Neuro-stimulation: Limited time only
April 10, 2015 8:18 PM   Subscribe

Paralyzed Again - We have the technology to dramatically increase the independence of people with spinal-cord injuries. The problem is bringing it to market and keeping it there. Mumford’s voice rises in astonishment as he tells the tale. “I have a device implanted in my body that was considered to be one of the best innovations or inventions of that century,” he says. “The last thing you think is that the company is going to go out of business, and not only is it going to go out of business, but you’re not even going to be able to buy parts for that. That seems insane!”
posted by CrystalDave (30 comments total) 22 users marked this as a favorite
 
This is similar to Dean Kamen's iBOT wheelchair, since the manufacturer stopped offering sales and service. :(
posted by mbrubeck at 10:34 PM on April 10, 2015 [4 favorites]


I would be so very angry about this if it was me. Still kinda am.
posted by jenfullmoon at 11:17 PM on April 10, 2015 [2 favorites]


The Invisible Hand slaps yet another customer...
posted by smidgen at 11:32 PM on April 10, 2015 [17 favorites]


This seems insane. Why aren't there modular standards for these things? Are there any?
posted by oceanjesse at 11:38 PM on April 10, 2015


Surely the sanctity of corporate IP trumps one unremarkable human life?
posted by Meatbomb at 2:33 AM on April 11, 2015 [15 favorites]


If Medicare, the VA, and the NHS all refrained from supporting this it wasn't just the invisible hand slapping them.

Seems like at the very least some sort of escrow of the related IP should be mandatory in this sort of situation, and probably for those spare parts too that just got sold off to some random company and put in a warehouse, inaccessible.
posted by XMLicious at 2:36 AM on April 11, 2015 [7 favorites]


The problem was that other board members—primarily venture capitalists who “decided they were not seeing the return on the investment they had anticipated”—were impatient.

Same as it ever was will be.

.
posted by frijole at 3:40 AM on April 11, 2015 [1 favorite]


Ah, yes. The impatient businessman. Truly the pinnacle of human existence.
posted by sonic meat machine at 4:43 AM on April 11, 2015 [1 favorite]


You guys need to be more respectful when you talk about the almighty job creators, upon whom we all depend. Their thoughts are higher than our thoughts.
posted by Pater Aletheias at 5:33 AM on April 11, 2015 [13 favorites]


My grandfather was a radio man in WWII; when he came home he opened a TV repair shop. He, and my father, who was raised in the trade, could fix anything that sparked. They both lost a lot work once people decided that electronic devices should be disposable instead of fixable.

That attitude should never have been able to permeate the medical device market, though I'm not at all surprised that it has. Where is the bionics fix-it shop? It sounds like we desperately need one.
posted by BlueJae at 5:59 AM on April 11, 2015 [8 favorites]


The usual method for tetraplegics is a tendon transplant to enable a sort of pincer movement with thumb and finger, and no replacement parts needed. However like FreeHand, the pool of qualifying candidates is small.
posted by arzakh at 5:59 AM on April 11, 2015


I almost posted an invisible hand bit of snark last night but the more I read through the article it seems so much worse. We have all the optimism of technology helping folks with horrible accidents natural and man made but what a cruel kicker that the rules of various statutes and organizations put limitations. One researcher could probably service the entire community but the research rules limit him to 5 a year. Not enough profit for new venture company. Ironic, we have the science! We have the Technology! We lack institutional compassion.
posted by sammyo at 6:09 AM on April 11, 2015 [5 favorites]


The Institute for Functional Restoration at Case Western provides at least some cause for hope, but there's really no justifying our current system that puts profit over people in this way. As P. Hunter Peckham said in the article:
“It was all legal,” Peckham says. “Whether it was ethical or not is another question. Well, I guess it depends upon what your ethics are, right?”
posted by audi alteram partem at 6:40 AM on April 11, 2015


Coincidentally, today's Wall Street Journal has a first person description of what it is like to endure paralysis.
posted by BWA at 6:46 AM on April 11, 2015


BlueJae: They both lost a lot work once people decided that electronic devices should be disposable instead of fixable.

That's more a function of technology than anything else. Once the state of the art moved past vacuum tubes and transformers to surface-mounted components and transistors, much of their skills and tools were obsolete overnight.

In their time, a lot of those RCAs and Philcos were american made. The US has no capacity to build their modern forerunners today.
posted by dr_dank at 7:21 AM on April 11, 2015 [2 favorites]


Abram knows full well what Mumford went through when the wires on the outside of his body needed to be replaced. It happens to him, too. There’s one key difference, though: several years ago, Abram managed to track down Kevin Kilgore, one of the researchers who developed the technology with Peckham in Cleveland. And Kilgore has been sending him wires over the years.

