Monday, June 20, 2011

Blue Moon Musings

I wrote this at the end of 2007 for my Newsletter, then republished it on mcmanweb. Today, I happened to reread it, and actually liked what I read. So without further ado ...

Every once in a blue moon, I feel I need to get a thing or two out of my system. I don't expect anything to happen, but I feel better already:

Letter to Psychiatrists

You saved my life and continue to inform it, and for all that and a lot more I am extremely grateful. But I have a simple question or two for you:

You are all MDs. So why did it take you so long to wake up to the fact that some of the meds you prescribe actually make a lot of us a lot worse, and may in fact kill some of us? The CATIE studies from a couple of years back should have come as no surprise to you. Essentially the same facts for years have been clearly labeled on the very meds you prescribe. And the extended version of these warnings has long been available in the psychiatric journals you subscribe to, together with long-term studies that show drop-out rates ranging from 60 to 100 percent.

In other words, in some studies (including one of the test meds in the CATIE trials), no one actually finishes the study.

Your patients, needless to say, have been telling you all this since the beginning of time. When they complain to you about feeling like fat stupid zombie eunuchs on the meds you prescribe, they are not doing this to ruin your day.

Bear with me.

Check out your waiting room. See the one who looks like Heidi Klum? That's the pharm rep. So who would you rather be talking to, Heidi Klum or a patient? Me, too, and therein lies the problem.

Take another look in your waiting room. See the Russell Crowe look-alike? Say no more. You may think that you are above Heidi and Russell's blandishments. The drug companies have billions of dollars invested in the proposition that you are not.

Consider: You are talking to a patient who definitely does not look like a Victoria's Secret model, thanks in large part to the meds you put her on. And she's telling you a story that completely contradicts the sales pitch you heard from the Heidi Klum look-alike.

“My psychiatrist doesn’t listen to me,” is by far the most common complaint I hear from patients.

A modest proposal: Inform the pharm reps through your receptionist to leave their samples and literature at the door. Your office and your waiting room are for patients and their loved ones.

Letter to the Pharmaceutical Industry

Thank you for slowing down my brain. It used to run away from me and make me lose control, but thanks to you I now have a life. But I have a few simple questions for you:

You employ some of the smartest people in the world. So why haven't you developed some smart meds? The ones you market for our illness are extremely blunt instruments, at best. All of them are the result of serendipitous discovery. Virtually all of them are based on meds that were introduced during the fifties.

Is it too much to ask you to come up with, say, some smart dopamine meds? It seems you were all so busy putting your energy into serotonin me-too drugs that you forgot all about the neurotransmitter next door.

Yes, you are making billions off of the dopamine-enhancers and dopamine-blockers you have in stock, but now your patents are running out and there’s nothing in the immediate pipeline. You oversold all of us on new-generation antipsychotics. When all is said and done, there is very little new about these drugs. In the final analysis, they're basically Thorazine with the tires rotated.

Another point: Stop acting as if one size fits all. I know that getting an FDA approval to treat big demographics illnesses such as depression is a license to print money, but that approval is based upon 50 percent of patients getting 50 percent better, which a lot of us don't find terribly acceptable. It would be much more helpful if you were to break depression down into component parts. Say a depression which featured lack of motivation and loss of energy, and another depression that involved agitation, and so on. My guess is if you adopted this strategy you could come up with something that would get 80 percent of patients 80 percent better across a vast range of niches.

And if people actually started feeling better on their meds they might turn out to be compliant. So, even in a niche, you could push through a lot of volume and make your shareholders more than happy.

I'm not through: I'm strongly getting the impression you guys are like the auto industry. Same old engines, new fins. In case you haven't noticed, Detroit probably won’t be around ten years from now.

You are the only industry that doesn’t talk to its customers, the end users of your products, and it shows. You certainly haven't sent any Heidi Klum look-alikes to my door.

Letter to Therapists

The coming-of-age of the short-term talking therapies, such as cognitive-behavioral therapy (CBT), has been one of the most encouraging developments in mental health. CBT helped move me out of my eternal rut, and for that I am extremely grateful, but I do have a gentle reminder for you:

What makes these therapies work is you, not the manual you are working from. You have one shot in getting the therapeutic relationship off to a good start, and if you mess it up you can forget about a second appointment.

