Thursday, October 28, 2010

Mental Illness -- Stigma or Sexy?


Full confession time.  You may have noticed that I respect copyright.  I use images in the public domain or with permission, and don't use pictures where permission has been denied.  Which sometimes is a real bite.  The Des Moines Register...

I don't have permission for this one yet.  I ripped it from a site where you can purchase bracelets to support nkm2.org.  So I urge you to help me atone for my sins, while I write for permission.  Go to this link and buy one.  They have those cute little loony birds on them.  And you know how I love loony!

nmk2.org is Joey (Pants) Pantaliano's bid to make mental illness as cool and as sexy as erectile dysfunction.

Really.



Okay, it hasn't gone viral yet.   But Harrison Ford with one earring is kinda sexy.  It's a start.

Joey has major depressive disorder and wants us all to come out of that closet.  Hence, "No kidding? Me, too!

Like, that clergy continuing education day on depression, when my small group didn't do the discussion questions.   Instead, we compared meds.

So Joey has these bracelets, (go buy one) starting at $25 in your choice of 144 combinations of colors, frames and metal finishes, along with a twelve page catalog to help you choose more medallions.  Up to five will fit on your bracelet.  No kidding.

Joey, we have to talk. -- I'll get back to that.

The point is to tell the world that you or somebody you love is nutso, so deal with it.  Shades of "We're here. We're queer.  Get used to it."   Only nicer.



As cool and as sexy as erectile dysfunction.  Seriously.

Stigma Persists

Well, we have a way to go.  The American Journal of Psychiatry published a study on September 15 that traced changes in perceptions of mental illness and substance abuse from 1996 to 2006.  Major public education campaigns have indeed educated the public.  In ten years there were huge increases in the numbers of people who understand that mental illness and substance abuse have genetic and neurobiological causes and should be treated medically, preferably by a psychiatrist.  Stigma -- those numbers have not budged one inch.  Prejudice has not changed at all.  Not even among those who go with the neurological approach.  In some ways, it is worse.

Which doesn't really surprise me.

There are two versions of these public education campaigns.  One comes from the pharmaceutical industry.  You know, those gray tones of the woman who ignores her kids and won't even walk the dog, then the introduction of the powerful pill, followed by the transformation into Mother of the Year.   Or that one where she's skipping on the beach, gazing lovingly into the eyes of her beloved.

Impose that narrative on your depressed coworker.  Message: So what's wrong with you?

Then there are those oh-so-sincere celebrity stories.  My sister has a mental illness.  But I really love her.  So please be nice to her, because she needs all the help she can get.



Okay, but you wouldn't want to marry one, would you?  Buy stock in a company whose CEO has a mental illness?

I think we are going about this all wrong.  Here is a message that has not reached the general public.  (It hasn't even reached some of our doctors.)

Mental Health Continuum


Some people have heart attacks.  Their hearts are not built differently than other hearts.  They are on one edge of the continuum of heart health.


Some people have a mental illness.  We do not have a different kind of brain.  None of our experiences are qualitatively different from the experiences of people who do not have a mental illness.  We all are on a continuum of human brain health.  It's just that some of us are at the farther edge of the continuum.


The undiagnosed (and many who are diagnosed) are scared of that edge.  Kind of like how sailors used to be scared that, if they sailed too far west, they would fall off.



But unlike unhealthy hearts, our end of the continuum gives us strengths, as well as weaknesses.  Otherwise, so many of the truly creative people in every field of human endeavor would not have a mental illness. -- A concept to be explored in a later post.

Cool and sexy?  At the very least, valuable.  I do think Joey is onto something.  He just needs to get the right team together.

The Mentally Interesting Have Something To Offer

Why don't we make this an exercise in Appreciative Inquiry?  Here is what I mean.

Don't let the Aspies design the bracelets.  They will overwhelm us with 144 options and a twelve page catalog.  But we need them to think outside the neurotypical box, so we don't miss the genius solution.  On the other hand, give that bracelet design to bipolar II's.  We can sell anything.  But we need the (recovering) alcoholics to call us on our bullshit.

See where I am going with this?  I have some ideas.  But I don't know everything.  I need your help.

You know your diagnosis, along with the strengths it gives you and the potholes you need to watch out for.  Send me your ideas, and we'll write another blog post together.

Let's give Joey a hand.  We all need all the help we can get. And we can give it, too.

