Stop Blaming Mental Illness For The Abhorrent Behavior Of Anti-Maskers

Whenever anyone behaves poorly or against the grain of what is considered socially acceptable, many people automatically attribute it to that person being crazy, off their rocker, completely unhinged, mentally ill. There is so much stigma surrounding mental illness that many assume that any unreasonable action or poor behavior must be synonymous with mental illness, because why else would someone behave so badly unless they were crazy and mentally ill.

Our country is currently in the midst of a viral pandemic, seemingly split down the middle. On one side, we have those who fundamentally believe in science, medicine and fact and are willing to take precautions for the safety of all. And on the other, we have those who are trying to politicize the virus, with many touting that the virus itself is a hoax, or no worse than the flu, or simply declaring it not their problem because nobody they know has been affected by it yet. These pandemic deniers, minimizers and anti-maskers have become increasingly fond of video recording themselves as they supposedly “stand up for their rights”, planning strikes against businesses attempting to abide by restrictions put in place for the safety of all. They storm into stores, refusing to wear masks, recording both themselves and the reactions of others, hoping to earn their 5 minutes of fame. They go in with the sole intention of showing their defiance, causing turmoil to businesses, workers and customers alike, and creating a scene worthy of becoming a viral trend.

As we have seen time and again during this pandemic, this type of egregious showboating often backfires, with those who are thumbing their nose at health restrictions ultimately being thrown out of stores and banned, being widely and publicly shamed for their apathy, and in some cases even being fired from their jobs as a result of their very public displays. Yet these bizarre occurrences continue in America, partly because these individuals want to make it fundamentally clear that they believe their personal right to not wear a mask is more important than everyone else’s right to not get sick or die, and partly because they ultimately hope to go viral for their bad behavior, to become infamous on the internet.

Yet whenever someone is called out for their horrid behavior, many people immediately blame mental illness. People assume that in order for someone to do something as foolish as to outright deny a viral pandemic that has infected over 18.5 million people worldwide and killed over 700k in less than a year, let alone to make such a spectacle of themselves by outright refusing to care about others, they must be “crazy” and “unbalanced”, that they surely must be mentally ill.

Often people in this country automatically associates horrible behavior such as this with mental illness, pointing fingers and claiming those involved “obviously need mental help” because their utter disregard for everyone else is unfathomable. Other times, the perpetrators themselves attempt to blame their own horrendous actions on mental illness whenever they are confronted. They cavalierly issue a non-apology, using mental illness as their scapegoat instead of taking any amount of personal responsibility for their own ridiculously irresponsible, ignorant actions. It’s as if they are smirking, shrugging and dismissively claiming they should not be held accountable because they are, after all, “crazy”.

Sadly, much of this comes from the stigma attached to mental illness. It is much easier for many people to assume that anytime anyone behaves despicably, they must be “crazy” and “mentally ill” than to consider that those individuals might just be inconsiderate, attention-seeking people who do not care about anyone but themselves. It is much easier to designate mental illness as the catch all scapegoat for all the wrongs in society than to consider that these people are behaving poorly simply because a portion of our society glorifies their bad behavior.

As someone who struggles with mental illness myself and who actively advocates for the mental health community, I would like to make it very clear that there is an enormous difference between the actions of these people and the mental illness community as a whole. While it is possible that someone who displays this type of abhorrent behavior might also be struggling with a mental illness, mental illness itself is not immediately to blame whenever anyone behaves inappropriately or with malicious intent. People who have mental illnesses such as depression, anxiety, ptsd, and bipolar disorder deal predominantly with issues such as self-worth, motivation to accomplish daily tasks, and battling the demons in their own heads and the trauma of their past. NAMI, the National Alliance on Mental Illness, could not have put it more perfectly when addressing the myth that being mentally ill automatically means you are “crazy”:

It’s plain and simple, having a mental illness does not mean you are “crazy.” It means you are vulnerable. It means you have an illness with challenging symptoms — the same as someone with an illness like diabetes. While mental illness might alter your thinking, destabilize your moods or skew your perception of reality, that doesn’t mean you are “crazy.” It means you are human and are susceptible to sickness and illness, the same as any other person. (1)

When attempting to attribute mental illness directly to poor behavior, let’s consider the penal system. According to the Prison Policy Initiative, there are currently approximately 2.3 million Americans incarcerated. (2) Yet, according to statistics by NAMI, “Only 5% of violent crimes in the U.S. are committed by people with serious mental illness. The unfortunate truth is that individuals with mental illness are more likely to be victims of violence than perpetrators.”(1) Furthermore, “Approximately 20% of state prisoners and 21% of local jail prisoners have ‘a recent history’ of a mental health condition.” (3) Though there are always exceptions, the vast majority of people with mental illnesses are not the least bit violent or otherwise confrontational, they are not by and large out committing crimes. With only one in five people who are incarcerated having any type of recent mental illness diagnosis,and only 5% of those with a mental illness being convicted of a violent crime, being mentally ill is clearly not the predominant driving force behind bad behavior.

