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BUFFALO IMPLANT GROUP MEETING

HELD
MAY 21, 2008

2 >>: (JOE KOLIS): Good evening, everybody. We'll go
3 ahead and get started if you could take your seats.
4 We gave everybody a few extra minutes to find a
5 parking spot that's nice and close now that it is raining
6 on top of being cold and windy.
7 My name is Joe Kolis and I'm the President of B.I.G.
8 Now I wanted to introduce the officers and the board
9 members that are here.
10 Kathy Maroney is in the purple over here.
11 Lisa Hill-Nowicki is our secretary over here.
12 Dawn Kolis, my wife, we're having some sitter issues
13 tonight so she can't make it.
14 And I want to introduce Craig and Jackie Carpenter
15 who put a lot of time and effort into our newsletter.
16 And Gail couldn't make it here today, she has some
17 sitter issues herself.
18 Before we get started I just wanted to go over
19 a brief agenda.
20 We had our 5K race for Grace Lutheran Church back in
21 March. It was a huge success. We had over 135 runners.
22 The church donated a lot of money for our services.
23 They'll go toward our CART services and our newsletter
24 and postage.
25 We are happy with the turnout and this is a


2 reminder that August 3 is the next race at Grace
3 Lutheran. B.I.G. is not going to get any of the proceeds
4 from this race, but because it was so successful and they
5 were really appreciative of our being involved, we're
6 going to once again volunteer our time for registrations.
7 We had some baskets that we raffled off for
8 some traffic control, and for the August 3 race we're
9 going to put five baskets together. We made about $400
10 on those baskets, so we're real happy with that. The
11 church is going to let us do that again so we're going to
12 put our baskets together.
13 For our picnic on July 20, we're asking everybody
14 that comes to the picnic to bring a school supply —
15 whether it's markers or backpacks — anything that you
16 would like to donate. We're going to put a school supply
17 basket together and that will be one of the baskets that
18 B.I.G. will donate.
19 If anybody else is connected to the Bisons or the
20 Bills or a restaurant and they could get a gift
21 certificate, it would be really appreciated. If you
22 could ask them for a donation and get it over to us.
23 The race that's going to be designated for the
24 portion of the proceeds for B.I.G. is November 22 and
25 again it's going to be same format: 5K race in the


2 morning. And for those of us that were there, it was a
3 lot of fun to do this. The weather was beautiful. And I
4 encourage you to take an interest and maybe volunteer
5 this time.
6 The picnic date, July 20 is the date. Again it's at
7 Westwood Park in Lancaster. Please put it on your
8 calendar and join us. It's always a good time.
9 I did get an e-mail from Advanced Bionics where they
10 came out with a news release regarding an FDA intent to
11 fine them for some of their quality control going back
12 five years. I did print it out.
13 Tina Childress addressed my e-mail and I'm asking
14 her for some further clarification. Once we get that
15 we'll put it in the newsletter or an e-mail. I'll hand
16 this out in a minute.
17 I did want to call your attention to the second
18 annual black tie celebration at Buffalo Hearing and
19 Speech honoring Gretchen and Gordon Gross at the ECC City
20 Campus on May 3 for those of you who would like to
21 attend. All the information is on the Buffalo Hearing
22 and Speech website
23 >>> Is it May 3? It's already passed.
24 >> (JOE KOLIS): May 21.
25 We can go and get on with the program. This is


2 about cochlear implant reimbursement and navigating the
3 reimbursement maze. We have a couple of speakers. From
4 Cochlear we have Drake Jackson, and Lisa Lamson is in the
5 back who is out of Syracuse. And we really appreciate
6 them both coming in. I'll turn it over to them.
7 >>: (DRAKE JACKSON): Good evening everyone. Can you
8 all hear me well?
9 I wear a Freedom implant on my left ear and I have
10 an Otocom Sumo on my left ear. I grew up with hearing
11 loss so I know the problems that you might be having. So
12 if I speak too fast, tell me to slow down; or if I am not
13 speaking loud enough, just kind of cup your ear and I
14 will try to get the attention of you.
15 But first of all, I would like to thank Craig and
16 Joe for inviting Lisa and myself out here. I'm from
17 Cincinnati, Ohio and Lisa is from Syracuse as Joe said.
18 So I come a long way from home right now.
19 I met Craig for the first time last night with his
20 wife, Jackie and he told me a little bit about the
21 history of this group. And I'm actually kind of honored
22 to be here just because it's just really an amazing
23 group, what's done.
24 You're pioneers of a sort being one of the first CI
25 implant groups out there and you helped a lot of


2 candidates who've become recipients. I've only been a
3 recipient for two years.
4 So I applaud all that you do to help others with
5 hearing loss because it's a different challenge living
6 with that. So I thank you for being here and helping
7 others.
8 Now a little bit about myself. I am an awareness
9 manager with Cochlear Americas, and what that is: I am
10 an advocate for consumers. And what I do is I manage a
11 team of volunteers — Craig is one of them — and these
12 volunteers in my area are scattered throughout Michigan,
13 Ohio, Kentucky, West Virginia, Pennsylvania except
14 Philadelphia, New York except for New York City, and the
15 Albany area. And what this network of volunteers do is
16 they support candidates and recipients. I'm sure Craig
17 has helped many of you out here.
18 And an example would be: I had a woman who lived in
19 Toledo, Ohio and she contacted Cochlear. And she was a
20 candidate for a CI and she wanted to talk to a recipient.
21 So I am contacted and notified. And she wanted to speak
22 to a recipient who was a woman who lived in Toledo who
23 was in her mid-40s. That's kind of a hard thing to match
24 up, but fortunately I had three volunteers in Toledo.
25 One was a man, one was a parent of a recipient and one