Illustration of human heart by Patrick J. Lynch, 
used through Creative Commons Attribution 2.5 License 2006
Photo of human brain by Gaeton Lee, 
Columbia in a Squall by George Davidson, the ship's artist, 1793
Cartoon of Goschen and Ritchie, Champion Weight Lifters
from St Stephens Review Presentation Cartoon 14 April 1888
and in the publis domain

Thursday, October 21, 2010

It Gets Better

I was going to get funny this week.  But this won't wait.

The message below took place at a city council meeting in the center of Iowa.  It means all the more to me, because I live in Iowa, and because I know this small city in a rural and conservative part of the middle of America -- a fly-over state.

Oops -- a reader corrected my confusion.  Joel Burns is a councilman in Fort Worth, Texas.  Maybe that makes the story even more significant.

Joel Burns, elected to that city council, has lived long enough for it to get better.



Educators who want to respond to his challenge can find resources at the Teaching Tolerance arm of the Southern Poverty Law Center.


Their new documentary and classroom resource, Bullied includes lesson plans and is available for free to any school that requests it.


I also want to plug their quarterly magazine, Teaching Tolerance.  It gives teachers specific ideas and lesson plans for K-12 on many diversity issues.  Subscriptions are available for free to any teacher who requests it, any donor, and also online.

Bullying Has To Become A Crime

I have never understood why schools are law-free zones, why students who beat up other students are not prosecuted for assault, why teachers and administrators who do nothing are not prosecuted for accessory after the fact.

It Is Time To Prevent Bullying

I also have never understood why society places the burden of violence on its victims.  We know the names of recent victims who could no longer bear that burden.  We develop therapies to repair damage that is done to other victims.  But as with PTSD, we treat after the fact.  We do not prevent.

All the bullied teenagers who died recently have been "outed."  But we do not know the names of the bullies.  We do not work on fixing them.

Children who are cruel grow up to be adults who are cruel and raise children who are cruel.  I repeat Joel Burns' challenge to stop the violence.  That is when we will stop the suicides.

We also do not know the names of the witnesses, those who remain silent.  All that it takes for evil to triumph is for good men to do nothing -- Edmund Burke.  These students, too, must find their voices.  We all must.

Meanwhile, If You Need Help Now:

In the U. S., call 1-800-273-TALK (8255)
Press 1 for English, 2 for Spanish.
Click here to find a hotline outside the United States.



Use of the SPLC and Teaching Tolerance logos does not imply
that they have endorsed the views expressed in this post. 

Thursday, October 14, 2010

Weighing Costs and Benefits Part IV: Costs

Some people quit taking meds that their doctors believe will relieve their symptoms of mental illness.  Why?

Because the meds don't work, because they can't afford them, because the meds make them sick.

Manifesto:

For any of these reasons, people who quit are making intelligent decisions in their own best interests.

On The Other Hand 

Sometimes the meds do work.  Sometimes people have decent health insurance with good drug coverage.  Sometimes the side effects are not as bad as the disease.  In that case, those who quit their meds are stupid.

Let's just get that right out front.

Moving On To The Costs

Today my series on weighing costs and benefits turns to the costs.  The costs do not tell you whether you should try a medication.  They simply give you the odds.  It is up to you to decide how you want to play the odds.  I calculate the odds based on the numbers of those who quit.  Those who consume have the best information about costs, what actually happens when they put these chemicals in their own particular test tubes.

How Many Of Us Are Noncompliant?

Out of 100 prescriptions that providers write, 10 consumers never consume.  They don't show up at the pharmacy at all.

28 consumers quit within the first month.  That includes those first 10.

50 quit within 60 days.

72 are outta there at six months, 78 within the year.

That leaves 22 compliant consumers.

How Do Noncompliant Consumers Explain Their Decision?

10 out of the 78 don't.  Providers failed to close the sale.  Providers would be interested to know why these 10 are pharmacy no shows, because it might help them improve their pitch.  Their assumptions are that it was because the consumers didn't understand, or the providers didn't establish trust, or that good old back up -- stigma.  But often, consumers don't report their decision.

We could invent reasons, which might be fun, top ten list, that sort of thing.  The drinking buddy said, Buck it up.  Real men don't get depressed.  The transmission fell out of the car on the way to the drug store.  My favorite -- the primary care physician said, Are you kidding?  With your blood glucose and lipid levels?  Does this so-called doctor even own a blood pressure cuff?  However, all this speculation is just that.  These 10 do not give us information about the costs of taking the medication, because they never take it.

So now we have 68 consumers who quit after they tried the meds.  AK Ashton et. al. actually asked them why.

30 (out of the 90 who actually filled the prescription) say they quit because they could not tolerate the side effects.

