When Will Insurance Companies Realize Fighting Against Patient Care Is Not Cost Effective?

Other than my ongoing battle with mental illness, I have been relatively healthy my entire life.  I don’t drink, smoke or do drugs.  Prior to the last couple years, other than mental health doctors, I rarely went to the doctors at all beyond basic check ups.  Other than medications for my mental illness, I have rarely relied on any medication stronger than acetaminophen or an antacid, and only then if absolutely necessary.  Due to this fact, I had little experience with battling my insurance company for most of my life.  These last two years, however, have been a real eye opener.

I have struggled with severe depression and anxiety my entire life.  For years, I was labelled “treatment resistant” because no medication I took ever seemed to work.  A couple years ago, my meds doctor at my mental health clinic sent me for a genetic test to help determine what prescriptions might work better for me based on my genetic make up.

The test came back with an unexpected result.  I had a genetic mutation that rendered my liver incapable of metabolizing folic acid in any usable amount.  Broken down folic acid, called l-methylfolate, is used by the neurotransmitters in the brain to help moderate moods.  Because my own body could not metabolize folic acid into l-methylfolate in any usable amount, the neurotransmitters in my brain had been literally starving for what they needed for the majority of my life.

It was a fairly easy fix.  There’s a pill on the market of broken down folic acid.  It is, on average, under $200 a month.

It is something my body cannot make on its own and my brain needed to function properly.  Yet my insurance company fought me on it for almost 9 months.  In the meantime, my doctor had to prescribe me a collection of high dose antidepressants, anti-anxiety and sleep aids in hopes that together they might even slightly touch my mental illness.  I had a revolving combination of medications, anywhere from four to six prescribed at a time, with the dosages being steadily increased.

The cash price of the one anti-depressant alone that I took during that time runs on average $250-$300 per month.  The one anti-anxiety medication I took runs between $45-$85 per month.  The one sleep aid ran around $20 a month. Other medications we tried ran between $10-20 apiece.  Altogether, I was taking between $450-$500 a month worth of medications that were barely able to do anything for me because my insurance company did not want to pay less than $200 a month for the medication I truly needed.

After almost 9 months of fighting and multiple appeals and fair hearings, I finally got my prescription approved.  These days, I am taking my l-methylfolate, along with one moderate but inexpensive antidepressant and a natural sleep aid.  Altogether, the cost is still under $200 a month.  I honestly cannot fathom why the insurance company would have opted for 9 months to pay over double that amount on a less effective treatment instead of just approving what my doctor had initially prescribed me, what I truly needed.

I wish I could say that this was an isolated incident but over the past couple years, I have had multiple run ins with my insurance company in regards to my treatment.  Though relatively healthy for the majority of my life, these last two years have been plagued with multiple health issues, issues my insurance company has chosen to fight me on, as well.

Two years ago, I was rushed to the emergency room in severe pain.  It turned out that a large cyst had grown on my ovary.  Within the cyst, a mass of tissue had begun to grow, as well.  Together, they had put increasing pressure and weight on my ovary, contorting it and damaging not only the ovary itself but also on the veins around it.  The ovary was damaged beyond repair.  There was a concern that the mass within the cyst might be cancerous.  Rather than doing a biopsy then surgery that would prolong my suffering, my doctor opted to remove the ovary first then biopsy the mass on it afterwards.

Again, it was an easy fix.  The ovary had to come out.

Yet the insurance company dragged their feet for over two months.  For over two months, I was in constant agony, on bedrest, slowly awaiting the pre-op tests to get approved, let alone the surgery itself.  For over two months, I had to take pain medication and see my doctor almost weekly to check my blood pressure, monitor my pain levels and make sure no infection had set in.  For over two months, I had to have a coordinated care provider come to my house to assist with things I could no longer do for myself because I could barely move on my own without excruciating pain.

The ovary, along with the cyst and the mass of tissue within it, had to be removed.  The insurance company ended up having to cover numerous extra doctor appointments more than was necessary, along with added prescriptions and periodic home health care assistance, all because they delayed the approval of treatment that was ultimately going to be needed to begin with.  Dragging their feet and delaying approval did not save them any money.  Quite the opposite.

