Sunday, January 20, 2013

A personal story...

Last week I mentioned that my insurance company no longer wants to pay for the medication I've been taking for the past decade.  I'm in the process of appealing this.  It has been extremely stressful.  I sought help from my doctor, who said there was nothing she could do to help, and from the state insurance commissioner, who told me his office won't get involved until after the appeal is completed.  I requested additional information from the insurance company; in response, I got a letter stating that I could submit a request for more information.  After a week of this, I realized that I was going to have to figure out the whole appeal thing by myself; nobody was going to help me.  So I got to work.

The first thing I did was write a brief personal statement about how the medication has helped me and what the consequences will be if I can no longer take it.  This was fairly easy and I finished it quickly.  The next part was a lot harder.  My task was to find empirical evidence demonstrating that the medication at the dose I'm taking is effective.  I worked on it all of last week.  I finally finished it on Friday and faxed it to the insurance company.  Now I just have to wait.

Because I've been so consumed with this whole insurance things, I haven't had much time to think about blogging.  Still, I like to be consistent in posting something at least once a week.  So today I though I'd share the personal statement I sent the insurance company.  It's part of my story and it's a part I've never talked about on the blog.  Anyway, here it is:

My name is Melody.  I have narcolepsy.  My symptoms started during my senior year of high school.  I began falling asleep in my classes.  I remember one occasion when I fell asleep during a test.  When I woke up, everyone was passing their tests in.  I looked down at my own paper, which was completely blank.  I realized with dread that I’d slept through the entire thing.  Needless to say, I failed that test. 

I started college the following year.  I struggled to stay awake during lectures.  In between classes, I’d crawl into the back seat of my car and sleep.  One morning, I fell asleep while I was driving to school and caused a car accident.  I decided then that I needed to see a doctor; something was seriously wrong.

I related my concerns to my psychiatrist, who was already treating me for depression.  Over the next two years, my doctor prescribed a number of medications at different doses in an effort to control my symptoms.  I tried methylphenidate, dextroamphetamine, and mixed amphetamine and dextroamphetamine.  None of these medications successfully alleviated my symptoms.  Finally, my psychiatrist recommended I see a neurologist.

The neurologist ordered an overnight sleep study and a daytime MSLT.  The results were suggestive of narcolepsy.  Later, he ordered blood work to test for specific human leukocyte antigens (HLA) strongly associated with narcolepsy (I tested positive for these antigens).  After all the tests were completed, the neurologist diagnosed me with narcolepsy; I was 21 years old. 

Having a diagnosis didn’t solve the problem.  The neurologist initially prescribed modafinil.  Still, I kept falling asleep: at school, at work, and while driving.  After trying modafinil, the neurologist prescribed Adderall XR.  He started me at 30 mg. first thing in the morning and 15 mg. a few hours later.  This controlled my symptoms until about 2:00 in the afternoon.  Unfortunately, I had several classes later in the day (I was still in college); I couldn’t simply go home and crash at 2:00 PM.  My neurologist gradually increased the medication dosage until we arrived at a dose that successfully controlled my symptoms throughout the entire day: Adderall XR, 30 mg., three times per day. 

I have been on Adderall XR at this dose ever since.  I have been able to live an almost normal life.  I graduated college and went on to graduate school.  I have a successful career as an outpatient psychotherapist.  Never once have I fallen asleep during a patient’s session.  I can drive the forty five minutes to and from work without fear of falling asleep behind the wheel.  I can go to the gym after work, come home, and eat dinner with my husband.  I can wake up the next morning and do it all again.  I can function.  I can live.

And now all of that is in jeopardy.  My health insurance company changes its rules and decides it will only pay for Adderall XR 30 mg. once a day.  This is one third of the dose I’ve been taking for the past nine years.  They say I can continue taking Adderall XR 30 mg. three times per day, but I’ll have to pay for what they don’t cover.  It will cost me around $300 a month.  I simply cannot afford it.


  1. I hate insurance companies and I hate our current health care system :( I hope this gets worked out for you.

  2. Not to give the insurances companies more bottom line....Do you know yet if your body adjusted to less or had the same problem reoccur? Our bodies sometimes will no longer need a drug as much as we age.
    For the insurance companies, not Doctors...Making money off of people's suffering is NOT right livelihood Buddha spoke of.

  3. Sorry you are going through this. I worked as a medical provider and I also worked for a health insurance company. Here are my suggestions: Your doctor can help. He/she can write a letter stating that in his/her medical opinion, this is the medication and dose you need to stay healthy. If your doctor doesn't do that, find another one. When you get your letter back from your insurance company stating why they reject your appeal (they probably will the first time), it should say their reasoning and also next steps. Take the next steps. Persitence pays off when trying to get something covered. See if your state has some kind of organization that helps consumers. Another avenue is to contact your HR department. Companies select insurance providers. If you don't like your insurance, it is usually because your company selected not to cover certain items to control costs. Finally, if you do have to decrease your dose, document your symptoms, etc and use this in your appeal of how it is cost effective for you to be on your medication (and not getting in a car accident and having other medical issues or having to continue to go back to your doctor to get your medications adjusted, etc.) I also wonder why they changed this policy. Have studies shown this medication at large doses isn't needed? There must be some medical evidence for their change.

  4. This is truly unfortunate and I feel sorry for you. I imagine the difficulty your sickness has brought in your life. And though you have a treatment that works perfectly for you, the comfort you've found is now in jeopardy. Since your insurance company has been covering your medication for the past nine years, did they tell you the reason for the rule change? Review the contract, and seek the help of a lawyer to make things clear for you on what your next step will be. As for me, I can smell a breach of contract.
    Janay Stiles


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