[Insurance filter] They're not teeth; they're mouth based body bonuses.
February 15, 2016 5:39 AM   Subscribe

My teeth have been ruined by Sjögren's, an autoimmune disease. It's obviously medical and wildly painful. Bone spikes poke up where teeth sheared off at the gum line. I'm missing most of my front tooth, with pulp sticking out. It is obviously a medical problem. My insurance is turning treatment down. What can I do?

I found out I have Sjögren's in 2008, when, after a life of no cavities, I found myself with a whole mouth of them. I did not feel like my mouth was dry. But I didn't feel like my eyes were dry either - they put tiny sticks in my tear ducts. I guess this makes most people's faces stream with tears. Mine were dry after five minutes and it was awkward to take them out. A blood test later, I had a diagnosis.

2015 was an unfortunate year for me. I had open heart surgery at the Mayo Clinic (it was because of a sudden issue and it was major and risky). I was having big problems with dry mouth and lots of periods where I was not allowed to drink because of tests, scans and surgeries. My rheumatologist put me on Salagen, to help with the dry mouth. Because my salivary glands were already damaged, though, that was the death of my teeth. My dentist broke the news to me that he felt like referring me away and me getting full implants was the safer and least risky way to treat me. I was losing ground, even coming in once a month.

I got five opinions from oral surgeons and prosthodontists and settled on one. My doctors and my surgeon very much believed this would be covered by Aetna. It was because of a rheumatological medication and a disease that effects my whole body. Why would it be anything but medical? It had just happened to land in the mouth right now. They said no to my oral surgeon all the way to the top. I did some research and gave it to him - they told him they wouldn't do it if the lack of oral surgery was holding up heart surgery. He had initially proposed the standard of care - done in stages, a kind of locked in bridge with 4-8 implants each on the upper and lower. An "All on 4" procedure. They said no. He asked to simply do the extractions. They said no. (This is not really a long term option but it would remove the infection risk. People with Sjögren's don't take well to dentures - they are "contradindicated" because with no saliva our gums blister and get ulcers if you put something in there.)

Because of my RA related lung disease (obstructed airway is a part of it at this point), history of allergic reactions at the dentist (they've never been able to figure it out but it's happened at three different offices) and recent heart surgery, this can only be done in the hospital. I have been off my main RA medicine since August, trying to get this surgery done and I'm afraid it's having permanent effects. I also have Medicare (from disability) but it is secondary.

If this is excluded on my policy (can they really exclude such a huge swath of things?), is there no way to work around it? Each Aetna rep tells me something different. I began the process of appealing the decision as a patient, but it's robotic - you put the case number in and they decide whether to let you appeal; you'll hear by mail.

Have you ever gotten "medical" insurance to cover "dental" bills? How did you do it? They do not contest what happened. They say it's excluded. I will certainly die if the infections go down to my heart - it is only a matter of time. It is surreal and I can't believe it. I have to fight this.

Have you ever appealed an insurance company's decision and won? My surgeon said doing his peer to peer is the highest level and they cannot do anything more. Do I need another surgeon with a more proactive staff? Blogs, communities, sources of self help are all welcome. Assume that I have done the usual (social worker at my doctor, the dental association, etc - I used to sit at the reference desk and am a great researcher). Medical tourism isn't possible - I can't even be trusted to be operated on without being in critical care afterwards. I'm at a loss. This has halted my life since September. My health had improved a lot. I was psyched about going back to work! Help me make Aetna do the right thing. I'm just terrified by this.
posted by sweltering to Health & Fitness (13 answers total) 3 users marked this as a favorite
Have you tried the state insurance commissioner? That is where I'd go in this instance, particularly when Aetna seems to "tell you something different" every time (hopefully you have notes on what they've told you each time).

Additionally, since your primary insurance at Aetna won't cover it, is it possible to apply for coverage via your secondary (Medicare)? The two insurance providers may fight with each other, but that fight can't start until you apply for coverage with the secondary.
posted by nat at 5:53 AM on February 15, 2016 [9 favorites]

This may be a sidebar, but I had extensive dental work done over the last two years without insurance, and one option for me to control costs would have been to seek treatment at the local university-based dental school. Perhaps that could be a backup plan? I'm so sorry you're going through this - good luck with Aetna!
posted by deliriouscool at 6:00 AM on February 15, 2016 [1 favorite]

Best answer: nat's got the right idea, I think. And, I hate to say this, but it sounds like time to get a lawyer. State laws will differ, and there is surely a mandatory arbitration clause in your coverage. Has Aetna given you a formal written denial of coverage? Or, has it just been phone and web stuff?

My mom has had Sjögren's for almost 50 years now. The complications have been difficult, and there were fewer options decades ago. She's been lucky to have decent coverage but still been out of pocket a small fortune for dental implants etc. But, this can be manageable. She's gotten through a lot of procedures and small to large crises and is still going strong.

