Health post: “A future without deaf children”

Last week, I met with a man named Liang, a Chinese Singaporean who was born profoundly deaf (the highest possible level of deafness) in both ears. Liang now has bidirectional hearing due to his cochlear implants from Cochlear Ltd, one in each ear. I met with Cochlear Ltd, the Australian cochlear implant company, at their Mumbai office in India. It was cool to see their office here in Singapore as well and actually meet one of their clients. I wanted to know how Liang made the decision to adopt this invasive medical technology and what features of the implants mattered most to him.

(Click here for my first article about Cochlear Ltd, which explains what cochlear implants are and surveys Cochlear Ltd’s various external processors, including the minimal Kanso model, which is near invisible when worn).

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Liang, with a cochlear implant and external sound processor for each ear. Here he is wearing the black Kanso model, one on each side, though it’s completely invisible in the photo.

When Liang was young, his deafness was untreated until he received hearing aids around 8 years old. However, the hearing aids simply amplified sounds that he still could not hear, so they were ineffective. Up through university, Liang was surrounded by a fully hearing family and hearing students in mainstream schools; he eked by with lip-reading, but he struggled. By the time he was 21 at university, Liang was thinking about the future and how much he would be hurt by his inability to hear. He could never pick up the phone and have a conversation, for example, and he felt as though the best job he could hope for would be manager at a fast-food restaurant. (Today, Liang works for the Singapore government in the Treasury Department.)

Liang did some research and realized that his only path to hearing was the cochlear implant surgery, as it would address the root cause of his deafness. He visited the hospital by himself; his parents were never too fond of the idea of implants because of the surgical risks. They also figured that Liang could manage without – he was doing okay in school and hadn’t flunked out – but he was unhappy, even if he wasn’t showing it at the time. Those first few years of university, he said, were the darkest years of his life.

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This model shows the over-the-ear processor model, which magnetically connects to the implant inside the patient’s head. You can see here that the surgery involves drilling slightly into the surface of the skull to create a ‘nook’ where the implant can rest under the skin.

There was a doctor at the hospital, Dr. Low Wong Kein, who Liang said is the pioneer for cochlear implants in Singapore. Meeting someone with such a positive view of cochlear implants helped Liang feel more comfortable with the idea, implying that having doctors as advocates is key for the general acceptance of new medical technology (10 years ago, cochlear implants were still considered new tech, at least in Singapore). Through testing, the hospital determined that Liang was a good candidate for cochlear implants, and he had to decide from which company to get the implants since there were a few choices at the time. I asked how he made the decision.

Clearly a finance man, Liang said that he picked Cochlear Ltd because it was the market leader at the time. He went through their financial statements to see if they were making good investments, as he wanted to make sure that they would still be the market leader in 5, 10, and 15 years; cochlear implants are (ideally) a lifelong commitment, with various upgrades throughout the years.

Liang also searched online for some consensus of which company had the best tech, perhaps an article with a non-biased analysis of the specifications of the different cochlear implants on the market. However, at the time he could only find publications from the individual companies marketing their products – not so helpful. Also, at 21, Liang was both image-conscious and cost-conscious. He wanted the smallest size processor available, worried that he would stand out, and he wanted to know if his hair would grow over the spot of the implant after the surgery and hide the scar. He went to Google looking for answers, but couldn’t find any – he was surprised that so little was known about cochlear implants at the time that he couldn’t get answers to what he considered to be very practical questions. He was also concerned about the reliability of the device, but ultimately decided that the potential benefits of a successful surgery were worth all the risks and worries.

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On the top shelf, you can see various colors for the over-the-ear processor model (also in my first article about Cochlear). On the bottom shelf is Cochlear’s Aqua+ model for underwater use, which was not available in India.

Finally, at 21 years old, Liang got his first cochlear implant in one ear. On “switch-on day,” after Liang had gotten the surgery and first had the implant turned on, he experienced good hearing for the first time. The thought occurred to him that he could now hear better than moderately deaf people, who always heard far more than he did pre-surgery. For this reason, he finds cochlear implants to be a far more disruptive and innovative technology than hearing aids.

At the time of his first cochlear implant, Liang said that the cost of the implant was almost $30,000 US. After the government subsidized the cost, it went down to about $7,000 US – still expensive, but far more doable. That was just for one side. Now, Liang is 30 years old and just received his second cochlear implant on the other side. This time the subsidy was less generous but still fair, as it was means-adjusted based on his current salary.