Even if someone who is mentally ill were to momentarily lose control and behave poorly and irrationally, they are extremely unlikely to go on grandiose, premeditated video recorded rampages with the intention to upload the fallout later to the internet, screaming about their supposed rights to do whatever they please even if it means harming or killing others in the process. People who are mentally ill don’t normally plan out and intentionally video record their outbursts from start to finish in order to garner internet attention but rather any adverse reactions they may have are typically an unscripted, unplanned, unrecorded, spontaneous result of someone who is struggling to cope with life in the moment.

People who are struggling with mental illness often isolate and shut down. We struggle every single day to concentrate and focus on simple things, to function and accomplish daily tasks. Nearly one in five people, an estimated 46.6 million adults in the United States today, is currently struggling with a mental health diagnosis. Again, according to NAMI, severe mental illness is defined as “a mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities.” (4) In other words, even the most severe mental illnesses are defined specifically by the impairment and limitations they place on the lives of those who struggle with them. Being mentally ill does not typically send people out on premeditated, politically-fueled tirades and crusades to callously violate the health and safety of others for personal validation or internet infamy. If these types of self-recorded outings and outbursts were commonly indicative of mental illness, with over 450 million people suffering from mental illness worldwide according to the World Health Organization (5), there would be drastically more people causing scenes like this all over the globe.

When taking into account that there are 2.3 million people currently incarcerated and only roughly twenty percent of those have any type of mental illness diagnosis, we are looking at roughly 460,000 inmates who are mentally ill. When you further consider that there are roughly 46.6 million people in the United States currently struggling with mental illness, those who are incarcerated and also have a mental illness diagnosis account for less than one percent of the over all mentally ill population. Again, the proof is in the pudding. Over 99% of the mentally ill community are going through the motions of living their everyday lives, struggling with their diagnosis, not out committing crimes or thumbing our noses at laws or restrictions put in place for the safety of all.

We are not gathering en masse or heading out in droves, intent on recording ourselves causing a scene in the desperate hope it may make us internet famous. Many of us struggle to even function at all, let alone make plans even remotely close to this extent. Rather, these are the calculated actions of self-centered, egotistical people who are showing complete disregard and apathy for everyone else, people who place more value in their own temporary fame than in the health of their families, friends, co-workers and neighbors. These are attention-seeking individuals throwing temper tantrums, so hungry for their five minutes of infamy that they are willing to put other people’s lives at legitimate risk just to have their name trending on the internet.

Though you may see the occasional anti-mask sentiment in other countries, no other country has the widespread, reoccurring, largely combative and often explosive or violent issues that the United States has with people being unwilling to tolerate minor temporary inconveniences for the safety of all during a global pandemic. While there are some people in other countries who may disagree with wearing a mask, you don’t hear frequent stories about their citizens recording themselves causing combative scenes like you do in the United States. To date, I have personally only seen one news story out of the UK about protesters recording themselves storming a store and making a scene. The vast majority of those who disagree with wearing a mask in other countries simply organize peaceful protests or hand out informational material explaining their beliefs on the matter. For instance, in late July there was a peaceful anti-mask protest in London attended by hundreds of protesters. More importantly, those who disagree with wearing masks in many other countries appear to be a small minority. The vast majority of people in many other countries have taken a united stance, observed health precautions with little to no issue and have, in the majority of countries, seen cases declining by the day as a result.

You simply do not see the largely hostile and combative anti-mask sentiment to the scale and degree elsewhere that you see in the United States. Only in the United States are we seeing such a ridiculous and reoccurring blowback against common sense during a viral pandemic that has frequently escalated to rage-fueled outbursts and outright violence, with people even being physically assaulted simply for asking others to comply with restrictions and regulations. Only in the United States are we seeing the virus being widely politicized, regularly used and abused to garner people’s five minutes of internet fame at the detriment to other people’s lives. And only in the United States is a bonafide medical condition being used as a catch all scapegoat to garner all the blame for the bad behavior of these self-centered individuals. With mental illness being a worldwide problem, if this abhorrent behavior was truly a direct result of mental illness, these outbursts would surely be widespread worldwide, as well. But this type of disturbing behavior is predominantly an American thing, driven not by mental illness but rather the largely American desire to become famous or infamous by any means necessary, even if it means putting other people at risk.

