I have long been a non-fan of Chomsky, the Left's favorite sage. And it's because of shit like this. Let's see, back in the 1970s, he had nice things to say about hopw Pol Pot was running Cambodia, and now he's saying once again that the masacre at Srebernica in 1995 had fewer deaths than it actually did (about 10,000). This guy is a fucknut. It's time to left repudiated him.
Those of you who know me, know what's up. Here it is for the rest of you--all 3 of you! Last week, my paper's parent company--the Village Voice Media Co.--was taken over by another alt-weekly company called New Times. My future employment is likely in doubt. I've fought back for 10 years to get from unemployable bipolar to well-employed bipolar. Now, that's at risk--and it's been kind of hard to focus on other things. I'll resume regular posting in a day or so, when I clear my mind a bit more. Thanks for listening and reading.
Last weekend, I referred to a few studies that have popped-up on the use of Seroquel in bipolars. It was a study sponsored by the makers of Seroquel, AstraZeneca. AZ is one of the largest pharma companies in the world. Of late, they have been on a real marketing blitz with Seroquel. There's a story in that and a history lesson.
The drug was first developed and marketed for schizophrenia. Patients with that disease had pretty good responses to the compound, as they did with other atypicals. We're not talking complete symptom remission there so much as we are talking about be able to control the nasty aspects of schizophrenia--it can knock down the wildness and raging quite well, as well as hallucinations and paranoia--without the unacceptable side effects of what docs politely call movement disorders (ie, zombieism) that are part and parcel of treatment with older "conventional" antipsychotics. Atypicals have different side-effects, as I've noted throughout this blog. But they are a bit easier for patients to bear in the short-term. (I think docs are only now starting to wake up to these newer side effects. But I'll write about that in another post.)
Then, docs began to use atypicals casually to go after the manic end of bipolar disorder. The APs were not yet licensed by the FDA to be used that way--we're talking 1999 and 2000 here--but docs were getting a wee bit desperate for ways to address mania. Previously, bipolar had largely been treated with a combination of a mood stabilizer (most commonly, Lithium, Depakote--valproate/valproic acid in its recently available generic forms--and Lamictal and other anti-convulsants) and an anti-depressant (you know the names of these!). These meds can be pretty damn useful in long-term management of bipolar, especially the mood stabilizers. Anti-depressants are a somewhat dicier proposition, as is well-known by bipolars and depressives the world over. (After all, why would Wellbutrin's maker run television ads bluntly touting that anti-d's decreased sexual side effects if there weren't serious issues in other anti-ds?)
But many bipolars have problems with mania, in its extreme and mellower forms, despite taking 2500 mgs. of Deapkote a day. How many bipolars were having such problems? Hard to say. No one I've run into in the research world will hazard a guess. It must be a fairly large subset of bipolars, however, because as docs began to prescribe atypicals to bipolars in 2000, 2001 and 2002, sales of atypicals exploded. The companies and the meds had already hit their sales ceiling of about $4 billion in the schizophrenic market. Once docs began to see robust responses to atypicals such as Zyprexa, Risperdal and, then, Seroquel in patients, the word got around the psych community that if you had a bipolar whose mania was breaking through more conventional therapy, then give these atypicals a whirl. Apparently, there was, and is, a lot of whirling going on. In 2004, sales of atypicals hit $9 billion.
By then, most of the atypicals had been licensed by the FDA for use in acute mania. Pharma companies made their case to the FDA by sponsoring short-term--typically 8 to 12 week--studies of bipolars with acute mania taking atypical X versus placebo. The studies were performed academic clinical settings by various psych researchers. Clinical studies typically involve the following demographic, according to NIMH documents I've reviewed: males and females aged 30 to 45 without substance abuse problems or other underlying health concerns (ie, cardio-respiratory, etc.). Typically, study subjects are white. (cf., NIMH's "Strategic Plan for Mood Disorders," in which the top dogs at our primary research agency bitched at length about the lack of diversity in study subjects--an extremely apt bitch.) Suffice to say, that clinical academic settings barely approximate the real world. Such settings are great for basic efficacy trials. As of now, there are NO studies of long-term, much less medium-term, use of APs in bipolars. Nonetheless, these short-term studies and the anecdotal experience of docs in private practice--and multiple visits from friendly phrama sales reps!!--drove the rapid acceptance of APs in bipolars.
The first long-term study of the use of atypicals in schizophrenics came out in September. It's called the CATIE study. It wasn't a resounding victory for anyone, especially the patients. I have posted on this elsewhere in this blog. The second round of results from this study will be published in March 2006. I can't wait.
Just how applicable is the experience of schizophrenics to bipolars? In recent weeks, researchers and advocates I have spoken with have chided me for even asking whether the evidence from CATIE means anything for bipolars because the evidence pointing to bpers have a similarly rough go with the APs is anecdotal. While I understand their objection in a scientific sense (you can't do confidence-interval stats in an anecdotal world), I think they ignore the experience of patients in the real world at their, and their patients', peril.
After all, atypicals target the same receptor in the brains of bpers as they do with schizophrenics--ie, the dopamine receptor. The APs are the same molecules in bpers as they are in schizophrenics. The meds operate in the same human physiology. They are chasing the same basic behavioral issues. All of these are facts.
