Battling my Insurance Company for Coverage
I have struggled with depression my entire life. Before I even knew what mental illness was, back in a time when it was the gorilla in the room that nobody talked about, I knew something was different within myself. Off. Wrong. Unlike many people suffering from depression that can pinpoint a specific period in their life that marked the onset of their illness, mine seemed to always be present, lingering and lurking in the shadows for as long as I could remember. Though years of abuse, trauma and dysfunction contributed to its intensity, those demons of depression have always been there, tormenting me.
Throughout my childhood, my mother struggled with often untreated, always under-treated bipolar disorder. It was a dark shadow that hung over our family. Mental illness was not something spoken about in our house. Appearances were everything and it was a dirty little secret, our family legacy, that we all knew was there but no one ever discussed. When I was a teenager, she shot my father. When her secret was revealed, I saw firsthand the stigma of mental illness. Friends and neighbors who once sang her praises ostracized her. She simultaneously became a punchline to laugh at and a monster to fear. Back then, I never spoke out openly about my own struggles because I knew all too well how people reacted to mental illness.
In my twenties, the weight of my depression became to heavy to bear. I began having breakdowns, unable to fully cope with the pressures of life on my own. On and off throughout my adult life, I have tried reaching out for professional help. Doctors prescribed a wide variety of antidepressants and anti-anxiety medications in different dosages and combinations with no apparent rhyme or reason, as if they were playing whack-a-mole with my mental health. Nothing seemed to help. Time and again, I would become so discouraged with the waves of prescriptions with horrific side effects and no beneficial progress that I would stop treatment, retreating back into the shadows to suffer again in silence.
This past year, an angel appeared to help me battle my demons. I was blessed to find a new doctor who actually listened to my past struggles instead of going through the motions of standard mental health treatment by continuing with the painful game of whack-a-mole that had been my previous experience. He thought outside the box, wanting to run tests to better understand why I had been so resistant to medications and to help pinpoint which drugs might be a better choice for me.
He arranged for me to take a genesight test. A cheek swab and a few vials of blood later, the lab had my complete genetic makeup on file. Based on my genetic markers, this test could determine which medications my body could and could not metabolize and which were likely to cause moderate to severe interactions. I had never heard of such a test before, but my insurance covered it and I was at the end of my rope, with very little hope, willing to try anything.
The results of this test were mind-blowing. Not only did the test identify that many of the prescriptions my previous doctors had prescribed would cause moderate to severe interactions and should never be given to me, the test also revealed something completely unexpected. I have a rare genetic abnormality. Due to this genetic mutation, my liver is unable to break down folic acid. The broken down version of folic acid, l-methylfolate, is used by the brain as a conduit to help the brain transfer the chemicals needed to regulate and moderate moods.
Finally, my lifelong struggle with depression made perfect sense. Because my body could never break down folic acid into l-methylfolate, my brain was never able to properly regulate my moods. No matter what my body could make on its own or what doctors had prescribed, it was unable to get to the part of my brain that needed it because the l-methylfolate was never present to transport it where it was needed. Because my liver genetically was unable to break down this vitamin, my brain had literally been starving for a basic b vitamin my entire life. It was an easy solution, though. There is a prescription form of the broken down version of folic acid, l-methylfolate, on the market. It is called Deplin.
This discovery was a life-changer for me. I finally had hope where previously there was none. With Deplin, my brain would finally be able to regulate and moderate my moods. Prescriptions that previously were unable to get where they needed in my brain would finally have a chance to work. I was given a ray of hope for a semblance of a normal life where I was not struggling to battle the demons of my depression every moment of every single day. My doctor, my angel of hope, began me on samples of Deplin, six to a box, as we applied for coverage from my insurance company, CDPHP.
It seemed a clear cut and dry request. CDPHP had fully covered my genesight lab work. The lab work identified that, due to a genetic abnormality, my liver was incapable of metabolizing and breaking down folic acid into l-methylfolate, a substance needed by my brain to combat my depression and regulate my moods. A pharmaceutical company manufactured a pill form of the broken down version of folic acid that I needed. It wasn’t an experimental or new substance. It had been thoroughly tested, approved and was readily available on the market to be prescribed for those who needed it. It was even less expensive than many of the previous antidepressants and anti-anxiety medications that I had tried without success, though still more than I could afford to pay out of pocket.
However, much to my doctor’s and my surprise, CDPHP refused to cover my Deplin. The first time it was rejected, we were told that they had determined there was a cheaper alternative available. Their “cheaper alternative” was folic acid tablets. Folic acid that my liver was incapable of breaking down on its own. I called up CDPHP’s 800 number provided on my denial letter and pleaded my case, explaining the lab results, why I so desperately needed the Deplin covered and why the cheaper alternative would not work for me. They suggested we resubmit the claim, assuring me that, based on my explanation, it should indeed be covered.