A sure relationship-killer is your attitude that we need to be doing what is best for us. No one likes to be treated like a child, least of all you, so stop referring to us as difficult or noncompliant when we sensibly rebel against your authority. Yes, I know we need a good swift kick in the pants, but you need to figure out a way to deliver that kick so we end up thanking you for it.

Letter to Complementary Practitioners and the Recovery Movement

The heavy lifting in my recovery these days derives from sound principles (such as good nutrition and managing stress) that I should have learned from the MDs charged with treating me, but instead learned from you. So thank you for practicing good medicine. I know that you know that you are operating in an unregulated field where quacks abound and prey on our desperation and vulnerabilities, so I will merely raise a minor semantic quibble:

Please stop talking about the "medical model" and the "recovery model" as if they are two distinct and mutually antagonistic entities. For nearly all of us, recovery is a nonstarter without a proper diagnosis and treatment with meds. If you need to make distinctions, try going with "stabilization" and "recovery" in the context of a progression from one to the other.

We don’t want to give patients the false impression that they don’t need psychiatrists. Otherwise, we will create a whole new class of individuals faced with having to recover from the recovery movement.

Letter to Antipsychiatrists

We badly need a thorn in the side of the establishment, but you guys are way too far out of touch with reality to qualify. First, despite what you may wish to believe, the brain is not undifferentiated tofu. There is a biological component to mental illness, and - this just in - Hippocrates is describing mood swings.

Not only that, you don’t have to be voting age to have a mental illness. Kids are quite capable of having bipolar, for instance, and the compassionate response is to treat them, even with antipsychotics if necessary, rather than turn your back on them.

Earth to antipsychiatry movement: If you continue to deny that mental illness exists and other nonsense, the government is likely to interpret that as permission to cut funding for research and treatment and services.

Oops! I forgot. You believe that research and treatment and services is a big pharma plot to enslave the population. Never mind.

Letter to Mental Health Advocates

I love what you do, but let's face it - we are where the AIDS/HIV movement was in 1982 and where polio was in the 1920s and I see little sign of change.

History lesson: Once the gay community got out denial and stopped squabbling amongst themselves, they lined up the media and Hollywood and succeeded in getting the government and the medical community and pharmaceutical companies interested and involved. This may be over-simplified. "And the Band Played On" by Randy Shilts will give you all the nuances.

The numbers tell the story: For every dollar the NIH spends on AIDS/HIV per patient, we get one penny for mood disorders.

We have a long way to go.

Letter to the APA's DSM-5 Task Force

Whatever you come up with, please be sure it reflects my reality and the reality of people I am constantly talking to. In order to do that, you either need to be talking to me or the people I talk to.

I know you talk to a lot of patients in your practices and in your research, but basically you are either seeing us at our worst or inside the confines of a doctor-patient or researcher-subject relationship.

You really don’t know us.

If you want real patient involvement on your project, you need to get to know us as well as the Heidi's and Russell's who drop by your office and take you out to fancy restaurants. So why don’t we do a happy meal together sometime? My treat.

Update, Jan 14, 2011, three years later: Oh, sorry. Was I supposed to call you?

Letter to Researchers

Please do not leave the field. I know how discouraging it must be for you, these days. Several years ago, at a NAMI gala fundraiser in October, I heard A John Rush MD of the University of Texas at Dallas talk about how difficult it was for researchers these days to get their funding requests approved. I think I heard him say that only one in 20 grant proposals came back with a “yes.” In the old days, he said, it was more like one in four or five.

I can only assume that the odds are stacked a lot higher against you if you are viewed as some kind of outsider.

You are the smart people in a culture that celebrates dumb. You’re being marginalized to the same economic fringe inhabited by artists and musicians, but even musicians unfamiliar with the concept of intonation are regarded as cool. What is your reward?

A researcher forced to find employment elsewhere, in my opinion, is the equivalent of the burning of the Library of Alexandria and the Sacking of Rome. It is a crime against civilization.