For anyone to claim that there isn't a pretty strong correlation between experiences--especially the physical side effects ones--of schizophrenics and bipolars on these meds is stupid. I don't argue that there is a 1:1 correlation, but I'll bet my life savings on it being about .8:1, or 80 percent. Besides, asking patients to take APs for long-term maintenance--as opposed to the short term wonderland of clinical studies--without having the long-term studies to back up that approach is flat out arrogant and disrespects the rights and valid experiences of patients in the real world. As far as I know, we are the ones paying the freight around here.
Such a mindset among clinical researchers also evades the basic fact that atypicals--all of them!!!!--now carry a BLACK BOX on their labels. Meaning: Use with caution. Can cause elevated sugar levels and so on.
So why am I popping off on this basic theme again? Because, as I mentioned at the top, this study came out showing that Seroquel can be used to treat what's known as bipolar depression. That's, of course, the bad dark end of bipolar disorder. Lots of patients have a tough go with that--I have--and a lot of bipolars have a tough time sticking with anti-ds. Anti-ds aren't exactly seamless--as noted above--and truly work for 50 percent or fewer of the people who take them. And so the AP makers are trying to get their products FDA-approved or treating bipolar depression. That way, they can loose their sales reps on psych docs to claim that "Hey, you can use this med for the depressive end of bipolar disorder, too!"
Depending on whose numbers you believe, there are anywhere from 2.3 million to 8 million bipolars in America (I'll discuss these numbers another day). I've never found an estimate of how much a slice of the psych meds market we are, but I wouldn't be shocked if we were about one-third. So of course pharma companies want to market to us!
AstraZeneca put out a raft of press releases on that paper, trumpeting the results. It was recently picked up by a television news broadcast in Austin, Texas, and likely by other stations as well. Please read the web copy to see what you think of that. The limited point I'll make about broadcast news picking up the story--no matter how small the coverage--is that it's only presented in terms of bipolars need meds and meds only. At $400 a month. They never discuss side effects or what it's like taking these meds long-term. That's unfair to viewers and psych patients. (I'll take up the media and psych meds as a long post some other day.) I am officially pooped--and it's sunny out.
According to results from a study, major depression affects 5 percent of Americans each year and 13 percent at any point in their lifetime. That's an increase from the long-accepted 10 percent figure of lifetime depression. Put another way, instead of 30 million Americans having depression, 39 million do. In particular, the NIH-sponsored survey found that depression affects women twice as much as men, confirmation of long-accepted numbers. The survey also found greater risk for depression between Americans aged 45 to 64 years. Baby boomers, in other words. I've doubted these kind of surveys in the past. They always show an increased prevalence of disease X, and are commonly funded by government agencies, public health groups and Pharma companies, all of which are in excellent positions to make money by waving the "It's worse than we thought" flag. That doesn't mean the numbers are false. It means I am skeptical. The survey also draws conclusions on alcohol and nicotine use, findings I'll speak to later.
I have said this before elsewhere, so I might as well say it here: using the word consumer to describe the mentally ill is stupid. My understanding is that the term popped up a couple of decades ago in response to public mental health patients who felt belittled by social workers who referred to them as clients. I'm not sure why that would be an oppressive term, but people do find oppression in the oddest places. Whatever the case, I find the term consumer to be evasive and non-descriptive. Are we fighting for our rights to shop at Wal-Mart? Hell, let's be honest: We are patients, mental health patients, and there is nothing wrong or oppressive about the term patient. So let's drop the politically-correct b.s. and get on with life, shall we?
A couple of years ago, I hit the wall with psych meds when I had a very bad reaction--racing heart, massive kidney output--to Lexapro and Risperdal. After that, I fired my doc, got a new one, and have worked to take as few meds as I can justify getting away with. It's worked fairly well since then--or at least things have been no worse than they were before.
Now, I've been watching a friend of mine go through a very nasty reaction to Seroquel, which said friend has been taking for two years. The friend is on 800 mgs., plus some other meds, and last night the friend started having tremors, was seeing spots, lost all sense of where she was and puked all over the place. What's more, the friend couldn't get the doc to respond to the situation. Hopefully, my friend will fire the doc involved, who kept loading my friend up on more and more meds even when they weren't working well.
I mention this because my friend's experience isn't that unusual. A good 50 percent of us have problems with meds, have docs who think the solution is more meds at higher doses, and still we have problems. I've about had it with this approach--especially given that psych meds work about 50 percent of the time, cost us hundreds of dollars a month and come with a host of nasty side effects.
I am really feeling cheated by the whole psychopharmacology revolution--and I know that I am far from alone in my feeling. The question is what can we do to make this situation better. Stopping meds outright is never a workable answer--we all know what happens there. Taking more meds doesn't seem to work so well in the long-term either. But no matter how many of us out here are good kids and take our meds and do the best we can with what we've got, it just doesn't seem to improve the situation.
So what can we do to level the playing field a bit? We can demand that pharma companies radically cut the prices on their not-so-wonderful meds. We can demand that they speed better ones to market. We can demand that policymakers and docs stop basing their pronouncements and findings on patients in the public mental health system--typically, the most worst-off patients and the most common research and training subjects--and start paying attention to how things work for the 75 percent or so of all patients who aren't in the public system. We can demand a voice and a seat at the table. We can demand answers.
I think it is about time the pharma companies sat down with us patients and--for a change--actually listened to us. Things aren't so good out here--and they need a good dose of the truth. So do policymakers. So if anyone at NMHA, DBSA and NAMI is listening, could you guys help us make this little summit happen?
