Welcome to the American Speech Language Hearing Association podcast series, highlighting issues in the field of human communication.
Voice disorders are a widespread and significant health problem. Estimates of prevalence range from 3 percent to 7 percent of the general U.S. population. Untreated, voice disorders cost billions of dollars in lost productivity. For an occupation like teaching where voice use is heavy, the cost is almost $3 billion annually.
Treatment is available. Yet voice disorders don’t appear to have fully registered in the world of health care plans. For example, some of the largest insurers don’t cover conditions like muscle tension dysphonia. Why is that? And where does that leave people who have voice disorders? Do they have any options? And what are they?
Here with answers are Janet McCarty, who works in the area of private health plan reimbursement for the American Speech Language Hearing Association, Doctor Denis Lafreniere, an ear, nose, and throat specialist who diagnoses voice disorders, and Starr Cookman, an ASHA-certified speech language pathologist who treats people who have voice disorders. Also with us is Kurt Cote, whose story is among those behind the statistics mentioned a few moments ago.
A salesperson from Connecticut, Mr. Cote, has been diagnosed with muscle tension dysphonia, but is having trouble accessing the care that can help him. He will share what the impact has been on his life.
Q: Welcome to everyone. Janet McCarty, please give an overview of the state of insurance coverage for voice problems.
Sure. Health plans provide inconsistent coverage of voice disorders even for diseases such as vocal nodules. For muscle tension dysphonia that you can hear in a weak or a hoarse voice quality but that often doesn’t have an organic pathology present, health plans exclude treatment. They say that the voice problem must have, again, organic pathology to meet coverage criteria. For example, Aetna covers voice therapy for surgery on vocal cords or vocal nodules, but Aetna excludes muscle tension dysphonia and improvement of voice quality.
Now we know that muscle tension dysphonia accounts for 10 percent to 40 percent of voice clinic case loads. So its numbers are significant. And that means that there’s a lot of people out there with this condition that go without treatment. We can provide health plans with evidence. For example, an ENT association and ASHA issued a statement saying that voice therapy is the treatment of choice for muscle tension dysphonia and that there is evidence to support its utility in these cases.
Q: I know that you follow this issue closely and have for some time. Does there seem to be something particular about voice problems that makes it challenging to obtain health care coverage?
Yes, I would say so, because health plans don’t view poor vocal quality as a health issue. Rather they look at it as a cosmetic issue for example. Health plans characterize treatment for voice patients without organic pathology as merely being cosmetic or as something that they regard as voice training. But if you hear that hoarseness, then something organic is certainly going on. It just may not be visible on the instrumental assessments as of yet.
There are recognized disease codes so they can be used to describe muscle tension dysphonia in the ICD-10 disease manual. I don’t want to get too technical, but we do want to show health plans that this is disease. It does have, again, a disease code in a recognized disease manual. So you have codes like the J38.7 other diseases of the larynx, or J38.3 other diseases of the vocal cords.
So speech-language pathologists use code R49 for hoarseness to describe the poor vocal quality that they see in the patients. So all of this says voice disorders, including muscle tension dysphonia, are certainly categorized diseases. And health plans are incorrect to say that they are not.
Q: I see. Very interesting. Thank you. Dr. Lafreniere, please briefly tell listeners the professional positions you hold and the extent of your experience diagnosing voice disorders
Sure. I am a professor and chief of the division of otolaryngology at the University of Connecticut and the medical director of the voice and speech clinic here. I’ve been doing this for 23 years, specializing in taking care of patients who have voice disorders.
Thank you, doctor. Now if you would please, explain in simple terms what muscle tension dysphonia is. How does it happen? How common is it? What are the symptoms? And what is the impact, in your experience, on patients?
Sure. It is quite common. I think your statistics earlier were correct. 3 percent to 7 percent of the population will have voice issues. Muscle tension dysphonia is a hyper function of the vocal cords. In other words, people are straining and squeezing the muscles together in an effort to get our voice out. This can start with something as simple as an upper respiratory infection.
And as we mentioned, a teacher who gets an upper respiratory infection with an associated laryngitis may still go to work, still has to project his or her voice so that the student in the last row can hear them. And they may start to push or over function the vocal folds. So the voice might sound strained and pushed.
And that individual will continue to use the voice in that fashion and then eventually becomes the habitual way that they use their voice. So they may come into my office six months later, and they’ll say, doctor, my voice, listen to it. This is the worst cold I ever had.
And the cold went away a long time ago, but the hyper-function has remained. And it’s not till we can train them to not do that, that they will get better. We have to show them how to use the larynx in the proper fashion.