Over the past 9 years, Liang said, a lot has changed in the world of cochlear implants and what he cares about. He summarized that when he was 21, his decision was based 50% on the hearing quality and 50% on the form factor of the device. Now, at 30, Liang is focused 90% on the hearing quality, 5% on the form factor of the device, and 5% on comfort or ease of wear. As he’s gotten older, Liang has become more used to having a cochlear implant, less image-conscious (especially now that he has the near-invisible Kanso model), and more aware of the benefits of hearing. Since he’s already made the decision once to get a cochlear implant, his decision about the second one was more based on the benefits of bidirectional hearing vs. hearing in one ear. Now that he has bidirectional hearing, said Liang, he’s been aware that his hearing is far better.

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Cochlear’s Singapore office is at Novena Square in the so-called “Health City” because of all the hospitals in the area. 

I asked Liang how people reacted to him once he first got the implant. He said that people see the external processor of a cochlear implant and assume it’s a hearing aid, which they’ve seen before, so they don’t ask questions. Especially now that he has the Kanso model of the external processor, most people don’t know that he has any hearing issues at all. In fact, Liang is getting married in two weeks, and he was originally wondering how he would manage with wedding photos – whether or not he’d remove his external processors. Now it’s no question with Kanso, said Liang. He’ll keep them on and they won’t show in the photos, and he will be able to hear the photographer. Now that the processors have gotten more comfortable to wear over time, Liang cares more about ease-of-wear when it comes to medical devices.

The cost does add up, though. Over the past decade, Liang has paid about $17k USD on both his implants, which has been a considerable sum for his family. Now that he’s getting married, he thinks about his future family, and he worries. “What if I want to have three kids, and they all turn out deaf?,” he said. Liang would want to give them all cochlear implants, but then he has to find a way to afford six very expensive implants along with all the other costs of raising kids.

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An ad for Kanso from Cochlear’s US Twitter account (post here).

Liang supports the use of cochlear implants for the moderately deaf as well as the profoundly deaf. He works at Singapore’s Association of the Deaf to promote cochlear implants and has worked on their newsletter. I asked him if anyone seemed resistant to the idea of implants and if so, why. He said that many people are deterred by the high cost, especially if they are already in low-paying jobs due to being moderately deaf (a spiral effect). Liang stressed that to combat this downward spiral, it’s crucial for deaf children to receive cochlear implants as young as possible. From the doctor’s perspective, that’s better for hearing performance and speech development, and from a practical perspective, they will end up with better, higher-paying jobs.

Generally, despite the cost, Liang experienced positive reactions to the idea of cochlear implants from the deaf community – especially from hearing parents of deaf children, who are very invested in giving their kids “normal” lives. Liang said that he successfully promotes cochlear implants with such parents because he “walks the talk,” essentially, serving as a successful example of what they can do. His testimonials, and those of other implant recipients, build momentum for cochlear implants. Liang said that he imagines a future in Singapore without deaf children. All Singaporean children get a mandatory hearing test these days, so deafness is found immediately. Liang said that every deaf child would thus get implanted early on, and the government, recognizing the value in hearing, would help subsidize any parents who struggle to pay. With this normalization of the technology, the “anti-implant culture” will go away.

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Cochlear’s Singapore office, complete with Year of the Rooster decorations from the Chinese New Year.

Liang has lived in the US, and I wondered if he had any thoughts as to why Singaporeans might be more receptive to cochlear implants and why Singapore is ranked as such a healthy country generally. He said that some of the resistance to cochlear implants comes from strong Deaf communities that embrace being deaf and have no desire to be “fixed.” In Singapore, the overall population is quite small, so there isn’t a large or strong Deaf culture. Also as a cultural reason, Liang said that Singaporeans are generally very pragmatic. While it doesn’t come from a stigma against being deaf, said Liang, Singaporeans recognizes that the deaf have a harder time in school, in jobs, and life in general, so it’s simply more sensible to give them a path towards hearing (and they will probably make more money and become less of a burden to government over the years).

As to why Singapore might be ranked as so healthy, it’s not just the availability or acceptance of medical technology, though Liang did mention that the hospitals are very well-equipped. Liang said it might be due to diet and good portion control (though of course that varies person-to-person), and Singapore’s mandatory 2-year military service, which forces everyone to get in shape. There’s also the fact that Singapore is very pedestrian-friendly and safe. “Crime rates matter,” Liang pointed out, saying that more people will walk all over Singapore at all hours if they feel comfortable doing so. The government also has a National Steps Challenge to incentivize people to take 10,000 steps a day (4-5 miles), with the opportunity to win certain prizes (National Step Challenge).

As I saw in Sweden, there can certainly be a lot more to a high health rating than positive attitudes towards medical technology, though I still think that’s an important factor. It was great to hear Liang’s story, as the connection recipients have with cochlear implants is more longterm and emotional than that formed with many other medical devices; the process of getting a cochlear implant is long and costly but has an enormous impact. I think all over the world, people would have a positive reaction to cochlear implants (or any other medical device) if they could hear such stories from people whose lives were positively changed.

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