Most recently, during a ct scan it was discovered that I have two meningioma tumors on my brain.  Though 80% of meningiomas are benign, doctors still have to test them to make sure they are not.  I first saw a neurologist who, in turn, referred me to a neurosurgeon for testing.  The neurosurgeon ordered both an EEG and an MRI with and without contrast to be done so they can get a better look at my tumors.

It has been almost two months since the meningiomas were discovered.  The EEG was completed, yet we’re still waiting for insurance approval for the MRI.  Meanwhile, my neurologist keeps scheduling appointments because, until he knows for sure that they are benign, he has to keep monitoring me for signs of seizures or other averse effects.

Best case scenario – if they are small enough and benign, it is considered watch and wait, with them being periodically monitored and measured once or twice a year to look for changes.  Worst case scenario – they are malignant, I need surgery and radiation.  But until the MRI is done, it is a case of *Schrödinger’s tumor – we won’t know whether it is benign or malignant until the doctors get in there for a better look.

Meanwhile, I keep going in for more or less useless appointments where my doctor keeps checking in to ask how I am feeling and checks my vitals, then we sit around discussing how the insurance company still hasn’t approved the MRI.  Yet, he can’t put off these appointments until he knows for sure whether we need to worry about these tumors or not.  So the insurance company is getting billed for appointment after appointment to check in on how I am doing while we wait for the MRI instead of just approving the MRI that will ultimately be needed anyway.  These tumors are not going to go away on their own.  The MRI is needed to fully diagnose them and my neurologist is not going to allow me to fall between the cracks just in case they are malignant and surgery is needed.

I honestly do not understand why insurance companies fight patients and their doctors on treatment that is needed.  It is not like any of my treatment was something ordered on a whim.  There was a prescription for a substance my brain needed that my body could not make on it’s own.  There was a surgery to remove an organ that was irreparably damaged and causing me severe pain.  And there was a test needed to determine whether the tumors on my brain are benign or malignant.  Three cut and dry cases of treatment that was very much needed and not in the least extravagant or superfluous.

Yet, the insurance company’s decisions in each of these three cases over the last year has cost them, each time, much more than it would have cost them if they had approved the treatment the doctors in each case recommended.  If a prescription, a test or a procedure is ultimately needed and there is no other possible recourse to resolve the issue, why would the insurance company either deny it outright or drag their feet in approving it?  It will only end up costing them more in the long run.

I with I could say my experiences were isolated incidents.  In the course of my battles over the past two years, I have spoken to numerous others who have been and are currently fighting their insurance companies, as well, for the treatment they need.  It appears to be more commonplace than most people realize.

When did it change that healthcare became more about trying to cut corners and save money than in treating the patient and doing what was best for their health?  Has it always been this way?  Wealth over health.  Profit over people.  It’s honestly disgusting, despicable and deplorable.  Having been relatively healthy for the majority of my life, I never realized what a struggle it can be to get the treatment you need covered.

While I understand and acknowledge that fraud is rampant in medicine today and insurance companies need to validate claims before approval is given, once there is proof to support the medical treatment requested, it makes little sense to drag out or deny the claim further.  Insurance companies could ultimately save substantially more money not by fighting patients on the treatment they require but by approving and expediting it so that their overall treatment and recovery takes less time and costs less money.

 

* Schrödinger was an Austrian scientist in the early to mid 1900’s.  He developed a theory made popular in recent popular nerd culture, called the Schrödinger’s cat paradox in which a cat is sealed in a box with a flask of poison and a radioactive source.  According to his theory, it is accurate to assume that the cat is simultaneously both alive and dead because either option is probable.  Until you open the box and check, you do not know for sure.  I referred to my meningiomas as Schrödinger’s tumors because, until the MRI is done, there is no way to know for sure whether they are benign or malignant.

Victory is Mine! Fighting for & Winning Coverage is Possible!

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.

mypatientrights

Written Exclusively for My Patient Rights on 11/3/17.