Yesterday I noted research pointing to a genetic deletion on chromosome 22 as playing a role in the development and/or risk of schizophrenia. I cannot rundown a copy of the journal article, but here's a good description of the findings from NIMH. I guess we'll see what this means in 10 to 15 years or so.
Is anyone surprised by this? Prescriptions for anti-depressants are way down--as much as 25 percent--among kids, following revelations that some anti-ds caused suicidal ideation, if not suicide, in teens and other youngsters. We'll see if there's any connection with suicide rates as soon as the 2003 figures come out from the feds. The black box warnings were issued in 2004, but concerns about the meds were widely circulated in 2003.
Of course, this begs the whole question of whether prescriptions have gone down among adults and whether these same meds have led to suicidality in adults. The media and regulators always lavish attention on teens when it comes to mental illness--a dynamic I've never understood--but my guess is that the black box warnings have given a lot of adults pause. My own personal survey of one reveals that Prozac made me suicidal as hell. I stopped taking anti-ds in 1995, began taking them again in 2000 (Wellbutrin), switched to Lexapro in late 2002 and stopped taking it in 2003. Both Wellbutrin and Lexapro proved ineffective in buffering me against all depression, so what would my incentive be to continue taking them? More to come.
A reader commented, inquiring about others' experiences with Seroquel. I'm glad that Seroquel has helped her with her episodes. (Her comment is linked at the bottom of that post.)
I, too, am interested in hearing from as many of you as possible on your experience with this and other atypicals, no matter your diagnosis.
For me, Seroquel was largely effective with episodes (but far from perfect), especially when I was first taking it, but then the heavy head in the morning and the weight gain got to be more than I could handle. Plus, the med's positive effects had pooped out by then. I was on it, usually at a teensy 25 mgs. a day, for about 18 months.
Besides experiences with side effects and efficacy, I'd like to hear from others on how they handle the cost of paying for atypicals. Fairly typical doses of these drugs can run $300 to $600 a month. Do atypicals work well enough for you that they justify the cost? Does insurance pay or do you pay out-of-pocket? Comments, please.
In a just-released study in Nature Neuroscience, researchers report that they have found a genetic defect in children that could lead to schizophrenia. One-third of 24 children who had what's called a "deletion" (missing DNA, in essence) on Chromosome 22 will develop schizophrenia. Like other science journals, Nature Neuroscience is a pinhead about releasing studies free to the public, even though we underwrite the research. Here's a link to a news account.
Some people will assume this is the harbinger to a cure. It's not. It's a scientific finding, based on a limited patient population, that will need to be replicated by other scientists before schizophrenics can even begin to dream of gene therapy and the like. Then researchers will have to figure out how to replace this missing code in children and adults with the mutation--and, then, they have to pull off the neat trick of getting it into the brain cells. That's a 10 to 15 year job, assuming this study proves out. Remember that the gene that causes cystic fibrosis was discovered in 1988. Researchers, to date, have been unable to find a way to deliver a corrected copy of that gene to cells in the lung.
I'm not trying to beat down anyone's hope, here. I'm just trying to be honest about how long a process science can be. In the meantime, we've got what we've got--and we want something else.
A reader commented earlier that the fate of geriatric psych patients is very discouraging. Often, they end up in state mental hospitals. Some have mental illness--and have been ravaged by it for most of their life. Others have dementia and are simply too out of it for most nursing homes to deal with. There are 54,000 patients in state hospitals in America. I don't have a breakdown of how many of those are geriatric cases. Based upon my limited experience looking at state hospital statistics, I'd put their number at 10 to 20 percent, or about 5,000 to 10,000.
I once spent about 20 minutes in the geriatric ward at Western State Hospital here in Washington State. (I was the first reporter allowed to tour the wards in over a decade, the staff told me.) There were all these sweet-looking old people steering about the large day room in specialized wheelchairs. Out the windows, they could see cyclone fencing topped with barbed wire. Some kind heart had attached a few pots of daisies to the fence.
What bothered me deeply about the fact that were there and I was able to walk out the door whenever I pleased was that the business seemed horribly mean. The best we can do for these people is a soft prison? They can be combative, sure. But there's no reason properly equipped nursing homes cannot handle them and offer them a more humane environment. It could also be done at about half the present cost of keeping them in a state hospital. The trouble in Washington State is that nursing homes are almost all privately-owned and the state cannot compel them--at least that's what the state says!--to accept these patients. I'm not so sure that the state is right on that point, but if it is, then perhaps the state ought to build some of these specialized nursing homes and give these poor souls a measure of dignity in the final years of their lives. Other states should do the same thing.
So, in addition to a bunch of posts, this weekend I added some upgrades to the site. Ok, I hope they are upgrades. I added recent comments on the lower left sidebar, which I hope makes things more interactive for readers/commenters. I also added links to several long articles I wrote on mental illness for Seattle Weekly. I edited some other site functions and moved the search box down lower on the left sidebar. All through the magic of html and Movable Type. I'm turning into a geek!?
Is there other functionality you'd like to see? Let me know.
Once a fairly regular crew of commenters emerges, I'll create what's known as a sideblog. It functions much like the diaries you see on more schmancy sites like Daily Kos. That way readers of this site can start their own threads on topics of their own choosing and cut my sorry ass out of the mix. Does the sideblog idea appeal to anyone? It'll require some intricate coding from my inexperienced hand, but I'll be happy to do it once we have 10 or so fairly regular commenters. Let me know.
