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.

When You’re Struggling With Mental Illness, A Good Therapist Can Make All The Difference

For years, I struggled with my mental health treatment.  Not only was I considered “treatment resistant” because no medication my doctors prescribed seemed to even touch my illness, but I had become increasingly disillusioned with the therapy aspect, as well.

In theory, I have always believed therapy was a good thing.  Better out than in, as Shrek says.  I believed that people need to be able to talk about the issues in their life so that they did not build up, escalate and cause further issues down the line.

However, my personal experiences with therapy and counseling were disheartening to say the least.

When I was a child, my mother briefly took our family for therapy together.  On the very first appointment, when my brother and I both attempted to speak up and share our perspectives on the situation, we were cut off.  Our “family therapist” informed us that they were the parents, we were the children, that whatever they said goes and that our opinions on the matter were irrelevant.  From that point on in his sessions, I didn’t even bother participating because he made me feel irrelevant, as well.  The whole experience left a horrible taste in my mouth and made it harder for me to trust or open up to therapists from that point on.

As a teenager after my mother shot my father, I was briefly placed in counseling again.  The therapist that time did not seem interested in who I was or how I was feeling.  They simply wanted to know whether I had any plans to try and harm myself or anyone else.  Once they felt reassured that I was not a danger to myself or others, they saw no reason to see me any further.  Again, I was left feeling like I did not matter.

In my twenties, I had my first serious breakdown and my first true glimpse into the mental healthcare system.  I now not only was assigned a therapist but a meds doctor, as well.  I also had doctors that I saw for group therapy sessions.  I had a bonafide mental health team.

My therapist was always watching the clock and would interrupt me each session when we had ten minutes left, telling me to “wrap it up” because our session was almost over.  She chose the direction of our sessions, insisting we always talk about current issues because she didn’t believe I was ready to talk about my past.  I had no control over my own therapy.  I felt irrelevant to the whole process, like I was just going through the motions of getting help and she was only listening because she was being paid to do so.  If I ever needed to contact her in between sessions, I was directed to leave a voice mail, though her mailbox was often too full to leave one.

My meds doctor was equally as bad at listening.  He would prescribe me whatever the current flavor of the month antidepressant might be.  When I would explain that it was not even touching my symptoms, he would continuously up the dosages or add other prescriptions into the mix until the side effects became unbearable and I felt like a walking zombie.  Every time I spoke up explaining that nothing was helping and that I felt worse than before I began taking anything, I was disregarded and told that I had to give the medications time to work.

My “therapy groups” were laughable at best.  Everyone in the groups were told that we were not allowed to talk about anything too personal, nor were we allowed to discuss any topic that might be triggering to anyone else.  What we were left with was a room full of people sitting there uncomfortably, some wanting to cry, others wanting to rage, as we all muttered through gritted teeth that we were fine because none of us felt we were allowed to say anything more.

The mental health clinic I attended also had an impatient wing at an area hospital.  I was admitted there a handful of times over the years.  As bad as their other services were, those stints on the mental health floor of the hospital were the worst.  It always took over a day to get my medications approved so I felt even more unbalanced from the start.  On an average three to seven day stay, I only saw a doctor for ten to fifteen minutes on the day I was admitted and again on the day I was released.  In between, the only option for any sort of therapy were groups.  I was assigned groups with the same rules as my outpatient groups so nothing was ever talked about or resolved.  No one was allowed in their rooms during the day so you had hallways full of clinically depressed people walking endless laps around a secured wing, biding their time until their next mandatory group or meal.  Patients openly sobbed or sat around with numb expressions as if life itself no longer made sense.  Nurses sat in a large locked cubicle in the center of the wing, laughing and talking among themselves and largely disregarding the patients unless they had to intervene with a “behavioral issue” or direct someone somewhere.  There was no real treatment.  It was a corral to hold the mentally ill until the staff could pass them off to be someone else’s problem.

