law being ignored
Recently released research into the origins of mental
illnesses is opening the doors of hope for those who are suffering from these treatable disorders of the brain.
The findings underscore the biological nature of mental illnesses and spotlight the importance of unhindered and non-discriminatory access to crucial services and modern medicines.
The Mental Health Parity and Addictions Equity Act of 2008 is a ground-breaking law requiring insurance companies to provide coverage for the treatment of mental illnesses and addictions equal to any other medical condition.
Unfortunately, unequal insurance coverage still exists and creates costly burdens on doctors and patients, including impossibly time-consuming prior authorizations for psychiatric medicines and requiring doctors to substitute different, cheaper medicines than those prescribed in the patient's best interest.
The individual complexity of prescribing medications is best left in the hands of experts who know their patients and understand the catastrophic nature of disrupting continuity of medical care by intrusive, detrimental constraints on prescribing.
Interrupting access to medications or pressing people with serious mental illnesses to take the wrong medications can quickly spiral into unemployment, homelessness, jail and suicide.
These outcomes are unique to mental illnesses and are, for the most part ,hidden and unreported. Yet they are the fundamental costs of overriding a physician's judgment. Third-party payers should report all adverse outcomes and grievances filed following denials of coverage, complex prior authorizations and "therapeutic substitution" of a physician's judgment with cheaper medications.
Compounding access issues, people living with these disorders of the brain are often unable to navigate complicated denials, appeals and grievance procedures, in effect, pushing these medicines even farther from the reach of those who need them the most.
The illusion of equal insurance coverage for psychiatric illnesses is a hidden slipping place.
As a person diagnosed with schizophrenia and a mood disorder, I understand the critical consequences of missing even a few doses of carefully prescribed medications. In fact, 24 hours without medications leads to hospitalization for me.
Discriminatory treatment of mental illnesses is not new. But in 2017 accessing modern psychiatric medications should be easier, not more difficult given what is known about surviving mental illnesses with hope and a future. Eventually, research and better medicines will make mental illnesses afflictions of the past.
But for now, enforcing mental health parity laws is vital. In addition, eliminating all discriminatory policies and practices impacting mental illnesses should be a legislative priority.
We, the people of the State of Florida, have already lost too many of our own to mental illnesses. But ensuring people with serious mental illnesses receive expert care and modern medications opens the doors into the hope of living productive and meaningful lives. The future of mental illnesses in Florida is in our hands and in the unity of a shared vision. We are all in this together.
But when companies are in the business of making money based on health care decisions, absolute transparency and accountability for cost- driven damages, including loss of life, must be the price of doing business with the citizens of Florida.
Peggy J. Symons
DeLand Symons is an advocate for people with mental illness.
Behind victory, tragedy
Continuous news coverage of Florida State University’s onward roll into college football supremacy is a stark contrast to disappearing media focus on the Nov. 20 campus shooting that left one dead and three others wounded.
Shortly after the last shot was fired, Gov. Rick Scott and FSU President John Thrasher took center stage, surrounded by news cameras, to announce an event that shook the foundations of the university.
But when the cameras stopped rolling, one of FSU’s darkest days slipped off the front pages along with every other high-profile tragedy of mental illness.
Statements by friends of the shooter tore the shadows off a deep spiral into severe illness that ended in the worst possible outcome.
There is far more at stake in this story than playoff games.
We are squandering another opportunity to profile the terrible course and outcome of severe uninterrupted mental illnesses, and expose a public health crisis in our midst.
To Florida’s shame we can produce a winning football team, but we have buried our mentally ill under some of the hardest turf in the nation. No matter which way the compass is held, the dial of accountability always points back to the Legislature.
Every year Tallahassee lawmakers create spending bills that keep us 49th out of 50 states for allocating funds to treat severe mental illnesses.
There are two roads rising from this tragedy. One leads back into the shadows of indifference that have hidden our mentally ill for decades. The other is to pursue a fully funded legitimate system of psychiatric services for our most profoundly ill.
We cannot allow a curtain to fall over the FSU shooting without learning from what is lost and carrying the lessons into the future. It is a short walk from the FSU campus to the state Capitol. Tallahassee is ground zero.
Peggy J. Symons
Peggy J. Symons © Copyright
The Light of the Journey
In the light of a shared journey, life is an ever moving map of interconnected design.
Its interchanging roadways link our lives with the bridges and bonds of relationships and pivotal points of passage.
Sometimes, and for no apparent
reason, the familiar roads of life disconnect and drift off to distant places.
Those of us who live with the disorders of the brain that cause mental illnesses can
find ourselves on breakaway roads without choices we made or fault that we bear.
We are set on a journey we did not choose, walking down roads laid out in front of us that are forever mis-marked or have no name or direction.
Many of us are familiar with the roads that lead into the endless place where boundaries fail and time and suffering warp into infinity.
These are the desperate roads we remember as the place where all hope surrenders to despair.
They are the dark and dusty roads of serious mental illnesses, routes that too many of us walk and we walk alone.
We travel the way of this journey drawing on reservoirs of courage and tenacity the world rarely sees, sometimes pulling each step out of these unseen places of inner strength.
