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Penny Smart, Pound Foolish: Stopping funding for Mental Illness Medication November 28, 2010

Posted by Crazy Mermaid in Health Insurance and Mental Illness, Healthcare, Medication, mental illness.
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Today I went to the pharmacy to pick up my 30 day supply of prescriptions for my mental illness.  My prescriptions consists of Geodon, Lamictal and a few other drugs. My total bill for 30 days of medication was $1057 per month. Multiplying that out by the number of months in a year, I spend $12,684 for a year’s supply of medication.

Then there’s the psychiatrist visit. If – and this is a big if- I don’t have any major emergencies like hearing voices, I can get by with seeing him about every 4 weeks or so.  That’s about $250 a month.  Then there’s my therapist.  She runs $125 an hour. I see her twice a month. $250 (it used to be weekly until the bill got too expensive).   Between my therapist and my psychiatrist, I spend another $500 a month for their services.  Don’t get me wrong: they’re worth their weight in gold.

The grand total for a year of care is $18,684.  With a price tag like this, it’s easy to see why medication for mental illness is an easy target for a Legislature turning over every rock trying to find ways to cut their budget. But doing so would be penny-wise and pound-foolish.

People who are used to having their prescription drugs paid for by Medicaid, will no longer be eligible for those drugs if these budget cuts go into effect. So what will the net result of this change be?

A significant portion of people with severe mental illness are on disability. Surviving on less than $12,000 per month, they will no longer be able to afford their medications or therapy. Heck, they would have to spend more than what they make in a year on medication if their subsidies went away. Impossible.  They will have to go without.

What does that mean for society as a whole?  It means that we will have a significant percentage of the severely mentally ill off their medications.  Although having the State pay for drugs for the mentally ill appears to be for the benefit of the person with the mental illness, in fact this is a matter of public safety.

Unlike someone who needs medication to thin their blood, a person with a severe mental illness won’t die if the drug coverage is discontinued. They won’t bleed to death or go into a coma without the drugs. So it’s attractive to the cash-strapped Legislature to cut out prescription drug coverage for the mentally ill from their budget. At a cost of thousands of dollars per person, it seems a logical way to save money.

But I hope the Legislature wakes up to this fact before it’s too late: mentally ill people need their medication for public safety reasons. If they’re disabled, they won’t be able to afford their medication without subsidies from the Government. They’re essentially unemployable because of their debilitating illness. They have no reserve of funds, living on the edge of poverty because of their disability.  Without Government interference, there’s simply no room in their meager budget for medication.

The Legislature needs to understand that the medication for the mentally ill is needed as much as or perhaps even more than someone who takes drugs to thin their blood.  If the guy needing blood thinners goes off his medication, there’s a good chance that he will suffer severe symptoms, including the possibility of his death. That isn’t the public’s and the Legislature’s perception of drugs for mental illnesses.

In fact, the un-medicated mentally ill are going to be much more expensive than the medicated mentally ill. Take me, for example. Without my medication, I would be in my own world, disconnected from my family and friends, lost in my own mind. I would once again be that mermaid, disrobing in public.  Trees would talk to me. I would once again believe I had ESP. But the main problem is that without my medication I would become a danger to society.  Believing that zombies are after me, or that I’m being held hostage or numerous violent scenarios will cause me to strike out at whoever tries to subdue me.

Imagine what the world would be like if suddenly all the people with severe mental illnesses- bad enough to be on disability- went off their medication at the same time.  What if the people on antipsychotics stopped taking them after their “free” supply ran out?  All of those psychotic people concentrated in Washington State won’t go quietly off their meds. They need those drugs to prevent their return to a psychotic state.

Washington State has the fewest hospital beds per capita in the Nation, so it’s not like we’ll have any room for the mentally ill in the mental hospitals. If they can get in, mental hospitals cost around $3,000 per day. But  before they go there, they’ll pass through the doors of a “real” hospital- likely the understaffed, overcrowded, cash-strapped emergency room. Think of it: a person in a psychotic state in a room full of sick people.

If they commit a crime, which many are likely to do, they will swamp the legal system and the jails. Police taking on the task of dealing with this situation will short-change other areas of their responsibility.  If you think medication is expensive, think about how expensive incarceration is. The last figure I remember reading is about $50,000 per year.

And what about the mentally ill people who injure others? A paranoid schizophrenic without medication will not be a pretty sight. Won’t those injured “sane” people and their loved ones appreciate what a good job the Legislature did by saving all that money?

I hope that the legislature comes to its senses before cutting those drug benefits.  I hope they recognize it for what it would be: a public health crisis.


Driving and Mental Illness November 22, 2010

Posted by Crazy Mermaid in Medication, Mental Hospital, mental illness.
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When I first began driving, I was a teenage girl living in Kihei, Maui, Hawaii. My dad was Project Manager for a mid-sized construction company named Red-Samm/General, a joint venture between two fairly large construction companies.  He was in charge of putting together a seven mile long sewer line through downtown Kihei.  In fact, I tell my friends that if they’re staying in Kihei and flush the toilet, they can thank my dad.

