Cochlear Implants and the Continuum of Care: Interview with Donna Sorkin

Brian Taylor 0:09
Hi, everyone, and welcome to another episode of This Week in Hearing. I’m Brian Taylor. And I’m really pleased today to have our guest with us taking time out of her really busy schedule to join us. That is Donna Sorkin, who’s the executive director of the American Cochlear Implant Alliance. Donna, welcome to This Week in Hearing, I’m so pleased that you can be with us.

Donna Sorkin 0:31
Thank you so much for having me. I’m delighted to be here with you.

Brian Taylor 0:35
Well, I really want to know a little a little bit about your background and also what the cochlear – American Cochlear Implant Alliance does. So if you can maybe tackle both of those questions at the get go here, that would be great

Donna Sorkin 0:51
Sure. I actually wasn’t trained in in hearing related issues. I have a Master’s in Public Policy from the Kennedy School of Government. So that’s kind of how I approach this. And I come from a family of people that have had hearing loss, and my dad and my paternal grandmother both had hearing loss, and they both used hearing aids. Not very successfully, my father retired at age 56, because he couldn’t do his job anymore. And I remember him, you know, repeatedly looking for something better so that he could continue to do what he wanted to do. I was lucky. And you know, I, I arrived on the scene when we had cochlear implants available. And I received a cochlear implant in 1992. So I was a real early adopter of this amazing technology, one surgery, and then recently, I received my six sound processor. So I’ve been very fortunate to benefit from the evolving technology and see, first firsthand the changes that have been made. And the fact that this can all happen with one surgery, because so much of what is done to the technology is done on the outside in this process or that people wear so that’s kind of my my background, I got into this, because honestly, at the time, I was starting to do strategic planning for nonprofit organizations. And the organization that’s now called Hearing Loss Association of America was going through a transition, the founder was retiring. And they were looking for a director and I thought, Ah, yeah, four men doing strategic planning, maybe they’ll be interested in hiring me. So I applied, I didn’t think they would hire me, but I thought maybe they would hire me to do it, not to be their director, but to help them do a strategic plan. And they hired me. So that was my first entrance into this field. I’m not sure I’ve told that to people recently. But that’s, that’s what happened. And I stayed there six years. And then I went to the Alexander Graham Bell Association, which, of course, is an organization that focuses on children. And I was there three years. And then I left to focus on cochlear implants. And I went to Cochlear. And was there a bit over 11 years, working on consumer issues, reimbursement, rehab, all the kinds of topics really just what I do now, you know, and I got into that there, it was really an important experience for me in terms of understanding the whole cochlear implant space. And then when this organization was starting up, it really was a dream for me. You know, it was something that some of us had been talking about for a long, long time.

Brian Taylor 4:08
Right, and you’re referring to the American Cochlear Implant Alliance?

Donna Sorkin 4:12
I am. Thank you.

Brian Taylor 4:14
Yeah. Tell us a little bit more about that. Because it’s only been around for about 10 years, if I’m correct.

Donna Sorkin 4:19
We just had our 10th year anniversary. So a number of clinicians realized that cochlear implants fall through the cracks, you know, and all of our member clinicians, and that includes surgeons and audiologists, speech language pathologists, psychologist, educators, people who work with individuals of all ages across the care continuum. In teams, typically, people realize that, regardless of where they were, this intervention falls through the cracks. So they decided let’s start an organization that just focuses on cochlear implants and And that was what they did. And we had talked about it for a number of years. And then finally a group of clinicians got together with support, actually from the cochlear implant companies, gave us some some seed money. And we have a mission statement, that is the same mission statement that we have today, they were really spot on from the beginning to improve access to cochlear implants through research, advocacy and awareness. And that’s still our mission statement. They got it right on the first try.

Brian Taylor 5:34
So I know that you just concluded your annual meeting last week, maybe tell us a little bit about some of the hot issues, hot button issues that were happening at that meeting.