More than once, I stopped going to my treatment over the years.  I felt irrelevant, unheard, unhelped.  It all felt like a complete waste of time.  However, with or without treatment, my mental illness raged on and periodically I found myself having another breakdown and needing treatment again. Unfortunately, there was not a large selection of mental health clinics in the county where I lived, and the others all had long waiting lists, so whenever I needed mental health treatment I was sent back to the same clinic that had already previously let me down.  Over time, I became so disenchanted with the mental healthcare system that I just couldn’t see the point anymore.  I may have had a bonafide mental health treatment team but I walked away without any real treatment for my illness.

A couple years ago, I had yet another severe breakdown, this time thankfully in another county.  With the help of a coordinated care provider, I was able to get an appointment at a clinic that normally had a long waiting list and was not currently taking new patients.  Again, I would be assigned a mental health team.  I wasn’t going to hold my breath, though.  I had been through this process many times before.  My expectations were low.

I have never before been so pleasantly surprised or so grateful to be proven wrong.  The difference was like night and day.

My meds doctor actually listened to my previous experience with different prescriptions and did not try to push a large pile of pills on me.  Instead, he had me take a genetic test to determine what medications would work best for me based on my genetic make up.  Lo and behold, based on the results of this test, over half of the medications previous doctors had placed me on were listed as causing moderate to significant interactions for me.  The genetic test also revealed a genetic mutation I had that greatly contributed to my treatment resistance.  We worked together to create a treatment plan that actually suited me.

All my groups encouraged open dialogue, even if the topic was grief or pain.  My groups laughed together and cried together.  We fought our battles side by side and all felt heard.  This clinic offered a wide variety of groups beyond traditional therapy groups, as well, such as transforming anxiety through art, meditation, tai chi and yoga.  I found myself signing up for every group I could fit into my schedule.  Not only were they treating my mental illness, they were contributing to my mental wellness, as well.

My biggest blessing and godsend at this new clinic was my therapist. She lets me control the flow of our appointments and choose what I feel I need to address each week, never prodding or rejecting the topics I select.  She made allowances with her scheduling so that if we ever went over the session time, she never had to cut me off or make another patient wait.  She understood my struggles with verbalizing sometimes in between appointments and readily agreed to communicate via email or texts because that was what worked best with me.  Whenever I have emailed or texted her, she has responded back in under a day.  Most importantly, she truly listened and cared.

When I was struggling to find housing, she brought in resources and connected me to organizations that might be able to assist me.  She helped me navigate through registering my sugar gliders as emotional support animals.  She took the time to introduce me to others I would be attending groups with so I did not feel so awkward about not knowing anyone there.  When I was on bedrest following surgery, she did sessions over the phone so that I did not have a lapse in treatment.  She has helped and intervened with more than one personal crisis time and again. She regularly went above and beyond in every way imaginable.

Perhaps the grandest gesture she had done was only a couple months into our visits.  My mother had passed away on Thanksgiving day 2010.  In one of our early sessions, I had expressed to her how hard this day still was for me years later.  On Thanksgiving, she took time out of her day and her own family celebrations not once but twice to reach out and call to make sure I was okay.

Again and again, she has shown me that I wasn’t just a patient that mattered during those 50 minutes penciled in on her schedule.  She helped me to feel like I mattered even when I had trouble mattering to myself.  She always made me feel like my mental health was a priority, that I was a priority.  I have never felt more heard.

I honestly feel like I won the therapist lottery.  In under two years time, I have gone from hating therapy and thinking it is a joke to believing it can truly make a difference in someone’s life.  My life.  Everyone’s life.  Whenever I hear anyone talk about needing a therapist, I refer them to my clinic, insisting that even if there is not an opening right away, they are worth the wait.  I often share stories about my experiences with my therapist that end in “what therapist does that?!”.  The only difference is that now my stories come from a place of gratitude instead of disbelief and disgust.