Whenever a woman shoves her cart through a grocery store while defiantly refusing to wear a mask, recording herself screaming about her rights to do as she pleases other people be damned, or whenever a man records himself causing a scene by screaming that he is under attack in a store because he was asked to either mask up or leave, or whenever a woman video records herself violently attacking a display of masks while proclaiming she has had enough with the pandemic and being told what to do, it goes viral because people cannot fathom others behaving so ridiculously, screaming like petulant toddlers throwing a temper tantrum because they were asked to be considerate of the health and safety of others. As long as these people continue to trend as train wrecks that other people laugh at for their sheer absurdity and willful ignorance, there will continue to be people out there acting out just for the attention that going viral brings. While we cannot stop those people from behaving badly, nor can we stop others from watching their ridiculous outbursts with abject horror, we must stop assuming their behavior is automatically caused by mental illness instead of simply being the result of attention-seeking, arrogant, apathetic human beings desperately chasing their 5 minutes in the spotlight. Often, bad behavior directly correlates to inconsiderate people who care only about themselves, not to mentally ill people. We don’t deserve to be scapegoats for their poor behavior.

1. https://www.nami.org/Blogs/NAMI-Blog/October-2019/Six-Myths-and-Facts-about-Mental-Illness

2. https://www.prisonpolicy.org/graphs/pie2020.html

3. https://namibuckspa.org/education/about-mental-illness/facts-figures/

4. https://www.nimh.nih.gov/health/statistics/mental-illness.shtml

5. https://www.who.int/whr/2001/media_centre/press_release/en/

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.

Stop Blaming the Entire Mental Health Community Whenever a Senseless Tragedy Happens

Mass shootings are commonplace in the United States these days.  One community has barely had a chance to mourn and bury their dead before another incident appears somewhere else on the map.  After the school shooting yesterday, a jaw-dropping statistic began to appear across the internet: In the U.S., there has been a gun incident at a school every 60 hours so far in 2018.  That is one every two and a half days.

Everyone is so quick to point fingers and lay blame.  One of the biggest scapegoats is the mentally ill.  Mental illness has become a dirty word.

When someone does something senseless and tragic, one of the first things you hear is that it wouldn’t have happened if not for better mental health treatment.  When there is a shooting, people question how someone who was mentally ill had access to guns.  When someone drives a vehicle into a crowded area or a parent kills their children, people question why someone who was that mentally ill was even allowed out on the street.  People clamor for more laws restricting the rights of the mentally ill for the protection of communities at large.  Politicians respond by shouting promises that there will be change in lieu of this mental health epidemic.

As someone who has struggled with mental illness my entire life, what I see are torches and pitchforks, what I am hearing is one step away from “lock all the crazies up for the safety of everyone else!”  It is a slippery slope.

Please know that I am in no way disputing that those people who commit senseless atrocities like mass shootings have severe mental issues and are desperately in need of help.  What I am saying is that mental illness exists on a broad spectrum.  Mental illness is  term to describe a wide variety of conditions that originate in the brain.  The scope of mental illness extends from diseases of the brain to diseases of the mind. Also, please know that there is a distinct difference between the majority of mental illnesses and the behavior disorders that sociopaths and psychopaths fall into.

Everyone suffering from a mental illness is not the same.  The Diagnostic and Statistical manual, or DSM, is published by the American Psychiatric Association and is used to diagnose mental illnesses.  The current APA list has around 400 different diagnosis, covering a wide range of mental, emotional or behavioral disorders.*

Yes, there are people that are mentally ill that are violent and commit unspeakable acts.  It might even be fair to say that someone has to have something wrong in their head to even be able to carry out anything as heinous as a mass shooting.  But the majority of people who have been diagnosed with a mental illness are non-violent.

According to recent statistics from the National Alliance on Mental Illness, or NAMI**, 18.5% of adults in the United States, over 43 million people, experience mental illness every year.  If a mental illness diagnosis alone was enough to determine a person was dangerous and likely to commit violent acts, with 43 million people suffering from mental illness every year, the numbers of violent crimes would be astronomical.

With millions of people in prisons across the United States and over a million more being sentenced each year to incarceration***, you would assume that prisons would be a hotbed of mental illness.  However, again according to NAMI statistics**, only 24%, not even one quarter of inmates, have had any recent mental health diagnosis.

The fact is that a recent study published in the American Journal of  Public Health shows that a person with mental illness is far more likely to be a victim of violence than the perpetrator****.  Based on this study’s statistics, almost one-third of adults who have been diagnosed with mental illness had been victimized in some way during the previous 6 month period, with over 40% being victimized multiple times.  Of the 23% of mentally ill persons in the study who had committed any sort of violent act in the previous 6 months, roughly 2/3 of the violence had occurred in a home or other residential setting.  A meager 2.6% of violence occurred outside the home in a school or workplace environment.  The most startling fact to come to light in this study, however, is that the victims of violence were 11 times more likely to commit violent acts themselves afterwards.

Yes, something has to be done in regards to mental health treatment in the United States.  But it is NOT because the mentally ill population is inherently violent and unsafe to wander the streets unrestricted and unregulated.  Mental illness and the way it is regarded in this country is a societal epidemic.  Those who have been diagnosed with mental illness must deal with constant stigma.  We are ostracized as being crazy and unbalanced, simultaneously a joke to be mocked and a dangerous monster who needs to be locked up for their own safety and the safety of others.  We often hide our diagnosis for fear of judgment or minimize our struggles to reassure others they have nothing to fear or worry about.