Donna Sorkin 5:46
So that meeting really is a clinical research meeting. And people come with their their research that is always very focused on what the clinical implications are. And so we have some longer talks, but mostly, the meeting are short research talks of about nine minutes. And people share what they’re doing and what the implications are for clinical care out those talks that came out a range of different things, you know, there was a lot of things on outcomes and how we can improve outcomes. In people of all ages, there were some really cool new tools that were actually introduced by the CI companies about planning for surgery and thinking about how we can get closer and closer to normal hearing during the surgical portion of this. So that aspect is explored at the meeting and in a lot of depth, you know, and that was actually the focus of a number of the industry talks. And the companies have time that’s that we call satellite symposium. So it’s, it’s not part of the medical meeting, but they’re very, very well attended. And so there’s that part of it, then there’s a scientific meeting. That’s planned by a program committee of individuals from around the country from different institutions, large and small, universities, non universities, and people with all different backgrounds, and different degrees, et cetera. So so that part of it, there was actually quite a lot on single sided deafness. For example, this time, a topic that we started talking about at our very first meeting just a little bit, and that was the 1990… 2013 was our first meeting. And and I I had in the talk that I did on reimbursement. I mentioned that that was called an emerging issue 2013. And now, we have reimbursement for it. You know, there’s, there’s actually, most people are getting reimbursed for SSD. And it’s because we realize it’s a better solution to single sided deafness than what people had been using some of the other solutions. Were using it. Talking about how the the FDA guideline is not not the best for children, because right now it’s it’s five and under, it really needs to go down to the same age that we use for for children who have bilateral deafness, which is nine months. We talked a lot about the whole issue of how we can combine cochlear implants and hearing aid technology, because people come to this with more residual hearing than they did 10 years ago. And people are encouraged if they, you know, particularly if they’re over 65 we don’t cover bilaterals. So from through Medicare, that is. So we’re really looking to emphasize how the cochlear implant and hearing aid can work together. Well, so a lot of discussion about that.

Brian Taylor 9:13
Let’s talk a little bit about that there’s a couple things I’d like to address with you. I think maybe you mentioned bimodal fits hearing aids combined with a cochlear implant that’s talking about adults. I think, in my experience as a clinical audiologist. I know that that many audiologists out there are maybe a little bit intimidated by cochlear implants. And they don’t realize that the candidacy requirements are quite broad these days. And it’s amazing. The results that a lot of patients get with them. A lot of audiologists think that they’re still hearing aid candidates when there really is a cochlear implant candidate. So maybe from an adult perspective, if you could talk a little bit about access about broadening the candidacy requirements, I think our audience would want to know that.

Donna Sorkin 10:04
Sure. So, very recently, we started a formal process with Medicare to expand candidacy criteria to match the FDA criteria. I shouldn’t say very recently, we really we actually started this about seven and a half years ago with this study. And then Medicare, CMS accepted the study, and recently let what’s called a national coverage determination. And that was that happened on March 1. And what that would do is provide very similar criteria to what the FDA have for adults who are under 65. And what that means is investigated condition, an individual would be a candidate for a cochlear implant, if their Az bio sentences were between 40% and 60% correct. So you can have as much as 60% words in sentences and be a candidate under Medicare. And the reason they they did this was they, that study confirmed that on average, people are going to improve 20 to 25%, above what they’re doing with hearing aids. So it should not be viewed as a last resort, it should be viewed as a way to help someone stay connected. And up until now, the Medicare criteria were no more than 40%. So if we think about someone, an older person, who can only understand 39% 40% of words and sentences, what does that mean in terms of their lifestyle, their comfort level with going out with being involved in social activities with travel with, you know, all the things that we want people to do to stay stay connected. And we know that there’s a positive influence on their cognitive health. There have been there were a number of studies actually, that were presented at that meeting that demonstrated that cognitive health, mild cognitive impairment actually improved in individuals that received cochlear implants, it’s significant to a significant degree. Remarkable, it is remarkable. It’s really important that the audiology community as well as those hearing aid dispensers who are not audiologists who are seeing 50% of adult patients, and we’re working with them as well, to recognize at what point they can help their patients do better. And they won’t necessarily lose a patient because that that individual will will still use a hearing aid on their other ear in most instances. And we encourage them to do that. And the other thing that people I think have thought in the past is, when you get a cochlear implant, you’re going to lose all that residual hearing that you have, and that ear to be implanted. That’s not true anymore. The electrode array is different, that surgical procedure is different. And we are able to preserve a good bit of that residual hearing. And that has changed. When I was implanted in 1992. It was the case that you lost all your residual hearing, I’m totally deaf in that in that ear. But it’s not the case anymore, people retain a good bit of their residual hearing. And so, you know, depending on, you know, where that hearing is, sometimes they actually use a hearing aid along with the cochlear implant, they certainly are going to use a hearing aid in the contralateral ear. And they’re encouraged to do that. So that’s really good news. And that’s really providing people with so much more hearing so much better ability to stay connected in the world, and instead of continuing to decline to improve. And that’s pretty