There are wonderful therapists out there.  There are clinics that genuinely want to help their patients heal, who see them as people that are suffering instead of a steady flow of dollar signs in and out the door.  I understand how easy it is to become disillusioned with the mental healthcare system when it feels like you are unheard and irrelevant to your own treatment.  I’ve been there.  I went through a revolving door of sub par and inadequate treatment for years.  But please know that not all clinics and not all doctors are like that.  Some genuinely care about their patients and their well-being.

If you are feeling unheard or untreated, please don’t give up hope.  Don’t stop your treatment because your doctor is not hearing you or is not working in your best interest.  Keep looking.  Find a new doctor.  Your mental health matters.  Don’t settle for clinics that make you feel irrelevant.  Find a place where you feel heard, where you feel like you truly matter.  Find a place that makes you look forward to getting the treatment you need.  Trust me – It can make a world of a difference in your life.

I want to end this piece by taking a moment and thank Mary B. and everyone else at my mental health clinic for making such a dramatic impact on my life.  You are all truly a blessing not only to me but to all those whose lives you have touched.  Thank you sincerely.

The Double Standard of Mental Health Support

Ever since Dwayne “The Rock” Johnson spoke up about his own struggles with depression, the story has been everywhere, appearing again and again on all my social media feeds.  Everyone loves The Rock.  It’s a great story.  It’s all everyone wants to talk about.  And beneath his story, you see the same sentiments being shared again and again.

“The poor guy having to suffer through that..”

“Good for him to speak out..”

“How brave..”

It’s a story that we’ve seen dozens of times before.   Celebrities speaking out about mental illness is quickly becoming a huge movement as more and more share their story.

We applauded and cheered when Kristen Bell talked about her battle with depression and anxiety because it made her so much more real. She wasn’t that perfect, ever-smiling, ever-happy Hollywood darling with no problems.  She was one of us!

When Demi Lovato spoke out about her own struggles with depression, bipolar disorder and drug addiction, her fanbase surged.  People admired her for being brave enough to speak up about such difficult topics.

Since he spoke up about his depression and thoughts of suicide, Jared Padelecki is continuously swarmed at cons by fans who love him even more for his brutal honesty and his “Always Keep Fighting” campaign.  The whole Supernatural cast has begun speaking out about mental health and have never been more beloved.

We admire and idolize Carrie Fisher for speaking so frankly about bipolar disorder and called her a national treasure.

When Patton Oswalt talked about the depression he went through after losing his wife, our hearts all went out to him.  We grieved with him and felt his pain.  We all wanted to hug him and to find the right words to say to lessen his pain.

J. K. Rowling.  Lady Gaga.  Selena Gomez.  The list goes on and on.  Speaking out about their struggles with mental illness makes them more relatable, less larger-than-life.  Our hearts all go out immediately to them when they share their stories and confide with us about their pain.  We sympathize, we empathize, we want to reach out to tell them that we’re here to listen even though they don’t even know us.

Whenever we see an actor, musician or a professional athlete taking time off from making movies, touring or playing a game to seek treatment for mental illness, we all say to ourselves, “Good for them, getting the help they need.  It’s such a difficult thing to admit or to face.  I hope they get the help they need.”

Robin Williams.  Chris Cornell.  Chester Bennington.  Whenever we lose an iconic celebrity to suicide, the whole world mourns for months.  The mourning is renewed each year on the anniversary of their death, as well.  Crowds weep together and share stories about how their lives were impacted by their presence and how greatly their loss will be felt.  Newsfeeds are filled with scores of pictures sharing quotes and sweet sentiments along with prayers that their souls are finally at peace.

If you only looked at how society treated mental illness by how we respond to our celebrities, you’d assume we are the most compassionate, enlightened society to ever walk the earth.  It’s truly laughable.

Please know I am not minimizing or trivializing any of their battles with mental illness nor am I diminishing the tremendous losses the world has endured from celebrity suicides in recent years.  It is incredibly brave to fight for your mental health, perhaps even more so in the public eye.