Yet again, the next claim was denied. I was told that CDPHP does not recognize the results of the genesight test so they could not cover any medication determined necessary based on the results of the test. My mind was blown. CDPHP fully covered this lab work being done, yet refused to acknowledge the results of the very test they had paid for. Because of this, Deplin was considered not medically necessary. Furthermore, they refused to acknowledge the list of prescriptions to avoid determined by the genesight test as likely to cause moderate to severe interactions. CDPHP refused to cover the antidepressants deemed safe for me based on my genetics because “other anti-depressants were available”, regardless of the fact that the prescriptions they were referring to were all either on my genesight list of prescriptions to avoid or they had been previously tried with adverse effects.
Meanwhile, I am living off of sample boxes of both my Deplin and my antidepressant. There is a noticeable difference in the last few months. My depression is by no means cured but I have an easier time coping, I find myself genuinely smiling sometimes, I have real hope where previously there was none. Yet, there looms anxiety and stress over my ongoing battle to get my prescriptions covered. I am currently drafting both an internal and external appeal to get my prescriptions covered, though my doctor, my guardian angel, has informed me there’s little hope for a positive outcome. He has dealt with this system for years, explaining that the insurance companies and the government work hand in hand and never want to pay for anything more than they absolutely have to pay for, regardless of whether or not it is needed.
I’m honestly at a loss. I want to hold onto hope because I desperately want to get better. I want to fight this depression, to heal and have a chance at a semblance of a normal life. Yet I find myself anxiety-ridden every time my doctor opens his sample drawer, fearful of the day when his sample supply runs out. I’ve been living off of those sample boxes, six pills, six days to a box, for months now. I know his supply won’t last forever. I dread the day when he runs out and I have to go back to that life without hope, drowning in a depression that nothing could touch, all because my insurance company refuses to cover the medication that a test they covered says I need. I’m battling for my life here. I’m fighting for my mental health.
Status Update 2/2/17:
I was informed this week by my doctor that his supply of samples of Deplin has come to an end. The news was bittersweet. As he handed me the last of his supply of the medication I desperately need to treat my mental illness, I calculated that I barely have enough to last another week and a half. He suggested I try to stretch out the last pills by taking the remainders on alternate days to keep some in my system as long as possible before they run out. Yesterday was my first day without one and I could honestly feel a distinct difference – less energy and pep, less motivation to even do basic tasks. I found myself crying more easily and my mind drifting back down into that darkness more easily than it had in months. I’m genuinely scared.
I consider it bittersweet for two reasons. The first being the obvious fact that I have finally found something that genuinely helps with my depression. While it is far from a panacea, the difference is clear and vast. The end to his supply of samples also means that instead of filing a long, drawn out appeal to have this medication covered, I can file for an expedited appeal, which is decided within 72 hours.
I began the process today. My first call was to CDPHP itself, to begin the expedited appeal process. My next call was to Assurex Health, the company that conducted my Genesight test that identified my gene mutation that determined I needed Deplin. I spent a good hour on the phone with different departments as they suggested everything from reports and information packets to clinical data from their genetic studies to submit for my appeal. My next call was to Pam Labs, the pharmaceutical company that makes Deplin, who offered to send me whatever information I needed to help fight for drug coverage.
After speaking to both companies, I received a call back from CDPHP’s appeals department to inform me that they received my expedited appeals request and that I will receive a decision by tomorrow afternoon. The woman I spoke to also claimed that CDPHP never approved nor covered my Genesight test, a claim I found very fishy. Every single other time CDPHP has denied coverage for anything, not only did my doctor receive a packet explaining their decision to deny coverage, but I was notified, as well, with a decision number in case we decided to dispute it. Six months after the test was completed, I have received no notification that it was supposedly not covered, nor has my doctor ever mentioned such a thing to me. I spent over an hour on the phone today with the company that did the testing themselves, as well, and though I spoke directly with the billing department who needed my order number to pull up my test before the lab technicians could speak to me, not a single person at Assurex Health even offhandedly mentioned anything about not being reimbursed for the labwork, nor in the last six months has that lab ever attempted to contact me regarding payment. I have never been one for conspiracy theories but I cannot help but question the validity of CDPHP’s appeals department claim that they never approved nor paid for the test.
I am thoroughly prepared to fight for my medication to be covered through whatever channels I must in order to get it covered. It has been recommended, as well, that I contact a local reporter who specializes in stories about health coverage since I already have a relationship with that station after doing a story with them this past fall. My flight response has always been high but this is one fight I cannot allow myself to run from because my mental health is too important – I must continue my fight for coverage through every and any avenue available until I get the medication I need.
Status Update 2/7/17:
My expedited internal appeal was denied, despite sending CDPHP almost one hundred pages of paperwork, between clinical study data provided by Assurex Labs and multiple articles both about my specific gene mutation and the use of l-methylfolate to treat it when a patient is treatment and medication-resistant. My next step is to file an expedited external appeal with the state who oversees the healthcare plans. I am down to five more days of Deplin and have begun trying to space them out, alternating days, in order to keep some in my system for as long as I can.
Republished on SelfGrowth on 1/13/17.
Republished on EmpowHER on 1/13/17.