As mentioned earlier, a bunch of studies came out of the European College of Neuropsychopharmacology (ECNP) Congress last week. The conference was held in Amsterdam. The nice folks at AstraZeneca, makers of Seroquel, were repping results of studies showing how their star atypical performed in bipolar disorder.
One study examined how Seroquel performed against rapid cycling, a sub-type of bipolar disorder. In the study, 108 patients who exhibited severe or moderate depression as part of their rapid cycling were randomized and given either 300 mgs. or 600 mgs. a day of Seroquel. A third of the 108 patients were given placebo. According to the company's press release, the two groups taking Seroquel had their depression improve twice as much as the group taking placebo. Also, 53 percent of patients had their symptoms of depression remit (the release doesn't so what they mean by remission) versus 27 percent of the patients taking placebo. So Seroquel worked for about half the patients who took it. In a previous post, I noted that NIMH has stated in its own documents that psych meds give symptom remission to about 50 percent of patients who take them. They did not point to that figure as cause for hope.
The efficacy trial was 8 weeks long.
You already know how I feel about using placebo in severely ill patients. Also, an 8 week study doesn't tell you shit about how Seroquel will work with rapid cyclers in the real world--ie, beyond 8 weeks. Rapid cyclers, by definition, have four episodes of mania, hypomania or depression a year. So it's highly likely that these same patients will be pressed by their docs to up their Seroquel doses once their next round of depression comes around, or mania or hypomania. That's not a happy prospect, given the heavy head and weight gain, etc. that comes with Seroquel. And there's not much higher the docs can go with Seroquel in this population. Top level doses of Seroquel typically run 800-900 mgs. a day.
It's nice that Seroquel works in an 8-week trial. But I and many other bpers I know, who fall loosely into the same patient class, have found that Seroquel works fairly well initially, but that it poops out over time. And, then, our docs want to boost the doses even higher until the side effects blossom--and you are fucked up and knocked to the ground. Then it's on to the next med. So I don't find this study impressive in the least.
I just love this psychopharmacology revolution, don't you?
In my previous posts on the question of psych med trials, I should have mentioned the following observations about placebo. In one of the recent studies that I'll post about today, patients taking placebo had a 27 percent response rate (symptom remission of some sort). What's more, in many of the efficacy trials for anti-depressants in the 1990s, it was established that patients taking placebo had a very robust resposne rate to placebo. In some cases, the placebo response rate was on the same order as the response rate to the anti-depressants. Keep in mind these were short-term efficacy trials and after whatever psychological boost ("We're giving you this med to make you feel better" that's an implicit promise when they hand a research subject placebo) wears off, you can be sure the placebo patients would crash and burn.
A reader commented, wondering how you'd do experiments, especially basic molecular research, without using placebo. Wouldn't my little "no placebo for the mentally ill" idea be disrupting research? It wouldn't stop a thing.
Doing basic research in animals won't be stopped at all. Give rats all the sugar pills you want.
But when you are doing basic efficacy trials in humans with mental illness--ie., asking the basic Gomer question of whether med X has any effect whatsoever--then using placebo as your control med is stupid. You already know there will be limited response to placebo and it is unfair to give a known nothing to sick patients. You can test the basic efficacy and do proof of concept in med X just by giving patients the damn med and seeing how they respond to it. If docs are really that desperate for a control med, then give the patients who'd otherwise get placebo something that is already known to work...Lithium, Zoloft, an antipsychotic, whatever.
No more placebo. If the research world was under an ethical cloud for giving placebo to AIDS/HIV patients, then they are under the same cloud for giving placebo to the mentally ill.
Email me questions if you have any.
As I just pointed out, short-term (ie, 8 week) studies of meds are little more than suggestive and, in my opinion, are weak predictors of how patients respond to meds in a real world manner. That's not all that bothers me about these trials.
I also object to trialing drugs against placebo in mentally-ill patients. It is unethical to treat very sick people with the equivalent of water, and cannot be of any benefit to the patient in the short term. It may harm them. Last time I checked, doctors still took an oath to do no harm.
And yet the human subjects committees at major research institutions still approve the use of placebo.
More than a decade ago, AIDS activists challenged--very aggressively so--both pharma companies and federal regulators to stop trialing AIDS/HIV meds against placebo because the patients in the test groups had really shitty t-cell counts--and to give a dwindling patient nothing was unethical, inhumane, and immoral.
It's the same deal for us. If the reseachers, etc. will not do the decent thing and stop using placebo, then we must demand it of them.
A spate of studies on bipolar disorder have been released in the last few days. I'll discuss them in more detail later today. But, first, some background.
There is a large psych conference going on in Europe, thus the releases. Many of these studies are of various meds--although there's a decided emphasis on Seroquel--and their effects on aspects of bipolar (ie., BP and depression, rapid cycling, etc.). I'm glad that researchers seem most interested in BP these days. Until recently, the focus of much research was geared to depression and schizophrenia. So my hunch is that there must be money for researchers in going after BP, and Pharma companies must be willing to foot the bill. Yes, I am cynical.
What prompts my cynicism most of all is that all of the studies I have been able to read so far present their conclusions as groundbreaking based upon 8-week studies in an academic clinical setting--ie, not the real world--and measuring the response of med X in BPers versus the response of BPers only taking a placebo. In other words, these are classic efficacy trials. Here, docs, pharma companies and regulators are interested in the basic question of does med X "work" in relation to patients taking a sugar pill. Classic medical research method. These are not effectiveness trials, which would measure the response of patients to med X versus placebo response over a longer period of time and in a more real world setting.
