paralyzed people walk again. Jen knew it was just a clinical trial at first.

[Jen French]

Okay, we're going to go down this new frontier, and if it works, great. If it doesn't, at least I made my contribution to science.

[Julia Longoria]

But if the clinical trial proved that it worked, A company called neurocontrol was already standing by. They had acquired the rights to the technology and were planning to commercialize the device to provide a permanent cure for paralysis. Jen picked up her life in the northeast and moved to Cleveland.

[Jen French]

The first procedure was seven and a half hours. I just remember the room being full of people because it was an experimental surgery. So we were kind of training new people on the surgery. So they implanted eight electrodes in my back and my glutes and hamstrings and quads and hips.

[Julia Longoria]

The electrodes went under her skin, right onto the muscle.

[Jen French]

When you think about how our muscles move, we send a command from our brain. It goes down our spinal cord, it goes out to the peripheral nervous system, and the peripheral nerves say, hey, muscle, you need to contract. And it Contracts the muscles.

[Julia Longoria]

But Jen's injury had severed the communication between her brain and her nerves on her muscles. So this new system of electrodes were kind of like a system of artificial nerves, Nerves that wouldn't be controlled by her brain, per se.

[Jen French]

They give you a control box. It has all the brains, it has the circuit boards, the battery power.

[Julia Longoria]

It would be controlled by a remote control. Pretty soon, it came time to take the new system out for a spin. To have Jen try and stand up by herself. It was a whole event.

[Jen French]

My husband took off of work. He was there, and my mom was there. My parents might get in position, press a button, wait a few seconds, and I hear a beep, and it starts contracting. You could see, like, the contraction in your muscle. And that's the first time I had seen it in a year and a half. That was, you know, that was just amazing. Like, oh, my God, you make my muscles work again. This is so cool, right? I mean, she's being able to stand up and look down, and all you see are your legs. And you don't see these big braces around it or any other big supports. It's just you standing. I mean, that. That was amazing. I don't think there was a dry eye in the room, actually. I think it was. It was more of awe of science and technology, but also like, wow, this is real and it really works. This isn't a pipe dream.

[Julia Longoria]

After the clinical trial ended, Jen took the device home with her, at least temporarily. She got her life back. She was able to get out of bed in the morning, climb stairs. She could stand up at baseball games. She could even sail again. All that was left to make the cure permanent was for the company, neurocontrol to commercialize it. She was still waiting to hear about next steps when she got some news.

[Jen French]

I was implanted in 1999, and then in year 2001, I was on the NIH campus.

[Julia Longoria]

She was at a conference at the National Institutes of Health, which was one of the funders of her clinical trial. Some of the case western researchers she'd.

[Jen French]

Worked with were there at that conference. One of the main researchers came up to me, got on his knee and told me.

[Julia Longoria]

He got on his knee?

[Jen French]

Yeah. Well, he got down to my level and said, I need to talk to you. Neuro control went out of business. The whole aspirations of this being commercialized went down the tubes. It hit me like a. Like a brick. There were tears. I mean, it was a dark moment.

[Julia Longoria]

You know, Without a company to fund the device's Future Jen would be paralyzed all over again.

[Jen French]

You know, it's like facing a spinal cord injury for your first time and becoming paralyzed. What's next? Right? So that's the question that kept going in my head is what's next.

[Julia Longoria]

This week? What happens when the life changing technology implanted deep inside your body suddenly gets abandoned?

[Narrator]

Julia.

[Julia Longoria]

I'm Julia Longoria. This is unexplainable. Does your device make a sound?

[Jen French]

Yes. Oh, yeah. Oh, yeah. You have the ear. Hold on. Okay, okay, let me turn it off. So you're gonna laugh at this. One of the engineers, his kids were really young at the time, and he said, how can I make a distinct sound so that people know when it's turning on? So. Okay, I'm gonna power it up now and tell me if you recognize this tune.

[Julia Longoria]

I just hear like a da da da.

[Jen French]

Exactly. You know what song that is?

[Julia Longoria]

What is it?

[Jen French]

No do re mi.

[Julia Longoria]

Oh, oh, like from Sound of Music.