2 was a woman who was in her 40s and lived in Toledo.
3 So it's great how all of you as candidates or
4 recipients help others and get us through the process. I
5 didn't have any of that support group and I wish I had.
6 I've only been at it two years. But in Cincinnati we
7 didn't have that kind of support. So again I'm envious
8 of how you have this whole network that all of you have
9 created. That's a great thing.
10 Lisa Lamson, who is sitting in the back, is
11 territory manager for Cochlear Americas. And she covers
12 Western New York and she handles the business angle with
13 the centers and the hospitals and any issues that might
14 come up with that.
15 I am not an expert on insurance; I handle consumers.
16 A year ago I was an architect. And Lisa is not an expert
17 on insurance, but she knows a little bit more than I do.
18 So I'm glad that she's here, so anything I can't
19 answer she might be able to fill in. Particularly like
20 with Medicaid, because Medicaid is more State-directed
21 and she might know what's going on in New York and so on.
22 So tonight's topic is cochlear implant
23 reimbursement. I'm going to show you some of the slides,
24 then we can go into an open format. If you have specific
25 question about insurance, hopefully Lisa or myself will


2 be able to help you with that. But I'll go through the
3 format for now and then we can come back and go to
4 question and answer.
5 Just out of curiosity I'm wondering how many of you
6 are CI recipients.
7 So how many of you are bilateral recipients? I'm
8 curious because I only have one.
9 Can you hear me? Do we have any candidates out
10 here? We have one candidate, okay.
11 I want to know what audience I'm talking to about.
12 Do we have any professionals?
13 >>>: Speech pathologist.
14 >>: (JOE KOLIS): Okay. Thank you.
15 >>>: Parent of a daughter that has both the 22 and the
16 Freedom bilateral.
17 >>: (DRAKE JACKSON): Okay. Well, that's great. It
18 just gives me an idea what the mix is and what kind of
19 audience I'm working with and so on. The more there are
20 recipients and candidates, the more they're my family.
21 If it's all professionals, then I get a little leery
22 because I don't have the background that they do.
23 So I'll tell you a little bit about my process of
24 going through the insurance maze. First thing: We all
25 know what we go through trying to figure out whether


2 we're a candidate or not. So the first thing we do is we
3 go to an audiologist and he or she does some testing to
4 find out whether you're a candidate. And if you pass the
5 speech recognition test and the other tests that they do,
6 then you probably go to a CI surgeon and he or she will
7 evaluate you. And if you pass that evaluation, then
8 you'll go through the CAT scan. That's how it worked for
9 me.
10 Then I had to go through the insurance process. I
11 ended up doing that myself because nobody told me that
12 the hospital or someone handled it.
13 And so I called my insurance company which was
14 Humana. And, I was kind of naive and I told them I would
15 like to get a precertification letter for a cochlear
16 implant. And they had no idea what I was talking about.
17 So I made the mistake of telling them it was a
18 hearing device and they automatically said no, "because
19 we don't cover hearing devices at all."
20 So I called my hospital and my audiologist and she
21 said, "It's not a hearing aid. It's a prosthetic device,
22 it's an implantable device; it's not a hearing aid."
23 So I went back and called Humana and I explained
24 that. And we went back and forth for a while and
25 eventually I got their approval of that.


2 And they sent me this letter and the letter at the
3 time was very vague. It said "Well, we're not sure what
4 we'll cover until after the surgery and we see the
5 bills." I kid you not. They weren't clear what they
6 would pay.
7 The moral of the story is to get it in writing
8 before you go into the surgery.
9 So I asked for more clarification and they gave me
10 two responses. They didn't know whether they would pay
11 the first 80 percent and I would pay the next 20 percent.
12 So for me that would be a $17,000, 20 percent fee that I
13 have to pay for out of pocket. The other option, they
14 said it might be a maximum deduction which is $1,600.
15 So I needed help on this. I was fortunate that I
16 had a human resources department there. So if you get
17 into a situation, go to human resources. That is one
18 avenue that you can look for to ask for help.
19 And the woman there, I showed her the letter and she
20 laughed because there wasn't any clarity, because I was
21 either going to be paying $1,600 or $17,000 out of
22 pocket.
23 But eventually we worked it out and I end up paying
24 $1,600 out of pocket. But I had to get it in writing and
25 it took a couple of months to go through this process.


2 So I'm sure many of you have your own stories and
3 might be able to share them later, some of the horror
4 stories.
5 So the insurance process was the most difficult part
6 for me.
7 So I'm going into a bit of our program. At Cochlear
8 we have a three-prong strategy. If you get a denial and
9 so on, every company — whether Med-El or AB — they have a
10 reimbursement department.
11 At Cochlear we have three services there. One of
12 them is OMS. Which is if you get a denial and so on, it
13 will support the candidate in terms of finding the
14 resources and means to either appeal that denial or give
15 you direction on how to follow through with the insurance
16 company.
17 The billing service has to deal more with the
18 Medicare and Medicaid.
19 And then we have the consulting field staff. They
20 go to the audiologists and help them pave the way to
21 getting the approval through the insurance companies.
22 Would you say that's correct, Lisa?
23 >>: (LISA LAMSON): That's actually Joan and Thomas.
24 >>: (DRAKE JACKSON): She said actually it wouldn't be
25 Lisa; we have a person who is a reimbursement specialist.


2 It would not be Lisa who would be going to do that.
3 So we have the field staff, we have a reimbursement
4 specialist that can help the centers get approval for a
5 candidate.
6 I'm going to go into a little bit about bilaterals
7 and some of that applies the same as unilaterals.
8 Bilaterals, you're seeing more and more of them
9 happening. They're becoming the standard of care. I
10 know that Craig has one and I believe somebody else out
11 here said they had bilaterals.
12 And I had bilateral hearing aids at one point and I
13 remember that I performed much better bilaterally with
14 hearing aids than I did with one.
15 But the insurance companies are being more receptive
16 to the bilateral cochlear implants. Some of that is due
17 to the corporate revisions and the policies and some of
18 it is due to advocacy groups like yourselves and the
19 reimbursement departments of various companies.
20 So the more that we see implants happening and the
21 more that we see advocacy groups and reimbursement
22 departments keep pushing it, we start setting precedents
23 to get more insurance coverage. So it's not as foreign
24 as it was for me two years ago what a cochlear implant
25 is.