The way a mentally ill diagnosis is handled in this country has to change.  We need to be able to speak up, speak out and receive the treatment we need.  Though NAMI statistics show over 43 million people struggle with mental illness each year, only 41% have received treatment for their condition**.  Roughly one-fourth of the disability applications for Social Security list mental illness as their primary impairment.  Though NAMI statistics** show that 9.8 million people annually experience a severe mental illness that drastically impairs their ability to function, statistics from the National Institute of Mental Health show that only roughly 2.7 million people are deemed eligible for SSI or SSDI*****.  As I can attest, anyone who is applying for disability due to mental illness is advised to get a lawyer and to expect to be denied at least once, if not multiple times, regardless of how much documentation you have for your diagnosis.  Though my mental illness is due in large part to a verifiable genetic mutation I was born with, combined with well-documented trauma, I, myself, have been denied multiple times and still am deemed ineligible by government standards.  For years, I have struggled with red tape, jumping through hoop after hoop, hoping to get the help I need, only to hit brick wall after brick wall, having to begin the process all over again.

The lack of adequate treatment for mental illness in this country has grown rampant.  Suicide is currently the 10th highest cause of death in this country, 3rd highest among 10-14 year olds and 2nd highest for 15-24 year olds, according to NAMI statistics**.  Recently, a video of a disoriented mentally ill woman being cast out on the street by a hospital staff has gone viral.  According to the National Coalition for Homelessness, between 20-25% of the homeless population suffers from “a severe form of mental illness”********.  Mental illness is listed as the 3rd highest cause of homelessness.  People are falling through the cracks, wandering the streets untreated, people are dying, our children are dying, and yet nothing is being done.  The lives of the mentally ill are one by one becoming nothing more than statistics.

It should not be so hard to get help in this country.

There are others who are afraid to reach out for help due to government restrictions on the mentally ill.  There is an epidemic of mental illness and substance abuse among our military.  According to the APA, almost one-fourth of our soldiers, up to 24.4%, are struggling with mental illnesses such as PTSD******.  A recent study published in Science Daily from The University at Buffalo observing the mental and physical effects of law enforcement determined that not only was PTSD and depression a substantial issue, but nearly one quarter of police officers admitted to suicidal thoughts, much higher than the 13.5% of the general population*******.  And these are only the statistics of those who have willingly come forward seeking treatment.  Due to the push for politicians to pass laws regulating gun ownership, a mental illness diagnosis could result in losing the right to even own a gun.  How do we encourage our soldiers and police officers to get the help they need when it could mean giving up their livelihood in the process?

I personally know many people who are afraid to have a record on file about their struggles with mental illness.  They are people who hunt for recreation and are legitimately afraid that a diagnosis would take away their 2nd amendment rights and their ability to feed their families.  They are people who fear a diagnosis would negatively impact their career or their ability to advance due to the stigma attached.  They are people who have seen firsthand how poorly the mentally ill are treated in this country and do not want to be labeled as crazy and unbalanced, as well.  So instead, they suffer in silence, without treatment, until something cracks and breaks.

Yes, there is a mental illness epidemic in this country that is leading to horrifically tragic events.  But it is NOT due to people with mental illness having access to guns nor is it due to mentally ill people wandering around free and unfettered.  It is a direct result of society’s treatment, and lack of treatment thereof, of the mentally ill population.  Please take a second again and consider the facts.

Fact: Over 43 million people every single year struggle with mental illness**.

Fact: Only 41% of those with a mental health condition have received medical help for their condition in the last year **.

Fact: One third of people with a mental illness are victimized and abused every six months and those who are victims of abuse are eleven times more likely to commit a violent act themselves****.

We desperately need to change how mental illness is viewed and treated in this country.  The mentally ill population does not need more restrictions and regulations.  We need more access to health care, better support and protections.  We need assurances that it is okay to seek help and guarantees that the millions of us with a mental illness diagnosis will not all become vilified due to the actions of a minute few.

We need the stigma and persecution to end and the help and healing to begin.

That is the only way that things can change.

Republished on The Mighty on 2/20/18.

* AMA literature with the DSM codes for the broad spectrum of mental illnesses can be found at:  https://dsm.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425596

** NAMI’s Mental Health by the Numbers statistics can be found at:  https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers

*** Bureau of Justice Statistics page that provides incarceration numbers can be found at:  https://www.bjs.gov/index.cfm?ty=tp&tid=11

**** Study entitled “Community Violence Perpetration and Victimization Among Adults With Mental Illnesses” can be found at:  http://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2013.301680

***** Statistics from National Institute of Mental Health can be found at:  https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2015/mental-health-awareness-month-by-the-numbers.shtml

****** APA Statistics on Veterans can be found at:  http://www.apa.org/advocacy/military-veterans/mental-health-needs.pdf

*******Study on Law Enforcement done by the University of Buffalo, published by Science Daily can be found at: https://www.sciencedaily.com/releases/2008/09/080926105029.htm

******** The National Coalition for Homelessness report on Homelessness and Mental Illness can be found at:  http://www.nationalhomeless.org/factsheets/Mental_Illness.pdf

Are We To Blame For Our Depression?

