My Mental Health Heroes of the Year - 2009

My true heroes in mental health are those whose efforts never come to our attention, yet change lives: A mother who battles indifferent clinicians and bureaucrats on behalf of her kid; a volunteer who arrives early to turn on lights and arrange chairs and greet visitors; a doctor who refuses to give up on a patient, a postgrad research assistant laboring tirelessly on peasant wages; a middle manager who sticks his neck out on a risky hire; a patient who falls down seven times and gets up eight ...

My choices here are confined to the public realm, and are restricted by my limited awareness - a fact which may have excluded worthy candidates but hardly diminishes the accomplishments of those cited here. Further, they all got started toiling in obscurity. Thus, even though I am singing praises to a select few, I urge you to think of this piece as a tribute to all our mental health heroes.

Without further ado ...

Public person hero of the year - Barack Obama. No question about it. This man has put it all on the line in support of the proposition that the government serves all the people and not just the privileged few. We may not get the health care reform we need, but thanks to the President’s heroic efforts it appears we will get a much better deal than the rotten one that insurance companies, death panel nutjobs, and various enemies of the people tell us we should shut up and be grateful for.

Internet hero of the year - Katherine Stone. Katherine’s blog Postpartum Progress is a must-read on a normal day. In May, she outdid herself with a Mother’s Day Rally for Moms' Mental Health, featuring an all-star line-up of “warrior mother” guest bloggers whose contributions cast a bright light on a dimly-lit area of mental illness.

Soon after, in July, Katherine publicly scolded the editors of Time Magazine “for allowing an article on a topic that they clearly knew so little about to be published,” then rallied fellow advocates and experts in a letter to Time. Of all things, in its Person of the Year issue, Time singled out Katherine’s letter as one of its “Letters of the Year” of 2009.

Research hero of the year - David Braff MD. Think of this as homage to all of those brilliant individuals who have dedicated their lives to figuring out new ways to improve ours. Earlier this year, Dr Braff of UCSD received the prestigious Warren Award from the International Congress of Schizophrenia Research. In his Award lecture, I heard Dr Braff discuss “endophenotype,” a field he has pioneered and which is revolutionizing psychiatric research.

Endophenotype allows researchers to investigate an outward feature (phenotype) such as psychosis by looking at underlying phenomena, such as the inability of the brain to filter out sensory stimuli. Today's thinking-outside-the-box translates into tomorrow's practical applications. As this blog says, "Knowledge is Necessity."

Advocate hero of the year- Kathi Stringer. The reason you have probably not heard of Kathi is that she is smart rather than loud. Loud is the unfortunate tendency of mental health advocacy and it has gotten us next to nowhere. For years, Kathi, who is based in Riverside, CA, has quietly championed quality improvement (QI). For years, hardly anyone listened. This year, people are listening.

Kathi comes from a machinist background, where things need to be done right. As an example, if aeronautics refused to apply QI, we would constantly have planes falling out of the sky. QI, which is well-known in every aspect of manufacturing and services, including health, is ignored in mental health. But, as Kathi explains, nearly all the standards we need to improve mental health services are already codified into law and in contracts. We just need smart advocates to act as vigilant watchdogs. Then change can happen, and happen fast.

This summer, at a NAMI CA conference, I heard Kathi lead a workshop on QI. You could have heard a pin drop.

Media hero of the year - “The Soloist.” The movie, based on Steve Lopez’ book of the same name, recounts the real-life relationship between journalist Lopez and homeless music prodigy Nathaniel Ayers. Unlike “Shine” and “A Beautiful Mind,” which end triumphantly on major chords, “The Soloist” concludes on an uneasy note. Rather than the hero-outsider making it in “our” world, we must come to terms with the outsider choosing to remain firmly planted in his. In doing so, we are forced to face our own fears and ignorance.

My guess is that as recently as a few years ago, even the most informed amongst us would not have been ready for this. The fact that the movie met with the success it has is a tribute to our ability to change.