Efficacy trials--in the context of studying mental illness and approving drugs for the market--produce very limited answers, but they remain the basis upon which your doctor may well make the decision to prescribe you med X. You, then, become the guinea pig--or a very informal effectiveness trial of one in effect. That's bullshit.
It is deeply arrogant and abusive of patients to rachet up their hope--as the pharma companies' press releases and subsequent press coverage do very slyly--based upon short term studies. It's dishonest in fact. The psych business needs a lot more honesty from researchers, policymakers, pharma companies and doctors if we are to arrive at answers that truly mean something for patients' lives. The media also needs to play a part in this by asking sketpical questions of the above actors. In this case, the media has come up short for over 15 years.
And we are the only group in the psych business that matters. But our interests are not well served in the current power arrangment, in which we don't even have much of a share or a voice. That is also bullshit and must change.
Someone posted a good question over on one of the Myspace bipolar groups. The upshot was, "I went off my meds because I don't want to take them forever. Now I feel fine. Do people fully recover from this? Or is this a short-term fallacy?" I used to ask myself the same question all the time, when I was in the early days with BP. Except that I was too damn scared to go off my meds. I knew what I could get like--and I didn't want to end up in jail or in a psych unit. I value my freedom far too much. Anyway, for what it's worth, I posted the following reply to the question:
I'm afraid, like others say, that you are seeing a short term bump. Very, very few people have full symptom remission forever. The people who do best with this long term--and it's the long term that counts--are people who stay on their meds, even if they are aggressive with their docs on what they will take and put into their bodies, etc. I strongly recommend getting back on your Lamictal, unless you are having side effect probs with it...in which case talk to your doctor. I am skeptical as hell about some meds...but if you are BP, then you need to be on some kind of a mood stabilizer at a minimum. Sorry, but that's the deal...And i base that on over 16 years of delaing with BP and meds, as well as about 300 interviews I have done with people with mental illness.
It's the long-term that counts and making the long-term work requires some short-term sacrifices. Taking meds is one of them.
And so is the price of social workers fucking up. Looks like my earlier wild prediction was close to the truth. Yes, the woman who threw her children to their deaths in San Francisco Bay was a schizophrenic, off her meds (Haldol in this case), and her family had gone to Alameda County social workers (the woman lived in Oakland) asking that they be awarded custody of the woman's children. They were not awarded custody--and now these children are DEAD. As much as I criticize meds and am skeptical about their efficacy, there is little question that on a short-term basis they can be damn effective and are especially helpful in those who are stuck with mental illnesses in their most aggressive form.
Here's more cause for concern and skepticism--not alarm, people!--on atypicals. From a study published in JAMA. Keep in mind that this was a meta-analysis of other clinical studies that have already been performed. In this case, the subjects were senior citizens taking atypicals in order to treat dementia. But researchers determined that there was a greater risk of death from taking APs than from taking a placebo. I swear I am not poking around looking for these studies. They are that common in the medical field now. If researchers think there are enough questions around APs to merit these many studies, then that ought to tell us something. One thing is that it should tell us all to monitor our health very carefully while on these meds, be we seniors or not, and ask skeptical questions of our doctors.
One of this blog's regular readers, in commenting on soliders returning from Iraq with mental health problems and presumptive PTSD, wrote:
For me personally, my schizophrenia I've been able stand. It's the PTSD from the schizophrenia that I cannot. Living in the past is living in hell.
She is correct about how living with past trauma/s is utterly poisonous to getting on with life and recovery. It is hell. I and many others know this. The question is how do you get past this state. I don't pretend to know much about this piece of human psychology in a formal sense. But I know about it in the more casual sense of what worked for me. It had little to do with meds and symptom remission. It had everything to do with self-determination, faith in myself, a fearlessness about trusting myself and taking risks with my life, and time and distance. The details of how you do that--what are the actions connected with self-faith, after all?--are hard to describe, the kind of thing you make up as you go along. But there was a central tenet: I was not going to let mental illness ruin my life. I refused to cooperate with all the gloomy predictions. That may sound like a lot of macho bullshit, but it happens to be true. And in it there is much power.
Last evening, a mother tossed her three children into San Francisco Bay. The children died. Now, press accounts point to the fact that the accused was hearing voices that told her to toss the kids into the 50-degree water. When the police arrived, she was standing alongside a pier just staring vacantly.
Here's my prediction: subsequent reporting will turn up that the woman is schizophrenic, had a long and troubling history struggling with the illness, and is an example of how African-Americans don't get adequate mental health treatment in our culture (partly owing to the intense stigma attached to mental illness in African-American culture), and so on. The whole business has shades of Andrea Yates. It saddens me beyond words that children pay the price both for a mom who may be mentally ill and for an American culture that refuses to properly embrace doing something about mental illness. Sad and tragic.
Here's a study that looks into reports of priapism--permanent erection is the best way I can put it--associated with Seroquel. If Seroquel can do this to men, what can it do to women? As usual with research journals, only the abstract is available. The intolerable side effects keep piling up with atypicals.