In those days, my dad came home from an extremely stressful job and started  “driving school for Kathy”. Things were different in those days.  There was no Driver’s Ed on Maui.

After working late, he drank a few beers and then threw me the car keys, saying “Let’s go”.  I climbed behind the wheel of a manual four wheel drive Jeep pickup truck, and he climbed in the passenger seat. As I learned where the gas and more to the point brakes were on that manual transmission, he sat in the passenger seat, holding on for dear life.  Anyone who has ever sat in that passenger seat can tell you it’s no picnic.  Around the Island we drove (it’s a 50 mile trip around the whole thing), driving on two lane roads out in the country lanes.

As I got older, I learned to drive other vehicles, eventually even owning a few of my own. Like my father, I taught my two boys how to drive (with the help of Driver’s Ed).  I became comfortable (and so did they) in my role as Driver Instructor.

During my career as both an owner of a mid-sized commercial general contracting firm and project manager of commercial buildings, I learned to operate heavy construction equipment, including (bull) dozers, backhoes, dump trucks, and skidders (used for logging operations).  My dad, also a project engineer but for sitework subcontractors until we went into business together, taught me how to operate all of these and more.

If there was any driving to do, I did it. I never let anyone drive if I could help it.

All that changed when I entered Fairfax Mental Hospital.

The initial dose of Lithium (900 mg) knocked me on my ass. I had major coordination problems, including doing what my husband calls the “lithium shuffle” up and down the locked down hallways of the psychiatric ward – where those of us who were involuntarily committed were housed.  I lost my sense of coordination, developed the typical side effects of massive doses of lithium, and lost my desire to drive anywhere.

As the Lithium gave way to Geodon and subsequently ,when Geodon failed to work, Risperdol, I continued to be uncomfortable driving.  In fact, when I got behind the wheel of the car on those rare occasions when I absolutely had to, I had trouble telling how far I was from the car in front of me. I couldn’t tell where the end of the car began.  I had trouble finding the gas and more importantly the brakes.  When I had to go to the local hospital where my gynecologist’s office is, I hit the gas instead of the break when I parked the car. It scared me so badly that I refused to drive myself anywhere for quite some time.

The Risperdol made things better as far as my coordination went, but still I avoided driving at all costs unless I absolutely had to. I felt much safer with someone else being behind the wheel.  I had neither the focus nor physical coordination to drive and I knew it.

Recently, with the switch from Risperdol to Geodon, I finally, two and a half years after my hospitalization, began to feel that I could actually be comfortable driving.  Yesterday, I am proud to say, I volunteered to drive my husband and I to the local Home Depot.  It was the first time in 2 ½ years that he had been in the passenger seat with me.

Everyone around me has been very patient with me, giving me the emotional support I needed to get to this stage.  But I am learning the joys of driving again, albeit slowly and cautiously.  It feels good.

NAMI (National Alliance on Mental Illness) November 12, 2010

Posted by Crazy Mermaid in mental illness.

I saw an interesting bumper sticker this weekend. It said “You don’t see a Harley parked in front of a psychiatrist’s office”.  That pretty much sums up mental illness.  That Harley rider sneaks in the back door of the psychiatrist’s office, scared to death that someone might recognize him.  He’s there, all right, but doesn’t want anyone to know it. The only other place we see this type of behavior is in a shop selling sex toys.  Or National Enquirer.  Nobody claims to read it, yet it is a thriving publication. Go figure. Oh, and then there are NAMI members like me.

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations.  Why is that?

Because of the shame and stigma associated with mental illness, some- or many- of us are hard-pressed to publicly identify ourselves as members of the “mentally ill” club. Take me, for example. At our last NAMI Convention in August, I purchased a NAMI bumper sticker.  It took me three months to work up the courage to put it on my bumper.

What’s NAMI? It is the National Alliance on Mental Illness. It is an alliance of people touched by mental illness in some capacity.  Those with the illness, their family members, their loved ones, their neighbors and anyone they may come in contact with. In order to belong to NAMI you don’t have to publicly say you belong to NAMI.

Okay, so now you have the picture.  Let’s explore one of the side effects of not acknowledging membership in NAMI or even joining.

Started in the mid-1970’s by parents of schizophrenics, the organization has grown from its original intent to include all mental illnesses in its circle.  Yet I’m willing to bet that most of you readers have never heard of it.  Why is that?

Unlike any organization that I’m aware of, the people involved in NAMI face special challenges that other similar organizations don’t.  Those special challenges make it very difficult to finance and run the organization.