Brian Taylor 14:01
remarkable. But one thing that we talked about briefly before we started the interview today was you mentioned this concept continuum of care. And I think that’s a great way to frame sort of the process and the journey. Can you talk a little bit more about what you mean by the continuum of care?

Donna Sorkin 14:19
I think what we’re hoping will happen throughout Hearing Health regardless of where someone sits and what their title is, that they will realize that they’re part of all of those solutions to hearing care. You know, a lot of times what happens now is someone who provides cochlear implant care. That’s all they do. But what I’m seeing in some instances like Georgetown University I visited recently, and their audiologists actually do both. They fit hearing aids and they work on cochlear implants. So that’s really great because it makes that person Be familiar with someone, they’ll be in a position to say someone, well, you’re not a candidate right now. But if your hearing gets worse, you will be a cabinet. And we can start talking about it at that point to ensure that you’re continuing to hear the most that you can hear concept like whether somebody is sitting in a clinic that provides cochlear implants, or whether they’re in a private practice that doesn’t, they should be thinking in those terms, in terms of, you know, what, what can we provide to provide someone with the best that they can hear, and also help I think, mentally, you know, where I used to work, right, we talked about assistive listening devices a lot, you know, and so that’s part of the conversation to what regardless of what device you have, it’s everything that helps that person maximize their communication abilities.

Brian Taylor 15:54
Well, and I think it’s an exciting time for for professionals and for consumers as well, because you have non custom amplifiers, over the counter devices, you have implantable solutions, even pharmacological agents potentially down the road. And all of that, I think, is part of the continuum of care concept that you’re talking about. So I think it’s good for everyone to know that that’s happening.

Donna Sorkin 16:20
And it’s also good for them to know that, that they’re part of all of those solutions, that it’s not the people that do cochlear implants are over here, and that people that to hearing aids over are over here. I mean, what we’re really trying to do as an organization is welcome them in. And I was pleased that we had some hearing instrument specialists that came to the meeting. And we have a collaboration with with that organization as well, we have provided free memberships to them. And we are very happy when they invite us in to come to one of their state meetings and present. So I think that’s something we’re we’re really excited about is is working everyone who’s involved in hearing healthcare, so that we’re supporting each other enough so that it’s not one group over here, another group over here. Yeah,

Brian Taylor 17:18
yeah. Let’s talk a little bit about the other end of this of the age spectrum, infants and children, what are some of the latest developments around cochlear implants when it comes to the pediatric population?