[Jen French]

Exactly.

[Julia Longoria]

Y.

[Jen French]

So, yeah, engineers always put their little fingerprint on things.

[Julia Longoria]

Jen's remote controlled neuro implant is still with her. We were on video chat. I watched her use the device to get up and sit down a few times.

[Jen French]

I know some people in the research world call it the Radio Shack device. Probably some of your older listeners, but it still looks like a product of the 90s.

[Julia Longoria]

Yeah, a radio Shack device in every sense of the term, I guess. Considered it.

[Jen French]

Exactly. So I've been in this long term clinical trial for 23 years. If you take start to finish, it'll be 25.

[Julia Longoria]

When the company that was going to take her device to market went bankrupt, she and the team at Case Western Reserve got creative. What did you do next?

[Jen French]

The research team regrouped and took everything back into research. So that's how it became a long term research study. Yeah. So it's under various grants. Actually, most of them are government grants. The team in Cleveland is amazing to be able to still support this device. But I'll tell you, that was a window into the concept of abandonment.

[Julia Longoria]

Since the company Neurocontrol went out of business in 2001, no other company has picked up Jen's device. About 350 people would have lost the life changing technology. But the researchers at Case Western have figured out ways to provide versions of what a company would provide. They use old parts and keep applying for academic grants to keep the devices up and running in as many patients as possible. Listening to Jen's story, like what was going through your mind?

[Liam Drew]

I mean, it's a funny thing to say. But Jen was basically one of the lucky ones.

[Julia Longoria]

This is Liam Drew.

[Liam Drew]

I arrived at Jen's story having spoken to several people who'd had neural devices implanted that had changed their lives much for the better, and then completely lost access to those devices.

[Julia Longoria]

These days, Liam's a freelance science journalist.

[Liam Drew]

Having previously been an academic neuroscientist.

[Julia Longoria]

You were previously an academic neuroscientist?

[Liam Drew]

Yes. I've been reporting on neurotechnology now for around eight years.

[Julia Longoria]

I first learned of this phenomenon of abandonment from a piece Liam wrote in Nature magazine a few years ago called Abandoned.

[Liam Drew]

Abandonment has actually become the sort of the name for this problem. It's a fairly obvious name for it, but it's been interesting to see that term become quite standard in the literature.

[Julia Longoria]

The first patient that Liam encountered with an abandoned neuro implant had a very different fate from Jenn French's.

[Liam Drew]

Her name was Rita Leggett.

[Julia Longoria]

Rita wasn't paralyzed. Rita suffered from seizures.

[Liam Drew]

Her life had really been defined by epilepsy for a long time. And by the end of her 40s, she was quite depressed, and she was sort of anxious about leaving her home.

[Julia Longoria]

And then Rita had a device implanted in her brain that could warn her when a seizure was coming.

[Liam Drew]

The device just through simply, well, there's nothing simple about it. Just by warning her that a seizure was imminent and giving her that control, that she could take herself to a safe place, maybe take a dose of medicine that would make the seizure less severe, in gave her an unbelievable lease of life. She actually met a man and got married. Utterly, utterly transformative. The very complex and unprecedented relationship that could form between a human being and a brain implant. But then the tragic end of the story was that although this device was very successful, the startup that was developing it couldn't attract sufficient funding to keep going with it. Rita and her husband sort of fought tooth and nail to buy the device and somehow get support. But it was simply a case of, that's it, it's over. You can have it for as long as the battery runs, but we can't recharge it. And as I've learned about more and more cases of this, what's it seemingly, I found it utterly shocking to begin with, and I think it probably is shocking to a lot of people, but it's often the battery that's the problem, something that simple. So, I mean, I'm a biologist by training. I don't know a lot about batteries, but companies are basically coming up with proprietary batteries. And so if that's a unique Part of the technology. Then when the company goes, all support for that battery system goes with it.

[Julia Longoria]

It's like, it's so simple, it sounds so dumb. Like you laugh so you don't cry. Like, I can't imagine having this life changing relationship with a device just severed because you can't replace the battery.