2 Some insurance companies like Blue Cross/Blue Shield
3 bilateral implantation is now standard care. We have a
4 few that are listed: Wellpoint and the Anthem Network.
5 It varies from state to state.
6 I already mentioned the success largely based on the
7 cumulative efforts of all the work that we do, the
8 advocacy groups and so on. And part of that is just the
9 education that we do with educating the insurance
10 departments.
11 Just recently we had Aetna and Cigna that have
12 changed their policies to cover bilaterals and cochlear
13 implants. That's a win for all of us. Some of it is
14 just the multiple appeals. Any time you go to legal
15 cases, that helps to keep moving the process forward.
16 Patient and family involvement are key in this. It
17 helps. If it's just the legal people and the medical
18 profession trying to appeal the case, it doesn't have
19 that personal connection. But when you bring in a parent
20 with a child and they have to be there, it's really hard
21 to say, "No, I don't think your child should have an
22 implant."
23 So it's different. If you understand the emotional
24 basis that's going on there, it's really important that
25 you get the patient involved in all this.


2 Problem payers: United Healthcare. Someone said,
3 "There's not enough clinical evidence," or Humana, "It's
4 still an experimental procedure." So the efforts that we
5 have to go through now is to try to convince them of the
6 benefits: In this case bilateral cochlear implants. I
7 got mine from Humana, but it took a lot of work to get
8 that change for me. But just like myself, when Humana
9 accepted my implant, that just sets the groundwork for
10 more implants.
11 What can we do to address the problems? Already
12 talked about the advocacy groups and the importance of
13 the patient's plan and role in trying to have the
14 personal connection. We also have the manufacturer's
15 resources. Each one has their insurance support systems
16 and we have OMS at Cochlear.
17 Medicare, the issue is trying to get a standardized
18 bilateral language or the language of cochlear implants.
19 And you can find that in some of the Medicare and the
20 Medicaid and also some of the other insurance companies,
21 it's just getting a consistent coverage policy.
22 And so if you're looking to get an implant, you need
23 to go through your coverage policy and the benefits there
24 and see what the wording is there and become fully
25 informed with what that policy is.


2 Medicare and bilaterals: The case is that they will
3 pay 150 percent. On the second one they will pay only
4 half. And some of the issues with that is that the
5 hospitals have to cover some of that. So some hospitals
6 might be reluctant to take that financial hit of making
7 up the difference that Medicare won't pay for, and
8 somehow they balance it out between those that are
9 payer-mixed and Medicare.
10 We've already talked about some of these already in
11 terms of financial risk to the hospital and so on.
12 Medicaid, it can vary from state to state and each
13 one has their own policies. So in New York, I don't know
14 what it is.
15 >>>: They do not.
16 >>: (DRAKE JACKSON): They do not cover?
17 >>>: No.
18 >>: (DRAKE JACKSON): I can't help you with that one.
19 There are certain states, one is Michigan or others,
20 they will cover. Obviously we've got that answer there.
21 This is information that goes more to like
22 clinicians or so on, but it's good information to
23 understand what the insurance companies are looking for.
24 So as much information as you keep in your records to go
25 after the insurance companies, the better off you will


2 be. Like the smallest piece of information that's
3 missing can trigger a denial, and that can be just simply
4 by saying it's a hearing aid or a hearing device. So
5 that will trigger a denial there.
6 Follow all your conversations with whoever you talk
7 to. That means getting the name of who you talked to and
8 the date in which you talked to them.
9 So as much information as you can capture, that's
10 great. The more people that you have involved — whether
11 the medical community and the audiologists and the legal
12 community — the better off you will be.
13 As I said before, involve the patient. The child's
14 presence will help tip the scales in your favor. And
15 same thing with a patient who is suffering.
16 Some key points — and I've gone through this — we've
17 seen the cochlear implants, and bilaterals as well, that
18 the reimbursement landscape is starting to get better and
19 better.
20 The insurance, the private payers, we see that
21 getting better accepted and they're buying into that
22 program, especially with bilaterals. So that's a good
23 thing because I would like to get bilaterals. When I
24 first went in two years ago, bilaterals wasn't even
25 brought up to me at the time. I mean I don't know if


2 Cincinnati is just a backwater or something, (laughter),
3 but it was never brought up to me at the time. It may be
4 that that was just what it was in my area. It does make
5 sense for me to have two and I want two.
6 A lot of these things are the same points, regarding
7 patient involvement.
8 Have passion, that's probably one of the bigger
9 things. If you get denied, don't give up. Some places
10 they want you to give up. They turn you down and figure
11 you won't fight it. The more you keep pushing, you come
12 back, they might come back and give it to you the second
13 time. I've heard people go through it ten times before
14 they got it approved. It seems like a lot to me, but
15 that's what I've heard.
16 So the more you can believe in how important this is
17 to you, the better outcome you can have.
18 I don't know if anybody has any questions. The
19 floor is open to any kind of questions we could have.
20 Lisa can answer some of the questions and I can answer
21 some of the questions as well and we can find out what
22 people are thinking out there.
23 We have a website: WWW.Cochlear.com. There's a
24 website and if you go into the support section, there is
25 a list of frequently asked questions, and there are


2 numbers there that you can look into to find out more
3 about insurance and how you can be directed in the right
4 area: The reimbursement department and so on.
5 So I'm sure all the other manufacturers have
6 something similar where you can go in and find out how to
7 best get the coverage that you need to get a cochlear
8 implant.
9 So I'll open the floor to any questions that people
10 might have. What I will do is if you have a question, I
11 will repeat it to the audience so that they can hear what
12 it is, assuming I can hear what the question is
13 (laughter).
14 The bilaterals, did you have any issues with your
15 insurance?
16 >>>: No, because my wife works for a doctor's office.
17 She knew how to talk to them.
18 Really, the relationship between the doctor's office
19 and the insurance companies can make the difference.
20 I don't know how many of you knew Dr. Diaz-Ordez,
21 but he's very, very proactive and he did a pretty good
22 job.
23 >>: (DRAKE JACKSON): His wife works in a doctor's
24 office so that's how he was able to get the coverage that
25 he needed to get the bilaterals.