Donna Sorkin 17:31
Yeah. So you know, I think that the greatest thing that happened was when the FDA changed the age to nine months, so that we can get children into this process. at that early age, we still have some challenges with some insurers who mess around with the nine months. Sometimes it’s Medicaid. In some states, of course, Medicaid rules are decided state by state. So in some states, they’ll say, Well, you can’t even put the paperwork in until the child’s 12 months. So that means by the time that kid gets it they’re 18 months, and we have seen differences and how well children do when they’re implanted early. In some clinics, if if the child has no risks, they will implant under nine months. And no, they will do that as an off label and get authorization from the insurer to do that. It’s it’s much more typical now for if a child has meningitis. And we want to get the implant in very fast before we see ossification of the cochlea. It’s much easier to do that now. Because it’s more routine to implant these younger children. You know, and I think the other thing that we’re seeing is use of implants in children who have single sided deafness, which is something we didn’t do years ago, we still have a problem with the FDA guidelines for SSD starting at five years of age. So that’s something I’ve had discussions with the FDA about, we we were part of a workshop that the FDA put on in early May. And that was something that our clinicians really talked about a lot, you know, we really, we try to impress upon the FDA what a problem that was to not be able to put a CI on a on a child who’s single sided deaf until they’re five years of age. So that’s a challenge at because it’s such an opportunity, if you if you in fact can get that implant on there. We’ve been we’ve been looking at single sided hearing loss in children with mild to moderate hearing loss for 20 some years. Fred Bess did research on this years ago and there was that research that he had done that showed that children who have an untreated mild hearing loss have a 1/3 chance of failing one grade. So we’re talking about a child with with a mild unilateral hearing loss. And, and may have a significant impact on their, you know, and their educational attainment. So, for a child who qualifies for cochlear implant, oh, my goodness, you know, obviously, there’s going to be a big impact. There’s all kinds of issues that they, that they have. And we know that children with SSD who get a cochlear implant don’t necessarily do as well as children who have bilateral deafness. But they get a lot of other benefits, they hear better noise, they have improved directionality. And they still get about typically 30 to 40% words and sentences. So it’s not, you know, as dramatic as what we see in children with bilateral deafness. But it really does improve them. And I think there’s been a change of thinking in a lot of our audiologists, and surgeons about the importance of, of looking at SSD and children and using this as an intervention for that population. And there were a lot of talks on that. So that was, you know, that that’s a big important issue that that we’re looking at. And there are some clinics that do this routinely. Nancy Young, who’s been doing cochlear implants for 30 years in Chicago, at Lurie Children’s routinely does surgeries for children with SSD. And she’s, she’s one of the one of the ones that has really pushed on it. So we have a lot of leaders like that. And what’s really great is they’re they’re all together in this one place. And it was such it was so great for them to be, you know, back together again, last one,

Brian Taylor 21:49
it is a really unique organization, because it cuts across so many different special specialties. So it’s kind of a, it’s a unique organization. In that sense, I think in our profession, at least,

Donna Sorkin 22:01
it is and what’s more also is important is that they are most of them are active in their other organizations. So they take what we do at the American cochlear implant Alliance, and then back to AAA or ASHA, or AAO and work on it with their colleagues, as well. And so that, you know, we don’t take people away from the organizations that they’re I mean, it’s a, it’s an on his own, he’s going to add, you know, and we work closely with those organizations as well. And we had representatives from all of the big ones, at our, at our meeting last week, we invited them to come they did come, they participated. And so that’s another important advantage, I think of, of what we do, we have grown organizationally, we have almost 2200 members now, when I came and started in 2012, we had, I think, 100 members. So that’s been exciting. And we’ve also added consumer and parent members, not necessarily to come to a meeting like this, because it’s this is a science meeting, but to work with us on public policy, particularly, to be advocates, to tell their stories, when we when we need them to do that. So that’s sort of a new area that we pushed into, so that we also have that group that’s part of the organization is interacting with us. We have a parent member of the board, we’ve always since I’ve come we’ve always had a parent member of the board. And that’s, you know, that’s that’s a really important aspect. We have a surgeon who has a cochlear implant who’s on the board. So I think organizationally, we really try to incorporate the recipient community in in the meeting and there are there are surgeons and audiologists that have cochlear implants, or they come to the meeting

Brian Taylor 24:08
right no, it’s great to see. I also noticed that in the new MarkeTrack 2022, from the hearing instrument associations that they had cochlear implants now are being tracked by them, which is kind of good to see. For the first time, I think in 30, some years of looking at hearing aid, ownership and opinion of hearing aid users now there they’re taking cochlear implants into consideration, which is really, it’s good to see the broader support.

