By the time I return, the Affordable Care Act (AKA ‘ObamaCare’) will have gone live.  I never paid much attention to the finer points.  I will probably never have to opt in, but would still like to be educated about the peaks and pitfalls. In the last

Barack Obama signing the Patient Protection and Affordable Care Act at the White House (Photo credit: Wikipedia)

two weeks there has been a spate of articles on the topic in mental-health-related publications, so now is as good a time as any to get the skinny.   A lot of noise is (again) being made in the right-wing media on the subject.  Since the GOP BS Machine has been known to spout incorrect rhetoric, I wanted my own answers.

For starters, I went directly to The White House.  Well, the blog, anyway.  There I found an entry by Kathleen Sebelius, the US Secretary of Health and Human Services, that was cross-posted from the HHS (Health and Human Services) blog.  While the majority of the April 10, 2013 entry talks to gun violence prevention, there is a paragraph that addresses the Affordable Care Act and mental illness coverage:

The President’s [2014] budget builds on the historic advances we have made to close the gaps that left too many Americans with behavioral health problems uninsured and underinsured. Beginning in 2014, the Affordable Care Act will provide access to quality health care that includes coverage for mental health and substance use disorder services. All new small group and individual private market plans will be required to cover mental health and substance use disorder services as part of the health care law’s Essential Health Benefits categories, and behavioral health benefits will be covered at parity with medical and surgical benefits. Also in 2014, insurers will no longer be able to deny anyone coverage because of a pre-existing behavioral health condition. The Affordable Care Act has already ensured that new health plans cover recommended preventive benefits without cost sharing, including depression screening for adults and adolescents and behavioral assessments for children.

Underline is mine, and a point that had nagged at me.  Both the GOP and some psychiatric publications have stated that under the Affordable Care Act, mental healthcare would not be covered by the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA).  They are wrong.  Thankfully.

As I continued to read, I delved further into more views of those in the crazy-biz.  Three themes kept emerging:

• Under the Affordable Care Act, mental health benefits will differ state to state.
• The American Psychiatric Association has already written a letter to The Department of Health and Human Services over concerns that states would judge network adequacy for psychiatrists included in QHP [qualified health plans] networks on the basis of the number of psychiatrists in a network, as opposed to the number of days it takes for a patient to get an appointment with a psychiatrist.”
• If your doc prescribes a drug that is not in ‘the formulary,’ patients are certainly free to file an appeal (much the way most insurance companies demand today) so it will be covered. “The HHS declined to order formularies in QHPs to adhere to the Medicare Part D requirement that all drugs in 6 “protected” categories be available. Those 6 include antidepressants and antipsychotics.”

Combine the info from the first and third bullet points, and the sum is that one state may offer access to 250 ‘covered’ drugs while another could offer over 700.

It is worth noting that those three points above are being broadcast by a constituency that has a lot of skin in the game.   And, nothing above is surprising, really.  Typical red tape you’d expect to come across when dealing with any insurance plan.  So, it’s understandable why mental healthcare workers aren’t enchanted with these things.

To be fair, I did visit a few right-wing/I Hate ObamaCare news sites and blogs as well.  While I was looking for info specifically related to opinions on the Affordable Care Act as it pertains to mental illness coverage, there was a pervasive undercurrent of a lack of understanding of how the US Federal Government works in general.  I state this not for any partisan reason, but to call out that I am suspect of the information I was able to uncover.  Basically, the takeaway from those sites I visited is that expanded mental health coverage under the Affordable Care Act will put a serious strain on mental healthcare providers, due to the approximately 60 million new patients who will become eligible for mental health treatment.  The CEO of behavioral health services for the Henry Ford Health System stated that the influx of new patients from the health law would strain the nation’s mental health workforce. “We now worry that we [will] have the providers and the delivery system to take care of them,”  I could find no mention of how those opposed to the Affordable Care Act would remedy this particular problem.

Finally, I visited NAMI (National Alliance on Mental Illness).  They provide a very useful FAQ and downloads to help those with mental illness navigate the coming changes the Affordable Care Act will bring.  One item I am particularly happy to see is a Policy Maker’s Toolkit.  For the laypeople among us, it’s a small glimpse into the considerations that need to be made when making mental health policy decisions.

Bottom line:   I was expecting to find at least some controversial ‘stuff’ when researching this topic.  Truthfully, I found nothing I didn’t already expect.  The worst thing that I can see from the amount of research I had the time to do is the Affordable Care Act does not set a nationwide, uniform standard for determining what kind of coverage benefits each level should include. That decision will be left to the states, a point of concern to some healthcare-advocacy groups.  Quite frankly, it is a concern of mine as well.