30 say the medication was not effective.

That already adds up to 70 nonconsumers, counting the nonstarters and leaving eight who quit for other reasons.  I will suggest some of these other reasons, and you will have to come up with the odds yourself that any of them might put you among these 8.  (They may have reasons similar to the 10 who never started.)

And by the way, these numbers vary by how many different medications the consumer has already consumed, which primarily affects the efficacy number.  They also vary by which medication is currently being considered, primarily effecting the side effect number.

We don't have all the numbers we need.  Somebody needs to be collecting this data.  A consumer group, looking at real world data over the course of a year, not the guys with 6-8 weeks of information, seeking FDA permission and doctors' cooperation to sell pills.  But the algorithm itself will work for whatever the numbers turn out to be. 

Let's Start With Side Effects

30 of the 68 who consumed and quit say they quit because of side effects.  The clinical trials, lasting eight weeks or so, report much lower numbers.  The numbers the providers give you are from the clinical trials.

The common belief among providers is that they could improve compliance by giving consumers more information up front about side effects.  Small isolated studies sometimes confirm this over the short haul.  But this belief does not stand up to more research and more time.

Up front discussion of side effects can give the consumer strategies for dealing with insomnia, reducing nausea, preventing falls when they get out of bed.  These are the side effects we notice immediately.  Maybe they are tolerable if you have social supports to get you through the roughest first weeks.  Sometimes your body does  acclimate, and the immediate side effects become less bothersome.

But sometimes these strategies don't work.  Social supports wear out.  Mom has to go home and stop helping you with the kids.  You run out of sick leave.  The body does not adjust.  And sometimes these side effects are indications that you are taking the wrong medication!

But the major side effects appear later.  Which are the most bothersome?  The results: weight gain (31%), erectile dysfunction (25%), failure to reach orgasm (24%) and fatigue (21%).

Weight gain -- a few pounds in the first few months are not a problem.  You hardly notice.  But over the months, when you are moving from overweight to obese, you get a reality check on what this medication really costs.  Morbid obesity takes 8-10 years off your life.

Tell that to your psychiatrist when you complain and he/she says you have to weigh your costs and benefits.  Your doctor may not even know about how serious the health risks of obesity are.  Obesity even increases the risk of dementia.  But psychiatrists treat psychological problems with pharmacology.  They do not treat your heart, pancreas or liver.

Then there are the sexual side effects.  When you started the medication, you weren't getting much anyway.  That was one of the symptoms -- loss of interest in formerly pleasurable activities.  But six months later when you're not getting any, you (and your partner) recalculate your costs and benefits.

Hence, these noncompliance numbers go up over time.

Side Effects In The Algorithm

The major competition between makers of psychotropic medications has always been on this side effect issue.  It turns out, we just won't keep taking stuff that makes us feel worse.  So sometimes you can find studies that pit one against the other and get real numbers about side effects.

STAR*D found that in just 8 weeks, a combo of lithium/sertraline (Zoloft) got an intolerable rate of 45%, 2-5 times any other treatment.  Effectiveness rate -- 9%.  I wonder how many of the 91% who didn't get better would have been better off if they had taken nothing at all.

Or to put a finer point on it, did lithium/sertraline make matters worse?  They didn't test against placebo, so we don't know.

If the odds of harm are five times the odds of help, I will give it a pass.  That is like rolling the dice, looking for one particular number.  Only it's not dice; it is my body.  That is my personal decision, made after my eighth trial.  It is up to you how you play the odds.

For the sake of the algorithm, SE means the odds that you will quit taking this medication within a year because of side effects.

Efficacy -- What If It Just Doesn't Work?

We already discussed effectiveness in detail on September 2, Weighing Costs and Benefits Part II: Benefits.  Go back there for the details.  It makes more sense if you know the back story.  In summary:

Efficacy for Number of Present Trial (E#PT) means how many people got better with this med after they tried a number of others that didn't work.  Non-Spontaneous Recovery Rate (NSR) means how many people would not have gotten better if they had simply waited for the depression to go away on its own.  Efficacy for Number of Present Trial times Non-Spontaneous Recovery Rate equals Short Term Benefit (STB).  Those are the odds that it will work.

Or, E#PT X NSR = STB.

The abbreviations are there to make me look smart.  Which, as a matter of fact, I am.  Some days, I can make the smart parts of my brain connect  again and actually work smart.

Another way of looking at it: STB is a number between 1 and 100.  That many times out of a 100 are the odds that you have come up a winner.

