The Disparities of Insurance Coverage

The Disparities of Insurance Coverage

I am still confused by the inconsistency and illogical practices of insurance companies. As we travel to Ohio to see the jaw specialist that dedicates his practice to people with jaw issues related to Ehlers-Danlos, I am still reeling from the insurance company’s decision concerning coverage for a mouth guard that could prevent surgery.

Since two life-saving neck fusions, I have had to deal with a jaw that slips right out of position into full dislocation, from one bite of food. Since the second fusion, the situation has gotten so much worse and has meant having to puree many meals to be able to live with less pain for the rest of the day. So, with encouragement from my manual PT, we finally broke down and made the plans to visit the person most skilled to help me to see if I would be a candidate for a mouth guard that might help relieve the problems. Having already dealt with twenty-four surgeries, I immediately called my insurance nurse in RI to share the upcoming appointment to see what they needed from the office for coverage. I did all that was required, submitted the codes for the mouth guard that would be custom made for me and waited for the response.

Ellen Lenox Smith

To my dismay, the call came back that despite my nurse even talking with the head of the company, there would be no coverage at all since the code did not match the code, they cover which is meant to protect from grinding. Not only do I grind, but I also have the jaw dislocated. My own dentist wanted to fit me for that mouth guard to help stop the grinding but felt he knew too little about my condition and thus decided not to take a chance on creating a guard that might make the jaw even worse.

So, let’s see, if I were calling my insurance to say I was choosing surgery, it would be covered, but since I was choosing the safer and much less expensive alternative, there would be no reimbursement? Where is the logic to this decision? I am trying to be safe and prevent more surgery and they don’t see the value in this since the code doesn’t match? Trust me, I am not running off to take on more surgery due to their decision but I am also not keeping my mouth shut. Their policy defies common sense and acceptable medical practice. There is no logical explanation forthcoming to support a policy which is not in the interest of the patient first and foremost. However, it is clear that this policy does not appear to be in the interest of the insurance company.

When I was finally diagnosed with EDS at the age of fifty-four, the researchers in the NIH study I was accepted into, suggested that I see a neurologist in Long Island who specialized in the condition. They suspected I needed surgeries and wanted me in the right hands. They were attempting to save me from failed surgeries by encouraging to put me in the hands of the individual most capable of helping me. When I met with the doctor, it was clear to him I needed a tethered cord release and in time, also the neck fusions. When I applied to my insurance, I initially got a rejection for coverage and was told to turn to a RI neurologist for help. I knew from my education that this could be deadly so instead pursued working on an appeal. When they received a letter from the NIH research doctors, I suddenly received a letter stating that I had full coverage to have the surgery along with a full year of coverage after if there was any needed follow up. In this case, I was very lucky to be part of the research study and have their support in writing for the right surgeon to do the work. If I had followed the initial directive of the company, there is a strong possibility I would not be sitting here writing this.

I wish insurance companies would add a human element to their decisions, particularly when dealing with rarer conditions. The best patient care will not be achieved when the primary motivation is economic. Patients die every day from improper and inappropriate care. A great deal of these horrific misfortunes could be avoided by following the direction of knowledgeable doctors and patients. We should be covered by the right doctors, not by a code. We are all different and need these differences to be respected and considered.

It is tough enough to cope with the constant issues that have to be addressed with chronic medical issues, but it sure would help if one would not make you jump through hoops to get the help needed. Lately, more than ever, life seems to be about one making the buck, saving the buck and not logically listening and considering the safest way to accomplish the help needed. I need to eat, chew and live with less jaw pain. I have help to consider trying, yet the financial obstacles have made us put off booking for a year for taking this trip on. But the decision was made and we are going to meet with him and hope I can be a candidate for a mouth guard to help hold my jaw in position and help improve eating and quality of life. It would have been nice to not to have to beg for help financially and be listened to. I don’t know about you but this process only adds more stress to life and makes me feel guilty to have to use our dwindling retirement money to make this happen.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain- And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website.

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Ellen, I agree with you 100 percent! I have had Epilepsy since I was 4 years old. I’m 59 now. I have seen so many different doctors in my years and tried many different treatments, but I only have Michigan Medicaid Insurance. As far as I’m concerned, we are all just “STATISTICS” who don’t count except for on the Census!!! I’m sick and tired of being this way. The Illegals and foreigners are treated better than the REAL American Citizens!!!

Teresa Burns

I understand the awful situation you are in. I can’t for the life of me understand why the insurance companies would rather spend an extravagant amount on a surgery that may and or may not work and cause more problems than to pay for a non-invasive, much cheaper, procedure/appliance that is being offered by the physician.
I was diagnosed with CRPS almost 9 years ago. After 2 years of physical therapy, nerve-blocks, several different medications, etc. that did not work, the doctor suggested a spinal cord stimulater implant. After researching this procedure and found that there had been many problems with these devices, I was frightened to go through with this. Fortunately, my husband found Calmare Pain Mitigation Therapy. This was an answer to a prayer, it is non-invasive and works great in controlling my pain. But, it is not covered by insurance (who would have thought).
Praying for you.


My grinding mouthguard is not covered by any insurance. I thought it might be in their best interest to help pay for one because I would need lots of dental work for broken teeth without one. The one I use now is nearly worn through but I try to squeeze that tiny little bit of use left in it.

