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Cochlear Implants and Ethics

A hand holding a silver colored behind the ear processor, Harmony from Advanced Bionics, by the coil.

Today is International Cochlear Implant Day. I have had a cochlear implant (CI) from Advanced Bionics for 24 years now. Before that I wore hearing aids (HA).

I have mixed feelings today. While I love a cochlear implant, I and many other long term c1 users like me are so fed up with Advanced Bionics that made us feel forgotten by them as they haven’t upgraded the external BTE processor for 11 years now. It’s long overdue.

The following are post and articles I wrote in the past about my experiences with CI:

Personally I find cochlear implant a fantastic technology. No question about it.

However, I and many other long term c1 users of Advanced Bionics have been very frustrated with that company as we feel being long forgotten by them. AB hasn’t updated the external BTE processor for us for 11 years now which is long overdue.

I came across an article about issues of blind people with Second Sight. This article made my blood boil. I’m not blind, but I’m deaf and have had a cochlear implant from Advanced Bionics for 24 years now.

What do Second Sight and Advanced Bionics have in common? They were founded by the same person – Alfred Mann.

I don’t know if it’s a bizzarre coincidence or not, but I and many others (who were implanted before 2000) have been frustrated with AB for many years.

AB has not produced a new BTE (behind the ear) processor for us long term users in the past 11 years. It’s quite a long time. New BTE processors are usually produced every 3-5 years.

I’ve had nothing but ongoing problems – one after another – with AB since my implantation. Their main issue is the lack of backward compatibility with the old internal.

AB keep making excuses about the old internal. There are 2 other CI manufacturers – Cochlear and MedEl. They both have consistently made processors that are backward compatible all the way back to their first internal parts.

For example, N22 users (that have internals older than mine) can get a current n7 BTE from Cochlear. Some of them have had internals for 25-30 years. They also have had more BTE upgrades than I have.

AB claims on their website to be “innovative”:

  • History of Innovation: “Since its inception, AB has consistently made industry-leading advancements in technology innovations that have helped make a difference in the lives of thousands of families worldwide.”
  • For a life without limitations: “Sonova is a leading provider of innovative hearing care solutions. Through our core business brands we offer our customers one of the most comprehensive product portfolios in the industry from hearing aids to cochlear implants to wireless communication solutions.”
  • About Advanced Bionics: “Advanced Bionics is always focused on innovations that improve quality of life. AB has consistently made the industry’s leading advancements in hearing technology. In fact, with six sound coding programs, we offer more ways to hear than any other cochlear implant company. … At Advanced Bionics we are dedicated to improving lives by developing implantable technologies and services that help our recipients achieve their full potential. Our commitment to putting patients first and providing the best possible hearing performance remains at the forefront of all that we do. The trust patients place in us inspires us to act with integrity and transparency as we strive for excellence each and every day in all that we do.”

(Note: AB has been acquired by various companies over the years. Currently it’s under Sonova.)

Yet AB keeps making excuses not to be able to upgrade a BTE processor for us long term users. I don’t feel they care about us long term users. I feel that they forgot all about us and moved on to the newer users. I do not feel that AB puts us long term users first.

We were pioneers and early adopters of AB. Without us, there would be no technological advancements for the newer AB users. Not only I and other long term users feel dismissed by AB, but also by newer AB users not knowing or understanding our experiences and frustrations as early adopters. It really hurts me.

I don’t feel AB has been transparent with me as they claim on their website. They keep dodging my questions and giving me vague answers. I made a mistake placing my trust in AB.

It makes me feel concerned that AB may no longer upgrade processor for us long term users.

Yes, there’s a new processor called Chorus. But it’s a body worn processor, a thing of the 20th century. Why would we want go back to wearing a body processor when a BTE processor is the common processor?! To my knowledge, Cochlear and MedEl no longer produce body worn processors. They have also produced one unit processors and now are already on their second or third upgrades. AB hasn’t produced a one unit processor even for their new users!

Many of us long term c1 users were waiting for a new BTE processor. We didn’t ask for another body processor. AB even encouraged us to try Chorus even though many of us made it clear to them that we weren’t even interested in the body worn processor!

When I was first offered to consider a CI, I hesitated because I didn’t want a body worn processor. I never liked body worn hearing aids when I was a kid. So I was excited to get BTE hearing aids and did not want to wear any body worn devices again in my life.

At the time of my implantation, only Cochlear and MedEl offered a BTE processor. AB didn’t offer that yet. I was offered to choose between c1 from AB and n22 from Cochlear.

I hesitated about AB because of the lack of BTE processor. AB assured me that I would get a BTE “shortly” after my surgery in 1998. Yet the waiting time turned into the long 3 years with a bulky body processor that I hated.

Then I finally got my first Platinum BTE, but it didn’t turn out what I was expecting. The processor was so heavy, hurt my ears, and had a battery life of 2-5 hours. It took me 10 years to wait for a Harmony BTE which I currently wear. It’s a little bit better than Platinum BTE, but not much. Now I’m waiting for 11 years and counting for a new BTE and it seems like there’s no end in sight.

I decided to get a cochlear implant in 1998 only because I prefer a BTE processor. So my problems (one after another) with AB started after my implantation. After my long time issues with AB, I started regretting my decision to pick AB over Cochlear.

You may wonder why we don’t get re-implanted. It’s not that simple:

  • It requires a surgical intervention under general anesthesia. Why would we want to take a risk to replace an internal that still works? Not to mention the procedure costs about 50-100k per one ear.
  • Insurance companies normally don’t cover re-implantation of an internal device that still functions.
  • I was told that the longer you have the internal the riskier it is to replace it. It’s because a cochlea may get ossified which may make it difficult to remove the electrode array.

You may say business is business. However, when it comes to medical devices, especially ones that are implanted in your body, I feel that a manufacturer needs to care more about customers than about profits.

Cochlear implant itself is not a problem. I personally think it’s an amazing technology. The problem is when non-disabled people profit off of disabled people and care more about profits than disabled people. I feel that it’s a serious ethical and moral issue.

Also, technology alone doesn’t solve all accessibility issues. Even with new upgrades, there are situations when battery may go down or a device or its part may get damaged. Cochlear implants do not restore hearing. Many hearing device users still rely on visual access like lipreading and captions.

That’s why I keep educating organizations about the importance of accessibility and advising them on how to improve accessibility of their products and services for disabled people.

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