Donna Sorkin 24:36
That is great. I agree.

Brian Taylor 24:39
So if any of our listeners are interested in learning more about the American Cochlear Implant Alliance, can you tell us how to get in touch with you your website?

Donna Sorkin 24:51
Sure and and it’s important to know that our website actually is designed for people that are outside of cochlear implants. And we design it that way. It’s designed to be a resource for people in hearing health, primary care and then the general consumer community. And our website is www.acialliance.org. And we actually have portals for people with different interests. So there’s a parent portal and an adult portal, there’s hearing healthcare portal and a primary care portal, we get a lot of calls from primary care physicians who want to know more about it, but the candidacy is we have a big map that has our organizational members on it. So if somebody can click on that, and see it off state by state where there’s a CI clinic, because remember, this isn’t an…this isn’t something where you could just walk it in to any clinic, it’s a specialized center that has, typically physicians and audiologists they are, if they’re doing children, they also have an SLP. They often have psychologists and social workers. And sometimes they have a teacher of the deaf that’s on the staff. So it really is a team approach to this medical intervention. And so we, you know, we the teams come together, they come to our meeting, and the whole team comes. So that’s, you know, that’s also pretty cool. But the other thing we have is a Facebook page and a Twitter page, you have a LinkedIn page. So we use social media quite a lot. And we’d love for people to follow us on that. And then recently, we started a new publication that’s free, that’s for anybody that wants to sign up, it comes out once a month, it’s electronic, it’s called Listening. And so it comes out usually the first week of the month. And you can sign up for that by just going on our website and filling out a form. We don’t ask you to pay anything you don’t. If you want to become a member, we welcome anyone to be a member, but you don’t have to be mainly we just want to communicate, we have about 7000 people that follow us on Listening. So a really great following of people from you know, all over the place that just want to know more. We welcome veterans to come in and be part of the organization and we have that are in stories that are on the website, we find that veterans want to see the stories of other veterans. And so we actually interviewed a number of veterans about their CI experience, both through the VA and not through the VA. So those stories are are on the site. We think that that’s another important aspect

Brian Taylor 27:49
Yeah, no, that’s good to know. Any final words of wisdom for our viewers out there? The people out there that are working in the hearing care professions What do you think they need to know, when it comes to cochlear implants?

Donna Sorkin 28:04
I want them to know that this is not a last resort. I want them to encourage their patients to get evaluated, if they’re struggling with their hearing aids. And in general, that evaluation is covered by insurance. And even if someone isn’t a candidate today, we find that people always indicate that they appreciate the information. They appreciate knowing that down the road, if their hearing deteriorates that they have another solution that will allow them to stay connected. So rather than saying to someone, I have one more hearing aid for you, and so what is is only getting 35% of the words and sentences instead of saying I have one more hearing aid if they’re profound, and the only getting 35% of words in sentences. They’re probably a candidate. You can really help your patient by telling them where to go to get an evaluation done. I can guarantee you that that patient will never forget their hearing care provider for doing that I I talk about the audiologist that sent me on for an evaluation all the time. And I she gets patients in all the time who have heard me talk about Susan. And she did it in a very gentle and appropriate way when I wasn’t doing very well with my high tech hearing aids at the time. She said I’ve done everything I can for you and you’re still not doing very well. So I really think you should explore this. And that’s all she did. She told me patients that I could talk to and she was there to support me all along the way. And I have never forgotten that. And I think it meant a lot to her that she contributed To what happened to me to be just an extraordinary intervention and extraordinary ability to contribute in different ways to this field to travel all over the world and help people learn more about cochlear implants. So, I to that I owe Susan, I may, I would have done it at some point, but she got going on it sooner. So that’s what I would say, everyone listening.

Brian Taylor 30:25
That’s a great story to end on. Thank you. Donna Sorkin, Executive Director of the American cochlear implant Alliance. Thank you very much for your time. We really appreciate it.

Donna Sorkin 30:37
Thank you, Brian, for having me. I enjoyed being here with you.