Christina flashes her new smile.
Three generations affected by autosomal dominant hypohidrotic ectodermal dysplasia.
Christina (right) with her grandma, Juanita Walker (left) and her mom, Pam Mutch (center), on her wedding day. All three women are affected by autosomal dominant hypohidrotic ectodermal dysplasia.

Background

Born to a mother with ectodermal dysplasia, I grew up knowing how my condition affected my teeth, and that someday I might need dental implants. I had eight natural teeth, four incisors and four molars – two of each on top and bottom – and wore an upper and lower removable denture starting in first grade.

From grade school through college, I received all my dental care from the University of Missouri-Kansas City (UMKC) School of Dentistry MO), and since 2010 have been treated by prosthedontist Dr. J. A. Lewandowski in Leawood, Kansas. Despite receiving consistent, quality care, and regular cleanings, my teeth eventually began to lose stability, becoming more and more loose over time.

….a few more applicable details…..

My husband and I live and work in the Kansas City metro area. I am an operations manager for a company in the healthcare industry and have a general, broad-spectrum knowledge of health insurance. My husband, John, is a self-employed counselor (LPC) and files his own claims to insurance. Combined, we have a fairly thorough frame of reference for dealing with insurance.

Now on to my journey.

The Prep Work

In 2011, John and I attended the National Foundation for Ectodermal Dysplasias Family Conference where I was evaluated by Dr. Clark Stanford during that year’s dental session. Dr. Stanford recommended that depending on the amount of bone in my jaw, I get lower implants for sure, and possibly upper. After the conference, knowing my situation was only getting worse, I set up an appointment with Dr. Len Lausten at the University of Kansas, an NFED Dental Treatment Center at the time, and started the process of creating a treatment plan.

The intent was to utilize the NFED’s center and Treatment Assistance Program. However, come 2014, when I was finally able and ready to begin the process, KU was no longer a partnering treatment center, and the NFED had ended their assistance for adult implants due to financial constraints.

…..to interject briefly…..

One additional key thing that I did in preparation, which I didn’t fully realize the significance of at the time, was my participation in the NFED’s 40 Women Strong research study in 2012. By participating in this study, I received a full diagnosis – autosomal dominant hypohidrotic ectodermal dysplasia. The program required me to have my primary doctor complete the necessary forms and requests for blood work, which meant everything was filed through my medical insurance. Therefore, it was all on record via the claim process, filed under the ectodermal dysplasia billing code.

….continuing on….

The Journey, Part I

At this point, 2014, my four incisors were beginning to get very loose, to the point where Dr. Lewandowski was not comfortable relining my denture. He was concerned the process might accidentally pull out a tooth. Dr. Lew and I had discussed implants on several occasions previously, so at my next appointment, we got more specific, discussing options, possible oral surgeons, estimating costs, etc. Based on that discussion, I did some investigating:

  • Dr. Lew was already an in-network provider for my dental insurance, but was he also an in-network provider on my medical insurance? Yes.
  • Which of the oral surgeons recommended by Dr. Lew were in-network providers for both my dental and medical insurance plans? Result: only two.

After doing this research, I spoke at length with Dr. Lew during my January 2015 appointment, after which we scheduled an evaluation with oral surgeon Dr. Harold A. Krueger in Overland, Kansas.

In March 2015, Dr. Krueger conducted a 3D cone-beam x-ray. He and Dr. Lew decided that all eight teeth would be extracted, and four implants would be placed in my bottom jaw, with a fixed lower denture and removable upper. In order to do implants in the upper, I would need bone grafting, and that was not an option financially at that point in time. With that, my treatment team and plan were established, and now it was time to work out details – insurance!

Navigating Insurance

Dr. Krueger’s staff contacted my medical insurance company and filed a pre-certification request. The request included medical background from my inch or so stack of records from over the years. After about six weeks of processing, the result was this:

  • Anesthesia would be covered since the procedure was deemed medically necessary.
  • The procedure, implants, and prostheses would not be covered due to an exclusion in my company’s policy.

Dr. Krueger’s rep clarified that since my plan was employer-sponsored, any appeal process would not be beneficial because an appeal cannot over-ride an employer-sponsored plan exclusion. I, too, called and confirmed this personally with my health insurance company, and was also told that my employer’s medical plan used the standard exclusion wording for dental coverage. The only way my procedure would be covered would be if the exclusion was re-worded, which my employer could choose to do.

I did a little more research and wrote a request to my CEO to have the exclusion re-worded. In it, I explained the medical necessity and that this was due to a genetic condition. I further detailed how reworking the exclusion would also benefit others who might encounter tooth loss or the need for implants and/or dental prostheses due to medical reasons other than accident or injury (i.e. cancer). In June 2015, I submitted the request to my company’s human resources (HR) benefits coordinator with some hope but planned for the worst. However, I didn’t do a great job of following up, more on that here in a minute.

The Journey, Part II

Over the next couple months, since my dentures couldn’t be relined, they started to get loose. One day, I coughed in the bathroom and my top denture flew out of my mouth and landed on the floor, slightly cracking the pallet. John witnessed the whole thing and immediately asked, “Have you heard from HR about your request yet?” To my chagrin, I responded, “No.”

He was irritated, to say the least, and at that moment we decided to insert him into the process. I didn’t want to admit it, but I needed him. And, I wanted him….to help. I thought I was being assertive and responsible in following through, but my efforts weren’t getting us answers; I was being too patient. John re-wrote my request elaborating more fully, including his observations and re-submitted it to my company’s HR in the fall of 2015.