Recovery hero of the year - Abraham Low Self-Help Systems (ALSHS). Recently, Recovery Inc changed its name to Recovery International, then merged with the Abraham Low Institute, which resulted in its present name. Recovery Inc was founded in 1937 by neuropsychiatrist Abraham Low (pictured here), who espoused the radical idea that - with the right cognitive skills and peer help - patients could recover from even severe mental illness. Some 600 self-help groups exist worldwide.

In its new incarnation, ALSHS is retooling to reach out to a wider audience. Stay tuned  ...

My profound appreciation to this year's heroes, both the ones mentioned here and all those who in their own ways are making our world a better place.

Figuring Out Schizophrenia - Part III

Yesterday was the last day of the International Congress on Schizophrenia Research, held in San Diego. A brief recap of my third day there:

Early morning: My brain has clearly not booted up, not even after two coffees. I sleepwalk into the main hall for a lecture on "The Hidden Life of Genes: Endophenotyping Schizophrenia," by David Braff of UCSD, the year's recipient of the Congress' prestigious William Warren Award (that's Dr Braff pictured).

I've already given you a major hint into endophenotype: Me, with bipolar, with major difficulty regulating my sleep, which seriously interferes with my ability to function. The general population also experiences sleep disorders, but clearly sleep is tied into my illness.

Thus, rather than look for illness-specific genetic needles in haystacks, it may be more constructive to seek out more common and obvious bio-markers (such as sleep) and work one's way upstream or downstream from there.

Dr Braff was writing about endophenotypes back in the seventies, but it is only within the last five years or so that the topic has really taken off. For instance, Dr Braff explains, patients with schizophrenia experience major problems in sensory gating, ie screening out irrelevant stimuli (such as a noisy ventilation system) which plays havoc with their ability to focus on relevant stimuli (such as a conversation).

What we are finding, according to Dr Braff, is a clustering of patients around various different endophenotypes (eye movement - saccades - involving reaction time is another). Thus, one drug is not going to fit all. The next generation of meds, he says, need to be far more specific.

Schizophrenia, Dr Braff concluds, is a malignant terrible disease that is not going to give up its secrets readily. Instead, we "have to conquer schizophrenia gene by gene, step by step."

Late morning: "Optimizing Cognitive Training Approaches in Schizphrenia," reads the title to this two-hour symposium. Translation: The brain is plastic. As Michael Merzenich of UCLA describes it, "Basically, we create ourselves."

The brain is born stupid, then evolves and becomes "massively optimized to fit into your world."

In recognition of this, a relatively new field is opening up that involves drilling patients in cognitive tasks we tend to take for granted, such as holding a thought in our working memory long enough to lay down new neural roadwork or responding to stimuli in a timely fashion.

New computer programs are being developed and being tested on patients, Sophia Vinogradov of UCSF explains, and we are seeing enduring changes in the cognitive performance of patients six months later.

Afternoon: Today's poster presentation has a treatment theme, and here there is a clear disconnect from the rest of the conference and earlier poster presentations. Pharma is out in force, with products based on 50s technology. An example:

I stop at a J&J poster testing Invega on a schizo-affective population. No surprise, the antipsychotic knocks out the psychosis. Invega is son of Risperdal, which in turn is a descendant of Haldol.

See what I'm driving at? The emphasis of current schizophrenia research is on cognition and the underlying biology. Psychosis is what gets patients in trouble, but difficulties thinking is what keeps them from winning back their lives. Pharma has nothing in its current inventory for this, but they're still in a state of denial pretending that they are still relevant. (Think Detroit, only not nearly as smart.)

So here is J&J, pitching a med with roots in the 1950s, with a study designed for no other purpose than to milk its current patent. I ask some of the other researchers about this and get a lot of nodding heads and knowing looks.

If only these researchers were running Pharma, I can only think. The good news: Everywhere, Pharma is clearly losing both its influence and credibility. The bad news: In another year or two, we are going to know J&J as makers of baby powder and other fine consumer products. Same with the other drug companies.

Where, then, are the new smart meds going to come from?

Much more in future blog posts ...