Imagine running Susan Komen’s Breast Cancer awareness organization, but without the help of either the person with breast cancer or her family.  Imagine her family being too afraid to acknowledge the disease, much less actively participate in the organization in some meaningful manner. People touched by mental illness don’t want to acknowledge that. Or they aren’t in a place that they can. Many members learn of NAMI when they’re in crisis mode, fortunately able to take advantage of the benefits of NAMI but unfortunately unable to participate in funding the organization.

All of NAMI’s services are free.  You don’t have to pay to be a member of NAMI or take advantage of their programs. But after the crisis blows over, the stigma of mental illness prohibits many people from belonging to NAMI or from publicly acknowledging their membership.

We do the best that we can with what we have.  And we don’t have much.  Having neither the broad experience of the business world (and access to money) nor (in a surprisingly few number of cases) the downright stability of mind, the volunteers do what they can with what they are presented.  But there is a big problem.  NAMI has very little money and very few people who are willing to not only fund the organization but to even acknowledge that they are or could be involved with it.

The grants NAMI receives prohibit, for the most part, use of those grant funds to perform the day-to-day operation of running the organization.  Try getting a volunteer with the right credentials to do that job for free.  As my dad says, you get what you pay for.  If you can’t pay anything, you don’t get much.  I am by no means disparaging the organization. However expecting volunteers who are experienced enough and patient enough to do the thankless job of continually trying to scratch the earth for funding is not reasonable. Yet with the lack of funding it is necessary.

Many NAMI members are mentally ill, surviving on $12,000 (or less) per year.  Therefore, NAMI membership is free to them.  It’s only $35 for the rest of us.  So getting a vast source of revenue via membership is closed to us.

When I talk about programs, I mean the “signature” programs such as the one I participate in, which is the “In Our Own Voice” program.  At no cost to the organization requesting the program, two mentally ill people come in and give a presentation on what it’s like to have a mental illness to whoever is willing to listen.

I have looked the homeless in the eye.  They are human, with the same rights as the rest of us, but their mental illness prevents them from exercising those rights.  Exposing the public to the face of homelessness is one of the side benefits provided- at no charge- by NAMI.  But running these programs costs.

Ron Artest and Mental Illness November 4, 2010

Posted by Crazy Mermaid in mental illness.

I realize that Ron Artest, the champion-winning basketball player, might not be everyone’s cup of tea.  Known for his violent outbursts on the court, he’s not exactly idolized by many basketball fans. Written off as a lunatic during most of his career, nobody really knew how true that was except him and his eight psychiatrists though the years. But in his latest nationally televised interview right after winning the NBA 2010 Championship, he did two remarkable things.

The firs amazing thing he did was to publicly thank his psychiatrist, Dr. Santhi Periasamy , during his post-game interview on national t.v., crediting her with helping Artest get his head straightened out enough to allow him to focus on the game rather than the symptoms of his illness.  See his interview at http://www.nesn.com/2010/10/ron-artest-to-go-through-with-promise-raffling-off-championship-ring-for-mental-health-charities.html

Although Artest hasn’t been diagnosed with a particular mental illness, I suspect he has Bipolar Disorder based on the type of very public outbursts he has had through the years. Showing up for an interview in his boxers, showing up for practice in his bathrobe, and applying for a job at Circuit City so he could get a discount are only a few of the kookier things that Artest did.  What matters isn’t what disorder he has. What matters is that he went out in public and advertised the fact that he is mentally ill.

Putting his reputation at stake, Artest put his money where his mouth is in giving voice to his fear that a public admission of his illness puts him at risk for severe stigma. His admission makes it okay for others to seek help for their problems.

The second surprising thing he did had to do with his championship ring.  After his team’s championship of the NBA 2010 Finals, he declared that he is putting his ring up for public auction. He said he ordered a smaller ring than the size he wears so that he wasn’t tempted to wear the ring. He said the ring will never be worn by him. Instead, he is raffling the ring off, donating the proceeds to mental health organizations like NAMI (National Alliance of Mental Illness).

Raffle tickets are $2 each. The terms of purchase are that everyone buying a ticket must purchase at least five tickets each.

Taking place on Christmas day 2010 when the Lakers are scheduled to play the Miami Heat, the raffle will focus nationwide attention on the plight of those with a mental illness. We can come out of our dark closet just a little and be acknowledged as real people with a legitimate illness, rather than freaks.

His bravery is very much appreciated by all of us who are ashamed of our illness. Having him champion our cause means a lot to those of us suffering a similar plight. Having a celebrity of his magnitude riveting the nation’s attention on mental illness will make life easier for the rest of us.  With his bravery, some of us will also step out of the shadows, declaring our mental illness and showing those people around us who don’t know about our illness that people can live with their illness without disrupting society.  They’ll learn that those of us with very severe forms of mental illness can manage our symptoms well enough to go undetected. That we’re really not Hannibal Lecter incarnate. That we’re not going to sneak up on you and try to kill you.   They will learn that their friends, neighbors and co-workers and even professional basketball players all are represented in the group of people suffering from mental illness. Thank you, Ron Artest.