Dental school is probably not practical for such specific and exacting work. But, at times she's gotten help--not dental but other--through connection to researchers and research labs. Lucky to live near major medical research center and "lucky" to have other things besides Sjögren's that make her "interesting." Not sure of that's an option that anyone on your medical team can connect you with. And, as you know by now it does really take a team to help with this. But, can any of your medical people refer you to a good lawyer? They should be in it with you against Aetna, so maybe ask them for a referral.
posted by Gotanda at 6:21 AM on February 15, 2016 [2 favorites]

Best answer: Not sure if this would be helpful in your situation but one under-publicized component of the ACA is that each state now has an office dedicated to handling insurance claims denials.

That is, if your insurance company denies a claim you can have this third-party (the state) weigh in and potentially make the insurance company pay up.

Healthcare economists have found that people who take claims to the state have a better than 50% odds of winning and having their claims covered.
posted by forkisbetter at 6:25 AM on February 15, 2016 [14 favorites]

I once had a Blue Cross policy that was in violation of federal law (the Mental Health Parity Act). I was able to resolve the problem, so maybe my experience will be helpful to you. First of all, the insurance company's representatives were remarkably ignorant and made ridiculous statements (such as that insurance companies got to decide when they wanted to comply with the act). So I wouldn't even try talking to them anymore. It's a waste of your time and energy. I was able to get a lot of useful information and assistance from the National Alliance for the Mentally Ill (they helped me to prove to my company that they were violating the law - and the company changed our coverage). This has got to be a problem that a lot of patients with Sjögren's have, so I would suggest looking for any national organization dedicated to this condition and seeing if they have advice. Perhaps there are even dedicated message boards where you can get information from people who've been in the same boat. But my guess is that you will probably need an attorney in the end.

BTW, after my company changed our policy so it was in compliance with the law, I tried reporting Blue Cross to the state insurance commissioner, since they were selling policies that violated federal law. The commissioner's office wasn't even slightly interested. An attorney in that office told me it was up to employers what kind of coverage they wanted to purchase.

Good luck.
posted by FencingGal at 7:19 AM on February 15, 2016 [3 favorites]

Yes, state insurance ombudsman will crank an answer our of Aetna and help you figure out how to fight it.
posted by Eyebrows McGee at 7:27 AM on February 15, 2016 [1 favorite]

Here's the thing: insurance companies are really not in the business of helping people, they are in the business of insuring profit and keeping shareholders happy. There has long been a separation between dentistry and medicine for the rest of the body, and insurance companies have a vested interest in keeping it that way (even though the cost for most dental related treatment is a mere fraction of even the simplest medical procedure).
I agree with others who have suggested that a dental school or a teaching hospital that has a multi-disciplinary department that deals with Sjogren's is probably your best resource for finding the proper codes for getting treatment approved, if there are any.
posted by OHenryPacey at 9:26 AM on February 15, 2016

There is no harm in calling a dental school, but bear in mind that procedures at dental schools often take much, much longer. The highly ranked dental school near me estimates three hours for a cleaning done by students. I had a friend who went for a cleaning there, and the student was unable to finish the cleaning in that length of time - she was told to come back. Considering the OP's heart issues, a dental school might not be a reasonable option.
posted by FencingGal at 9:37 AM on February 15, 2016 [1 favorite]

As a Canuck, I don't have personal experience, but found this interesting.
posted by kate4914 at 10:10 AM on February 15, 2016 [1 favorite]

Best answer: I learned the hard way that some doctors' offices have horrible staff that can't get procedures approved. I needed surgery, and went to a very well-respected doctor. His surgery coordinator was totally disorganized (her office was a HIPPA complaint waiting to happen) and couldn't get the surgery approved with my insurance. I went back and forth with appeals. Finally went to a different doctor, and they got the exact same surgery approved within 72 hours.

So maybe try another doctor?
posted by radioamy at 1:11 PM on February 15, 2016 [2 favorites]

Best answer: I know that people are anxious to help you but the only advice you should be listening to is to go directly to your state's Ombudsman. This is what that office is for.
posted by DarlingBri at 1:49 PM on February 15, 2016 [3 favorites]

Response by poster: Thanks so much for these replies. Yes, I have already been to my local (University of Washington) dental school. They do have an advanced dental program for disabled people like me (I use a power wheelchair because I have difficulty maintaining my blood pressure, etc, etc) but it's at market rate (because the oral surgeons are faculty, simply letting residents watch) and the care was limited (not able to accomodate my regularly occurring emergencies).

I have some urgency about this, because I just had to cancel surgery for tomorrow - surgery that was delayed by herding the cats from the Mayo Clinic and my primary care and etc. I guess I have gone through the process for awhile, though, and have no active infections yet.

My delicate state right now excludes me from studies. I hope there's a way to get the care more quickly than through a legal battle - I have opinions 2-5 scheduled in the coming weeks. The office manager at my oral surgeon's office didn't inspire confidence. Here goes nothing.
posted by sweltering at 5:42 PM on February 15, 2016

Absolutely contact the ombudsman. I have been trying to get some out of network claims reimbursed for 6 months and have resubmitted the forms 4 times. One email accusing the insurance company of using dilatory tactics and saying that if my claims weren't paid immediately I'd contact the omsbudsman resulted in me getting the nicest call I've ever gotten from an insurance company last Friday. Today I got a call saying the check was in the mail. Good luck!
posted by whoaali at 7:07 PM on February 16, 2016

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