If this goes untreated, they will continue to miss days of work. They will continue to phonate in a way that can cause them discomfort. And eventually, they may develop true organic pathology where there might be nodules or polyps that I will then have to remove surgically. Then the confounding area here is one of payment for the service. They will pay me to take someone to the operating room, take them to surgery, pay for general anesthesia, but yet they won’t pay for the simple therapy to help prevent all that from happening in the first place.
Very interesting. Just to follow up, can there be lasting damage to a person if it does go untreated for very long?
Well, if there is hyper-function, you can then get organic pathology. Some people will get swelling on the back part of their vocal cords. Some people will eventually start to develop nodules. And these can, left untreated for a long period of time, lead to a little bit of scarring under the vocal folds. So it can be a progression of symptoms.
Thank you, Dr. Lafreniere. Starr Cookman, please briefly share the nature of your work and the extent of your experience treating voice disorders.
Thanks, Joe. So I’m a speech language pathologist. I also work here at the University of Connecticut Voice and Speech Clinic. And I’ve been working here evaluating and treating a wide variety of ways disorders almost exclusively for about 19 years.
Thank you. Now please, if you would Starr, talk about what’s involved on the speech therapy side. How often do you, for example, see patients with muscle tension dysphonia? What does their therapy involve typically? And how often is a successful?
Well, I would say that I see patients with muscle tension dysphonia every day that I work. It’s a very common diagnosis. And there’s a pretty wide range of severity associated with it. It can be seen all on its own as the sole diagnosis, or it can be seen in combination with other voice disorders.
So if we think about the MTD [muscle tension dysphonia] that’s seen all by itself as well as in combinations with other disorders, I would estimate that about 60 percent of my caseload has MTD. The therapy to treat it involves rebalancing the muscles involved in speaking, that is, the respiratory and the laryngeal muscles.
There are numerous intervention strategies to accomplish that goal. These intervention strategies range from laryngeal manipulation to biofeedback therapy to resonance retraining. And speech pathologists are really excellent at identifying the source of the respiratory laryngeal imbalance and the subsequent hoarseness. And then using trial therapy to identify which method works best for that patient to reduce the habituated strain.
So once the treatment method is identified, the speech-language pathologist then helps the patient reconfigure the way they speak. And that then eliminates the hoarseness, but it also eliminates the throat pain and the fatigue that usually goes along with it. And as Janet mentioned, speech therapy has been shown to be efficacious for the treatment of many voice disorders including muscle tension dysphonia.
There’s clearly a record that shows that people with this condition, with proper therapy, can get better. That’s clear.
There are studies that show that, with therapy, people with functional dysphonia or muscle tension dysphonia improve.
Very good. Thank you, Starr.
Q: Mr. Cote welcome once again. Thank you very much for being with us. If you would please talk about how and when your voice problem developed.
Sure. Thank you. Basically, my voice problem developed back in January. I received a testosterone shot. I had been treated for Low-T. During that period of time, in January, when I got the shot, I had an adverse reaction to the shot, which caused me to become violently ill.
After that, I was diagnosed with various medical conditions due to weakness and my arm, chest pains, as well as trouble breathing. So I was referred to various different doctors to handle these medical issues I was having. One of them was a pulmonologist. The pulmonologist had put me on an inhaler to basically rule out asthma symptoms. He felt I was having asthma-like conditions.
After a week of being on the inhaler, I developed thrush. And it severely irritated my throat, causing me to basically get an extremely sore throat. They advised me, with the medication for the thrush, that it would take care of the thrush. And within about a week or two, my voice would return back to normal.
That was in May. My voice still has yet to return back to normal as you can hear. And I’ve been treated through different ENTs in regard to try to get my vocal cords back so that I’m able to speak again and resume my life.
Thank you. What would you say? How has it affected your life overall?
Well, I mean, it’s made it extremely difficult. As you stated earlier, I’m in sales and customer service. I have 30 years experience in it. Because of this, with my vocal as they are now, I’m not able to perform those duties. I’ve actually lost my job because of these medical conditions as well as it makes it difficult for me to talk to my family members.
You know my partner, she was diagnosed with tinnitus, so she has trouble hearing out of one ear. I constantly have to repeat myself to her when I say something as well as my father who has tinnitus in both ears. I’m not able to communicate to him over the phone. I have to basically tell my mother, and she translates it to my father. So I’m not able to interact as I normally would with people, because using a phone and a cellphone, it makes it very difficult to talk.
What I hear you saying is that there’s very much a social impact along with the loss of your job. There’s a social cost as well that’s associated with your condition. Is that correct?
Absolutely. I’m not able to speak very long without it starting to irritate my throat as well as sometimes losing my voice all together. So it makes it difficult.
I see. What has been your experience trying to get an insurance plan to cover your condition?