On this Website and elsewhere, I draw attention to your contibutions to knowledge. In this piece, I choose to honor you for the studies you may never get to do.

Letter to the President

We are your constituents. You may not know that, as we don't vote. Okay, I do, but with the same degree of enthusiasm as I have for going to the dentist. So you are not exactly motivated to learn about us. Interest groups representing people who actually vote are deservedly more worthy of your time, but if I can cut in for just a second ...

Current mental health policy works like this: It is cheaper to lock us up in jails and prisons than treat us in hospitals, which is why there are way more of us in the criminal justice system than in hospitals.

But this is false economy. It is far more economical to spend money on services to turn us into taxpayers (and voters) than it is to keep us cycling in and out of cages and emergency services at taxpayer expense. Talk to your accountant if you don't believe me.

Whatever you do, don't talk to your economic advisers. They are caught up in the zero-sum game of line items. They will tell you that to raise funding for mental health services, we will have to cut funding for other services. Take my word for it, had Alexander Hamilton displayed a similar lack of genius, the only thing George Washington would have been presiding over would have been the country’s inevitable going out of business sale.

And a brief word on homeland security. Security is not just about the war on terrorism or the war on crime. How secure do you think we feel knowing we are one episode away from the possibility of losing everything? For that matter, how safe is anyone in this country with the healthcare system we’ve got?

Letter to Politicians and Administrators

I moved to California in late 2006, and there I encountered a strange phenomenon: Thanks to a voter initiative involving a special tax on millionaires, the state had billions earmarked for mental health transformation, but they haven't figured out how to spend it. In fact, they don't have a clue. Seriously, if the situation was not so potentially tragic, you could call it a comedy of errors.

An innovations committee (love the oxymoron) spent two or so years putting together a paper that boiled down to eight or ten ways to stop innovation.

Meanwhile, vital mental health services are being cut.

What this tells me is lack of funding is not our worst problem. Systemic incompetence and hubris is. There is probably no way of resolving this except for early retirement for this generation of senior administrators. This is probably true in every state.

A modest proposal: In California, anyway, use the special funding to underwrite early retirement for the people in charge. The sooner they go, the better.

Letter to Loved Ones

I may have bipolar, but you're the ones who suffer from it. So I'll keep this short and sweet: Thank you, thank you, thank you.

Letter to Patients

Since I am one of you, think of this as a memo to self:

We have every reason to feel disenfranchised and angry, but unless we drop our victim mindsets we we are not going to move our lives forward. It is one thing to let off steam. It is another to allow our grievances to immobilize us or excuse us.

The biggest obstacle standing in the way of our recovery is us. For some reason I can’t find an answer for, we get "stuck." I see it all the time. We hover on the cusp of recovery, unable to break through. Meanwhile, we alienate the very people who love us and treat us and work with us.

Maybe it's the fear factor. Bringing change into our lives, even for the better, can be extremely frightening. By contrast, being stuck in "stuck" can be comforting.

In May 2007, I heard Nobel Laureate John Nash at the American Psychiatric Association's annual meeting. John Nash is the Princeton mathematician of "A Beautiful Mind" fame. He was introduced to a rousing standing ovation, then proceeded to read a densely-worded manuscript that he held up to his face.

It is safe to say that ten seconds into his delivery the entire audience was tuned out. Then he began to say something that made my ears perk up. He said, in essence, that his recovery started when he began to receive recognition for the work he long thought his efforts entitled him to.

In other words, John Nash became unstuck. Something inside his brain shifted. Whatever stood in his way no longer held him back. He may have received his Nobel Prize, but he achieved something far more significant: He won back his life.

Letter to All

Thanks for bearing with me ...


Anonymous said...

Bravo!! I LOVE this. One can only hope that someone(s) is/are listening.

Addy Bell said...

Preach it! I'd never thought about mental health funding compared to AIDS/HIV funding before. How weird that in such a puritanically repressed culture we were able to mobilize around a sexually transmitted disease, and yet mental illness remains in the closet. Food for thought.