In the moments of our greatest trials, in the inner place that we seek our strength, our steps will tell their greatest stories.
If we follow these footsteps inward and trust the vision they will bring, we can see a light rising from this hidden place.
This is the light that reveals from within.
It is the light of our own courage.
If we see it as it is, it will illuminate the dim roads of this unwanted journey.
It gives us the vision to turn around and see long stretches of the road that were so dark and difficult we thought the
night would never end, yet the sustaining
light of inner strength we didn't know we had lit the way.
The light reveals the places the roads were broken and the bridges of faith and courage that carried us over all the broken places.
Looking back, courage will show miles of roadway that disappeared entirely and that somehow our feet found the way back.
In this vision, cast through the darkness, we can see every hand held out to us along our way.
This is the transforming light, that when the dust of
our journey clears from our eyes, we can see that courage has risen as an indwelling light over the miles we
walked in the dark of the night.
We must keep this inner light focused and true, never letting it dim or slip away trying to compare our lives to the journey of another.
In the moments we feel we have hopelessly fallen or failed, we must remember to turn around and see the light of our own
journey rising over the roads we have
Hold it close and trust it to lead you.
It is the light of the journey.
MY FAMILIES JOURNEY INTO HOPE
The Genetic Study of Schizophrenia;
National Institute of Mental Health
It has been several years since my family
and I found a description of the Genetic Study of Schizophrenia in the “Advocate”, a quarterly publication of National Alliance on Mental Illness.
This research is an ongoing study at the
National Institute of Mental Health (NIMH) in Bethesda, Maryland.
Researchers are looking very closely at the genetic and non- genetic factors that raise the risks for schizophrenia.
Of eight siblings, I am the only one with a schizophrenic disorder.
Our family applied to this study knowing that this research is generating information giving
neuroscience the keys that
are beginning to break into the complex biological codes of
At the time, my brother’s business interest was providing computer technologies to researchers studying the genetic abnormalities within the full and complex human genome.
He recognized the neuro-imaging and genetic technologies as the most advanced tools of neuroscience in the world.
We embraced the opportunity to benefit others with this disorder.
This particular study, one of several, compared the genetic differences between siblings who are affected by schizophrenia and those who aren’t.
It was an opportunity for seven siblings to add an unusual wealth of information to research.
We were accepted into the study and welcomed as respected and valued partners in this pioneering research.
The National Institute of Mental Health arranged our flight schedules, hotel bookings, and testing days to maximize the rare time we had to spend together.
The study was a fast moving two days of detailed magnetic resonance imaging, interviews, and neuropsychological testing.
Other than a routine blood draw, there was no invasive testing.
For our family, the long road to the genetic
study of schizophrenia began almost three decades before.
I was hospitalized in 1975 after a three year slide into a psychotic
I fell into the hands of a psychiatrist who psychoanalyzed my hallucinations and assessed my entire family as“schiziophrenigenic”
Despite the fact that neurobiological anarchy was sweeping through my brain like a forest
fire, realitybegan to dawn
on me by 1979: I had seven brothers and sisters and none of them were like me.
They were all working, going to school, or were in college.
We were of the same parents, and we were all raised by a courageous and hard working single mother who loved us all.
I was different from early in life.
As a young adult, hallucinations and depression were taking over my entire life.
None of my brothers and sisters had ever
been brought to their knees by visions and voices and depression that paralyzed even my will to live.
I knew my family was not doing this to me; there was something wrong with my brain.
I found another psychiatrist who remained with me for twenty-five years as a constant source of expertise and encouragement.
Looking back from 2009, I call the primitive and hopeless psychiatry of the 1970s the “dungeons of the day.”
Old Freudian ideas that twisted the psychiatry of schizophrenia away from the brain onto blaming families were still widely held.
It was a dated era still spun with mythically monstrous mothers named and blamed as “schiziophrenigenic mothers”
The psychoanalytic psychiatry of the 1970s perpetuated the influence of a century
of Freudian ghosts that linger to this day as
the deep shroud of shame, guilt, and misunderstanding that continues to obscure the neurobiological legitimacy of this illness.
Before we left the NIMH, I talked to the lead investigator of the study.
I told him what it was like for me coming from the “dungeons of the day” 28 years ago to be
working with the NIMH as a
full and respected partner in research that I never thought would happen in my lifetime.
At the time, I was told that five or six genes increasing the risk for schizophrenia had been discovered.
There are now many more genes suspected to have a role in this illness.
The empowering character of this progress is
a clear and bright light of new hope and promise moving at light speed in the right direction.
It is a privilege to be part of this revolution in neuroscience.
I believe that with more study volunteers
like my family and I, the complex puzzles and codes of mental illnesses will be mapped out and solved in our lifetimes.
They were all indicted as “schiziophrenigenic” 34 years ago, but when this illness
threatened to take me
away from them, they rose to the challenge and held out their hands to me in the moments that I otherwise would have drowned.
Six of them were younger than I was when
this illness swept out of hell, yet they have traveled this distance with me unafraid.
They have made my life richer, funnier, and filled to overflowing as a sister, an aunt and a friend.
Without them, it would have been a dark and difficult journey.
With them, we walked this 34 year road out of darkness into daybreak.