The situation mystifies and upsets Kilgore as much as anyone. When NeuroControl was in business, it supplied the Freehand to surgeons who installed it and served as the patients’ point of contact. From the perspective of patients like Mumford, the researchers who had originally invented the technology were not in the picture at all. When NeuroControl folded, nearly everything about it fell into a black hole. Not only did it fail to arrange technical support for its customers, but its website and phone number went out of service, leaving both the surgeons and the patients in the dark about what they might do next. Kilgore and Peckham say the company even refused to give them a list of patients who had gotten the implants. To this day the engineers say they don’t know exactly how many there were.


This is the part to me that is angers the most, and becomes a moral issue. There was no exit plan to care for people who had undergone surgery to utilize their product. Even taking into account the "invisible hand of the market," capitalism still allows for companies to be humanitarian or have contingency plans in ways that won't effect their bottom line that much. Even if it did effect their bottom line to care for others in a small way (such as providing wires), that can pay for itself in the long run when you are viewed as company that cares about people. Empathy sells. This is just someone not caring that much at the end of the day.

Is there no possible world in which those needed parts/wires could be replicated reliably, aside from the company taking it on again? I would think that someone with a whole lot of money might want to step up to make that happen as a humanitarian gesture.
posted by SpacemanStix at 7:43 AM on April 11, 2015 [3 favorites]


Way to go free market.
posted by boilermonster at 8:56 AM on April 11, 2015 [1 favorite]


This is a Gibsonesque nightmare, for sure. It's one thing to have landfills packed with the rusting, broken remains of once cutting-edge products that failed in the marketplace. It's another when they're buried in your own flesh.
posted by informavore at 9:12 AM on April 11, 2015 [2 favorites]


Previously. This is a similar issue. The right of medical device companies to keep secrets should end when those secrets hurt the people who rely on their products.
posted by Poldo at 9:55 AM on April 11, 2015 [4 favorites]


> Once the state of the art moved past vacuum tubes and transformers to surface-mounted components and transistors, much of their skills and tools were obsolete overnight.

Most of the time devices fail, it's not the surface-mounted components or transistors - it's a power-supply failure, or something macro.

If humans weren't irresponsible, thoughtless creatures, every device would be designed to be maintainable. Yes, ICs and circuit boards might have to be swapped.

Yes, people wouldn't have made quite the windfall profits that they did on high-tech. Yes, cell phones might be a bit bigger and more clunky. But we wouldn't have so many landfills filled with obsolete gadgets containing irreplaceable materials and leaching toxics in the environment.
posted by lupus_yonderboy at 10:09 AM on April 11, 2015 [6 favorites]


Should the government assume open-ended liability for any medical technology which fails to find acceptance, as this did? Or should companies which launch a medical technology be required to post a bond to assure lifetime support for it even if ends up commercially unsuccessful or clinically obsolete? In either event, all this does is make medical innovation vastly more expensive, which is the last thing we want.
posted by MattD at 10:16 AM on April 11, 2015 [1 favorite]


This is a Gibsonesque nightmare, for sure.

Appropriately enough, it was Gibson himself linking this article that led me to stumbling upon it.
posted by CrystalDave at 11:08 AM on April 11, 2015 [9 favorites]


Well, the free-enterprise system only supports things that make a profit. So, from every Libertarian out there to you with spinal-cord injuries, fuck you.
posted by Mental Wimp at 12:52 PM on April 11, 2015 [2 favorites]


oceanjesse: This seems insane. Why aren't there modular standards for these things? Are there any?
That's not how innovation works. It's nearly impossible to "invent a new, better technology" that "modularly interfaces easily with other new, better technology."
posted by IAmBroom at 2:35 PM on April 11, 2015


You know what? f*** capitalism. It has no place in medicine.
posted by The Underpants Monster at 3:17 PM on April 11, 2015 [1 favorite]


In their time, a lot of those RCAs and Philcos were american made. The US has no capacity to build their modern forerunners today.
Actually that's not really true. As a EE I deal with companies all over the US with the ability to build pretty much anything. There is still a lot of lower volume manufacturing capacity in the US. If you're building millions of something though it's cheaper to do it elsewhere.
posted by chisel at 3:50 PM on April 11, 2015 [4 favorites]


You know what? f*** capitalism. It has no place in medicine.
You know what else? Fuck Government. It, too, has no place in medicine.
posted by b1tr0t at 4:36 PM on April 11, 2015 [1 favorite]


You know what else? Fuck Government. It, too, has no place in medicine.

You know, I'm ok with some role for government to regulate medicine.
posted by zachlipton at 8:27 PM on April 11, 2015


It makes me all warm and fuzzy to know that we can find the money to subsidize oil companies, but we can't spend a government dime to help people. No handouts, you losers.
posted by BlueHorse at 8:40 PM on April 11, 2015


When I got my latest chair I was told that the negotiations leading up to the a a included a curb on the ease of getting Durable Mental Equipment. Some conservative dem insisted on it.
posted by angrycat at 7:46 AM on April 12, 2015


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