[Liam Drew]

Yeah, yeah, no, yeah. I was exactly the same at the beginning. I was just like, really? That's the issue. Rita, she had to travel to the hospital to return the external part of.

[Julia Longoria]

The technology because part of it was just still in her brain. Yeah, yeah.

[Liam Drew]

The internal part remained in her brain. And Rita had to hand over the device to a stranger. And the stranger just said, you can leave a note if you like. And so she just sort of left so disheartened. Yeah. And the internal part of the device is still in her brain. And that's quite a common thing. Quite often these devices that are left in people's brains can be incompatible with MRI scans. And so they can actually become a real problem. I think they've got slightly better in recent years. But, you know, just in terms of human costs, not being able to have an MRI scan because you've got some device left in your head or body for a trial is quite a price to pay for that when there's not.

[Julia Longoria]

Even an upside if it doesn't work anymore.

[Liam Drew]

Yeah, no, exactly, exactly.

[Julia Longoria]

But Liam talked to another patient who was staring down the barrel of that same fate, having a device abandoned in his brain because the company went bust and couldn't replace the bespoke battery.

[Liam Drew]

Marcus Bull. Markus lives in Germany and he had an implanted nerve stimulator that treats cluster headaches. Debilitating type of headache. He was sort of up to six to eight, one hour long. Excruciating headaches every day. In Markus's case, the nerve stimulator is in his left cheek and it sort of intermingles with the nerve fibers that run to your face to help you control your face. And they're responsible, it seems, for triggering these cluster headaches. And so if you can sort of zap those with electrical pulses, then that disrupts and sort of quells the headache again. He just really felt like he got his life back with this device. The trial was a great success. The device was very effective. But cluster headaches are very rare. And so it's not a big market. The company that developed this system has gone bankrupt and no one has access to this device anymore. He's an electrical engineer by training and he has been for the last two or three years at the time. Maintaining his own device.

[Julia Longoria]

Maintaining his own device?

[Liam Drew]

Yeah. So you.

[Julia Longoria]

What does that mean?

[Liam Drew]

So again, it was this proprietary battery. So it wasn't a case of just going to the shop and buying a new bunch of AA batteries. It was this very rare battery. And he initially scours the Internet and he finds a company in America that will sell him a battery of this nature. And he sort of has to convince the insurers that he is qualified to do this. He gets a battery from America, it replaces it, it works. That battery runs out, he goes back to the American company, they've stopped making it. So he scour the Internet again and he finds a company in China who are willing to make a battery of this nature. And so he's able to maintain the device.

[Julia Longoria]

There's something very like, I don't know, like 2025 dystopia about how like this man is forced to like hire a Chinese company to just DIY his own medical device. It's just like again, laugh so you don't cry. It's really wild.

[Liam Drew]

I agree completely. In his case, he's been able to maintain it, but for many of these people it was just a sort of brief few years of respite from a sort of life defining condition. Are you still there, Julia? Oh dear. What's going on here?

[Julia Longoria]

After the break, how to combat abandonment.

[Liam Drew]

Oh, come on.

[Narrator]

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[Liam Drew]

A doe a deer. A female deer. Ray. A drop of golden, unexplainable. Hello.

[Julia Longoria]

Hello.

[Liam Drew]

I think my computer just crashed. I don't know.

[Julia Longoria]

Oh, fun.

[Liam Drew]

Yeah, There we go.

[Julia Longoria]

Speaking of technology abandonment.

[Liam Drew]

Yes, exactly.

[Julia Longoria]

Great. So I think we have this idea, or I certainly have this idea somewhere deep in my psyche, that if we have a new miraculous technology, health technology that works, we just assume, some of us assume, that the economics will just kind of work themselves out, like the good ideas are going to rise to the surface. But it feels like your reporting shows, like the economics don't always work out, even if it's a technology that works.

[Liam Drew]

Yeah. Certainly the cluster headache device and the epilepsy warning system were both clinically, really effective. It was business issues that sank both of them.

[Julia Longoria]

Do you have a sense for what a company needs to succeed? Watching the ones that didn't?

[Liam Drew]

No, I think that's beyond my pay grade.