Someone in a group I belong to recently posed the question “Is it my fault I’m depressed?”.

People immediately began chiming in on both sides of the fence, with the overwhelming majority stating a firm and clear “absolutely not”.  I hesitated to answer because I don’t think there is such a clear cut yes or no answer.  Life is rarely simply black and white.  There are many shades of gray.

I spent many years struggling with my own mental illness.  I saw many doctors, took a multitude of medications in all different dosages and combinations.  I tried changing my diet, exercising more, busying myself with arts and crafts, talking long nature-filled walks, everything anyone had suggested might work.  In my case, nothing helped.

Last year, my newest doctor sent me for a genetic test and we discovered that I had a genetic mutation that prevented my body from breaking down a specific vitamin my brain needed to function properly.  That broken-down vitamin is used by the brain to transport the chemicals, whether made naturally or in the form of antidepressants, where they are needed. Because my brain never received that substance, nothing my body made, no pill I took, even had a chance to work.

There is a pill version of that broken-down vitamin on the market.  My doctor prescribed it.  It took almost a year of fighting my insurance company to get it covered.  Now that I have it, there is a noticeable difference.  It is not a panacea, my depression is still here, but it is a start.  I have a long road ahead of me but at least I am finally on the right track.

It brings to mind a quote from Maya Angelou:

“Do the best you can until you know better. Then when you know better, do better.”

For years, I tried again and again to get help even though nothing worked.  I cannot blame myself for not knowing that, on a genetic level, my body was incapable of making what it needed in order for any treatment to work.  But now that I know better, I am doing better.

I do not believe we can blame ourselves when our bodies malfunction.  When someone is diabetic, their pancreas is not making the proper amounts of insulin and glucose.  People go to a doctor and get treatment so they can live a healthier life.  They are not to blame for their organ ceasing to work.  With mental illness, the only difference is the organ involved.  No one has any control over their brain not working properly.

But everyone does have control over whether or not they get the treatment they need.

I know some people will play devil’s advocate and say a diabetic wouldn’t have gotten diabetes if they hadn’t eaten so much sugar and likewise, someone who is mentally ill may have made poor life choices that put them in their predicament, as well.  However, that is not how it works.  Millions of people drink soda and other sugary drinks every day, yet not all of them have become diabetics.  Likewise, many people struggle with everything from drinking, drugs, bad relationships and dead-end jobs without experiencing depression.

There are many known hereditary and biological causes for mental illness.  Many people are predisposed to depression, having been passed through their family line.  For others, it can be caused on a genetic level from mutations.  In some cases, the onset is caused by an unforeseen tragedy or event that shakes a person to the core.  With me, it is a combination of them all.

Living a rough life does not guarantee depression any more than drinking a soda guarantees diabetes.  On the contrary, people from all walks of life, all socio-economic backgrounds, different races, religions, sexual orientations, upbringings all struggle with their mental health.  A hard life might contribute to a person’s mental illness but it does not cause it, much like drinking sugary drinks are a contributing factor to diabetes.  There is a big difference between causation, though, and a contributing factor.

Though we have no control over whether any of our organs are working properly, I believe there is a clear line here where we need to accept personal responsibility.  As Maya Angelou said “..when you know better, do better”.  Once we realize something is not working correctly in our bodies, it is our responsibility to take steps to fix the problem.  We need to do what we can to be healthier, live healthier.

Once a person has realized they are struggling with a mental illness, they need to at least attempt to get help.  I understand the frustration all too well when nothing seems to work, but we need to at least try.  Again, to quote Maya, “Do the best you can until you know better”.  Try therapy, meditation, medication, homeopathic remedies.  Something.  Anything.  Embrace whatever works for you.  But at least DO something.  Don’t suffer needlessly.  Take care of yourself the best you can. Then “..when you know better, do better”.

Nobody asks to be depressed.  No one has any control over whether or not they are diagnosed with a mental illness.  But you do have control over whether or not you treat your illness and you ARE to blame if you knowingly neglect yourself and your well-being.

Please take care of yourself the best that you can.  Get help when you need it.  Don’t let the judgment or stigma from anyone else prevent you from taking care of your mental health.  It is okay to need help, especially when your body is not working like it should be.  There is no shame in having a mental illness.  The only shame is in not getting the treatment you need.

Why, As Someone Who Speaks Out About Mental Illness, Donald Trump Scares Me

These are scary times we live in.