Basically, the insurance company, as Dr. Lafreniere stated so eloquently, they will go ahead and pay to have you go to the surgery, but they won’t pay for the treatments necessary to prevent those surgeries. I’ve already had one surgery. Not because of the vocal chords– because of other medical conditions, I’m trying to avoid any additional surgeries. It makes it difficult, not only losing my job, but then the fact that when I was terminated, I ended up having to go out on disability. So my pay was cut tremendously, which now the only option I have is to pay it for myself, to go and get the speech therapy myself, which I can’t afford at this stage and be able to sustain a lifestyle.
So it’s been difficult going back and forth with the insurance companies. And I understand that the insurance companies have a financial responsibility to their shareholders, but I also believe that they have a moral and humanitarian responsibility to their insureds to do whatever’s necessary to make them become more productive and healthy members of society.
Well thank you, sir. Janet McCarty, Dr. Lafreniere here, and Starr Cookman, how representative is Mr. Cote’s situation? Is this, in your experience, something that’s exceptional or are there are other Kurt Cotes out there that more or less are in the same sort of situation?
This is Dr. Lafreniere. There are a lot of cases that are very similar. There are a lot of conditions that could cause some irritation of the vocal cords. And oftentimes, patients will compensate with muscle tension dysphonia. Left untreated, that can have such a significant impact on the quality of their lives. And there are other insurance issues besides non-coverage that can be an issue as well.
Oftentimes, patients will come in, get the first two or three sessions, and then the insurance companies will say that we’re not paying them any further or the ones that they already had, leaving them a bill to pay, which oftentimes they cannot do. So we see this time and time again. And the shame of it is that most of this is preventable.
And if I could add just to clarify, the main diagnosis that we’re working with Mr. Cote is muscle tension dysphonia.
So there is help for this condition. I would say that some insurance companies are better than others with regard to their coverage. We do have certain insurance companies that will cover voice therapy for muscle tension dysphonia without even taking a second glance at it.
Aetna, however, is one of the most difficult to work with, and they have created nationwide issues with their non-coverage of these voice problems. And we’ve appealed to their medical director to cover muscle tension dysphonia with the studies that have been shown as well as the financial impact to the medical system for not covering muscle tension dysphonia. However, that appeal was also denied.
Go ahead, Janet.
And I would add too, from a national health policy perspective, I get calls from consumers and from speech-language pathologists with cases just like Kurt. There is nothing that he said that makes his situation more outstanding than any number of cases that I work with throughout the year.
And I don’t want to pick only on Aetna. There are other health plans that do not cover voice disorders very well as well. As Starr said, there are some that do cover it, and in the long run, it makes sense to cover those disorders rather than wait for surgery or something more expensive down the road.
Is there anything that Mr. Cote can do at this point? I mean, does he have any options or is he completely at the mercy of insurance companies? Where is he left?
Well, I would say the health plans policies are written pretty, pretty tight. They specifically exclude muscle tension dysphonia. So if that’s your diagnosis, that’s going to be pretty hard to get some coverage for.
Starr, Dr. Lafreniere, any thoughts?
There are levels of appeals that he can engage in, although it’s not promising in terms of whether or not his nonpayment decision will be overturned. There’s a self pay-option. There’s whether he can change insurance companies.
There are a few options. There is an office of the healthcare advocate, which is a state run institution here in Connecticut that can help Mr. Cote free of charge to try to navigate the insurance issues that he’s having. So perhaps they might be able to come up with some other solutions.
This is Dr. Lafreniere. Sometimes occasionally when we examine individuals, we do see some other pathology. Often times, there’ll be edema of the larynx because they are over squeezing the vocal folds so hard together. They’re bringing them together so hard that it could lead to some edema. And sometimes a peer to peer between the physician and the medical director can lead to some coverage for these services if they have coverage at all in their policies. And that’s one of the issues.
So it’s a long road to hoe when you’re trying to do that. And it’s very, very time consuming, so months can go by before we can even get a peer to peer. And oftentimes, that doesn’t result in the therapy being covered.
Q: I see. Janet, generally, looking at this a bit more broadly in terms of just communication problems in general, what are some easy, practical steps and resources that are available to people when insurance companies deny coverage claims?
Well, you could certainly appeal your claim, and you want to look at the coverage language. And I think that’s what we were kind of talking about here when you go from when there’s no organic pathology and the plan doesn’t cover muscle tension dysphonia, it’s very difficult to take an appeal beyond that because it’s very clear. But if the patient develops a little bit of organic pathology, a little swelling, edema, something like that, then the health plan might have language that you can get coverage for, because they base their coverage on disease and et cetera, and things like that.