[Julia Longoria]

Same? Well, yeah, it's a big feat to bring a pretty high maintenance technology to hundreds of people without breaking the bank.

[Liam Drew]

The first person who gets one of these devices implanted in them will typically have the full attention of the entire team. Right. The engineers checking that it's working. You'll have the neurosurgeon, the clinical team, the nurses and doctors, the scientists checking the outputs of it. All of them in the room, you know, troubleshooting, willing them on. And then as it becomes a product, you basically want it to be something. I mean, it needs to be something that, you know, someone with.

[Julia Longoria]

Self sustaining.

[Liam Drew]

Yeah, basically self sustaining and sort of something that someone can program themselves and use themselves. And that's a real challenge in this field. Scalability.

[Julia Longoria]

It seems like it takes a village almost to get these medical devices up and running. But then you don't want to have to pay a village to keep them running forever.

[Liam Drew]

Basically, yes.

[Julia Longoria]

The village that makes neuroimplants possible knows that their industry has a problem. Liam went to a sort of convening of the Village after his story in Nature magazine came out.

[Liam Drew]

A year after it came out, I went to a meeting at the Royal Society and there was a session that was dealing with how we can protect people from abandoned devices. And I sort of sat down and the chair, a neurologist from Florida, introduced the panel. And then he said, if anyone really wants to know the background to this session, they should read Abandoned by Liam Drew.

[Julia Longoria]

In this conference room full of doctors, nurses, patients and industry, Liam's reporting helps spark a conversation about what can be done about the problem of abandonment. One big idea that comes up A lot, says Liam, is the idea that some kind of plan has to be in place in case a company goes south.

[Liam Drew]

I mean, the tricky problem with companies going bust is that no company plans to go bust. The company that I reported on that did go bust, I spoke to one woman who'd had Nuvectra's spinal cord stimulator implanted and it was when she went back to the surgery to have her stitches removed that she was told that the company had gone bust. The company had given no warning whatsoever their devices were being implanted, you know, essentially on the day they went bust. So there was no sort of warning that they were about to go belly up and not be able to support these devices anymore. So sort of short to medium term support, just to sort of cushion the fall of the device being no longer available feels like one part of it. Then the harder issue is what you do about the long term. Can't they put money in a escrow account? Can they set up a sort of non profit parallel organization? Can they take out insurance? Everyone wants that support to be in place. But I think if you're a business person dealing with a startup where margins are small and they hear those plans and they just think that's expensive, that's just a big chunk of change for a small startup to take on. And so I remember very clearly one business person just saying it's not going to change unless there is legislation that demands change.

[Julia Longoria]

But even patients are hesitant about legislation. They don't want to have barriers to entry for startups that go out on a limb and support these life saving devices.

[Liam Drew]

It does have to work from a business perspective because if it becomes too expensive to develop new devices, you're not going to get the new devices that could help people. So one other thing I will say, just as, I don't know, maybe it's a bit gloomy, but another layer of this is that we all know from our phones, for example, how quickly technology changes. Like an iPhone 16 compared to an iPhone 2 is night and day, whereas, you know, an aspirin is an aspirin and it was 100 years ago. And so how do companies keep supporting version one, version two of their technology when they're on version 16? Because, you know, we're all expected to sort of not use a iPhone 2 or 3 anymore. But if it's, if your iPhone was implanted in your head and you didn't have any say about what iPhone you were going to use, that's a different issue. So I think one of my Biggest concerns about this is that we've seen an absolute mushrooming of neurotechnology companies. So I think just that that investment and that will to create good products is great and hopefully that will benefit people who need them. But at the same time, it's potentially going to create a crowded marketplace in which there will be winners and losers and we'll see issues of this nature.

[Julia Longoria]

So it seems like people on all sides of this village that make a medical device possible agree that there's a problem.

[Liam Drew]

Yes.

[Julia Longoria]

What is the solution to the problem? Is there one?