We are literally waking up every single day not sure if we will find ourselves in the midst of a nuclear war, a race war, or one of many other possible tragedies caused by the hasty words, actions and decisions of our nation’s “leader”.  Beyond all of that, as if that is not enough on its own, I have numerous mental health-related reasons why Donald Trump scares me.

Mental illness has become an epidemic of global proportions.  According to recent statistics released by NAMI, an estimated one in five people in this country, over 43 million people, struggle with it every single year.  Currently, only 41% of people struggling with mental illness are receiving mental health services.  Watching Trump whittle away at health coverage means that even less people will be able to afford to get the mental health treatment they need.

My fears regarding Trump extend far beyond the medical coverage he is systematically and vengefully stripping away from our citizens that need it most.  There are many other reasons I am sincerely afraid of our current president.

The fact that he openly mocked a disabled reporter for his condition in front of the press corp is mortifying.  Looking through his list of tweets provided by The New York Times, he has repeatedly taken jabs at his opponents and adversaries, hurling insults commonly used to mock the mentally ill like “crazy”, “wacko”, and “a real nut job”, acting as if mental  illness is a joke.  Mental illness is a bonafide disability that has been battling stigma and fighting to be taken seriously for far too long.  Trump has made it clear that he has no respect for those with disabilities.  We do not need nor deserve to become another one of his punchlines.

I have personal experience with narcissists in my past and have spent a great deal of time reading about and researching narcissistic personality disorder.  Many of the actions and behaviors he exhibits are commonly known and widely accepted markers for this mental disorder.

In one breath, Trump proudly declares that it is perfectly fine to grab a woman inappropriately and that he has done so in the past, suggesting that, as a man of power, he can get away with it.  He admitted to it in his own words in an interview with Access Hollywood’s Billy Bush:

“I’m automatically attracted to beautiful [women]—I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait. And when you’re a star they let you do it. You can do anything … Grab them by the pussy. You can do anything.”

To forcefully touch a woman without her consent is sexual assault.

The next moment, he is touting that any accusations of sexual assault made against him are complete lies and fabrications, claiming the allegations are “totally phoney”, “100% made up”, “already proven false”, and “made up events THAT NEVER HAPPENED”.  That is classic gaslighting.  When someone is gaslighting, they repeatedly insist past events never happened or minimize their actions, trying to make the victims appear crazy even when clear evidence exists to the contrary.

His narcissistic entitlement goes beyond women.  During his campaign trail, he happily declared that “I could stand in the middle of 5th Ave. and shoot somebody and I wouldn’t lose any voters.”  Though Trump paid $25 million dollars to settle the case out of court, he continued to dispute allegations made against Trump University and did so “without an acknowledgment of fault or liability.”  People with narcissistic personality disorder believe themselves to be above other people, sometimes even above the law.

The narcissistic personality traits do not end there.  He actively “love bombs” those who support him, only to discard them and replace them with a new supply when they are of no further use.  He has repeatedly used triangulation to play opposing sides against each other, a common narcissistic tool.  He appears incapable of accepting any responsibility for his own actions or words.  He is overly arrogant and self-inflated, has an inherent need for approval and a lack of empathy for anyone else.

Perhaps the biggest thing that scares me about Trump, though, is that there is no question in my mind that he himself needs serious mental health treatment yet is highly unlikely to seek it out.  Narcissists are incapable of accepting that there is anything wrong with them.  The problem always lies with everyone else.  Yet, everyone who has dealt with someone with an untreated or undertreated mental illness can spot the signs.  I know I can.

I grew up with a mother who struggled with often untreated, always undertreated bipolar disorder.  I lived through the ups, the downs, the irrational, delusional behaviors and potentially dangerous choices with no consideration for their consequences.  I suffered through the relentless lashing out and honing in on one specific target until the horse was beaten well past death.

I see so many of those behaviors mirrored in Trump and it terrifies me.  Whether he is going after Hillary Clinton, the NFL, the media, Obamacare, or Kim Jong Un, once he sets his sights on a target, he is incapable of stopping himself.  He keeps going back with an unfettered and illogical, unwarranted rage, intent on obliterating his target by any and all means necessary.

I’ve seen that rage before.  I grew up with that rage.  I grew up watching untreated mental illness that is fueled by that rage.  I know how it ends and it is not pretty.

With my mother, it ended with her showing up at my father’s work and shooting him twice in the head.

It isn’t a pistol, however, that Donald Trump is armed with.  As our president, he has the ability to deal damage and wreak havoc on not only a national but a global scale.  Among other things, he has the ability to both take affordable health care away from millions of people struggling with mental illness and the ability to start World War III.  His potential devastation is only limited by whatever his mind has honed in on at that particular moment as a target worthy of annihilation.

Nobody realized how dangerous my mother was until she had her pistol in hand.

I know the signs.  I’ve already lived through this story once on a smaller scale.