I personally admire them all for taking a stand to fight against the stigma of mental illness.  Like many others, I’ve cried when I read their stories and so many others like them because I could relate.  I’ve mourned those needless deaths because I have walked that edge myself on more than one occasion so I understand all too well how it feels to be suicidal.

I say it is laughable not because I take mental illness lightly or because I am mocking their pain but because the way mental illness is regarded with celebrities is so far removed from the responses the rest of the world gets.  It truly sickens me that the overwhelming support they receive rarely extends to normal, average, everyday people with the exact same diagnosis.

When the average person opens up about their struggles with mental illness, we’re rarely met with any support and encouragement.  More often than not, we’re hit with judgment and persecution.  We’re treated as if we’re exaggerating or making something out of nothing.

“What do you even have to be depressed about?”

“Have you even tried to just be happy?  It’s not that hard.  You just have to be more positive.”

“You’re still not over that yet?  You need to just learn to let go of things that get to you.”

“Everybody has problems.  Stop being such a drama queen and learn to deal with them like everyone else does.”

We mention going to our doctor and getting on medication and are confronted with comments and memes about how we don’t need pills, we need things like sneakers and fresh air.

We talk about seeing a therapist and are told we shouldn’t be putting our private life out there to strangers who are only listening because they are paid to do so.

We’re told it’s all in our heads and that we should be grateful we don’t have “real problems”.

We’re told we’re just not trying hard enough, not doing enough.  Told we just need to try harder, do more, and we’ll get out of that funk.

Everyone has an answer for how to “get rid of our illness” but none of them have anything to do with the actual medical treatment needed for a medical diagnosis.  Be on your phone and computer less.  Go outside more.  Join more activities.  Start more hobbies.  Get a dog.  Get a girlfriend or boyfriend.  Make more friends.  Watch happier movies.  Read more positive books.  Listen to more upbeat music.  None of this would cure any other illness but that doesn’t matter.  Since others cannot see our illness, it must not be worthy of any real treatment.

We see those with mental illness painted as monsters or mocked as jokes.  We’re told that only the weak-minded can’t deal with their feelings.  We’re portrayed as unhinged, broken, unbalanced and unsafe, someone to avoid at all costs so that our crazy doesn’t rub off or spill out onto others as if we’re contagious.

We’re expected to suck it up, hold it in, don’t talk about anything that might make anyone else uncomfortable.  We’re supposed to pretend everything is okay, pretend we don’t feel anything at all even though we feel like we’re slowly dying inside.

When we reach out for help, we’re more often than not denied because it is an invisible illness that they cannot see.  We’re forced to fight, to prove there’s anything wrong and that it’s bad enough to justify getting help.

And Heaven forbid someone loses someone they love to mental illness.  They can’t even mourn without others commenting about how selfish suicide is, as if no longer being able to live in constant torment somehow makes them a bad person that deserves to be forgotten.  If an average person kills themselves, you’re not even supposed to acknowledge their life or their death because it might make others uncomfortable.

For the average person, mental illness is a bad word.  It’s that gorilla in the room that everyone knows is there but nobody is willing to talk about.  It’s that monster on our backs and in our souls that is eating us alive that we’re supposed to pretend isn’t there.

Mental illness doesn’t just happen to celebrities.  It does not discriminate.  It affects everyone around the world regardless of age, gender, sexual orientation and identity, religion, race, occupation, political party, or socio-economic status.

Mental illness isn’t some rare fabled unicorn that only lives in legends and fairy tales, some mysterious creature whose very existence is highly doubtful.  It is all around us.  Millions suffer from mental illness every year.  An average of one in five people struggle with it.  It is an epidemic of global proportions.  It is a very common health problem.  And average, everyday people deserve the same compassion, admiration and support as celebrities do for fighting the exact same battles.

I am an average person with an average illness that affects one in five people in this world.  I am fighting the same battle as millions of others fight to varying degrees every single day.  I’m tired of being treated like I am invisible just because my illness is.  Whenever a celebrity speaks out about their own battles with mental illness it reminds us that they are just ordinary people, too, with the same problems we all face.  If we support some “ordinary people” in their battles with mental illness, shouldn’t we support all?

