I was recently contacted by someone from My Patient Rights. They are a nonprofit helping patients learn their rights, navigate their health plan and ultimately how to become their own advocate. They had read my story about fighting for coverage when it had been republished on The Mighty and contacted me, interested in hearing how my battle was going. When I informed them that I had won my fight against the insurance for coverage, they asked me to write a piece, sharing my story. The following piece was written exclusively for My Patient Rights in hope that sharing my story might give others the courage and strength to fight for the coverage they need, as well.
I’ve spent my entire life struggling with severe depression. I felt broken. Others treated me like I was unbalanced, unhinged and crazy. No treatment or medication I had tried worked. While the majority of people suffering from depression could pinpoint the event or period in their lives that was the catalyst for their illness, mine had always been there and nothing seemed to help.
Everything changed for me when my doctor discovered that I was born with a genetic mutation. This mutation renders my liver incapable of breaking down folic acid to any usable degree. Though this genetic mutation exists in varying degrees, mine is an extreme case, where my liver is working at approximately 20% of its potential. Broken down folic acid is what the brain uses to help transport the chemicals needed for functions such as balancing moods. Without it, no amount of chemicals, whether naturally made or taken in the form of an antidepressant, could get where they were needed. At best, my brain was receiving 20% of what it required. My lifelong depression was a result of my brain being literally starved of the nutrients it needed.
This changed everything for me. I wasn’t crazy after all. My mental illness had a definitive biological cause. Even more importantly, there was a treatment available, capsules of broken down folic acid, called l-methylfolate. There was a company that manufactured capsules of already broken down folic acid under the name Deplin. For the first time in my life, there was actual hope. With this medication, my brain could finally get what it has been missing. While the medication I needed wasn’t extremely expensive, it was beyond my financial means. It was a medication I would need for the rest of my life and it would cost thousands of dollars every year. The only way I would be able to afford the continued medication I needed would be for my health insurance to cover the majority of the cost.
My doctor started me on some samples of Deplin while we waited to hear back from the insurance company that my medication would be covered. While it was not a panacea, I could feel a distinct difference inside almost immediately. While my condition would not be cured by taking this prescription, it would be greatly improved and would open the door for other treatments to be used successfully for the first time ever. With Deplin, my depression was feeling more manageable, my moods higher and more stable than they had ever been.
It seemed like a simple fix, cut and dry. The brain needs broken down folic acid in order to balance moods and combat depression. My body, on a genetic level, was incapable of breaking down folic acid in any usable amount. A pharmaceutical company made a capsule of broken down folic acid that would provide my brain with what my body could not make on its own. You can imagine my surprise when the insurance company denied my coverage. Positive that it was an error, my doctor and I resubmitted my claim. Again, it was denied.
The reasons for the denials were ludicrous. The first denial stated there was a “less expensive, alternative treatment”. More specifically, folic acid tablets. The folic acid tablets that my body was incapable of metabolizing due to my genetic mutation. The second denial was even more ridiculous. CDPHP denied coverage of the medication deemed necessary by my genetic test because they questioned the validity of the test itself. The insurance company had covered the genetic testing because they believed it to be necessary to my treatment, yet refused to acknowledge the results of the test or the treatment deemed necessary based on the test results.
My first appeal was rather informal. Speaking on the phone to an in-house doctor, explaining why I felt they had made an error. During the conversation, the doctor I was speaking to seemed both sympathetic and understanding. They understood why the folic acid tablets suggested would not be a viable option. Once again, I thought it was cut and dry, easily resolved. After all, the doctor seemed to not only understand, but to agree with all I was saying, as well. When the second denial came back questioning the validity of my genetic testing itself, I knew I had to step up my game.
I contacted the lab that did the genetic testing and spoke directly to technicians, gathering information about the testing itself. They provided me with case studies showing the benefits of their testing in mental health treatment, as well. I also contacted the pharmaceutical company that manufactures the broken down folic acid tablets. With their help, I gathered multiple articles discussing not only my specific diagnosis but the use of their product in treating it, as well. Altogether, I submitted over one hundred pages of research to CDPHP for my second appeal. It took less than three hours from the point that the last paper was faxed to their office for me to get the phone call from CDPHP. Denied again.
I was beside myself. There was no way that anyone at CDPHP could have reviewed even a portion of the material I had faxed in before issuing their denial. There was no alternative treatment available. My depression would not go away on its own. No antidepressant could work because, without the broken down folic acid, there was no way it could get where it was needed. Meanwhile, my doctor’s supply of samples was quickly running out.
I was in an absolute panic. My last ditch effort was a final appeal with the state. Turns out, health insurance companies are monitored by the government. A final no by the insurance company is NOT the final no. You can go above the heads of the insurance company and have your state review their decision. And that is precisely what I did.
Once again, I faxed out all the research I had compiled, both on my own and with the assistance of both the lab and pharmaceutical companies involved with my case, over one hundred pages. In addition, my doctor found medical journals that addressed my specific condition and treatment in detail to submit on my behalf. I was cautiously optimistic. After all, I had submitted the majority of this before, believing it was all cut and dry, only to have it denied.
It took weeks to hear the result because it was not considered a life or death situation so the appeal could not be expedited. My supply of samples had run out. I could feel my depression spiraling back down into the darkness that had succumbed me for years. This final appeal was my last and only hope.
After what felt like an eternity, I received a huge packet in the mail from New York State Department of Financial Services, the government agency that oversees external appeals. My appeal had been sent out to Maryland for review. An independent doctor, with a long list of credentials and no affiliation with either my insurance company or my state, had deemed inequitably that my prescription for Deplin was not only medically necessary but the only treatment currently available for my condition. CDPHP’s denial was overruled. They would have to cover my medication.
It felt like a miracle. All in all, it took approximately one year’s time from the discovery of my genetic mutation to the results of my final appeal arrived in my mailbox. It took almost three months longer before CDPHP began finally actually paying for my medication. In the grand scheme of things, my entire fight took a little under a year and a half. In reality, it should never have happened. It should have been a cut and dry case of my receiving the only treatment available on the market for my condition. It is devastating to think that our insurance coverage often comes down to keeping their costs down and not what is best for our health. But if I have learned one thing from this experience, it is that we do still have power. The story does not end when our insurance company tells us no, that they will not provide necessary treatments. Insurance companies have to answer to outside government agencies with more power and the authority to overrule their decisions.
We can fight. And we can win.
Don’t lose hope. Don’t take no for an answer. If you need treatment and your insurance company refuses to cover it, that is not the end.
Fight for your health. Fight for your right to have the treatments you need covered.
It may just be the most important fight of your life.
Previous pieces written about my fight for coverage include: Fighting for My Mental Health, The Meds Crash.. and The New York State Appeals Process: Apparently Not Everyone Who The State Certifies To Prescribe Medication Is Considered ‘Educated Enough’ To Defend Their Patients’ Prescriptions During An Appeal.