I don’t need a bomb to drop to accept how badly all of this could end if he is left unchecked and untreated.

It is a terrifying world out there.

And I am justifiably scared.

 

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.

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

Previous pieces written about my fight for coverage include: Fighting for My Mental Health, The Meds Crash.. and The New York State Appeals Process: Apparently Not Everyone Who The State Certifies To Prescribe Medication Is Considered ‘Educated Enough’ To Defend Their Patients’ Prescriptions During An Appeal.

Life Happens..

They say life happens, whether it happens while we’re making other plans or it happens so we must deal with it or one of many other overused cliches meant to help usher us into reality.  I’m not quite sure who “they” are but they definitely hit the nail on the head with this one.  Life happens without a doubt.

My writing has been put on a back burner for a couple months now.  Both my ongoing blogs and the books I have in the works have been delayed.  It is not that I have lost interest or my passion or that I have run out of topics to write about.  Far from it. My mental health and my journey towards mental wellness are still very much a priority and are nothing I would ever give up.  Life just happened.

On a high note – after almost a year battling my insurance company over covering my Deplin, I finally won my last external appeal.  CDPHP has yet to start paying for it, but it has been deemed medically necessary by outside sources with the ability to overrule their decision.  It is a huge victory and more than worthy of a large celebratory post, but again, life happened.

On a very low and tragic note, I have hit some painfully rough waters with the man I love.  There is no need for anyone to prepare themselves for the drama or heartache of a love grown sour for we are still very much together.  Our relationship is truly one of the best things in my life right now.  It was a different sort of heartache.

His father had been ill.  Terminally ill.  We understood he did not have much more time with us, but we had expected much more than what we had been given.  It went so quickly from an untimely fall to a trip to the emergency room to the intensive care unit to hospice.  No one was ready.  I know that no one is ever truly ready for such a loss but it all happened so quickly.  Too quickly.

I’ve spent the last year deconstructing and reconstructing myself piece by piece.  I’m by no means back together quite yet.  I am a work in progress in every way.  But everything going on with myself was cast aside on the back burner so that I could be there for the man I love.  There wasn’t even a question in my mind.  I had to be there.

The man I love is a good man.  Beyond good, in my opinion, but I’m far from impartial. He has been through a lot in his life – we are kindred spirits in that sense.  He has such a warm, loving and compassionate heart.  And life had torn it clear in two.  Nothing, not my writing nor even my own well-being, was as important to me as being there however I could for him.

This was his Dad.  He had already lost his mother a few years ago and was still recovering from that.  Losing both parents leaves a hole, an emptiness that nothing else can ever truly fill.  Life had rendered him an orphan.  I knew that feeling all too well and I could not leave him to face it alone.

Hospice itself was beyond agonizing.  Nothing in life can prepare you for watching someone who was once larger than life slowly fade away.  I’ve been there myself, as well. Hospice is where my father spent his final days as his cancer ate him alive.  Though every moment of the days in hospice with his father held me in a death grip, threatening to pull me back into the past with my father, there was nowhere else I could be but at his side while he spent his final days with his own.

Next came going through the motions of the final preparations and the flurry of condolences that come with a great loss.  Though the words are heartfelt and well-meaning, they cannot even begin to penetrate the numbness that comes with the realization that someone who has always been there is truly gone.  I understood completely how he felt and where he was mentally and emotionally because I have been there myself.  It is a feeling you never forget.

As they often say – “When it rains, it pours”.  Life was not satisfied with dealing that one large heart-wrenching blow.  The last couple months provided a steady barrage of ill-timed hardships to rival even the most depressing country or blues song.  His truck – the last vehicle his mother had driven – needed work to pass inspection and stay on the road. His boat – left to him by his father as a reminder of better days and a multitude of fishing trips together – wouldn’t start and needed repairs.  His cat – given to him by his parents to help him through rough times in his past – was injured and needed to go to the vet.  It was as if every aspect of his life that was tied to his parents was collapsing and crumbling under the weight of the tragedy of his father.

Add to the mix us scrambling to find a place together.  Neither of us could continue to stay where we have each been nor did we honestly want to live separately any longer. One of the only truths we have embraced during these very uncertain times is that we not only wanted but that we NEEDED to be together.  In the short time we’ve been a couple, we’ve become a rock for each other, that light we each cling to when trying to find our way out of the darkness. We understand each other in ways no one else ever has and find a comfort in one another that has been lacking from our lives.  We belong together.

We eventually found a place in his old stomping ground out in the country, literally next door to where he had lived a few years prior.  It is a small place and I’m honestly not sure how we will fit everything into it, but we will manage.  It is familiar territory for him and we are together.  It is home.

Since moving in, we honestly have not been as productive as we probably should have striven to be, but we both needed some downtime to catch our breath, recuperate and heal.  Life has been overwhelming and we both honestly needed a break.  Some avenues of our life have suffered a bit but we have been doing our best to keep going, take care of ourselves and each other.