2 >>>: My wife, she knew how to talk to the insurance
3 company and that matters.
4 >>: (DRAKE JACKSON): That's an important thing. She
5 knew how to talk to the insurance company.
6 And so when I went to the insurance company first, I
7 didn't know how to talk to the insurance company. That
8 made all the difference in terms of getting that done.
9 >>>: I first went to my old audiologist who I dealt with
10 for hearing aids, and he's the one that said I should be
11 a candidate for a cochlear implant. He gave me the
12 number for the surgeon who performs it: Dr. Diaz-Ordez.
13 Then I got hooked up with him, then he hooked up
14 with my insurance company, hooked me up with Hearing and
15 Speech, and that's how the ball got rolling with me.
16 But had it not been for him to get it rolling --I
17 never even went to the insurance company. I was like up
18 in the air, wondering if they were going to be paying or
19 not.
20 But he's the one that started it all and that's how
21 I ended up getting it.
22 >>: (DRAKE JACKSON): He didn't have to go through what
23 I went through. His doctor handled all the paperwork and
24 the insurance process. So he never even had to go into
25 that at all. It worked out beautifully for him.


2 And you didn't get denied or anything like that?
3 >>>: They accepted it as long as everyone was in
4 agreement.
5 When you become a candidate for cochlear implant,
6 it's not something that you can just say, "Well, I want
7 to get one" and that's it. It's a long drawn out
8 process.
9 First you got to get the okay from your doctor, go
10 to your audiologist, talk to a whole bunch of people.
11 It's a big process before they give you the okay.
12 By the time you get the okay, then they go after the
13 insurance company. At least that's how it was for me.
14 >>: (DRAKE JACKSON): Can I ask you how long it took
15 from once you decided, the insurance process took?
16 >>>: Probably a month.
17 >>: (DRAKE JACKSON): He said it took within a month.
18 >>>: Three to four weeks.
19 >>: (DRAKE JACKSON): Okay.
20 >>>: I'm one of the people who was implanted in
21 Rochester, most of these are Buffalo people, but there
22 are other Rochester people.
23 >>: (DRAKE JACKSON): She was implanted in Rochester.
24 >>>: And that was ten years ago.
25 And recently I contacted our surgeon about a


2 possible bilateral on the other side. And the first
3 words out of his mouth — and I mean the first words out
4 of his mouth were — "We got to see about your insurance
5 before we talk about anything."
6 So we had no difficulty really.
7 Do you want me to stand up front?
8 >>: (DRAKE JACKSON): No.
9 >>>: We had no difficulty the first time around really.
10 One thing that was not mentioned here was, yes, you
11 can get the surgery, but you're having audiology for the
12 rest of your life. So this is something to consider
13 also: How much of your mapping will be covered.
14 Anyhow, this worked for me ten years earlier. And
15 I've gotten older and I've come under Medicare and this
16 is a whole different ball of wax.
17 Could you talk a little more about Medicare?
18 >>>: I got a question. What health care did you have in
19 Rochester?
20 >>: (DRAKE JACKSON): The question was what health care
21 did you have in Rochester.
22 >>>: What?
23 >>: (DRAKE JACKSON): What health care?
24 >>>: Who was my insurance company?
25 >>: (DRAKE JACKSON): Yes.


2 >>>: Empire Plan at the time which is New York State
3 government.
4 >>: (DRAKE JACKSON): That was a private insurance
5 carrier, right? That was a private insurance company for
6 the first implant?
7 >>>: Well, it would be I think one of your problem
8 payers as a matter of fact.
9 >>: (DRAKE JACKSON): Now Lisa can confirm if I
10 understand this correctly, because the first implant was
11 not paid by Medicare, because it was done prior, that
12 Medicare will pay for the second one.
13 >>: (LISA LAMSON): Can I talk a little bit?
14 >>: (DRAKE JACKSON): Yes.
15 >>: (LISA LAMSON): It's a little bit of a gray area and
16 that's a problem when you have one implant done by
17 private insurance and then you become eligible for
18 Medicare, but it is certainly possible. It is certainly
19 possible and so it's worth pursuing.
20 Something that I want to just add about Medicare in
21 general and bilateral implants is that because it is very
22 unclear in their language what they cover and what they
23 don't, Cochlear does not recommend to any center to
24 implant a patient bilaterally under Medicare because we
25 have no idea if any hospital is going to get paid for


2 that or not.
3 The only thing that we can report is what hospitals
4 are doing on their own and what risks they're taking and
5 what they're getting reimbursed from Medicare. So it is
6 not an official stance of Cochlear that Medicare covers
7 bilaterals. We have no idea if they do or do not. Does
8 that make sense?
9 There are hospitals that have been paid by Medicare
10 for bilaterals, typically it's at that 150 percent that
11 Drake was talking about. So they're not going to get
12 paid for billing for both ears, they're going to get paid
13 150 percent of the total charges.
14 So again the hospital has to be willing to basically
15 eat those charges that they're not reimbursed for. And
16 there are some hospitals out there that are willing to do
17 that, but they're going to be few and far between.
18 Now the other part about the Medicare picture is if
19 you have a secondary insurance, that becomes very useful
20 because the hospital can actually get an authorization, a
21 piece of paper saying, yes, it's covered from that second
22 insurance and then you're home free. So that's a perfect
23 situation.
24 >>>: If you have both, you have a chance.
25 >>: (LISA LAMSON): A better situation.