Previous pieces written about my fight for coverage include: Fighting for My Mental HealthThe 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.

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

Government Red Tape & Legal Loopholes At Their Finest

After forty years of struggling with treatment-resistant depression, I finally found a clinic and team of doctors that have not only helped pinpoint genetic causes of my depression but that have also helped create a wonderful multi-pronged treatment plan that is actually helping me.

The person I see for the medication portion of my treatment plan was the one who first sent me for my Genesight test that discovered my genetic mutation.

(The full story explaining my genetic mutation and how it relates to my depression can be found HERE.)

He prescribed me a medication called Deplin, which provides my brain with a key substance my body is incapable of making on its own in any useful amount due to my aforementioned genetic mutation.  He started me on samples of Deplin right away and there was an immediate and extremely positive result.  For the first time in 40 years, I felt actual hope that I could have a life above and beyond my depression.

My insurance company, CDPHP, denied coverage of the prescription and my long battle began.  When I was called by the insurance company about the first denial and I explained my case further, it was suggested we re-apply for coverage, only to be met with yet another denial.

Meanwhile, I kept taking my samples, though the supply began to dwindle.

I spoke both with Assurex Labs who make the Genesight test that discovered my gene mutation, and PamLabs, which is the company that makes Deplin, about my ongoing battle for coverage and they both offered to help.  For my internal expedited appeal, I included not only approximately 50 pages of data showing the validity of genetic testing in the treatment of depression, but another approximately 50 pages specifically explaining my genetic mutation and the use of Deplin in its treatment.  Altogether, the paperwork I sent in alone, not even counting what my clinic sent in on my behalf, totaled well over a hundred pages.

Despite all the work put in by everyone involved, the internal appeal was denied.  Ironically, though CDPHP had over a hundred pages of paperwork faxed in, they rendered their opinion a few hours after the faxes were sent in, well short of the 72 hour time frame they had to review everything.  There was no possible way they could have reviewed everything before calling with their decision.  I’m honestly not sure they reviewed any of it at all.

I don’t believe it was ever a matter of the best interest of the patient with CDPHP.  From the beginning, their only concern has been saving money and avoiding adding another medication to their list of things they had to cover.  All explanations about how this medication was the only possible treatment available to me fell on deaf ears.

(My journey within the appeals process has been documented HERE.)

Meanwhile, my supply of samples of Deplin has been exhausted and I have found myself back where I once was, drowning in a sea of treatment-resistant depression that nothing seems to touch.

(The Explanation of the meds crash that followed can be found HERE.)

We began the process of filing for an external appeal with the state because, in New York state, even if an insurance company denies coverage, the state can overrule it if they see fit.  Unfortunately, as it has been explained to me by my treatment staff, appeals don’t always go well because insurance companies and the section of the government that oversees their decisions usually work in tandem, proverbially washing each other’s backs.

I began correspondence with a local newscaster, as well, who was well-known for her health advocacy work.  She advised me that, in her experience, external appeals tend to go 50/50 and to please let her know how it turns out because she was interested in the story.

Meanwhile, the gentleman in my treatment team who was in charge of my medication prescriptions began the lengthy process of formatting a detailed external appeal for the state, explaining once again that there is no alternative medication for my condition and including multiple articles from approved medical journals based on their guidelines that support his diagnosis and prescription of Deplin.  He sent in his portion of the 72 hour expedited external appeal last Thursday, 3/16/2017.

I heard back from a reviewer from the consumer assistance unit of New York State Department of Financial Services today, Tuesday, 3/21/2017, that they have not yet assigned an examiner and cannot do so until they receive an attestation from a doctor, specifically someone with an MD or DO after their name.

The gentleman who has been doing my medication management for two-thirds of a year now is licensed to prescribe medication in New York State.  He has a multitude of letters after his name, including CAQ & PA-C, however, though New York State AUTHORIZES him to prescribe to patients, he apparently is not allowed to assist in their medication appeals because he does not have an MD or DO after his name.