Life happens.  I’m numb to it at this point.  I’m honestly not sure how I have managed to not crumble into a million tiny pieces by now but somehow I’m still going.  I have to keep going because he needs me there.  Like me, he is an orphan now.  I have to keep going because I need to take care of myself, as well.  We will be okay, though.  We HAVE to be okay because in each other we have finally found what we’ve both been missing in our lives.  We are both seriously overdue for our happily ever after.

We are going to get through this, get past it.  We are going to find some way to heal and to keep going.  We are going to be okay.  We will survive and we will be okay.

They say to fake it until you make it, to keep telling yourself things until you believe it and it becomes truth.  Again, I don’t know who “they” are, but they’ve been right about everything else so I’m hoping this pans out as well.  I shall embrace my hopes for future wellness as my mantra, repeating them in the hope that in time they become reality. Because life has definitely happened and we need more than anything to be okay again.

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.

 

The Meds Crash..

What Happens When Your Insurance Company Won’t Cover the Medications Needed for Your Mental Health

In the last year, I have made so many positive strides in my ongoing fight to get in front of my mental illness and to be in a healthier place.  I not only have begun finally opening up, writing and talking about my struggles with depression, anxiety and p.t.s.d., I have begun therapy at a wonderful facility that uses a multi-pronged treatment plan to combat mental illness, involving not only traditional treatments such as therapy and medication management but also incorporating unconventional tools such as yoga, meditation and art into the mix to help people heal mind, body and soul.  Perhaps the greatest stride forward I have made, however, happened thanks to a genetic test my new doctors gave me that identified a genetic mutation I possessed that has been the linchpin blocking all previous attempts at medication and treatment.  Due to this genetic mutation, my liver is incapable of metabolizing folic acid, a simple b vitamin used by the brain to help transport the chemicals needed to help moderate my moods and depression.  It is a fairly simple fix because there is an already broken-down version of folic acid on the market, a synthetic version that can help my brain to function properly – something it has never been able to do on it’s own, due to my genetic mutation.  However, the simple yet life-changing fix has been completely derailed by my insurance company, CDPHP, that refuses to cover it.

My doctor had been providing me with samples of the broken-down folic acid, also known as l-methylfolate or by the prescription name Deplin, for the last seven months.  While it is in no way a panacea that would make my mental illness disappear, it made a world of a difference.  I had more clarity, was able to focus better and function more.  I was able to fight back tears and move forward, face fears and be productive in ways I previously never imagined possible.  I found myself able to genuinely smile and experience happiness.  Despite the fact that I was going through one of the rockiest times in my life, I had real hope.  It was the beginning of a new life, a new world for me.

Yet despite how much of a breakthrough I had achieved on many levels thanks to this medication, CDPHP continues to refuse to cover it, deeming it unnecessary.  My doctor had a drawer full of samples to keep me going while we began our fight for coverage.  I had been filing appeals, reaching out for help, fighting with every ounce of energy and courage that I could muster, completely due to the Deplin helping my antidepressants and anti-anxiety medications get where they were needed in my brain, something they could never do on their own because I had always been medication resistant due to my genetic mutation.

…And then the samples ran out.

…And my internal appeal for coverage by CDPHP was denied.

It has been a week since I have had any Deplin in my system.  Where I was previously up before seven in the morning every day, up for breakfast and ready to start my day, I can’t seem to pull myself up out of bed again.  Today, it was almost eleven before I even got out of bed.  Less than twenty minutes later, I was back in bed, wrapped in my blanket, wondering why I was even bothering.  Each day, it becomes increasingly harder to do anything at all.

Even the simplest conflicts feel unbearable again.  I find myself panicking and breaking down into tears over even the smallest bumps in the road.  Where previously I was convinced that I could somehow figure things out and find a way, I don’t feel like I can deal with anything right now.  I’m afraid to go out, to leave my room, because I have no control over my emotions or my tears anymore.  My mind is racing again, I cannot focus, I cannot sleep, I have no desire to eat, no desire to do anything.  I feel like I’m in a constant panic, one word away from breaking down into tears again.

It is like I had entered a Renaissance, a beautiful world full of progress and hope, only to be kicked back into the darkness of the stone age.

I have an external appeal yet to file with the state but I don’t know if I can do it.  I don’t know if I have the strength.  My mind keeps asking me why bother?  Everything feels hopeless.  The battle feels lost.  All I want to do is climb back in bed and cry.  That other world, that one where I was smiling, where I felt hopeful, feels like another world, another life, just a dream.  I’m terrified I’ll never find my way back to that person again.  Sitting out in public, typing this out, I cannot stop the tears from flowing, cannot find my way back to the person I was even a week ago when I believed that things were going to be okay, when I believed in hope.

This story began with Fighting for My Mental Health on 1/13/17.

Republished on The Mighty on 5/11/17.

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.