In the end, let’s not forget this is a fledgeling program, and like the 787, it’s going to need to work out the kinks so it can truly fly.  From a personal perspective, I am happy 60+ million Americans will finally have access to mental healthcare.

It’s about time.

http://abcnews.go.com/Health/man-psychosis-recalls-nevada-patient-dumping/story?id=19095175

James Brown, who has been diagnosed with psychosis, spent three days at Rawson-Neal Psychiatric Hospital, in Las Vegas, in February 2013. Depressed and thinking of suicide, Brown ended up there after problems at his group home.

But just three days after he was admitted, the doctors felt James was stable enough to go.

Then, Brown says the doctor asked him what state he wanted to go to.

“I said, ‘I don’t want to leave Nevada,’” Brown told ABC News. “He said, ‘California sounds like a really nice state. I think you’ll be happy there.’”

Although Brown had never been to Sacramento, he says he was told he would get better mental health care there. Brown was driven to a Greyhound bus station with a $306 one-way bus ticket, six Ensure nutrition shake bottles and just a three-day supply of psychiatric medications.

Brown’s discharge papers even listed his “address on discharge” as “Greyhound Bus Station to California.”

 

You’d never see Catherine Zeta-Jones treated this way.

This is nothing less than human trafficking.

Deplorable.

Mental illness and brain abnormalities are once again being described/equated with evil.

Sigh.

http://science.time.com/2013/05/03/evil-brain/

Researchers studying a group of college students found that certain types of depressive thinking can spread from close-living roommates like a lingering flu.

 

Although many people see depression as a chemical imbalance in the brain, scientists say social context and the way you see yourself and the world can be critical in causing and sustaining the illness, which affects around 10% of college-age adults.

Although this study was conducted with, “…108 incoming college freshmen at a private university in the Midwest, including 42 men with male roommates and 66 women with female roommates randomly assigned by the college,” I’ve seen this dynamic in action in a workplace that was comprised of adults, mostly over the age of 50, all threatened with an imminent, massive lay-off.  The article cites the Rumination prone personality type as being the more contagious rather than the Hopelessness brand, but I’ll argue any day that both are just as viral.

Read more at: http://healthland.time.com/2013/04/24/depressive-thinking-can-be-infectious/#ixzz2RTgdaLst

Cover of Strange Brew

I’m sure all of you Strange Brew fans know exactly what I’m talking about.  Yeah, my doctor is a Hoser.  Or, it’s actually my psychiatrist intern who is on the line.

Today was my first face-to-face with her after being released from the bin.  I knew she was going to be extremely nice and polite during our appointment.  During my last appointment with my NP, I had the distinct impression The Hoser was in big trouble for letting me get to a state where I had to be admitted.  Especially after my NP asked me in a very direct manner how I felt treatment with The Hoser was progressing and if I had any complaints.

Long story short – a 30 minute appointment turned into 45 because she tried to make coffee for herself twice but got completely sidetracked by the coffee pad for the Senseo, the ‘bloody’ computer system is so confusing she can’t figure out how many refills of what I have left, flipping through her agenda (twice!) for our next appointment resulted in the discovery this is April and not May, and we spent a full five minutes where she asked me how she should go about following up with my treatment.  (No, really.  What should I do??)

Maybe this is really 3B Treatment – three beers and it looks good.

So, yeah.  Today was almost a cluster.  Except for one thing.  The best part was when the appointment was over and I was walking down the hall, away from the mental health wing to the main hospital.  That’s when I decided she is a Hoser.  And I had to bite my tong very hard to keep from laughing out loud.  A woman walking away from the Looney Wing, laughing to herself, is never seen as OK.  And that last thought made me want to laugh even harder.

Hey, you gotta take those laughs wherever you can get ‘em, eh?

Time Health & Family ran an interesting piece this week.  It seems researchers have developed a new class of sleeping medication that, in rats and rhesus monkeys anyway, doesn’t leave users with the stupids when they awake in the morning.

The three well-known sleeping pills: diazepam (Valium), zolpidem (Ambien) and eszopiclone (Lunesta), work by slowing down brain activity.

Orexins, which are also known as hypocretins, are brain chemicals that promote wakefulness. Of the brain’s billions of neurons, only tens of thousands produce orexins. People with narcolepsy who have difficulty staying awake and are prone to suddenly falling asleep without warning are missing almost all of the neurons that produce these chemicals. DORA-22 [the new, promising sleep medication] and similar drugs work by blocking orexins by essentially producing a brief and reversible bout of narcolepsy.

But…buyer beware.