2 >>>: It's cheaper with a secondary insurance.
3 >>: (LISA LAMSON): Okay. The other thing that I wanted
4 to mention not related to Medicare is that we're starting
5 to hear about people with private insurance having
6 written into their insurance policies a cap, a lifetime
7 cap, on cochlear implant expenditures. And that speaks
8 to what you were saying about how much are your mappings
9 going to cost for the future.
10 So this might automatically disqualify some people
11 for bilateral cochlear implant if they've already reached
12 whatever that X dollar amount cap is.
13 This is an unfortunate possibility and it's
14 something that we're just starting to hear about, but it
15 is reality. So we have to kind of watch and see what
16 happens with that. But it may be that with some
17 insurance policies, once you reach that limit, you may
18 have to pay for your mapping sessions above and beyond
19 that. But again it's just something that we're just
20 starting to hear about.
21 >>>: I woke up one morning and I couldn't hear nothing.
22 I went to my audiologist and I thought my hearing aid was
23 broken. It wasn't. So she made an appointment with
24 Dr. Diaz-Ordez and I went to see him. And he looked me
25 all over and he says you got two choices: "Stay deaf or


2 go for a cochlear implant." I said, "Let's go to the
3 cochlear implant."
4 One month afterwards, he called me in the office.
5 He said, "What ear do you want it in?" I said, "What?"
6 He said, "What ear do you want it in?" I said, "Who's
7 paying for this?" He said, "It's all paid for, don't
8 worry about it."
9 I said, "Fine. Put it in." So he put it in.
10 Now on the mapping, my insurance pays that as a
11 regular office visit, not as a major medical position.
12 >>: (LISA LAMSON): Did everybody hear what he was
13 saying about how fast his -
14 >>>: 31 days.
15 >>: (LISA LAMSON): 31 days.
16 >>>: He called me back, said, "What ear do you want it
17 in?" He said, "We're ready to go pick an ear."
18 >>>: When you're talking about capping, that capping is
19 for the one year though. So it's up to a certain amount.
20 >>: (LISA LAMSON): Lifetime.
21 >>>: A lifetime?
22 >>: (LISA LAMSON): Lifetime. This is what we're
23 hearing, there's a lifetime cap on the cochlear implant
24 related services.
25 So it's certainly something for those of you that


2 have private insurance. If you have open enrollment with
3 your company or something like that, it's certainly
4 something to look at to make sure that you don't have
5 that.
6 >>>: We have Independent Health and we have so much per
7 year and we can't go over. And anything we go over, we
8 have to pay for. The next year it goes back down to zero
9 again.
10 >>: (LISA LAMSON): That's much more common, for all
11 your medical care that you have a per year cap and then
12 you start having to pay.
13 >>>: What's going on is the hospitals get this device,
14 right? And they are the ones that make out the bill.
15 They know what the Medicare approved amount is. So they
16 jack that bill right up to the approved amount, and maybe
17 above that, so that by the time they get the money, they
18 actually got what they wanted.
19 >>: (LISA LAMSON): That's absolutely true. Every
20 hospital has something that they call a charge master and
21 they absolutely inflate all of the billing costs, because
22 they know that Medicare has a very convoluted process of
23 then reducing it. And believe it or not, Medicare rolls
24 back charges to something like 1972 costs and then they
25 bring it forward and it's a crazy process.


2 But hospitals do know what they're doing when they
3 bill.
4 >>>: That's why you wind up getting almost nothing.
5 >>: (LISA LAMSON): That's why you're shocked if you
6 actually see the charges from your surgery.
7 >>>: You talked about a cap. If they put a cap in and
8 your insurance only covers that cap, what if all the
9 insurances were all set at this cap? What will they do:
10 Do away with bilaterals, do away with cochlear implants
11 and is that what will happen?
12 >>: (LISA LAMSON): That's the problem. And I think
13 that it's something again that we've just heard a little
14 bit about and we need to watch. And our advocacy
15 programs and all the implant companies' advocacy groups
16 will absolutely fight that with patients' help because
17 it's not a good thing. It may exclude people.
18 >>>: What would be the reason to --with all the
19 progress --now I mean, look, from the very first
20 cochlear implant so many years ago, to where they've come
21 to now, can you imagine what it's going to be like in the
22 next 20 years? There's not going to be anything sticking
23 on the side of your head; it will be all buried in a
24 miniature tiny thing, a devise that will last four or
25 five years before you have to change the battery. It's


2 possible.
3 >>: (LISA LAMSON): Anything is possible.
4 >>>: The bottom line is this: Why would they ever want
5 to stop? Something that is progressing at this rate and
6 they're going to put costs above caps?
7 >>: (LISA LAMSON): Sure. You're speaking to the choir.
8 >>>: What do they do; just stop and that's it, that's as
9 far as they go? I don't think so. There's too many
10 people involved in this thing.
11 >>: (LISA LAMSON): We'll just have to watch it and see
12 what happens.
13 >>>: I doubt like hell they'll ever stop it. It's too
14 powerful.
15 >>: (LISA LAMSON): Yes.
16 >>>: You should run for President. (Laughter).
17 >>>: I had a question though. Being as young as I am
18 and if I were to quit my job and get another job, would
19 another insurance carrier come in and cover the Cochlear?
20 >>: (LISA LAMSON): Quite possibly if you meet criteria
21 in your other ear. So if you have insurance through one
22 company and you move to a different company with a
23 different insurance carrier — you have one implant from
24 that company — you may very well. If you qualify for
25 that implant for the second ear, there's no reason why


2 that second company should deny it if they cover cochlear
3 implants.
4 >>>: Now what about the existing implant, would they
5 cover it or blow it off?
6 >>: (LISA LAMSON): Do you mean the programming?
7 >>>: Right now I have Univera and say I quit my job and
8 go to a different company and say they have Independent
9 Health. Can Independent Health refuse insurance coverage
10 on my existing cochlear implant?
11 >>: (LISA LAMSON): The coverage on your cochlear
12 implant meaning replacing a processor if it needed to be?
13 >>>: I don't have a need for it like right now.
14 >>: (LISA LAMSON): I don't know. That's a good
15 question. It's something I could look into for you.
16 >>>: I would be interested in that.
17 >>: (LISA LAMSON): I would too.
18 >>>: I have a better job opportunity now, but I'm
19 nervous about taking it.
20 >>: (LISA LAMSON): So this is real.
21 >>>: You know what I'm saying? The company I work for
22 now pays for everything. I'm not complaining about my
23 insurance, I'm just worried if I quit.
24 >>: (LISA LAMSON): I'll get your contact information
25 before we go and I'll look into it and find out for you.


