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Insurance Companies vs. Doctors: Coverage varies from State to State on Autism Treatments

Autism insurance and doctors

My family has spent the last several years living outside our home state of Indiana. Moving was a huge adjustment for all us- particularly my oldest Autistic son. I spent the first few years we were away fighting for proper education and doctors for him in Washington State. The wait lists are ridiculous in the clinics across the United States. Not to mention the irritation that comes in when you have to involve different health insurance companies!


I waited 18 months to get a place for Zain with a proper Autism Specialist. In some areas, 18 months is a short wait time too. Then right when he started to get used to us living away from family and seeing new doctors we were blindsided with the prospect of moving, again. Like millions of people across the United States have experienced before us- my children's father was unexpectedly laid off from his job. Unfortunately, at that time we had no probable plan that would allow us to stay in that area; given that, we decided to move back home. A daunting task for my son as it entailed more change.

Due to his difficulty with the change, I didn’t take the decision lightly. None of us did. I thought out (what I thought was) every possibility. Unfortunately, I didn't anticipate the difference in permitted medical care between states. Before the layoff, we had been living right outside of Seattle, WA. In the time we were there I'd established exceptional medical care for Zain, Dryden (my youngest) and myself.

Zain was lucky enough to be seen by a Specialist at Seattle Children's Autism Clinic on a regular basis. The man he saw consistently did everything he could to help us, regardless of cost. The hospital even went as far as to genetically test Zain-and us, at no cost. This generous move led to a discovery of a genetic link to Autism in both my husband and my child. They used the findings in their research therefore we still got the results and they were able to do it for free. That place was amazing!

While in Seattle

While we were there Zain's doctor was Dr. Hower Kwon. He got him onto the greatest medication cocktail we have ever used. It took us years to find the right mixture of medications in Indiana prior to this. I have, in the past, tried numerous medications for Zain to no avail. Zain struggles with several severe disorders. He battles Severe Insomnia, Intermittent Explosive Disorder, OCD, Anxiety, Speech Apraxia, a TIC disorder, and of course, Autism. I was desperately trying to find him relief from the symptoms he’s dealt with most of his life. He is particularly plagued with the severe meltdowns and insomnia. Seattle Children's was able to get his meltdowns down to a minimum and at the same time treat his other disorders alongside his insomnia with very few medications. It was astonishing.

The catch was that the antipsychotic we were utilizing in the cocktail wasn’t approved for the use in children, or for the use in the treatment of Autism. The name of the medicine was Geodon. Geodon is, “used to treat acute manic or mixed episodes associated with bipolar disorder and to treat symptoms of schizophrenia,” as described by their website. This medication may not be approved for what we were using it for, but I assure you that many Autistic adults use it every day for the same thing we were. You must understand that many of the medications that we parents’ use to treat Autism fall into the same category of “not approved.” Not to mention we had tried the ones that are approved, plus some others that aren’t, none of them had worked. All of them were well researched before started.

While in Washington I had zero problem getting Geodon filled for Zain. The insurance companies there understood that he needed it to function smoothly. They didn’t even mind that he took it in two different dosages, twice a day. At 60 mgs in the morning and 40 mgs at night, making the prescription even more expensive for them to fill. The medication made a world of difference in Zain’s life from about 3 weeks into starting it. It was remarkable how different he was while on it. Before we started that med, he was taking a very large dose of Seroquel and was still experiencing very little relief in the symptoms he feels. He would have these horrid meltdowns where I was often hurt. He also jumbled his words together quite regularly and had a hard time communicating his needs to us. There were many times he experienced hallucinations throughout his life as well. The Seroquel didn’t help at all with any of this. Geodon did. It also continued helping with the things the Seroquel did positively benefit.

Moving Back

When we decided to move back I never in a million years thought the insurance company in Indiana would look at my child's medications and refuse to give him any single one of them.

The concept of denying any medications that work and that a child had successfully taken for 5 years never crossed my mind.

At the time, he had been on Geodon for 5 years. Once we settled in Indiana the insurance company here pulled Geodon from him without providing a way to taper him off it. That’s dangerous; of course, they didn’t care. They also denied our doctor’s well written appeal. I knew they would and even our doctor’s office warned me that they probably would deny it. I, none the less, had hopes that they wouldn’t seeing as though the appeal was so well written and provided so much detail. We even included his records from Seattle documenting the improvement once he started the med in the appeal. None of it mattered though.

Less than a week later they severed our last hopes of being able to continue with the care we had been using for years. I was devastated when they reached their decision. It shouldn't have surprised me though. After all, some insurance companies in the U.S. still claim ABA Therapy is "unproven" even after countless studies proving the contrary. They just don't want to spend the near $60,000-$100,000 a year it costs to pay for it, per child. Without insurance, there is no hope a family can afford that. Without insurance help there was no way I could afford Zain's medication either. The prescriptions would cost over $1,500 a month without insurance. I didn’t know what to do. The insurance company was nice enough to send me a letter listing what medications they would allow his doctor to prescribe though! Only a few we hadn’t tried.