“…because the orexin-blockers don’t seem to loop in the pleasure centers of the brain as the existing sleep medications do, they could also have a side effect of prompted bad moods, says Siegel, although that’s not such a problem if it only lasts a few minutes before you fall asleep.

Hmmmm.  Those of us with existing mood disorders need to keep tabs on this as the FDA continues its investigation.

Read more about DORA-22 and Orexins here.

It would have been great if I’d taken the advice.

I spent a week cooling my jets in the hospital because I let things go a bit too far and entered a mixed episode.  Thankfully, a change in medication that was ordered the week before the hospitalization started to work while I was in The Bin. It shortened my stay and I am home now, and on the mend.

For those who aren’t familiar with mixed episodes, it’s where elements of both depression and mania are present at the same time.  The Vivien Brand of Mixed Episode inevitably involves depression with severe agitation.  That means instead of sitting in a corner crying, I am not sleeping, running around doing everything with a heavy hand, being overly agitated with the universe and everything in it  and crying.

Working through one of these mixed states is pretty hellish.  Depression meets adrenaline!  Filters be damned!  Everything is worthless and annoying! And nothing is sacred. Nothing.

I’ve agonized over how I should write about this experience. Do I satirize the whole ordeal, using my razor-sharp Mixed Episode Witt that had my husband and son laughing when they would visit me?  Do I describe the impatience and generally unkind Mixed Episode Agitated Thoughts I had toward my Club Mental Health cohorts?  Do I tally and publish the number of times I sat in my room and cried ’cause there’s no putting the brakes on Mixed Tears?

Well, no.  That’s the point  These damn mixed episodes are just so jam-packed full of emotion and mayhem that I really can’t compose a meaningful post within my self-imposed 1000-1200 word limit.

American Hotel, Amsterdam (Oh, the irony!)

But, I must say this.  For those keeping score, you will no doubt have noticed the hospitalization this past week took place in The Netherlands while my previous stay in 2010 took place in the US.  Both facilities were dedicated mental health hospitals for the not-so-insane.  The experience here in NL, however, was a night and day difference from what I experienced in the US.  Here, I wasn’t locked on a ward, I was given my own room and my shoelaces weren’t taken from me.  It was more along the lines of a hotel for crazy-ish people.  At no point did I feel my dignity was compromised or I wasn’t being respected as a person.  Maybe it was just the crap hospital I was admitted to in Kirkland, WA (Google away…) that handles their clientele inappropriately, but it’s been my overall experience mental health here is handled with much more dignity and grace and less stigma than I experienced across the pond.  So, in my next edition of ‘Round the World for the Mentally Ill, I will have to give The Netherlands accommodations more stars than those in The States.

I suppose when you are Bipolar I and didn’t treat the entire spectrum of the illness for over 20 years, extended periods of extreme stress are bound to put you in the hospital, if you don’t ask for help when it all starts to go bad.  OK, fine.  Lesson learned.

Mixed episodes, how I do not love thee.

With Mood Watch, users can track how they feel mentally, emotionally and physically by answering a short set of questions, tracking their sleep quality, blood pressure and meditation.

Next users are encouraged to rate their anxiety level, mood, level of calmness, focus/mindfulness and energy level three times a day — morning, noon and night.

Those who have specific details about their day that they’d like to record can add personal notes during each entry. Once all entries are complete, a report can be generated at the click of a button detailing all the information entered during the week. Reports created by Mood Watch can be printed out for personal reflection, or emailed to a physician or therapist for further discussion.

Mood Watch also offers users the ability to enter the names of the supplements or medications they are taking, and set alarms to go off throughout the day to help ensure they are following their regimen as planned or as directed by a physician.

This is probably the answer to my whining because it allows for several things – tracking multiple mood datapoints for a single day, tracking meds with dosages, tracking sleep hours and quality.  Bonus:  You can mail your doc a report, too.  And, all on the Android platform!  (i-devices are supported as well.)

For more information, see Bipolar I Patient Creates Mood Tracking App

I’ll post a review as soon as I’ve had a few weeks to test drive Mood Watch.

Nobody realizes that some people must expend tremendous energy to merely appear normal.
Vivien Brunning

My bipolar disorder is a closely guarded secret.  I believe with all of my heart that I would not have been able to accomplish the professional achievements or maintained the personal relationships I have were I to wear my mental illness along with my heart on my sleeve   While my mother and my grandmother always taught me to be kind to the ‘slow’ person we would sometimes stop and chat with while walking on Park Avenue, I will never forget the looks and laughter from the meanies as they passed us by.  This was a valuable lesson for a six-year-old child.  It’s OK to be ‘different.’  There are kind people who will be compassionate towards you.  But, then there are those who will not.    

