By Jamie Sommerville

I am one of eight people in my family diagnosed with x-linked hypohidrotic ectodermal dysplasia. In addition to diminished sweat glands and sparse hair, I have 12 missing teeth and microdontia.

I’ve worn dental prosthetics my entire life, and in 2005 and 2008, I received bridgework and crowns on my lower and upper jaw. In 2018, I began a three-year journey to get my medical insurance to cover a comprehensive dental surgery.

Sticker Shock

In February of 2018, I sat in a prosthodontist’s office to discuss a treatment plan for my lower jaw. I had prosthetics placed in 2005 and 2008, but it was time to pursue a more permanent option, starting with my implants and crowns in my lower jaw.

After receiving a quote for over $50,000, I called the National Foundation for Ectodermal Dysplasias (NFED) asking for advice. From Kelley, I received empathetic support and the practical tools I needed to get my journey started.

Learn More about Insurance Assistance Program

My Treatment Timeline

I first visited Ozark Prosthodontics in 2019. This is a 3D printer for teeth that they have!
  • February 2018 – Met with a prosthodontist to create a treatment plan
    • Note: Throughout 2018, I made an unsuccessful attempt to get dental insurance to cover the treatment.
  • February 2019 – Met with primary care provider to request referral to prosthodontist
  • February 2019 – Insurance denied referral and treatment claim
  • March 2019 – February 2020 – Submitted multiple appeal letters to medical insurance
  • April 2019 – First appointment at Ozark Prosthodontics
  • February 2020 – Submitted appeal to Department of Managed Healthcare (DMHC)
  • March 2020 – Approval for full dental treatment granted by the DMHC
  • August 2020 – Implant surgery at Ozark Prosthodontics
  • April 2021 – Final crowns (10 total) will be placed

When I began this journey, I did not know it would take so long to complete the treatment. As I near the finish line, I wanted to share a few tips for enduring the medical insurance process. This isn’t medical advice, but it is what I would do again if I found myself in the same position.

Tips for Enduring the Medical Insurance Process

  • Review the NFED’s Insurance Toolkit (Pro tip: Print it out and get a thick binder.)
  • Request a patient advocate to work with your case. My advocate came from the Medical Care Solutions department at my insurance company.
  • Carefully document and store all phone call notes, correspondence, referrals, appeals, denials, etc. I scanned all of my files and created a digital phone call log to record notes. Organization comes in handy for the appeal letters. You will likely get denied at first pass.
  • If denied multiple times, try appealing to your state’s insurance regulatory agency. In California, it is called the Department of Managed Healthcare (DMHC). My prosthodontist and an advocacy service (Alight Solutions) helped draft the appeal documents with me.
  • Start working on a treatment plan early. It helped for me to meet with my doctor before the treatment became urgent so I could be patient – 2.5 years to be exact!
  • Choose a prosthodontist that bills with medical insurance, or is willing to learn how to do this. I went out of state to Ozark Prosthodontics, who has a team of amazing doctors and are insurance wizards. Ozark is one of the NFED’s Dental Treatment Centers.
  • Thank those who help you along the way! Creating allies within your insurance company, your doctor, and friends/family is an important part of the support process.

Finding Ozark Prosthodontics

In the NFED Insurance Toolkit, I noticed a list of NFED Dental Treatment Centers. I decided to call Ozark Prosthodontics and spoke with a patient advocate. I was seeing an in-state prosthodontist at the time, yet Ozark still gave me practical tips and even offered to speak with my provider.

After sharing this information with my prosthodontist, I was told that they do not work with medical insurance, even if I was eligible for coverage. I was disappointed by this news, but my story gets very interesting at this point.

I called Ozark Prosthodontics asking if they work with out-of-state patients. They said YES! I booked a trip to Fayetteville, Arkansas and met with their team of doctors who created a treatment plan. My particular insurance case was very long, but Ozark never gave up on me.

We tried every avenue and eventually appealed to the California Department of Managed Healthcare in February 2020 and the treatment was fully approved!

I’ve now visited Ozark Prosthodontics a total of four times for my treatment. They have accommodated me by offering Zoom appointments along the way, and I only have one more appointment left to receive final crowns. The advocacy of Ozark, as well as their treatment, has been one-of-a-kind.

I was fitted with crown prototypes in February.

Advocating for Change

Additionally, I cannot express how rewarding it has been to partner with the NFED during their advocacy events. They make it SO easy to participate and it’s encouraging to meet other NFED families. I participated in 2020 and my local legislator co-sponsored the Ensuring Lasting Smiles Act (ELSA) after he heard my story.

You Can Do It!

For those who are in the process of obtaining medical treatment, or have received more “denial” letters than you can count, know that I understand your hurdles, the tears, frustration, and the overall hard work it takes. It is all worth fighting for, and I am cheering you on from the other side.

Jamie Sommerville is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in California and is affected by x-linked hypohidrotic ectodermal dysplasia.

9 comments on “What I Learned from My Three-Year Dental Treatment Journey”

  1. 1
    Jeanne Marley on March 9, 2021

    Thank you so much for sharing your story! We live in California as well. I’m very interested in your journey because my daughter is 23 and just starting her dental treatment. I’m not sure yet if the insurance will cover it but I see that Ozark is listed on our insurance plan. That may be where we end up going too!

    1. 2
      Jamie S on March 9, 2021

      Jeanne, I’m so glad to hear this post was encouraging. When I started the process a few years ago, I wish I knew of others in CA who had success with medical coverage. While I can only speak for myself, my medical plan has covered the entire treatment, and I haven’t paid a single bill except for flights and lodging to AK. Wishing you all the success in your daughter’s treatment – and Ozark is the best of the best!

  2. 3
    Jeanne Marley on March 9, 2021

    Your smile is beautiful❤️❤️❤️

  3. 4
    Shelly Dimann on March 9, 2021

    Great blog Jamie!
    Love you, Aunt Shelly

    1. 5
      Jamie S on March 10, 2021

      Thanks for reading, Aunt Shelly!! You inspired me to endure because of your own success in getting medical coverage. Love you!

  4. 6
    Benadine O'Neill on March 9, 2021

    So like you dear Jamie to help others through the insurance nightmare you endured! Love you sweetheart💖 Great Aunt Bennie

    1. 7
      Jamie S on March 10, 2021

      Appreciate you reading this post – and thanks for commenting too!! You have always been encouraging. Love you so much 🙂

  5. 8
    Tatiana Sorokina on March 13, 2021

    Thank you so much! Definitely will be looking into the documents provided here. I am in Canada, and my journey has started with the same bill… Plan treatments are at hand. Now have to solve financial aspect, since I have to cover all the usual obligations and needs for my three children along the way.
    Very happy for you!

    1. 9
      Jamie S on March 17, 2021

      Tatiana, I am rooting for your success! My Aunt had to work incredibly hard to get approval for her two kids, but her persistence and success was my inspiration to keep going. Every time I received a denial letter, I just kept moving forward with the next appeal option. Hope these tips and the NFED resources can be of help and encouragement!

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