[Liam Drew]

I don't think we know what the solution is yet. Everyone who tries to create these devices is trying to do a good thing. It takes years, decades, from an idea, through initial studies, through larger studies. It literally takes decades to bring a product to market. In my experience, everyone I've ever spoken to in this field is incredibly passionate about helping people, and that's what drives them. So the idea of sort of helping them and then not is really distressing. That was most evident in the case Western team, which have just kept supporting people and like, just sort of finding a way, you know, sort of talking to insurers, talking to the hospitals, just making it work.

[Julia Longoria]

Why is it so thorny? Like, it feels like everyone has good intentions from what you're saying. Like, people have thought about this so deeply. People who have all the personal stakes in the world can't, still can't offer up a solution. I wonder why you think it's so unanswerable.

[Liam Drew]

I think everyone would just like it not to be a problem. You know, I mean, everyone's ideal version is that you sort of come up with a wonderful piece of medical technology and your company is defacto, a huge success and you support people using it for the rest of their lives.

[Jen French]

Do I have a relationship with my device? I absolutely have a relationship with my device. I take it everywhere with me. I use it every day. And when it doesn't work, it's like I'm paralyzed again. It's like this loved one that you're missing.

[Julia Longoria]

You know, I'm just curious, like, this is a very silly question, so feel free to disregard. But, like, do you. Do you. Does it have a name? Like, do you. I don't know, do you, like, find yourself personalizing the device? I'm someone who like, names my cars and things like that. But I'm just curious, does it have to Julia?

[Jen French]

I haven't gone that far. I haven't named it. I haven't put eyelashes on it.

[Julia Longoria]

Fair. You're not quite as goofy as me.

[Jen French]

No, I wouldn't call it goofy. It's just, it's my box. And. But I'm also, maybe, maybe that's just my way of subconsciously keeping a little bit of separation. Because I know that at some point in my life I'm going to have to give this back, you know, and I don't want to get too attached to it, even though I know I am. Maybe it's. Maybe it's a subconscious thing on my part. When we're looking at all of the federal funding that is being cut off, all of the funding from National Institutes of Health, Brain Initiative, you name it, their funding has been dropped considerably and just wiped clean with no consideration of people in clinical trials. Right now, we don't know. I mean, I live every day with the possibility of being paralyzed again. You know, I've had, over the years, I've had the whole system fail twice and twice I've been, you know, paralyzed and then waiting for them to get grant funds so that we can reimplant.

[Julia Longoria]

Knowing what you know now, if you could time travel back to, you know, the 90s before you moved to Cleveland, before you got this device implanted, knowing, like the uncertainty that you're facing, like, would you stop yourself from going through with it?

[Jen French]

No way in hell. No way. No. It's been, you know, it's been an incredible journey. I wouldn't have taken this career path if I didn't get implanted. Now I'm in the neurotech business, so I run a nonprofit called Neurotech Network that focuses on education and advocacy of neurotechnology devices, therapies and treatments. And it really is a labor of love. I wouldn't have even gotten into this field if I hadn't gotten implanted. Who knows where my career would be. So I cherish what I do. I cherish being able to learn so I wouldn't change a thing in the past.

[Julia Longoria]

You can learn more about abandoned neurotechnology and Liam Drew's piece Abandoned in Nature. There's a link in our episode description. Audio clips of Marcus Bull in German were courtesy of Nature. This episode was produced by me, Julia Longoria. We had editing from Meredith Hotenat, who also runs the show, mixing and sound design from Christian Ayala, fact checking from Melissa Hirsch, music from Noam Hassenfeld. Jorge Just is our editorial director, and Bird Pinkerton muttered to herself, everything is legal in New Jersey, before shoving the note in her pocket and turning around. Thanks as always to Brian Resnik for co creating the show and if you have thoughts about the show, send us an email. We're@ unexplainableox.com and you can also leave us a review or a rating wherever you listen. It really helps us find new listeners. You can also support this show and all of Vox's journalism by joining our membership program today. You can go to vox.commembers to sign up. If you do, you'll be helping make this place run, but you'll also be getting unlimited access to all the reporting on Vox.com, you'll get exclusive newsletters, and you'll get all of our podcasts ad free. Unexplainable is part of the Vox Media Podcast Network and we will be back with a big week next week. From here on out, you're going to be getting not one, but two episodes of Unexplainable in your feed. Get pumped.

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