2 >>>: I'm nervous if they say, "Well, we didn't pay for
3 this one, so we're not going to pay for the next one."
4 >>: (LISA LAMSON): It's not our responsibility kind of
5 thing.
6 >>>: Yes.
7 >>: (LISA LAMSON): Yes.
8 >>>: I was thinking it falls under the category of an
9 existing condition. I don't know how legal that is.
10 >>: (LISA LAMSON): Yes. In certain states it's not.
11 >>>: Lisa, if it's one of the Blues in Western New York,
12 my daughter had her implant under the Blue 17 years ago,
13 and recently had a bilateral a year ago under another
14 Blue policy and it was covered. But that's Western New
15 York.
16 >>: (LISA LAMSON): Did you hear that? The Blue
17 Cross/Blue Shield plans covered his daughter's second
18 implant.
19 And did they continue to cover services for the
20 first implant?
21 >>>: Yes. There is a possible denial. Again it goes
22 back to the doctor and it goes back to the audiologist to
23 help support the insurance claim.
24 >>: (LISA LAMSON): Yes, that's key. And you all in
25 Buffalo here have good centers.


2 >>>: See, I have a similar question because now she's
3 working in Rochester under the Blues in Rochester which
4 is a totally different program and she wants to get the
5 22 processor updated and we're curious to see if they
6 would cover that seeing that Blue is now Univera in
7 Buffalo, same program.
8 >>: (LISA LAMSON): Yes. So it's possible and she would
9 definitely need a letter of medical necessity from her
10 audiologist.
11 What processor is she using right now?
12 >>>: She has the 22 on the left side and the new Freedom
13 behind-the-ear on the right side.
14 >>: (LISA LAMSON): So on the left side she's wearing
15 the Espirit 22, the little beige one?
16 >>>: The one that's the analog. We're talking 1991 that
17 that was installed.
18 >>: (LISA LAMSON): There are some significant arguments
19 for medical necessity from that processor to the Freedom.
20 So it might be something that her audiologist could help
21 her with the insurance company.
22 >>>: I did visit the audiologist Monday for remapping
23 and just for a point of information, he said that the 22
24 was analog, but the new processor is digital and it's
25 acceptable which now gives one of the arguments to fight


2 for it.
3 >>: (LISA LAMSON): There are other things like the
4 moisture resistance and microphone arrays, some other
5 things that are helpful as well. Another thing is her
6 current processor is going to be obsolete, that doesn't
7 mean that it's automatically replaced, but it means that
8 we will no longer support that because that processor has
9 been out there for many, many years and we don't
10 necessarily have the parts, so that makes upgrading even
11 easier. But if it's functioning properly then that
12 doesn't help.
13 >>>: Mine does too, because I have the Sprint also.
14 >>: (LISA LAMSON): The Sprint will not be obsoleted.
15 >>>: Oh, no. This is the one that's from 17 years ago.
16 >>: (LISA LAMSON): The Spectra, yes. The little one.
17 >>>: Yes.
18 >>: (LISA LAMSON): Okay.
19 >>>: I have the body worn which I absolutely love.
20 >>: (LISA LAMSON): A lot of people did love the
21 Spectra.
22 >>>: Yes.
23 >>: (LISA LAMSON): You had a question.
24 >>>: Yes. I just wanted to answer this gentlemen. My
25 son had a Nucleus 24 and he had the Espirit and we were


2 able to successfully upgrade to the Freedom. He was
3 implanted in 1996 so his processor was old enough. I
4 mean he had had it long enough. And the audiologist at
5 Buffalo Hearing and Speech was able to write a letter for
6 medical necessity because of the difference in
7 performance.
8 And he has had problems with it cutting out and not
9 working when it has too much moisture. And we had to
10 replace the processor once every 18 months probably. So
11 it was covered.
12 What wasn't covered though, after he started using
13 the Nucleus 24 he had no backup of the same technology.
14 His backup was the Sprint. And when he has tried going
15 backwards to the Sprint, the sound just wasn't right for
16 him, you know what I mean? He said there was too much of
17 a difference in how things sounded.
18 So I did try to get insurance reimbursement on a
19 backup of the same technology and that was denied. I
20 fought it and it was denied. So we ended up just paying
21 for that out of pocket.
22 We turned in his old processor, got a rebate or
23 whatever and we ended up getting him another one. So now
24 he has a processor and he has a backup. Because the
25 problem is, when that goes he doesn't wear a hearing aid


2 in the other ear and he's profoundly deaf, so he couldn't
3 hear anything so he had to have something.
4 >>: (LISA LAMSON): Thank you for sharing that.
5 Any other reimbursement woes, successes?
6 >>>: I'm surprised that you, sir, had all this fiddling
7 around and nobody told you to contact your company, and
8 in your case Cochlear, directly. And you wasted all this
9 time and all this effort and all this grief because
10 people like you exist, you know.
11 Also that all three companies have got list serve
12 and could have answered a lot of questions and given
13 support to patients.
14 >>: (LISA LAMSON): It's a good point and I think more
15 and more the implant centers spread that word to
16 potential candidates. They say, "Why don't you go for a
17 meeting at the Buffalo Hearing and Speech group. Here's
18 the name of the list serves. Would you like to be
19 matched up with a recipient?"
20 I think the implant centers are much better about
21 spreading that word and connecting people so they don't
22 have the same experience as Drake has, and we have a lot
23 more Cochlear awareness managers across the country to
24 help out with that process too.
25 >>: (DRAKE JACKSON): With me, the process was simply my


