Top of Mind with Julie Rose - Radio Archive, Episode undefined
- Aug 11, 2021 8:00 pm
- 17:42 mins
Abroad, the demand for cochlear implants is growing, but it’s rare for children in developing countries to receive the same quality implants we have access to here in the US. That can have devastating consequences for those who receive this inferior technology. Michele Friedner, an Assistant Professor of Anthropology in the Department of Comparative Human Development at the University of Chicago and expert on deaf communities in developing countries, explains. (Segment produced by Sam Faulconer) CIARA HULET, HOST: Thank you for listening to Top of Mind, I'm Ciara Hulet. The demand for cochlear implants is growing abroad, but it's rare for children in developing countries to receive the same quality implants we have access to here in the US. And that can have devastating consequences for those who receive this inferior technology. Michele Friedner is a professor of medical anthropology at the University of Chicago. She studies Deaf communities in developing countries, and she joins me on the line now. Thank you so much for your time. MICHELE FRIEDNER: It's great to be here. Thank you. HULET: You have cochlear implants, can you contrast your experience with someone who got them in a developing country? FRIEDNER: I used hearing aids until I was in my 30s when I made the decision myself to get a cochlear implant, and I chose to get a single cochlear implant in one ear, which was covered by insurance. And then when I was in my early 40s, I decided to get another cochlear implant, which was also covered by insurance. In the United States, private insurances and Medicare as well as Medicaid, actually I think it's mostly Medicaid, pays for cochlear implant, and people receive the latest technology. There are currently in the US three major cochlear implant manufacturers that are approved by the FDA. And so folks in the US who are electing to get an implant usually have a decision of which company to go with. And then after they decide which company to go with, you know, they are pretty much guaranteed to get the latest model. In fact, sometimes people will delay getting an implant, because they're waiting for that company to release the latest model, which is really interesting to people make decisions about when to get implanted, based on whether a company is going to be releasing a new processor. HULET: Kind of like a phone? Like the when's the next iPhone gonna come out, should I wait to buy the new one? FRIEDNER: Exactly, exactly. However, in most developing countries are the countries where I work, which so far have been India and Pakistan, what is happening in these countries is that there's a private market, it’s pretty much unregulated. And those three manufacturers work in those countries. And then there's also a fourth manufacturer, which is not approved by the FDA. And because of this private, unregulated market, different processes are available at different price point. And so families need to make difficult decisions about which processes to get, what they can afford, and if they should pay a lot of money for a single processor or if they should spend less, and get to so called entry level processors. And entry level processors often lack the sophisticated noise cancellation and focusing on speech software that the later models have. They also lack accessories such as a microphone. So for example, when I go to a lecture, or when I go to meet a colleague for coffee, I can give them a microphone that directly transmit their speech into my processors, and so all of the noise in the environment is gone. HULET: So if you're in a noisy cafe, you won't hear all the clatter of dishes and other people talking around you. FRIEDNER: Exactly. And, and what's really interesting, and really important to keep in mind is that noise is something that affects deaf and hard of hearing people more than people with typical hearing, because we have to work harder to hear. And noise, people often talk about signal to noise ratios, and so increasing the amount of signal or increasing the amount of speech that you have access to is super important because think about all the extra cognitive work that we're doing to try to hear. HULET: So you're doing extra work to you have to focus a lot more and try a lot harder to hear, and so when you have more noise in the environment, that's just more distraction and makes it harder to focus in on what you're trying to hear? FRIEDNER: Exactly. Exactly. And we often talk about developing countries as being noisy places. I know for example, where I spend time in India, in schools, windows are always open, bands are constantly on, there's traffic noise, the children sit on big long wooden benches where if a student moves back and forth, the bench reverberates or makes a sound. So there's all of this constant noise and it's really hard for children to A) hear and then B) to filter out all of the sounds that they are trying to get rid of, so that they can focus on the so called signal or the speech of their teacher. And I think, you know, we often talk about debates and deaf communities versus so-called hearing communities, or we talk about the ways that there's a deaf world and a hearing world, and we talk about these debates around sign language versus speech. And I personally think that, you know, there's value in both signing and speaking, but my basic sort of point is that if we are going to implant children, we should implant them with the latest technology, so that they have the opportunity to live up to their potential however potential is defined. HULET: Could you give an example of someone that you met that had one of these implants these inferior not as high quality, not the latest technology implants and how that affected them? FRIEDNER: Yes, oh, I think it's as simple as, you know, children just really straining to hear and not being able to hear their teachers, or feeling really tired by the end of the day, because they spent so much time in noise, and just not being able to be fully present, by the end of the day, just being ready to crash. But being constantly surrounded by input and by unwanted sounds. And, you know, I heard from lots of families about how, you know, the implant has really made an important difference in their children's development, and that their children are now able to hear and speak. However, you know, they often report how tired their children are by the end of the day. And there's often this kind of ambivalent relationship with an implant for kids. And for adults, you know, on one hand, is great, because it gives you access to the world of sound and information and speech. On the other hand, there is all this extra work that one needs to do to negotiate unwanted sound. You know, in my research, people often talk about it in terms of cars, they often say okay, so, you know, a basic implant is like, Ford, well, the latest model is a Mercedes Benz. You know, both cars will get you from point A to point B. And my response is always an implant is not a car. And it's not just about getting from point A to point B, you know, with a basic implant, you know, A) you may get from point A to point B, but you're going to be a lot more tired, you might not have, you know, you might have missed a few turns, because you didn't hear where people were people were saying, you know, it's not about seat warmers in the winter? No, we're talking about something a lot more fundamental than that. And it's an issue of basic equity and making sure that people have the same capabilities to achieve everything it is that they need to achieve, or that they can achieve around the world. HULET: Is it worth it? Do