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.

The Purrfect Medicine: Separating The Myths From The Truth About Having An Emotional Support Animal

I have a pair of sugar gliders.  They’ve been with me for over six years, since they were eight weeks out of pouch.  For those who do not know what sugar gliders are – they are small marsupials that can live twelve to fifteen years and bond closely with their owners.  I have brought them many places in their bonding pouch, from stores to museums to farmers markets and parks.  They have helped me through many mental and emotional hurdles over the years.  Having them with me gives me a sense of peace of mind and security, helps lower my stress levels when my anxiety rises and makes it easier to recenter myself when my depression begins to spiral down out of control.  Having my furbabies with me makes my mental illness more manageable.

When my life fell apart and I had to move last year, I had a very genuine fear that whatever place I found might reject my sugar gliders because they did not know what they were or did not allow animals.  I had heard that having your animals registered as emotional support animals would help protect against that, so I began researching what I needed to do.  What I discovered along the way is that there is a ton of misinformation out there.

Myth: For a nominal fee, anyone in the United States can go to one of a handful of sites and pay to have their pet legally registered as an emotional support animal, even receiving a specially printed certificate.

Emotional support animal registration sites are a scam!  The certificates are literally not worth the paper they are printed on.  Registering an animal as an emotional support animal does not cost anything.  The only way in which you legally register your animal is by having your primary care physician, psychologist or psychiatrist write a letter deeming that your animal is needed for your emotional and mental well-being.  They do not even have to include your specific diagnosis – just that you are under their care and they believe having the pet is beneficial to your health and losing the animal would be detrimental to your health.  It is THAT simple.

A sample letter for your doctor to write, registering your emotional support animal, can be found HERE.

Myth: Only certain animals can be emotional support animals and they must be specially trained in some way.

Unlike service animals which have rigid guidelines as to what animals can be considered one, virtually any pet can be an emotional support animal.  They do not need any type of training because they are there as companions to help with your emotional and mental state.  Once again, the ONLY thing you need for your pet to become an emotional support animal is a letter from your doctor deeming they are necessary for your well-being.  It does not matter if they are a cat, a snake, a hedgehog, a lizard or a horse.

Myth: Emotional support animals can legally go anywhere that other service animals can go.

Laws regarding emotional support animals vary by state.  Some states, such as New York where I live, don’t even recognize them in state laws and refer to federal guidelines with regard to housing.  Emotional support animals are NOT the same thing as a service animal such as a seeing eye dog that has been specially trained to perform specific tasks for their owner.  As such, they are not always awarded the same rights as service animals.  Don’t assume you can bring them out everywhere with you because your doctor has deemed them necessary for your mental and emotional well-being.  Do your research to find out what your state allows.

For example, New York guidelines on emotional support animals can be found HERE.  As stated in the brochure, New York differentiates between service animals and emotional support animals, deferring to federal fair housing guidelines in regards to emotional support animals.

Myth: A landlord has the right to deny me if they do not allow pets in their buildings or if my emotional support animal has not received any formal training classes.

Federal HUD guidelines include emotional support animals with service animals with regard to housing and state that a landlord cannot deny housing for an emotional support animal.  It further states that an emotional support animal is NOT considered a pet and does not require any training.  Furthermore, breed and size limitations do not apply to emotional support animals.  The landlord can request to see documentation from your doctor specifying your animal is an emotional support animal but is not entitled to access to your medical records or specific diagnosis.  Regardless of whatever your individual state laws might be on emotional support animals, federal law surpasses state laws on the matter, meaning that because housing cannot be denied due to the presence of emotional support animals on a federal level, no state can override that right.

Further information on the federal HUD statute regarding emotional support animals can be found HERE.

There are only two situations where a landlord can legally deny your emotional support animal. They are:

• If the landlord lives in the unit, and they or a member of their immediate family have an allergy to the animal.
• If the animal has aggressively threatened someone. (This must be the specific animal in question, and not based on beliefs about their breed or weight.)

The resources that explain these exceptions and your rights if you believe your landlord has discriminated against you based on your need for an emotional support animal can be found  HERE on the tenant resources page.

Myth: Once an animal is considered an emotional support animal, that trumps all other laws.  I can live anywhere I want with them and nothing can be said or done to stop it.