2 dispensing audiologist said, "You are a candidate for a
3 cochlear implant" and she referred me to the center and
4 they confirmed that. And next thing I knew I was looking
5 at a consultation on the various manufacturers. But at
6 no time did I ever met anybody that was a recipient.
7 So that is the value of your group. I mean I wish
8 that I had had that. I wasn't working with Cochlear at
9 the time. The reason I'm with Cochlear is because I have
10 an implant now.
11 When I got up I saw this and I said, "They need a
12 service like this." In my neck of woods we didn't have
13 that. So we were missing opportunities to help people
14 and I had misinformation. I didn't know about the forms
15 that were out there.
16 Some people said, "You'll hear within the first
17 month." Some people said, "You wouldn't hear for over a
18 year." So I didn't know what those expectations were and
19 it wasn't quite clear from the implant center I had. So
20 it was quite a bag.
21 So that is why I applaud your group and how you help
22 candidates get through the process to become recipients
23 because it is a very valuable service. And I didn't have
24 that and that's partly why I'm here today.
25 >>>: Sir, were you hard-of-hearing before your cochlear


2 implant? Did you wear hearing aids?
3 >>: (DRAKE JACKSON): I'm 49-years-old, and I don't know
4 if I was born with or lost it in the first year or two.
5 I have a mild to moderate hearing loss and I was
6 diagnosed by the time I was three. But I had a lot of -
7 I had measles and mumps and a lot of the indicators that
8 give you hearing loss.
9 I was one of those when I was three that they also
10 did some cognitive testing on me because my speech was
11 very, very bad.
12 >>>: Did you wear a hearing aid?
13 >>: (DRAKE JACKSON): I wore one hearing aid when I was
14 five. They wanted me to wear two, but I was very
15 resistant to that.
16 >>>: All your life then?
17 >>: (DRAKE JACKSON): When I got in the second grade my
18 teacher said, "He's not doing well."
19 Yes, I wore hearing aids all the way up to two years
20 ago.
21 >>>: Okay. When you finally became a candidate for
22 cochlear implant, sir, didn't the person, the people who
23 you deal with, like your audiologist, clue you in what to
24 do? Did they just tell you you're a candidate and let
25 you go at that and walk out the door and that's it?


2 >>: (DRAKE JACKSON): I actually went to four different
3 centers. I went to --I won't tell what centers they
4 were. Some of them were in other states, but the first
5 one I went to was in 2001 and they all said I was a
6 candidate for a cochlear implant, but that my coping
7 skills were so good they really didn't want to force it.
8 The impression --well, some of the responses that I
9 got from the surgeons was, "Why don't you wait a few
10 years because the technology is going to get better."
11 And one of them thought I was a hybrid candidate,
12 which hasn't come out yet. They said, "Why don't you
13 wait for the hybrids to come out." And that was back in
14 2002 when he was talking about that and that really is
15 not out there yet. But they kept telling me to wait.
16 Finally I looked for somebody to really kind of --I
17 could have really forced the issue and said, "I'm a
18 cochlear implant candidate, yes, I want to do it." But
19 they kept kind of being hesitant because they said you do
20 so well with --I mean I'm a phenomenal speech reader. I
21 can lip read. I can take my devices out and carry on
22 conversations that aren't too technically based. I mean
23 I do very well with what I have.
24 >>>: I'm curious. I have a daughter who has auditory
25 neuropathy. She currently is not wear hearing aids or


2 cochlear implants and she is six months behind her twin
3 brother.
4 Did you use a FM system when you were young? You
5 used a hearing aid which she won't use for medical
6 reasons.
7 >>: (DRAKE JACKSON): I must have lived a very sheltered
8 life. You have to remember I was born in 1959 and the
9 concept of a FM system to my knowledge was not existent
10 in school.
11 >>>: Up until two years ago.
12 >>: (DRAKE JACKSON): So growing up in school, to my
13 knowledge I was not made aware of that.
14 Like I said, where was I? Where were these people
15 that were helping me with that? My audiologist was.
16 Audiologists are my favorite people because they got me
17 through life and they got me here. When I meet an
18 audiologist, they're angels to me.
19 But I didn't have that kind of benefit from the ADA
20 came out. So some of these people here are older than I
21 am and they had less benefits than I had when I was
22 younger.
23 >>>: Well, we always question for our daughter because
24 she does so well currently without anything, if she
25 will --it will be her choice if she wants to have them.


2 Similar to probably you fighting away, we are the first
3 diagnosed case in Western New York. Believe me, I am
4 fully aware of the fighting away of everything.
5 But I was curious. So you survived, because your
6 speech is very distinct and articulated.
7 >>: (DRAKE JACKSON): It was a very lonely experience
8 for me, my personal experience, growing up. I mean at
9 49, you find out that most of us all have some sort of
10 problems with our bodies. But when you're going through
11 high school particularly, it can be brutal out there.
12 Back in the '60s if I wore glasses, I would have
13 been called four eyes. I don't know how many people say
14 four eyes anymore. "Hey, four eyes." Does that term
15 exist today?
16 In the '60s people who wore glasses were made fun
17 of. If you wore hearing aids you're like a --to me it
18 was really rough. And I see some people shaking their
19 heads.
20 Growing up in high school with hearing aids and
21 hearing loss, it's very isolated and lonely. And that's
22 my personal experience.
23 So I'm here and these people are here to pave the
24 way to help people feel better and make people aware of
25 what it's like to live with hearing loss.