you think for some of these children who and later adults that, that maybe it wouldn't be worth it at the end of the day, it's not worth it to have an inferior cochlear implant, it would be better to just not have one at all? FRIEDNER: Well, so this is one of the things that I've been working on right now. One of the biggest issues that's coming up right now in developing countries is the issue of maintenance. So like I said, In the US, you know, I get my processors through my insurance plan. If when the process of breaks or becomes obsolete, I get support for my insurance plan for purchasing a new one. When becomes obsolete, I'm automatically guaranteed a new one because it becomes obsolete. However, in developing countries, that's not the case and the implant that children are getting are often implants that are obsolete in the West. And not only that, but they need to be maintained. So these are external processors. They have cables they have coils they have magnets and these things break, and families really struggle to maintain these products. A single coil can cost $200, which is more than a family makes in a month. And families are asked to make really difficult, actually impossible choices about whether to put food on the table or whether to pay for a coil for an implant processor. To me, this is super problematic, you know, whenever I talk to a parent, but what comes up is this issue of what they call maintenance problems, or maintenance being so costly. And they're not just maintaining a device, they're maintaining their child's senses, or they're maintaining a sense of audition. And they're being told by audiologist by speech and language pathologist, by the government, by surgeon by everyone that it's really important for their children to listen and speak, and that this is the only way to do it. HULET: The only way? They couldn't, I mean, there are plenty of deaf people who function perfectly well signing and then plenty of people who choose not to get cochlear implants, they would prefer to stay, you know, signing and being in the world that way. FRIEDNER: Exactly, exactly. And one of the things that I'm really interested in is the way that parents are not given choices. So where I work in India, you know, there is something called Indian sign language, which is a government Institute for Indian language research, and development. And, you know, the government has actually devoted resources to developing Indian sign language. However, throughout my research with audiologists speech, and language pathologists, surgeons and families, I was told by the professionals that they did not tell children and families about sign language, that they did not think that there was such a thing called Indian sign language. And then family said, ‘oh, we don't know about this thing called Indian sign language. What is that?’ You know, and so children and families are not given other options. And the fact that they're not giving other options is also what makes this provision, inferior technology, and the lack of support for maintenance, super problematic. And something that should be rectified, because, you know, in my conversations with government administrators, so India, Pakistan, and a few other countries have government provision of cochlear implants. And what's happening in these countries is, at least let me speak about India, because that's the country that I know the best. So the government will put out, you know, a call for proposals. And then the different manufacturers will submit bids to have their implant included in the government program. And pretty much the company that has the lowest bid, get the contract. And so there's pretty much a race to the bottom in terms of providing the most basic processor at the cheapest price. And some of the companies will not even compete, like they will not enter into the tender process because they're like, we're not going to win, we're not willing to ship our processors, we're not willing to make something that's so inexpensive, or at least that's what I've heard from some of the manufacturers. And so the processor that's being distributed through these government programs, is a processor again, that was never available in the US. That is super basic. HULET: I'm speaking with Michele Friedner. She's a professor of medical anthropology at the University of Chicago, and she's studying cochlear implants in developing countries and how they often get inferior Technology. Professor Friedner, so what's the solution here other than, you know, throwing money at developing countries so that government programs can help families get better cochlear implants, which probably won't happen. But what other solution could there be here? Would just be normalizing kids and adults who sign and that they have that option instead of instead of pushing this idea that that to be a fully functioning person that you need to be able to hear? FRIEDNER: Yes, I think so I think your point about normalizing sign and offering that as a resource is really important. And it shouldn't be either or, it should be children, parents, families should have multiple options, you know, we should engage with the world in a multi-sensory, multi-modal, multi-relational way. So that's first of all. Second of all, I do think the companies have a role to play here. I think there's a whole issue of intellectual property, a patent here that companies might want to think about, you know why certain things are so expensive. You know, why do the cable that could cost 50 cents, why does it cost $200? Why does a battery costs, you know, $100 for a rechargeable battery? Why are you making implant that only have rechargeable batteries and selling them in developing countries where there's constant power outages? Right? So that's I think that's also really important. But I think implant company manufacturers should also, you know, when they're competing for tenders, or when they're trying to get contracts from the government, they should think seriously about, you know, what is this product? And why are we offering a different product to a different market? You know, why is it that they’re staggered around the world. So that's another piece of it. The third piece of it is, so there are efforts to develop indigenous cochlear implants. I think China has developed one in India, the defense organization is currently developing one and it's in clinical trials. It'll be interesting to see what kind of features that those implants actually have in terms of noise cancellation, and in terms of focusing on speech, so that's another option, to have this possibility of having indigenous implants that are made cheaply in different places. So the World Health Organization, for example, has all of these great publications about how to make sustainable wheelchairs and assistive technology that can be developed sustainably in different countries. However, you know, there is nothing for hearing aids or cochlear implants. And so I'd like to see more effort by international health organizations to think about this issue and to think about this, the differential possibilities that are provided to children and adults in different parts of the world. HULET: Michele Friedner is a professor of medical anthropology at the University of Chicago. Thank you so much for your time today. I really appreciate it. FRIEDNER: Sure, and thank you for having me. I have a forthcoming book that talks about these issues at length that will be coming out in Spring ‘22 with University of Minnesota press, and it's called Sensory Futures: Deafness and Cochlear Implant Infrastructures in India. HULET: Okay, we'll have to be on the lookout for that. I'm Ciara Hulet, this is Top of Mind.