This will not surprise anyone, but a large number of US soldiers and marines who've been screened for health problems upon their return to the states are turning up with clear indications of mental illness. Out of 50,000 examined, 1,700 reported wanting to hurt themselves or said they wished they were dead. 3,700 of them reported fears that they would hurt someone else. War is hell, of course. But there is something particularly disrupting about how we train soldiers these days (cf. Grossman's "On Killing"), desensitizing them to the value of human life (ie, the news today of special forces troops burning Afghans and taunting villagers with the dead bodies), and the conditions they encounter in the field. If there's a plus here, it's that DoD now takes this business seriously and actually checks up on our troops. I strongly believe that when the military and police forces understand that mental illness is a huge, unacknowledged problem in their ranks and actually do something about it, then much of the stigma around mental illness in America will disappear.
2005 ought to go down in history as the worst year in the 50-plus year history of rock 'n' roll. I haven't heard a new album all year that has changed my life, much less changed my mind about something musically. There have been some very good albums. Here, I am primarily thinking of The Hold Steady's "Separation Sunday" and the work of Pelican and Jesu. And then there have been spectacularly bad albums such as the new Death Cab for Cutie (awful vapid lyrics with worse music). But it's been years since I have heard an album that's knocked me over the way "London Calling" did, for example. I yearn for that kind of feeling again. I hope to god it happens in 2006.
I have been posting to this blog every day for three weeks. I have received exactly zero emails from readers in that time period. My mom hasn't even written! So um if anyone is actually reading the shit I write, then use the contact button the left and say howdy. It'd be nice to hear from people I don't know.
This will come as a shock to no one, but there is a huge bump in the number of bipolars, depressives and others with mental illnesses out there. I don't want to get into the whole question of whether there has always been that much mental illness (the "new" estimates run from 20 to 25 percent) floating around in America, or whether the powers-that-be (Pharma companies, public health officials, etc.) are manipulating this to their own ends. What concerns me is that treatments have not improved very much in the last 15 years. And the discrimination against the mentally ill in this society has not changed one iota in that time period as well. Meanwhile, we have a new generation of youngins' getting tossed into this matrix. I think we owe it to them to promptly find a better way to address mental illness in our society. I don't want another generation to be up against the same obstacles I have been up against.
We want something else.
It's not very often that I quote wholesale from a governmental document. The government is trying to spin us just as hard as a corporate marketer, after all. But, then, I ran into the following in a document from the National Institute of Mental Health. I'll update later, when I can figure out which of 10 documents I pinched this from. Hey, I'm off work for a couple of days, so shoot me.
Either way, it's interesting shit:
For people suffering from a mood disorder, the outlook has never been better. Effective therapies, both pharmacological and behavioral, can help them recover from potentially devastating episodes of depression or mania and prevent possible relapses. Why, then, is NIMH putting such a heavy emphasis on the development and dissemination of new therapies for mood disorders? The answer is that despite acknowledged progress, many people with depression or bipolar disorder go untreated. Despite the availability of a reasonably safe and effective therapeutic armamentarium, untreated and less-than optimally treated depression, for example, are both common and associated with profound societal costs. Only half of individuals with anxiety and depressive disorders are accurately diagnosed, and of those diagnosed, only 25 to 50 percent receive guideline-level pharmacotherapy and less than 10 percent receive evidence-based psychotherapeutic treatments. Even when they do receive treatment, only slightly more than half of all of them respond well to therapy, defined as experiencing a 50 percent or greater reduction from baseline symptom severity. If complete symptom remission or restoration of function is the outcome, then the proportion is even lower.
I am pleased to hear this kind of honesty from NIMH. It's also nice to see them confirm what I've been saying for a few years, as well as hearing from sources within the psych and social work community: Meds work for mental health patients about 50 percent of the time--and "works" in this instance is only measured as only making you feel half as fucked up. That's a staggering admission, given that many of us spend a few thousand dollars a year on anti-depressants, mood stabilizers and antipsychotics and, frankly, have little choice but to do so. It's staggering, too, because federal regulators don't require Pharma companies to be honest about this truth anywhere in their marketing. And chances aren't too good that of any of us will get our docs to admit that half-performance is the norm. Even advocacy groups will rarely cop to this in public or print. I'll get into why this is the case some other post.
For now, I simply say, we want something else.
I love scientific studies because sometimes the most amazing and surprising shit is confirmed. There are plenty of studies out there linking pot to all manner of ills--schizophrenia among them--but the linkage is usually more suggestive than proof of causation on a molecular level (more on that later). But this Canadian study on pot in rats is more amazing than most. It establishes that pot causes new brain cells to grow and may have anti-depressant effects. Obviously, a study with a conclusion that goes against most mainstream science will have to be replicated before it means anything concrete. Besides animal studies are often only suggestive of what might happen in human beings. But I don't think I have ever seen a scientific study of pot that's shown anything similar on a molecular level.
I'm not going to speculate on the anti-depressant effect until I can look into this a bit more.
A .pdf of the full journal article, which is free amazingly enough, can be downloaded from the above link. Very dense stuff. You have been warned. And here's an intelligent news article where the researcher talks about the findings.
Meanwhile, today the FBI announced crime statistics for 2004. Murders and other violent crimes were down. But pot arrests set a one year record with 771,000 Americans getting popped by Officer Friendly. According to the Marijuana Policy Project, 89 percent of the arrests were for simple possession not trafficking or growing pot. That's a fucking outrage. It also establishes that the Drug Czar's office is a pack of liars. When I interviewed one its spokesman in August, he told me that it was an "urban myth" that folks were arrested and imprisoned for possession. Um, whatever dude. I think I'll go grow some brain cells now.