 

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.

Republished on SelfGrowth on 1/13/17.

Republished on EmpowHER on 1/13/17.

Depression & Genetics

Please note: I don’t often write about the technical side of my treatment because I know that it is a very personal thing and what works for one person may not work for another.  I do not want to appear to be endorsing a specific path for anyone else because I am not a medical professional by any means.  What I am sharing is not a recommendation for anyone else but rather my own personal experiences.  Please talk to your doctor before making any changes in your mental health routine.

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I have had a lifelong struggle with depression, anxiety and ptsd.  Not too long ago, I was asked to write a piece about when I first realized I was suffering from a mental illness.  I honestly just laughed because I cannot remember a time I have not.  Throughout the years, I have tried prescription medications on and off to help balance my moods and alleviate the symptoms.  Again and again, it felt like the doctors were playing whack a mole with my health, randomly trying different drugs in varying strengths and combinations until I was a drugged up mess.  I had pills to wake myself up, pills to drag me throughout the day and pills to put me to sleep.  Each time, I felt like I was becoming a mindless zombie.  Each time, I would take myself off the medications because I would rather endure all my pain than to lose myself completely.

When I recently reached out for help again, I was adamant about my stance on drugs.  I never again wanted to return to that state with horrible side effects and a comatose-type demeanor where every day blended into the next in a drug-induced stupor.  Looking over my medical history, my new doctor could find no rhyme or reason to my long list of past medications prescribed by others.  Instead of prescribing something purely on a hit or miss basis, he opted to send me out for genetic testing through a company called Genesight.

Apparently, there are genetic tests now that can determine which drugs your body will be able to metabolize based on your genes.  This test can also determine which medications are likely to cause side effects and even rank the severity from mild to moderate to severe.  When the test results came back, ironically the majority of the medications previous doctors have put me on were listed under moderate to severe side effects.  No matter how much they increased the dose, they were never going to help me because my body had always been unable to break them down.  My new doctor had done a full panel so now I knew what medications would and would not work in my body.

The most exciting result, however, was not among the medication listings, but on the cover of my packet itself.  According to the lab:

This individual is homozygous for the T allele of the C677T polymorphism in the MTHFR gene.  This genotype is associated with significantly reduced folic acid metabolism, significantly decreased serum folate levels, and significantly increased homocysteine levels.

In layman’s terms, it means I have a gene abnormality that affects my liver’s ability to break down folic acid.  In normal, healthy livers, folic acid is broken down into a compound called L-methylfolate.  L-methylfolate is used by the brain to regulate the hormones associated with emotions.  Without that compound present in my brain, it would be near impossible to thoroughly treat my depression and my own body was incapable of producing it in any meaningful quantity.

It turns out that genetic test was a godsend.  Normal lab tests would not pick this up.  A blood test would show the levels of folic acid in my blood and doctors would infer my levels must be fine, not realizing that my liver was incapable of processing it.  Only by looking at the genetic level could they see that my liver was not able to convert any of that folic acid into anything useful.

What makes this an even bigger deal is that a pharmaceutical company has found a way to break down folic acid into L-methylfolate and put it in pill form.  Getting what my brain needs and my body has never been able to provide will be as simple as having a prescription written.  I honestly felt excited.

My doctor was very clear that this is just a big first step, not a cure-all.  This prescription is by no means a panacea.  It, however, is a stepping stone.  It means that antidepressants will finally be able to work because the L-methylfolate will be able to help get them where they are needed.  It means that if my brain actually attempts to regulate my own moods, there is at least a very real possibility of success where previously there was absolutely none.

I took my first pill yesterday and admittedly felt a noticeable difference right out of the gate.  I had more energy and a greater sense of calm.  The depression is by no means gone or even diminished but the fact that I felt anything noteworthy at all on the very first day was enormous for me.  For the first time in a long time, I truthfully am hopeful when it comes to my medication.