Foot orthotics are not covered though I have turf toe, neuralgia and plantar fasciitis and cannot walk without them.

My mother’s diabetic shoes won’t be covered until she already has an ulcer or an amputation(!).

My Cpap materials are covered at 50% after deductible.

I am fortunate I don’t need mybasthma medication as much as before. All inhalers are brand name now. Because they were reformulated to protect the ozone layer. I heard that the drug companies lobbied for reformulation, to increase profit. The effect on the ozone layer was negligible.

Patent laws are so confusing that even my insurance company expected a generic to be available, but it didn’t happen and a search online says that because of complicated patent laws, it cannot be predicted when a generic albuterol will be brought to market. Albuterol is the quick-acting, life saving medication. The medication company said “oh, too bad so sad” when I appealed to them for assistance.

horrible situation not being able to eat and sounds terribly painful. I deal with TMJ and had to pay out of pocket for a mouthguard. I did not meet their code either, said that TMJ what’s a medical code but the mouthguard was not medically proven to work. So would not be covered. As a possible fill in for the mouth guard there is a mask-like jaw holder for people who snore. This would keep your jaw in place at night but would not help with the grinding. And Walmart sells the hard plastic mouth guard that you can heat up and mold to your mouth. Not professional but got to do what you got to do. Every year I deal for about 6 to 7 months with insurance on the same claim. I have 50 pages of different answers to the same claim. They even mailed me the reply to my appeal and it is wrong. I know more about my insurance and how it works then the insurance representative. Yet I have to fight for 6 to 7 months and sometimes pay the claim meanwhile not for it to be sent to collections. And wait on my money from the provider. The provider and me having to fight with the insurance company but mostly it’s just me because I’m stuck in the middle. I hope it all works out for you in that the insurance pays for the claim because it’s medically necessary. Instead of a regular dentist you might want to see a oral surgeon to make your mouth guard. Or a orthodontist. Mouth guards are basically made the same way out of acrylic and they put the stuff in your mouth and you bite down and then they adjusted by filing on the acrylic and they have you Chomp down on this black type of paper that tells them where they need to file on the mouth guard. Orthodontist made mine. Best of luck.


Also, it absolutely pays to file appeals with insurers and to make a stink by going to the highest levels, and to the govt’.

I knew someone dying of cancer whose insurer refused to pay for things that were covered under the policy.

A letter to the company’s President, copied to the state Atty General — or maybe the other way around — fixed the problem.


Absolutely no logic in many insurance company decisions.
Remember, before the ACA, preventive care wasn’t covered.
Penny wise; pound foolish.

Now, people who choose the very inexpensive Cologuard are penalized and must pay out of pocket for a colonoscopy if the Cologuard results are problematic. This forces people to avoid Cologuard, costing the insurer more money, and needlessly exposing patients to the risks involved with colonoscopies.

The list is endless.

There is no place, imo, for for-profit medicine in a civilized world.
But since we’re stuck with it, at least if it would make sense — that would help patients AND save the insurers lots of the almighty dollar.

lauren Seavertson

When i read your posts, i want to cry. I can totally relate, although, u R probably worse off than me. Getting decent care thru insurance, is almost impossible these days. I have a condition that is not common and dealing with my insurance company is useless, and often, pure hell. Yes, they would prefer to pay for expensive invasive procedures than do the right thing (if it’s not a code or procedure that’s covered) I get so frustrated, depressed, and angry. There is no common sense, any more, in medicine or insurance I was an RN and worked in the insurance field. Companies used to negotiate benefits and listen to patient needs. Not any more. Now, no common sense and rigid rules. It’s getting worse, and patients have to fight and the effort seems ridiculous, and expensive. So sorry U have to deal with this on top of your serious condition. It’s not fair and we pay the price!

Becky Riley

They do this kinda of stuff all the time! It makes no sense to me why they go to the expensive route.

Terry Ott

What about naming the insurance company for us?

Marjorie Booker

I feel your pain. Mine is not so dire but the consequences have derailed my life. I injured my back(vertebrae dislocated) in 2015. This caused the other vertebrae to move also. Instead of allowing the surgeon to fix from l2 to l5 he could only fix l3-l4. Also that took 2 months for approvals because wrong codes were sent in(they tried to make sure everything was covered by a code). Anyway we have just finished surgery 5 with complications and it to was hell to get approved and I was at the point where I could not stand or walk.
Something needs to change. No one in their right mind is going to have spinal fusion with hardware just for fun.
I don’t know what the answer is but if someone comes up with an idea I am in!

Casey Thompson

I have had custom mouth guards made by specialists and have paid around $500 for each one after insurance. Sad thing is they get broken in around 3 months time. They’ve tried different materials to make them but at night I clench so hard that I bite right through. I find it odd that an insurance company would rather spend a ton of money on invasive procedures than a little on preventive issues.

Debra Yates

Thank you for saying what needs to be said. You are my hero.

Autumn Gabriel

Could you not find the code they deem proper & reapply? I’m so sorry for the shoddy treatment you are receiving from your insurance. There have been several times my insurance has denied a claim because of incorrect code. My PMD’s receptionist has, thus far, been able to find the code that my insurance will accept. Good Luck & God Bless!