Q: Looking at it another way, what’s the answer to getting insurance companies to expand their coverage to include treatment of voice conditions?
Well, we’d like to see improved health plan coverage for voice disorders. And I think educating the public just through the process of what we’re doing here, educating employers who sponsor health insurance, and health plans, medical directors, about the condition, and provide the– and that would provide the advocacy push needed to improve coverage. I think we’ve all heard public figures in the media that use voices that are very hoarse and weak.
We know teachers and others who are very hoarse and they often lose their voice for periods of time, and this isn’t good, and it’s a health problem. It’s not a cosmetic problem. It is a health problem. And voice treatment via speech language pathologist can improve the voice and overt the more serious organic pathology that can come on down the line. And as we pointed out, voice treatment can save health plans money and improve patient vocal health if the proper treatment is provided and covered.
This is Dr. Lafreniere. And yeah. I mean, the American Academy of Otolaryngology and our treatment guidelines support this therapy for muscle tension dysphonia as the treatment of choice for these conditions. So this is something that will save the health system money long term. So patients need to know about it and insurance plans need to know about it, because denying it is actually a waste of money to the system. And that’s the message that we have to deliver.
Q: That’s a very good point. Starr, I know you’ve advocated a long time. I’m interested to hear what you have to say on this point as far as sort of changing the picture a bit for the better overall in terms of insurance companies’ attitude toward voice conditions.
Well, I like the idea of attacking the problem from many different sides. I think that the non-coverage status for muscle tension dysphonia puts our otolaryngologist colleagues at a disadvantage because the patient comes to see them. They recommend a treatment that will solve the problem, but then their patients are not able to get that treatment. So as a physician, they’re not able to solve the issue because of the insurance companies.
So if our otolaryngology colleagues are able to attack from their end and get those peer to peer medical reviews with the different insurance companies, that would be helpful, while the same time, sometimes speech language pathologists get their therapies denied and they do not engage in the appeal process. I really appeal to speech language pathologists to go forward with that appeal process even though it can be arduous and paperwork intensive.
Then the consumer needs to know that voice disorders are an important thing to cover. And it’s once the consumer starts to insist upon having this type of coverage that we will, I think, start to see some change. And I think that as Janet mentioned, public awareness is a really good start along those lines.
Very good. Well– I just want to add one thing. Yes.
The consumer needs to ask about voice coverage, because oftentimes, when they read the policy, they’ll say speech therapy and it’ll be covered. But they don’t look at the specifics as far as whether it’s voice therapy that is covered or not, so that may be something, a push that we can try to get the general public to just be aware of that.
OK, very good. Does anyone have any other points that need to be made before we close here? Anything being left out that you’d like to say? Kurt, I know that when we talked once before, you explained to me why you decided to be part of today’s discussion. Would you mind telling listeners what that reason is?
Sure. The biggest part is to bring awareness to a situation like this. Look Dr. Lafreniere’s office has tried to work diligently with me to try and get this overturned. I do have Aetna as my insurance company, and I know one of the things I believe Star mentioned is about possibly changing insurance companies or something like that.
At this point in time, because I’ve gone through the medical conditions I’ve gone through this year, I’ve actually met all of my deductibles. So I’ve put out thousands and thousands of dollars out of my own pocket for co-pays, deductibles, and medications. If I were to change insurance companies at this point, I’d be back to square one, and I can’t afford that being out on disability.
The other thing is, as Dr. Lafreniere said, a problem like this costs the insurance companies more money than if they were just to allow people to go through this speech therapy and try and get this taken care of. In my instance, my primary occupation is that of sales and customer service, which makes it difficult for me to do that at this stage with my voice the way it is, which means I’m still out on disability because of this.
The only other option the disability company has at this stage is to try and retrain me for another job if I can’t get this resolved and which is going to cost them more money. And because the insurance company won’t do this, and it makes it difficult for me to return back to work in my chosen field, which obviously costs me a lot of money, not Being able to do my sales and customer service stuff that I do.
So it’s important for not only myself, but for other people that are going through this, not to have to deal with the stress of the insurance company and doing the red tape to try and protect their pocketbooks. People that are going through all these different medical conditions have enough stress just trying to get better. They don’t need to add to this stress by having to deal with constant paperwork and constant red tape.
And in my instance, because I have to do a lot of follow up, it’s even more pressing that I get it done, otherwise I don’t feel that it would get done. But that means also that I have to continue to use my voice and strain it in order to get things accomplished. And I don’t know that without the proper medical treatments that I’m going to get any better than I am now or if it’s going to get worse and eventually lose my voice altogether.
Thank you for listening. At www.asha.org/profind, listeners can find an ASHA certified audiologists or speech-language pathologists in their local area who treat communications disorders.