As explained by the reviewer, “The law says the attestation has to be completed by a physician.  The education law defines a physician and an MD or DO.  So in order for this to go external you will need to have the attestation completed by a physician.”  This means that, though New York State allows people with other degrees to PRESCRIBE medication, their appeals department uses a specifically restrictive and exclusionary definition as a legal loophole to mark as invalid and discard any appeals sent in by the treating physician unless they have one of two specific abbreviations after their name.

It does not matter that, according to the Merriam-Webster dictionary, physician is defined as “a person skilled in the art of healing; specifically :  one educated, clinically experienced, and licensed to practice medicine as usually distinguished from surgery”.  Speaking from a legal perspective, the Law Dictionary defines a physician as “A practitioner of medicine; a person duly authorized or licensed to treat diseases; one lawfully engaged in the practice of medicine, without reference to any particular school.”  Speaking from a medical perspective with regards to the term physician, the Medical Dictionary states “In the UK it refers to a specialist in internal or general medicine. In the USA it is a more general term for a medical doctor.”  Despite the seemingly broader and unified consensus of this definition, New York State has its own much smaller and less inclusive definition of physician which they apparently use to disregard and nullify otherwise valid patient appeals.

My mind is beyond blown at the loopholes this department is using to prolong this appeal.  In my disgust, I went so far as to ask them if I am supposed to see yet another doctor beyond my treatment team and to please explain to me how the state can certify someone to treat patients and prescribe medications one moment and then in their next breath deem them unqualified to speak on a patient’s behalf as to why they need that prescription.  It’s irrational to the point of being ludicrous.

Thankfully, when I spoke to both the director of the clinic where I am in treatment and the gentleman in charge of my medication management and they both assured me there was a supervising psychiatrist who would be in the office tomorrow who can assist me further.  This supervising psychiatrist apparently has the correct letters after his name to re-submit paperwork on my behalf.

I am beside myself with disbelief at this whole fiasco.  None of this should be THIS hard.  It’s a matter of simple facts.

FACT: I have a gene mutation that renders my liver incapable of breaking down a nutrient my brain needs in order to treat my depression.  Without this broken down nutrient, the neurotransmitters in my brain cannot function properly.

FACT: There is a synthetic version of this nutrient on the market called Deplin.  I have tried it for months and it works for me.

FACT: There is no other alternative on the market and no other possible treatment that could give my brain what it needs.  This is the ONLY treatment available for my genetic mutation and the ONLY way that any other antidepressants or anti-anxiety medications prescribed would work for me in the treatment of my depression.

Those three facts alone should be enough reason to approve this medication for me.  Yet the insurance company has denied it multiple times and now the state is dragging its heels, refusing to even assign an examiner until someone with the correct letters after their name signs and submits the same forms that have already been submitted.

You would honestly think that anyone who can prescribe medications in this state could defend their prescriptions in the appeals process on behalf of their patients.  It makes perfect sense.

Except to New York State.

It is complete insanity.  The people making health coverage decisions need to start considering the lives and the health of the people involved instead of worrying about saving a few dollars here and there.  They need to start considering doing what is in the best interest of the patient and not worry about “winning” or “proving points”.  This is NOT a game.  I’m fighting for my life and my mental health here.  I’m fighting for the ability to get the treatment I desperately need so that I can get better.

My heart goes out to everyone out there fighting the appeals process, trying to get their treatment or medication covered.  It should NOT be like this.  Doctors, therapists and insurance companies should be working hand in hand to do what is best for the patient, not denying coverage just to save a buck.  I am blessed to have an amazing treatment team that has been standing behind me every step of the way and assisting wherever they can, yet most days, I am still overwhelmed and frustrated beyond belief trying to deal with this lunacy.  My appeals process has been ongoing for over half a year now and it is becoming harder and harder each day to keep fighting and not just roll up in a ball and cry.  Some days, there is no fight left, only tears.  I cannot imagine having to deal with something like this on my own yet unfortunately many people do.  My heart sincerely goes out to each of you.  Stay strong, keep fighting and please don’t lose hope.

 

Fighting for My Mental Health

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.

selfgrowth

Republished on SelfGrowth on 1/13/17.

empowher
Republished on EmpowHER on 1/13/17.