Common sense applies here.  If horses are not allowed within city limits, you cannot get yourself a horse and bring it into your city flat, stating it is an emotional support animal so you are entitled to keep it there.  If your state deems the pet you own is illegal to own in your state or requires a special permit to own, you must abide by those laws just like everyone else.  For instance, there are a handful of states in which sugar gliders are illegal to own.  Regardless of their status as emotional support animals, I cannot move to one of those states and expect to reside there with them.  Please keep in mind that there are also a handful of places you may not be able to reside with your emotional support animal, such as a hotel or motel because they are not considered traditional places of residence.  However, according to federal HUD guidelines, you cannot be denied housing with your emotional support animal in “public housing agencies and some places of public accommodation, such as rental offices, shelters, residential homes, some types of multifamily housing, assisted living facilities, and housing at places of education”.  Please keep in mind, though, that you must take proper care of your animal and clean up after them just like you would any other animal.

Myth: My landlord says that in order to have my emotional support animal on the premises, I must pay a pet deposit or pay a little extra each month and must prove that my animal has been properly trained.

The federal HUD guidelines prohibit landlords from charging a pet fee for any service animal or emotional support animal.  Nor can a landlord demand any sort of training certificate or place restrictions on the type of animal owned as long as the animal is considered legal in your municipality.  The situation is addressed specifically on HUD’s Q&A page on the matter, labelled situation one, which can be found HERE.

Truth: An emotional support animal can be a very helpful tool in treating many mental illnesses, such as depression, anxiety and PTSD.

I can state this, without a doubt, based on my own personal experiences and the experiences of others I have known who have turned to animals as a coping mechanism for their mental illness.  The benefits of having a furry, feathered or scaly companion are numerous.  Having an emotional support animal if your doctor deems it necessary for your emotional and mental well-being is your legal right in this country.  Registering your animal as an emotional support animal in the United States is not hard or time-consuming and does not cost a thing.  However, both having your animal there with you and having the peace of mind knowing that no one can deny you housing for owning your emotional support animal is priceless.

Republished on SelfGrowth.com on 10/17/17.

 

Logged In: Video Games & Mental Illness

Video games have become a large part of society today. While once considered a past-time for nerds, in recent years they have become mainstream, incorporating popular culture, movies, tv shows and sports in a way that appeals to the masses. From computers to consoles to games and apps on phones and tablets, video games are now seen as a widely accepted way for people to relax, unwind and pass the time.

Many people who struggle with mental illness have come to fully embrace the world of video games.  Though gaming is seen as an acceptable past-time for others, unfortunately the stigma surrounding mental illness makes people assume that anyone struggling with a diagnosis such as depression is just being lazy when they play video games.  The fact that someone is able to play, or even excel, at a game is seen as some sort of undeniable proof that a person is just “faking” or “exaggerating” their illness and that they would be fully capable of working and functioning to their full potential if they just “applied themselves”.

Nothing could be further from the truth.

Playing video games as a tool for coping does not make a person lazy.  Excelling at a game does not automatically mean a person would be able to excel at all other aspects of their lives equally.  Playing a game does not negate or minimize a diagnosis.  Gaming, however, can make some of the symptoms of mental illness more bearable and can be a healthy addition to our lives.

Video games can be very beneficial to someone struggling with mental illness.  The focus needed to complete tasks in games can provide a much-needed distraction from aggressively looping negative thoughts.  The repetition of many games can be soothing, helping to lower and lessen anxiety.  When the world feels completely overwhelming and unbearable, video games can give a temporary escape so that someone on the verge of a meltdown or anxiety attack can catch their breath.

Though many are quick to counter with the fact that both meditation and exercise can do the same thing, they often don’t understand how the mentally ill mind works.  I personally have taken classes for meditation, yoga and tai chi.  While they are beneficial in their own way during times when I am already relatively calm, none have managed to silence the inner turmoil when my brain is already caught in the throes of an anxiety attack. While focused breathing might calm me long enough to stave off the panic attack for the moment, I often need to find some seemingly mindless task to distract my mind until the dust fully settles.  When my mind is in an over-active loop, I usually need some type of busy work to pull my attention away before I can even begin to consider calming techniques.  Video games provide those menial tasks to help distract my brain long enough to re-center myself.