The CEO and head of HR reviewed the updated request during the annual benefits review process. They decided to not change the exclusion wording. We were, of course, very frustrated and asked further questions of my benefits coordinator. He explained that even though they couldn’t reword the exclusion due to business reasons, because of the severity of my situation, they wanted to assist me via their philanthropic foundation. Once all the arrangements were finalized, we scheduled surgery for March 9, 2016.

Surgery Day

Come surgery day, I was ready! I followed all the proper recommendations (i.e. no alcohol or caffeine) and was excitedly nervous, but knew I was in good hands. I remember Dr. Krueger putting in the IV for anesthesia. The next thing I knew I was waking up and being assisted into a wheelchair.

That day, the tooth fairy finally came for the first time – ever! Recovery went the best it possibly could. I was on a liquid diet for about two weeks, and then a strict soft diet for another three weeks. After three months, I had a follow-up where another 3D cone-beam scan was done. They determined that my healing was going great.

The implant caps were placed after the second. procedure.

At the end of June, Dr. Krueger performed the second procedure. He accessed the implants and put in the healing abutments (my first Novocain shot – not fun!). My bone had taken to the implants, so we were in business.

These are the healing abutments.

At that point, Dr. Lewandowski took over. He relined my bottom denture so I could resume wearing it with a bit more comfort. After that, it was a series of appointments to make the prostheses. Aside from the extra impressions for the titanium bar, the process was nothing new, as I’d had new dentures many times before. And, other than a little unexpected extra time needed for the titanium bar to be milled, the process of making the dentures happened without a hitch. By mid-Oct 2016, I walked out of Dr. Lew’s office with my new teeth, and haven’t had a problem since.

The Number Crunch

The overall cost was a concern for John and me like it is for many others with ectodermal dysplasias needing dental implants. My situation involved several contributing sources, the combination of which required careful and strategic planning: my employer’s contribution (51%), Straumann’s donated parts (15%), dental insurance (4%) and our individual responsibility (30%).

We heard about Straumann’s Dental Implant Program through the NFED. Once we knew medical insurance was not an option, John immediately contacted NFED Executive Director Mary Fete, and she provided the program details. We spoke to Dr. Krueger and Dr. Lew about the program. Each provider took it from there and contacted Straumann, completed all the paperwork, and followed through as necessary.

Straumann’s titanium bar

Dr. Lew’s office actually petitioned their Straumann rep for assistance covering my bar, which is usually not included in the program, and Straumann agreed to donate a portion of the cost (bonus!). In terms of our responsible portion, John and I utilized our Health Savings Account (pre-tax contributions). Knowing implants were on the horizon, we started saving a couple years prior, and maximized our contributions throughout 2016 in order to alleviate as much financial stress as possible.

The Deeper Side

For me, getting implants was solely out of health necessity, not because I was dissatisfied with my smile in any way, shape or form. Every time I’m complimented on my smile, I am always grateful because I know it’s my smile. However, even though implants were a true medical need of mine, up until this point in my life I had never had to advocate for any of my ectodermal dysplasia needs, medical or otherwise.

Although I thought I could, I soon learned I couldn’t do it alone.

Relationships truly were the key to my journey’s success.

If it weren’t for the people who joined with me, with whom I was vulnerable and trusted with my need, none of this would have happened–relationships with the NFED, my employer, my providers and their staff, and most importantly, my husband. A true relationship requires vulnerability and trust, and getting to that point is painful. Add implants to that, and well, you have a very human experience.

John and I had some tough conversations, tense arguments, and downright angry moments with each other and with those trying to help me, revealing some very raw and real emotions. But everyone was committed to the process and acted with integrity. It was not easy, but it was worth it. I gained a lot of self-awareness from my implant journey, but one of my main takeaways from this process was this:

I am so accustomed to helping others that I often times overlook my own need and/or find it difficult to express, let alone accept help when offered. I truly now believe more than ever before that I can only best help others when I am at my best…but I have to speak up first.

All Smiles,

Christina H.

One comment on “My Smile – Always Has Been, Always Will Be!”

  1. 1
    Susan Barbey on March 16, 2017

    3/16/17 Kansas

    1. You mentioned: “Dr. Krueger’s rep clarified that since my plan was employer-sponsored, any appeal process would not be beneficial because an appeal cannot over-ride an employer-sponsored plan exclusion.”

    I understand that your Plan is self-funded. I disagree with how the doctor’s office advised you. All ERISA self-funded Plans have an internal appeal process. I would have appealed. IF you lost, I’d go for Independent Review even though the employer says it’s not covered under the Plan. A competent person will always find language that it IS covered under the Plan.

    Although self-funded, these Plans often carry the same language as health insurance sold in KS. 1) KS has a health insurance law protecting children from moment of birth from CONGENITAL ANOMALY, Article 2—General Provisions 40-2,102. Study your Plan doc carefully for this Plan language. 2) many Plans cover accidental injury to “sound and natural teeth”. LOOK at your Exclusions page under exclusions for Dental EXCEPT accidental injury to “sound and natural teeth”. In your appeal which you are entitled, you need to explain that your accident happened in-utero. To exclude your care needed due to congenital anomaly is discriminatory and not in keeping with the INTENT of Plan benefits.

    Suggestion: In the future–file with your medical Plan at work. Appeal and don’t quit until you win.

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