2 There's stuff out there: The FM systems. I mean
3 there is stuff out there that people should know about
4 that I didn't know about. And we're here to help them.
5 I don't know if that quite answers it. Everyone has
6 to make their own choice what they want to do.
7 >>>: Correct. I see my daughter probably in a very
8 similar path to you in the fact, mild to moderate she
9 seems to be on the low end of the hearing impairment.
10 Medically in the textbook, she does not have an ADR
11 problem. She should be deaf. By no means is she deaf at
12 all.
13 But as a parent and someone who does not have a
14 hearing impairment, I struggle with what's the best thing
15 for her. That's why I'm involved because my daughter is
16 a CI. I'm here because I have to learn about it, I have
17 to know.
18 >>: (DRAKE JACKSON): You are not alone.
19 Every parent struggles through that same thing with
20 what to do with their child. And the more informed you
21 can be, the more informed decisions you can make. You
22 just go out there and you start talking to people. I
23 can't make that decision for you or any one of these
24 others.
25 But I mean talk to other people that are teenagers


2 and so on and see what they go through. I'm not really
3 answering your question.
4 >>>: No, I'm just wondering what took you so long, to
5 47, to get yours.
6 >>: (DRAKE JACKSON): Well, when you're in elementary
7 school, life is a lot more simple. And then you get to
8 high school and it gets a little more complicated. Then
9 you go to college. And once you get out in the work
10 world, the world gets really complicated.
11 Because in college and stuff you're just listening
12 to people standing up there and trying to get that
13 information. But in the work world, the bosses don't
14 wait for you if you don't hear well, and they aren't
15 quite as understanding, and the words get more
16 complicated with science and things like that.
17 For me, you start seeing the writing on the wall.
18 Your company starts saying, "Your hearing is a ball and
19 chain," or you hear people say, "It's like I can't do
20 anything with you because you can't hear" or things like
21 that.
22 You start seeing those things and you have to make a
23 decision whether to take responsibility for it or just
24 keep not hearing them.
25 Each person has their own path in what they want to


2 do. I had to do something about it.
3 CI changed my world for that. I mean, I would never
4 stand up here in front of people talking to them if it
5 hadn't been for the CI because I wouldn't have heard your
6 question. If I went to meetings, I would never ask
7 questions because I didn't know if someone asked the
8 question. So I would be afraid of being embarrassed from
9 that.
10 You had a question.
11 >>>: One of the things I noticed, I didn't know until I
12 was in my 20s that I lipread. I was hard-of-hearing from
13 measles when I was 12 or 13. The doctors told my mom at
14 that time that it's an automatic thing in your body to
15 protect you that you become an avid lipreader.
16 I don't think I realized at that time that I was
17 missing all the things I was missing.
18 I went to the doctor at 42 and he told me it was for
19 children. That was when I went to an audiologist. So I
20 waited all those years until I learned more about it and
21 then I got some help.
22 >>: (DRAKE JACKSON): There's something that tells you
23 you have to do something about it. Everybody in here who
24 has experienced hearing loss has their own personal story
25 about the struggle. I was telling Craig and Jackie last


2 night about a story where I was sitting in a small
3 theater of about 250 people and I was on the side and so
4 I couldn't lipread the actors. And everybody started
5 laughing and I'm just sitting there. I said to myself,
6 "I don't belong here because I can not participate in the
7 world that they're in." But now I can. I can take notes
8 and still listen to you.
9 I was telling the story earlier, women used to say,
10 "Oh, you listen to me. My husband never listens to me,
11 but you always look at me and listen to me." I had to
12 because I have to lipread. Now when I take notes or
13 something, "You're not listening to me."
14 So I don't know. Everybody has their stories to
15 share. We could talk about that for weeks.
16 Anybody else?
17 >>>: You watch football?
18 >>: (DRAKE JACKSON): I do when it's on.
19 >>>: Do you ever read the lips of what the coaches are
20 saying?
21 >>: (DRAKE JACKSON): No. Actually I have done that.
22 Really seriously I have done that. But I have been in
23 restaurants where people will catch me watching the
24 conversations at other tables and trying to lipread.
25 >>>: I can read lips.


2 >>: (DRAKE JACKSON): So they'll be in there and I'll be
3 with a group of people and I'll see some guy with a
4 really young girl, and I'll be like, "Oh, what are they
5 talking about." So I can do that, I do do that. So if
6 I'm staring at some other table or something, that's
7 pretty much what I'm doing.
8 >>>: You notice when the coaches don't want to have
9 anybody reading their lips they have the thing in front
10 of their mouth.
11 >>: (DRAKE JACKSON): I know.
12 >>>: They hire people just to read their lips.
13 >>: (DRAKE JACKSON): Reading lips is a natural to me.
14 Some people say it's really hard; it's very easy for me.
15 Anybody else? I'll be here if you want to ask me
16 questions afterwards.
17 I do have some literature up here if you want to
18 take it. One of them is on OMS, the numbers. For those
19 of you, there's some N-22 information up here for any
20 kind of upgrade if you're looking for information on
21 that. I have some other information here that you're
22 looking for.
23 Lisa is here to answer any questions. She knows
24 more about the insurance than I do.
25 But thank you all for inviting me here and I hope to


2 come back and see you some other time.
3 (Applause)
4 >>: (DRAKE JACKSON): Are you closing up this session?
5 >>: (KATHY MARONEY): I'm Kathy Maroney. I would like
6 to thank Drake very much for his interesting subject, he
7 was very informative to all of us.
8 Hope we'll see you again.
9 >>: (DRAKE JACKSON): I can give you my card if you want
10 to e-mail me for questions because I am a consumer
11 advocate. I can give you my business card so if you ever
12 need to e-mail me or want to know more about other
13 candidates or recipients, I'm happy to help you with
14 that. So see me afterwards and have a good evening and
15 thank you for coming.