Though exercise might be seen as a healthier alternative, as well, most do not consider the fact that, for many struggling with mental illness, it is hard some days to even pull ourselves out of bed.  There are days we lay there for hours having to pee, not out of laziness but because, mentally and emotionally, the world feels so overwhelming, so unbearable, that we cannot bring ourselves to face it.  Though simple exercises like going for a walk might seem like an ideal low-impact workout to others, when we are struggling with our illness, we tend to isolate, terrified of others seeing how much of a mess we truly are.  It is not that we don’t want to get out there, exercise and be healthier.  Some days, it takes everything we have to just go through the basic motions of life.  Video games give us a way to virtually “get out there” on our terms and at our own pace even when we do not feel capable of physically facing the world.

Video games also give us a temporary escape from a world in which we feel broken.  Instead of being that “crazy, unbalanced person” who “is lazy” and “can’t seem to pull their life together”, we can for a few moments in time be something more: a brave knight, a fierce jedi, a wise wizard, a pro athlete or an ingenious arch-villain.  We can solve puzzles, reach goals, and build things, all on our terms at our own pace.  We can achieve a sense of accomplishment at something, which is greatly needed at times when we feel we mess up everything we touch.

Many people struggling with mental illness feel like outcasts.  Much like any other social platform, multiplayer games also give those who feel isolated and alone a way to socialize with other people with similar interests without the stress and anxiety of face-to-face interactions.  Over the years and a variety of video games, I have chatted with many wonderful people and forged numerous lasting friendships.  One thing I have discovered over many late night discussions with others is that there are many other people struggling with mental illness who are using gaming, as well, as a coping mechanism.  None of us are alone when we log in.  More people understand our struggles than many realize.  We are a growing group within the gaming community.

There are people who ask why we can’t apply the same effort and energy to other aspects of our lives as we do to gaming.  The answer is absurdly simple. Gaming does not run on a set schedule.  Mental illness makes it difficult to function on a schedule because we are at the mercy of the chemicals in our brain.  We do not know if from one day to the next, one hour to the next, we will crash, spiraling down uncontrollably.  There is no way to predict our highs and lows.  Most people cannot set their own work or school schedule, calling in to say “today’s looking like a good day – I’m going to work for ten hours straight” one day and then call in unable to function at all for the next three days.  Most jobs expect a consistent level of productivity and won’t accept a person showing up, chatting and puttering around for a few hours because they don’t want to be alone.  Most people cannot pop into work for a couple hours on a random Thursday night at 2 am because their anxiety won’t allow them to sleep or they keep having nightmares and need a distraction.  Video games give us a virtual universe of vastly different worlds we can visit any hour of the day or night as needed without expectations beyond those we set for ourselves.

Video games have become a safe haven for those struggling with mental illness.  Gaming is an outlet we can embrace any time, day or night.  When our minds are caught in a negative loop or our anxiety is through the roof, we can distract ourselves from the safety of our own home.  We can be anyone we want to be and achieve some sense of accomplishment, even when we feel otherwise broken.  We can socialize and surround ourselves with others so we do not feel completely isolated and alone in the world, but on our own terms.  We can build friendships and be a part of a community without the pressures of face-to-face interactions during times we do not feel capable of facing the world in person.  Perhaps most importantly, we can log in and out at our own discretion.  If we begin to feel overwhelmed at any time, we can leave the game or play something else.  In a world that often feels like it is spinning wildly out of control, it gives us a sense of control.

I personally have used gaming for years as a coping mechanism and an outlet to work through overwhelming feelings such as depression, anxiety and anger.  While video games have many benefits for those struggling with mental illness, they should never be used as a constant and continual escape.  There needs to be balance and we must stay grounded in reality.  We should never become so caught up in our gaming worlds that our actual lives suffer.  Like any other illness, we need treatment to manage our symptoms and help us function to the best of our ability.  We can, however, embrace video games as another tool in our arsenal to help us get through those overwhelming rough patches and to further enrich our lives.  It’s a brave new world out there where we can log in and be whoever we want to be.  Gaming has become a socially acceptable past-time these days and we have just as much right to enjoy and embrace it as everyone else. Many of us are already logged in and playing.

Republished on SelfGrowth.com on 10/17/17.