I've mentioned before that atypicals can lead to the onset of diabetes. I'll leave it to you to decide how disastrous that might be for your own life.
For now, here are two studies pointing to just such a connection. The first uses California Medicaid data. The other is based on Canadian patients.
And here's a separate study from Duke, which concludes that atypicals don't generate diabetes.
I report, you decide!
Sleep is one of the biggest problems facing people with mental illness. It is a simple, necessary human function, but for many of us it remains complicated and elusive. For depressives, or bipolars who lean that way, there is too much sleep. Twelve to 16 hours of sleep a day often accompany cycles of depression, especially if you take a large dose of one of the SSRIs. Schizophrenics, too, often take womping doses of atypical antipsychotics--I know former state hospital patients who take 8 mgs of Risperdal a day plus 800 mgs of Seroquel--and wind up so doped that long bouts of sleep are inevitable. Then, there are bipolars, famous for their inability to sleep, especially when they are cycling into mania or hypomania.
Tonight, I cannot sleep. It's 2.30 am and I am wide awake. I know that I will pay for this tomorrow evening. Worn from a day at work, I will come home and collapse for an hour or so, and then be unable to sleep again until at least 1.30 am. This morning feels different somehow than those other nights. I am that awake. I've been doing my usual October rapid cycling crap for a few weeks now and have a couple of more weeks ahead of me.
I know my experience is not unusual. What troubles me is that in the last few years, it has become quite the fashion amongst psychiatrists to prescribe atypicals to bipolars in order to induce regular sleep cycles. I am acquainted with many bipolars and a good number of them are on anywhere from 400 to 800 mgs of Seroquel a day. Serqouel is popular with docs for addressing sleep issues. Of course, the atypicals carry a host of problematic side-effects, none more troubling than potential onset of diabetes. If I were comfortable with the side effects of Seroquel--both the diabetes risk and the 2 pounds a month weight gain and the foggy head in the morning that it takes 20 ounces of coffee to clear--then I would go back on Seroquel. But I am not. Besides, the stuff never forced me to sleep on a more regular, human schedule. Instead, it guaranteed that when I went to sleep I would be down for a solid six hours. Nice. But the heavy head in morning became too much to cope with, since I have a job that requires fairly complicated thinking the moment I walk in the door.
Like every bipolar I know, I yearn for the day when there is an effective, side-effect free way to treat our lack of sleep. Sleep aids are generally avoided by docs. They can be addictive. So, too, can benzodiazapems. And coming off benzos is not pretty, docs assure me.
So here I sit, awake on another night when I'd really prefer to be fast asleep. Of all the many punishments of BP, at times this is the one I hate the most.
As much as I bitch about psych meds on this blog, I would actually like to see them work well for people who take them. Here's more evidence that the Zyprexas and Risperdals of the world aren't nearly as efficacious as the pharma companies would lead us to believe. This journal article is a current study abstract (full-text not available) and it just isn't encouraging news for bipolars.
In the study, researchers found that rehospitalization rates within one year for bipolars were virtually identical, regardless of whether a patient took only a mood stabilizer (23 percent rehospitalized), a mood stabilizer plus an old antipsychotic (eg, Haldol; 27 percent rehospitalized), or a mood stabilizer plus either Zyprexa or Risperdal (both are atypical antipsychotics and 25 percent of patients in this group were rehospitalized). The abstract does not indicate which mood stabilizer was used. I'll update this information when I locate a full-text copy of the study.
Still, the findings are startling. The primary argument for adding costly atypicals atop of mood stabilizers is that the combination is supposed to be effective at controlling manic symptoms of bipolar disorder. I don't think anyone would defend a 25 percent rehospitalization rate as a sign of effective treatment.
This is further confirmation of the CATIE study. It's about time that psych docs, mental health advocates, social workers, policymakers and patients began to openly address the question of whether atypicals really make sense for bipolars, especially given the cost and side effect profile of these drugs.
This wouldn't have made sense to include in the previous post on Linda Hamilton, but.... Eli Lilly makes Prozac, the first of the blockbuster SSRI anti-depressants. It's now available in generic form as well.
In the mid-1990s my doc had me on 80 mgs of Prozac a day. A more typical dose for a bipolar with suicidal depression would've been about 40 mgs a day. Prozac damn near killed me. On it and the other SSRIs, I was wildly suicidal, unable to perform my basic job duties and so damn scrambled mentally that I couldn't do simple math. I don't take SSRIs anymore. I am doing a whole lot better.
I wonder if Eli Lilly would like to refund the thousands of dollars I spent on Prozac.
So thanks to Linda Hamilton and Eli Lilly for giving me a chance to shoot off my mouth about an ugly corner of my experience with BP and psych meds.
So I saw a teaser on CNN last night for Larry King Live this evening, a program featuring actress Linda Hamilton discussing "20 years of bipolar hell." The program began with King revealing that Hamilton is a spokeswoman for Eli Lilly, makers of Prozac and Zyprexa among other meds. In particular, Hamilton is repping a Lilly-sponsored program called "Complete Wellness Approach". Visit the website. It's the usual talk about making sure people with mental illness--whom Lilly is referring to as severe and persistent mental illness or SPMI--treat their bodies well.
