Never Accept an Insurance Denial

I still recall how frustrated I was when our insurance company denied speech therapy for Teddy. At that time, he was 15-months old and completely non-verbal. He lacked the ability to attend to toys and honestly interact much with people including making eye contact and tracking motions. His speech scores were the lowest of all his test scores, with many of his skills in the 0-3 month range. That's tough for a parent to hear, although we obviously knew he wasn't going to score well.

Even tougher was hearing that the insurance company didn't feel it was necessary for him. At first, I was downright mad. Many an inappropriate word left my mouth, and it was very difficult not to write an appeal based on emotion. Instead, I did what research I could and wrote an appeal based on as many factual aspects as possible, which was a bit difficult without a true diagnosis for Teddy. This was the appeal: 

Dear Sir or Madam:

My son, Theodore Blondheim, is a 15-month-old boy who has been diagnosed with hypotonia by his pediatric neurologist. To remediate this condition, Theodore has been receiving occupational therapy and physical therapy and has met several of his therapeutic goals in these areas within the past two months. All concerned believe continued therapy is crucial to overcome this condition.

Humana denied a request to begin speech therapy for Theodore beginning September 11, 2014. The denial was issued because therapy was deemed a non-medically necessary service to address learning disabilities.

Theodore’s hypotonia affects the muscles throughout his body and is not restricted to his trunk. His hypotonia affects his oral motor musculature. A child with hypotonia, “lacks head and chest control and exhibits low tone in the face and mouth. Sucking, chewing and swallowing are difficult for these infants and toddlers. Drooling food and saliva from the mouth is common and may persist in the school age child,” according to “Early recognition and intervention is the key to recovery for Benign Congenital Hypotonia” by Shannon Munro Cohen, RNC, BSN and Teresa Whitt, Ph.D.

Theodore has demonstrated constant drooling, unassociated with periods of teething. With the assistance of his occupational therapy, Theodore has learned the motions of bringing a sippy cup to his mouth to drink. However, Theodore is unable to properly swallow liquids from sippy cups without soiling his shirt within a few sips as he lacks the muscle control to appropriately drink from a sippy cup. When Theodore wears a pocket bib, the entire pocket of the bib is filled with the liquid within 5 minutes of attempting to drink.

Hypotonia is not a developmental disorder or childhood delay. If left untreated, my son will not properly develop meaningful speech or coordinated motor abilities related consumption of food and beverages. Lack of meaningful speech and these motor abilities would result directly in a deterioration of my son’s health and safety, in that he will not be able to communicate medical needs and will be unable to function in daily life skills involving eating and drinking that are directly related to his health and wellbeing. 

Speech therapy is among the least expensive and least invasive form of treatment accepted by the medical community and is not implemented for the convenience of the child or therapist.

Since hypotonia is a medical condition and not a developmental delay or disorder, and since speech and therapy is medically necessary, we are asking for three months of speech therapy followed by a reevalution.

Thank you for your assistance. 

Within a month or so, the initial decision was reversed, and we were into speech therapy with an awesome pediatric speech therapist. Teddy has benefited so much from this therapy, and we were so happy to get it approved for him. (Unfortunately, at the time I'm writing this post, we're waiting yet again for re authorization of speech therapy.)

That wasn't the only appeal we had to write. He was denied for genetic testing to test a specific gene related to seizures. As much as the speech therapy denial upset me, I was livid with this one because he had two seizures within two days of receiving the denial. Once again, I tried to appeal with reason instead of emotion, and this was the appeal:

Dear Sir or Madam:

My son, Theodore Blondheim, is a 16-month-old boy who is currently diagnosed with febrile seizures by his pediatric neurologist. However, Theodore’s seizures do not follow the typical pattern of febrile seizures, which is why Theodore was referred for genetic testing and consultation. Theodore has had five separate seizure episodes, two of which involved multiple seizures, with the most recent episode occurring November 16, 2014. According to the National Institute of Neurological Disorders and Stroke, “The majority of children with febrile seizures have rectal temperatures greater than 102 degrees Fahrenheit.” In only one instance did Theodore’s temperature exceed 102 degrees Fahrenheit, and in two instances his temperature was below 100 degrees Fahrenheit.

Humana denied a request for SCN1A sequencing genetic testing November 14, 2014. The denial was issued because this testing was deemed a non-medically necessary service. The specific reason cited in the phone call I received November 14, 2014 was the results of this SCN1A sequencing genetic testing would not alter the treatment or care of Theodore’s condition. 

Theodore’s geneticist, Dr. Gunter Scharer, indicated the SCN1A sequencing genetic testing could alter the course of Theodore’s treatment, specifically providing a list of potential medications to avoid to prevent significant negative reactions. This is supported by the National Center for Biotechnology Information (NCBI), which states individuals with SCN1A-related seizure disorders should avoid “AEDs: carbamazepine, lamotrigine, and vigabatrin, which can induce or increase myoclonic seizures; phenytoin, which can induce choreoathetosis.”

Additionally, the NCBI states, “Use of the ketogenic diet to decrease seizure frequency has been beneficial in some affected individuals.” This means the results of this SCN1A sequencing genetic testing could, in fact, result in a course of treatment that is among the least expensive and least invasive accepted by the medical community.

It is apparent Theodore’s seizures are still a significant medical concern given that he unfortunately had another seizure two days after Humana issued the denial regarding this request. Since the results of the SCN1A sequencing genetic testing could significantly alter the course of Theodore’s medical care; AND alternative laboratory or clinical tests to definitively diagnosis the genetic disorder are unavailable; AND the SCN1A sequencing genetic testing is a clinically valid test, based on published peer-reviewed medical literature; AND Theodore has not previously received this genetic testing; AND the testing panel is for a specific gene deemed medically necessary to establish a diagnosis, we are asking for approval of this specific test.

Thank you for your assistance. 

Again, thankfully, we were successful with the appeal. Although we didn't learn a diagnosis from this particular genetic test, we were then able to move onto the next level of testing. That next level of genetic exome sequencing was the test that gave us a diagnosis after nearly 2 years of searching.

I wanted to share these appeal for two reasons: 

1. First and foremost, don't give up hope if you receive a denial for services. Don't let an insurance company decide what is best for your child or loved one. Get mad, but then do something about it. There are processes within every insurance company to appeal. And there are, at least in Wisconsin, processes to appeal the insurance company's decision if their internal process doesn't yield a favorable result.
2. By no means am I an expert after writing two appeals, but I'm more than happy to help others with this if they cannot find the support they need from their treatment team. I wanted to share the specific language I used to give others an idea of what worked for us and the general format we used. I would give credit to the original place online where I found an appeal to model ours after, but I don't recall what it is.