So then the odds that the medication will not work are 100 minus Short Term Benefit.  We will call that Not Effective (NE)100 - STB = NE.  You have wasted your time, and are more discouraged than ever.  Bummer.

Now you may have noticed, the algorithm calculates the Short Term Benefit for eight to twelve weeks.  And the Short Term Cost refers to one year.  Why the difference?  Because you will likely be one of the early quitters (50%) if you don't get relief by twelve weeks.  And if you do get relief by then, you are likely to keep taking the medication for a year.  It may quit working for you eventually.  But you are probably good to go for a year.  Hence, twelve weeks for STB and twelve months for STC are probably equivalent measures.

Efficacy -- What About Those Who Quit Before They Gave The Medication An Adequate Trial?

I did not consider how many reported that they discontinued because the medication was ineffective, the 30 out of 90 that Ashton, et al, discovered in their survey.  This number is not helpful, because some of these 30 quit before the full 60 days needed to determine efficacy.

Instead, I used the efficacy numbers reported from the clinical trials.  As a result, those 8% discussed below is a larger group.  It would include the early quitters, because some of them might have gotten better if they had been more patient.

But these numbers are for illustration purposes only.  The algorithm is designed to be general, so that you can insert whatever the numbers turn out to be.

If you quit simply because the medication does not work faster than it works, and for no other reason, then you go into the stupid category.  Just to get that right out front.

Other Costs

8% (plus) quit taking the medication primarily for other reasons.  I expect that money, stigma and trust are the the big ones, with stupid in there, too, as stated above.

Money

Let's face it.  These medications cost money.  There are two costs to consider.  The first is the pills themselves.  The provider may provide you with samples, if yours is the newest wonder drug being promoted this week.  The samples likely last for two or three weeks.  This is good, if it helps you determine early on that there is no way you can tolerate the medication, even long enough for some of the side effects to become less troublesome.

On the other hand, it does not help you determine whether the medication will be effective.  That takes more time and your own money, a lot of it, if yours is the newest wonder drug being promoted this week, which you can count on, if you have failed to prove your provider a genius by getting better with his/her first or second choice.

If you have a good drug benefit, cost of medication may not be a major issue.  I now get my generics for free.  I represent a very, very small portion of the U.S. population.

I used to have insurance with a high deductible and mediocre drug benefits.  After the samples ran out, I paid $120 for a two month supply from a company that required I buy from them by mail order.  By the time the pills arrived, I had already discovered I couldn't tolerate the med.  I never even opened their bottle.  Meanwhile, I had to pay through the nose at my local pharmacy for the two weeks it took me to taper off.

In addition to the medications, you will pay for medical management, trips to the provider who will monitor your condition and tweak the chemistry experiment.

Again, these costs will vary by insurance plans and whether you have insurance at all.  With my current insurance, I pay $5/visit.  In my previous plan, I paid $40.  If I had no insurance at all, the cost would be $135.  And I see my doc every six weeks on average.

I cannot assign a number to the odds that you will quit a medication because of how much money it will cost you.  That is your call. Out of 100, what are the odds that you will quit because you cannot afford it?  We will call that $$$ in the algorithm.

Stigma

Okay, if you have made it this far through the Costs and Benefits series, you ought to be motivated enough to resist those who shame you (including yourself) for relying on a pill, for being weak, for being sick... whatever garbage they throw at you and you throw at yourself.  Please let's get over it.  I hope your stigma number is low.  But again, that is your call.  Out of 100, what are the odds you will quit for reasons of stigma? -- STG.

Trust

Next, out of 100, what are the odds that you will quit because you cannot find a provider you trust with your body, or because you think the pharmaceutical industry is corrupt? -- TR.

Stupid

Stupid is a side note.  Providers prescribe the medication because they already believe that the benefits outweigh the costs.  So they expect the stupid category is a large proportion of the noncompliers.   Only they call it confused.

Stupid is irrelevant to the algorithm, which is designed to weigh costs and benefits.  So stupid (or confused) is not in there.  Like stigma, stupid can be fixed.  But it is not a cost.  It is a prior condition.

Down And Dirty Costs

So now we simply add the odds of each of these costs together:

Side Effects plus Not Effective plus Money plus Stigma plus Trust (lack thereof) equals Short Term Costs.

SE + NE + $$$ + STG + TR = STC.

So How Do You Decide?

STC versus STB give you the odds.  Once more I repeat, they do not give you your decision.

We will look at a couple other issues and pull this all together in our next installment.  Whew.  My brain is about to explode.