Empty fuel gage (Photo credit: Janie B.)

Energy is a precious commodity when you are fighting with bipolar disorder.  Even when you’re not bipolar, keeping up a charade takes an enormous amount of energy.  When you live with mental illness and have made a conscious choice not to disclose your condition, the energy necessary to just  appear normal gets to be too much.  It takes a well orchestrated effort to not be forthcoming with friends, certain extended family members, employers, colleagues and, to some degree, even your own immediate family.  I think about this a lot.  The time, the energy, the orchestration necessary to make faux normalcy seem real. It’s exhausting.      

A lovely woman whose blog I follow published a very frank post. Soul Survivor gives us an account of what it’s like to be one of the Walking Wounded: Betrayal and Stigma.  If you haven’t already, please give it a read.  It eloquently describes what might happen when those of us with mental illness take that leap of faith and confide our condition in some people we thought we could trust.  Reading her post gave me pause and got me thinking: Which one of us may be in the worse position?  Which one of us has to expend more energy?  The one who is honest about their condition and bears rejection or the one who goes to great lengths to make sure they never have to?

Life has thrown my family and me a lot of curve balls in the recent past.  I am mentally fatigued.  I am physically exhausted.  I feel as if my façade of normalcy that was carefully constructed over the last two decades is cracking.  But a conscious choice to not disclose my condition means I can’t just yell to those in my immediate sphere, “Time out!  I’m bipolar, this is too much shit at once and I need to retreat and regroup!”  Not being able to do something sometimes uses up more energy that if you’d done anything at all.

The energy required to deal with mental illness is something I am sure every, single mentally ill person will tell you at times can be unbearable.  We have to constantly check in with ourselves to see how we are doing.  There’s medication, doctor appointments, counselor appointments, feelings of guilt and worthlessness over our disease or inability to fully participate in society, worries over funding our treatment, anxiety about how others perceive us, dealing with the fallout from mania, from depression, from letting ourselves slide too far if we don’t seek treatment the minute we start to feel bad.  This is by no means a complete list of energy sapping BS.  It’s just what my frazzled mind can come up with at this moment.

I’m still pondering Soul Survivor’s post.

Would my coming clean about being bipolar after all these years make things easier on myself?  Is it time to surrender?  Is it time to change the thing about my mental illness I spend the most energy on?  Perhaps my soul could feel a bit of peace if I could be honest when my friends ask how I’m feeling.  Maybe I would be less tired if I didn’t have to measure my words when describing what bouts of homesickness are really doing to me. Every once in a while I seriously consider surrender.  Every once in a while I would like to just come out of the mental health closet like my gay friends came out of theirs, and live a life of truth and relative happiness with who I am the way they do.

In my universe, disclosure of my illness puts a lot at stake. One particular circumstance could blow up in my face.  This issue has an expiration date so close I can almost taste it, but I refuse to tempt fate.  Patience, young Padawan.  Besides sanity, the biggest victim of mental illness is credibility. In order to retain any shred of professional credibility, my condition is best left in the shadows.  The vast majority of people in my industry would never take direction for the ‘serious’ stuff I work on if they knew it was coming from a bipolar.  A bipolar woman at that.  Sadly, gravity does not hold my universe together, lack of information does.

My Mom used to tell me that you can’t un-tell a secret.  As I sit here eating Xanax and typing, it’s becoming more and more obvious that still, even at this point in my life, preaching to the choir while high on benzos is still the best solution.  But, I’m finally in a position where I can whine about how tired of it all I am.  Progress.  Real progress.  Maybe I’ll consider The Closet Question again in another six months when things simmer down.  Right now, I’m off to answer a few e-mails and lie to a few friends in the US that I’m doing just fine.

Pills (white rabbit) (Photo credit: erix!)

Did you know that approximately half of all clinical trials conducted and completed are never published in academic journals and trials with positive results are twice as likely to be published as others?

And:

In 2007, a law was passed, saying all trials in the U.S. on currently available treatments must post their results to clinicaltrials.gov within a year of completion. Everyone rejoiced… claiming the problem was fixed. But nobody audited to see if the rules were followed, and in 2012 it was found that four out of five trials had ignored the law. Despite very poor compliance, no fine has ever been levied for failure to comply with this law.

[Underline is mine.]

If you’re a regular reader of my blog, you’ve already heard me talk on this topic.  I’m posting about this subject again because this past week, Dr. Ben Goldacre once again surfaced to promote his new book and remind the public that doctors really are prescribing blind.