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They come to these decisions despite a doctor seeing a need and prescribing said medications. In my family’s case, the insurance company decided what medications an Autistic teenager could have without ever seeing him. They decided that they ultimately know more about Autism than Seattle Children’s Autism Clinic does. A clinic that is in the forefront of care and research in the Autism field. They essentially were saying they know more than them!
Their decision that day changed everything in my son’s life. His whole world got thrown into turmoil. He went from stable to confused and angry at a very rapid rate. There wasn’t a single person from the insurance company that had to see or help deal with any of what they created either. That was left to me, his teachers and the doctors that originally tried to help us. It took me 6 months to get Zain into a new specialist to get care.

That is 6 months a, then, 13-year-old suffered through:

  • anxiety attacks
  • meltdowns
  • jumbled words and thoughts
  • no sleep
  • increased trouble with social interactions
  • little ability to maintain any length of eye contact
  • an intolerance for any change

Let’s not forget that new doctors are stressful. There’s so much to remember and explain to them. Plus, it takes a while for us all to build a relationship and for the therapist to learn our children’s behaviors. Sometimes you also find that the professional isn’t too professional once you meet them. A lot of time, us parents seem to know more about Autism then the doctors being paid to treat them do. I was terrified I was about to walk into a situation like I had a million times before. We all know those situations, when you start a new doctor for your child’s autism and leave the appointment assured you know more than the doctor does. I’ve had doctors tell me I know more than they do about it. It is never comforting to know there is so little quality care out there. To top it all off, we had to travel several hours to reach the new therapist because there were none in our area that accepted his insurance and saw Autistic children. That wasn’t a one time trip either.

Beginning with a New Specialist

We’ve been seeing the specialist for 2 years, so far. Fortunately, the new therapist seems to know what he’s talking about, which is a relief. I never put too much into the initial appointment though! In addition to seemingly knowing his stuff, he seems to care about Zain. He also has an extensive background in Autism. Which is, of course, very important. At the first appointment, we went over medical and family background; per usual, we also talked about his challenges at home and at school. He spoke to me about what his plans for the future are for him as well.

He then ordered blood work and prescribed a new anti-psychotic to try. The medication is called Saphris. It’s was new to us and after two years of use we don’t like it. Somehow, I doubted it would work as well as the Geodon, and I was right. We do not have much of a choice but to use this medication though. Not because of a lack of other ones to try, or even because we don’t know what will work-because we know what medicine will work for him already. It is because of the insurance company. They didn’t care much about the potential side effects of their suggested medications either. The thing that ticked me off the most is that Saphris is used for the exact same thing Geodon is used for, yet he can’t have the Geodon.

Per Rxlist.com, Saphris (asenapine) is ‘an atypical antipsychotic psychiatric medication used to treat certain mental/mood disorders (such as schizophrenia, bipolar disorder).”

Saphris Side Effects:
-numbness or tingling of the mouth
-dry mouth
-sleep problems (insomnia)
-upset stomach
-weight gain

The website goes on to further describe less common side effects such as:
-muscle/nervous system problems (extrapyramidal symptoms-EPS)
-feelings of anxiety/agitation/jitteriness
-drooling or trouble swallowing
-constant need to move
-shaking (tremor)
-shuffling walk
-stiff muscles
-severe muscle spasms or cramping (such as twisting neck, arching back, eyes rolling up)
-mask-like expression of the face.

Saphris is a sublingual (under the tongue) tablet, which is what my son hates the most about it. Dosage is individualized to the patient's need and response to treatment. The usual dose ranges from 5 to 10 mg taken twice daily. Zain takes 7.5 mgs twice a day. Despite the potential side effects, he needs a medication. He cannot function correctly without it. He doesn’t even speak without medication, or use the toilet, or sleep at all- among many other effects of his Autism. The scripting and echolalias. The repetitive play and need for constant routine. THE MELTDOWNS! This medication diminishes the issues he has all the way around, just not as well as the Geodon did. All because of an insurance company’s decision, without meeting my child.

The Bottom Line

All over the country doctors are frustrated, the pharmacies are irritated and us parents are getting discouraged. Our children’s medical care is coming down to technicalities and money. Medical care should be the same across the nation, not vary state to state; and, the bottom line should never be cost when a child is concerned. Something needs to change, and soon. Just getting the people in charge to all sit and listen to us talk about the subject is difficult in itself. Though, I have found that difficult subjects are normally the most important to tackle. Let’s hope this difficult topic is tackled on a national level soon because some of us don’t have forever to wait.

“One of the most difficult things everyone has to learn is that for your entire life you must keep fighting and adjusting if you hope to survive. No matter who you are or what your position is you must keep fighting for whatever it is you desire to achieve.” -George Allen, Sr.