Flair from Facebook
Clipart from Microsoft
Photo of die by Roland Scheichder, in the  public domain
Photo "Solution" by Salvatore Vuono
Photo "Angry Father" by Akapl616.  Permission is granted to copy
under the terms of the GNU Free Documentation License
Photo of "Tired Man" by graur codrin
Photo "Aces" by Felixco, Inc.
Photo "Loneliness" by graur razvan ionut 
Photo of Pristiq by Tom Varco.  Permission is granted to copy
under the terms of the GNU Free Documentation License
Mademoiselle Zizi Feints at Fainting, by John Sloan

Thursday, October 7, 2010

Mental Illness Awareness Week -- One Year Later

A year ago, Prozac Monologues was just crawling, six months old.  I was new to this disability experience.  And NAMI Johnson County was new to me.

I am not sure how Della McGrath decided I was literate.  Maybe I had given her my card, and she read some of the blog.  But she asked me to speak at a candlelight vigil, to remember those who have died from mental illness, give courage to those who hope to survive it, and support to those whose loved ones did not.

The great thing about NAMI -- if able is always part of the contract.  So I could say yes, even when we were using sedation in place of hospitalization.  And hope for the best.

As it turns out, God gave me a window, and I was able to say what is written below.  It is reposted from October 3, 2009.  It is a bit out of date.  Once I was on disability, I could explore and admit to a better diagnosis, bipolar II, in place of major depressive disorder.  Bipolar is a disease with more stigma than vanilla depression.  And hardly anybody has ever heard about bipolar II, so they think the worst.  But now that I wasn't working, stigma didn't matter so much.  And I could let myself take the best bipolar II medication.  I knew its side effects would make my job impossible.  But that didn't matter anymore, either.

The year since has not been an easy one.  But I am still here.  And so, amazingly enough, is Prozac Monologues.  You, dear readers, give me a life that begins to replace the life I lost to this illness. 

It often takes a couple weeks to get the brain booted up and online to get a post written.  Hence, this week's repeat -- new, at least, to new readers.

So this is what I said that night

Hello, my name is Willa and I have a mental illness.  Hello, I am the Reverend Willa Marie Goodfellow, an ordained minister, an Episcopal priest who has served congregations, campus ministries, and diocesan staff in Iowa for 27 years.  And I have a mental illness.

Risk of Suicide

I have major depressive disorder.   The mortality rate of breast cancer is 23%.  The mortality rate of congestive heart failure is 50%.  My disease has a mortality rate of 15%.  [Bipolar II's number is 20%.]  Of course, if you are dead, your mortality rate is 100%.   If you are alive, 100% is your survival rate.

There are factors that increase my particular risk of death, how long I have had this disease, the number of episodes, the severity, the anxiety features.

There are factors that decrease my risk.   Having strong relationships within a truth-telling community through my church is one of them.   A couple weeks ago I returned to a congregation I served in the past, and told them that I am going on disability because my depression has not responded to medication.

I knew what would happen.  I knew there would be tears.  I knew that at the back of the church, while shaking hands, somebody would tell me that he has a mental illness, too.  A woman told me that it took thirty-five years for her husband to find a med that finally seems to be working.  At coffee hour, somebody else told me about his mother’s antidepressants.

Below the surface, I also knew that because they love me, they would love others with mental illness in their midst.  Perfect love casts out fear.  Stigma falls.  And this particular congregation would grow deeper into its identity, as a signpost of the kingdom of God.

We are not alone.

When I feel crazy because I cannot see this disease, I cannot show you the broken bone, I still know that I am not the only one.  I can call on friends who know exactly what this is.

A Good Funeral 

Once I did a funeral for a recovering addict.   Well, it was one part funeral, three parts Narcotics Anonymous meeting.   After I welcomed everybody, “Hello, my name is Willa and I am a sinner,” and said some prayers, then other people told their own stories of struggle and recovery and struggle and recovery.

I will never forget what the convener of the NA group said, “We are celebrating tonight.  We won this one.  Don died clean and sober.”  And ever after I have hoped that somebody would stand up at my funeral and say,

“We won this one.  Willa died... of natural causes.”

A Good Life

To that end, I am going to live with this disease the way Don lived with his.  Openly -- I have a mental illness.  Actively -- I will answer ignorance with education.  Politically-- I will meet discrimination with change.  And in community -- I will support and be supported by others who share this illness with me, so that we can survive it together.

photo of candles by Nevit Dilmen, permission granted to copy
under the terms of the GNU Free Documentation License
photo of cake (and cake) my own, you may copy with my credit