If you’re still skeptical, consider this:

A doctor today who qualified in the 1970s is basically self taught with respect to almost all the medicines they prescribe. Medicine has changed entirely around them, through their career. We need to be better at future proofing medics, and teaching them how to find reliable sources of information. When you ask doctors “how do you know” which treatment is best, the answers are worryingly variable. “It’s what the doctor in the office next door told me” “I saw a drug rep” “I read one trial” etc. We need to develop better systems for disseminating evidence, as we currently rely on legacy systems such as journals and conferences, and also, worryingly, approaches not entirely dissimilar to oral traditions.   This means we carry on using things that aren’t so great, but also we’re slow to take up new treatments. Remember, the first social network theory paper, on diffusion of innovation, was done in the medical profession. It’s a real problem.

I’ve said it before and will say it again.  The, “I had a visit from a drug rep,” is something that especially concerns me.  When the physical evidence in the doctor’s office points to a recent visit from a rep hawking the drug-of-the-moment, i.e. an Abilify clock in the waiting room, yellow and blue umbrella by the door and a Bristol-Myers Squibb pen in hand as they write the prescription – it’s pretty certain I already know which drug I’m leaving with a ‘script for.  But, let’s not be so pessimistic for a moment.  “…marketing…can easily be ignored by any good doctor. When the evidence on what works is systematically distorted, when trial results are withheld, then nobody—not even the best doctor in the world—can truly know which treatment is best.”

Very true.  And to be fair, not all doctors are mesmerized by drug company swag. Dr Richard Lehman:

It is a scandal that doctors like myself often prescribe treatments without knowing their true benefits and harms, because research evidence from human trials has been withheld. That means that over my 35 years as a GP, I have unintentionally spent large sums of NHS [UK healthcare system] money on treatments that did not work, and some patients have suffered avoidable harm. We need immediate access to all the data relating to all the drugs and devices which we use on millions of people every day.

What your prescribing doctor needs is all of the applicable information.

Dr. Goodacre and several physician colleagues have founded a petition/initiative called AllTrials , aimed at mandating all drug trials past and present be registered, and the full methods and the results reported.  It calls on governments, regulators and research bodies to implement measures to achieve this goal.  If you’re intrigued, the Missing trials briefing note that is found on the AllTrials website is a good place to start.

The petition, although at the time I wrote this post had only 39,824 signatures, has an impressive list of organizational supporters.  This didn’t seem like much momentum to me, but then I stumbled across the commitment GSK made to supply the results of all their clinical trials. GlaxoSmithKline, let’s not forget, in late June 2012, was ordered to pay $3 billion in a fraud settlement for shenanigans such as, “…employing tactics aimed at promoting the use of the drug [Paxil] in children, including helping to publish a medical journal article that misreported data from a clinical trial.”  So, GSK signing on to participate in AllTrials should rebuild their image and make supporters of AllTrials happy, right?

Hold the Applause.  GSK doesn’t deserve any kudos just yet.  (After losing the last game to the tune of $3 billion, did you really think they were going to play fair in the first inning of AllTrials?)  But, they are playing.  They’re still in the game.  And that says something.

Yes, maybe this post is another self-indulgent rant, but things need to be change.  As an individual who has to take medication for the rest of their life to control their condition, it’s frightening to see how I am literally held hostage by Big Pharma’s antics.

Updated and Related:

A few hours after I hit Publish, I came upon this article from Time: How Our Web Searches Could Expose Drug Side Effects.  Self-report side effects sites have been around for a while, but a group of researchers at Stanford University School of Medicine and Microsoft Research are taking a different tact.  Why not look at the actual search habits of patients to determine what side effects, potential drug interactions, etc they are keying in on?  If doctors and patients aren’t getting all of the clinical trial information, doesn’t it then make sense to ask the actual guinea pigs what’s going on?  

References

Live Chat with Ben Goldacre: How Bad is the Pharma Industry – The Daily Beast, March 5, 2013, 11:00AM EST

AllTrials - An initiative/petition aimed at mandating all trials past and present  be registered, and the full methods and the results reported.  It calls on governments, regulators and research bodies to implement measures to achieve this goal.

Truth About Your Medicine: Ben Goldacre on How to Reform the Pharmaceutical Industry – The Daily Beast, March 4, 2013

Another Psychiatric Med Debacle: Glaxo Agrees to Pay $3 Billion in Fraud Settlement - Manic Muses, July 4, 2012

Promises of Transparency?  Hold the Applause – British Medical Journal, March 6, 2013

How Our Web Searches Could Expose Drug Side Effects - Time Magazine, March 7, 2013