Hamilton spoke about how people with mental illness can have their life expectancies reduced by 8 to 20 years compared with the average American. She attributed that to people making bad "lifestyle choices" such as eating too much, etc. There is, of course, some truth to that. Anyone with m.i. can benefit from better nutrition, better hydration, etc. That's a big duh.
And more power to Terminator girl, if all the riches she has give her the time and resources to be able to treat her body well, eat good foods, hire a personal chef and personal trainer, and so on. Whatever. That's Hollywood. And the rest of us live somewhere else.
What really pisses me off, however, is that King didn't ask her the obvious question about effects of meds on the bodies and brains of bipolars and others with mental illness. For example, he could've asked: "Linda, can you tell me about the metabolic syndrome that the recently-released CATIE study establishes is connected with the use of atypical antipsychotics?" Bet that would've made everyone in the room and Lilly's PR handlers damn nervous. That's because Lilly makes Zyprexa, an atypical, which has been connected with the deaths of multiple schizophrenics and bipolars.
So what's the metabolic syndrome? It's a fancy medical term that, as one psych researcher described it to me, describes a whole host of physical ailments that the long-term use of psych meds give rise to. Rapid and extreme weight gain, high blood pressure, heart problems and respiratory problems. That kind of shit.
This particular researcher--very well-known and respected in the profession--said "Zyprexa is the worst, everyone knows this" when it comes to screwing up peoples' bodies. Like other psych docs I've interviewed recently, he said that docs are really worried about the long-term effects of psych meds on the body.
I am fine with Hamilton going on television to describe what works for her, that BP is treatable and survivable and so on. I am glad that she is doing well and recovering.
I just want complete honesty when these pharma-sponsored quasi-infomercials hit the airwaves. Those of us with BP and other mental illnesses deserve that kind of honesty because we have been living with this shit for so long, we've been fighting back so damn hard, and, to be blunt, we are the ones paying the freight for all these over-priced psych meds.
Someone asked me if my earlier posts about Seroquel meant that I liked some of the other atypicals. The answer is no. I've taken Risperdal for extended periods of time and Geodon for a few weeks. Geodon made me agitated and manic. Not good. Risperdal, although useful for a time, puffed up my face, retarded my emotions and made me gain weight. At one point I went off Risperdal for a few months. When I tried it again, it agitated me so badly I couldn't sleep and made my heart race so fast that I almost took myself to the ER to be monitored. So there's my direct experience with atypicals.
I know a lot of patients report similar problems with those meds as well as with Zyprexa. Zyprexa is a whole other ballgame. It has actually killed people (not in large numbers, but so what?). In one case I know of, it threw a man into diabetic shock only days after he took his first dose. He died.
I cannot speak to Abilify yet. It's still a fairly new atypical and is rapidly becoming the AP du jour amongst psych docs. If anyone has thoughts on Abilify, I'd like to hear them.
Also, the pharma companies have a couple of more atypicals in clinical trials. So there's more to come.
I recently posted about a "survey" released by the World Federation for Mental Health. The survey reached the conclusion that bipolars want better treatment because that would help them live better. No kidding.
As I mentioned before, AstraZeneca (makers of Seroquel) sponsored the survey and issued a press release. Now, another alleged "news article" (little more than a reprint of the original press release) that lets AZ put its spin on the survey:
"Patients are looking for stability in their lives and SEROQUEL offers an ideal balance between efficacy and tolerability in the treatment of acute mania associated with bipolar disorder."
Any bipolars who've taken Seroquel care to weigh in on Seroquel's ideal balance? In the last couple of years, I have interviewed hundreds of people with mental illness. Amongst BPers, complaints about Seroquel are nearly universal, and many of these same people have dropped Seroquel in exhange for something else. I am one of them. Tolerability? Oh, that would be the drunken, heavy-head feeling, fog in the brain shit I got each morning after taking Seroquel the night before, right? I know my experience is hardly unique.
And why is AZ still trumpeting Seroquel's tolerability and efficacy when the recently-released CATIE study establishes that Seroquel wasn't very efficacious in schizophrenics and was so intolerable that 80-plus percent of patients taking Seroquel in the study stopped taking it? Is there any reason to believe that BPers don't experience similar issues with Seroquel? Didn't think so.
So why isn't anyone calling AZ and other pharma companies on their rhetoric?
Just an observation, but in the new round of anti-depressant ads on television (for Paxil CR and Cymbalta, mostly), all the fictional patients sure seem to be rich and prosperous and have this look to them that's not of depression but of being lost at a cocktail party or company mixer. There's something about this that bugs me. Not sure why.
A few people have commented that I am fairly negative about psych meds. I'm not. I am skeptical on the subject. Psych meds work pretty damn well when it comes to handling crises and short-term management of a mental illness. I say that without reservation. I am far more skeptical about psych meds when it comes to long-term management. That's for another post, though.
For now, here is one group and one website where the skepticism--and downright negativity--towards meds is far more intense than my random critiques:
The group is Mind Freedom. The website is The Icarus Project. Mind Freedom is a group largely devoted to ending "forced medication," mostly in reference to long-term hospital patients. This group has been a real pain in the ass for the psych industry. The Icarus Project is more of a community-based website (complete with forums), which explores new and different ways to live with BP. The site seems to be having technical difficulties right now, but you can still access the forums. The IP crowd can get carried away with lefty-anarcho anti-corporate rants, but in many respects I think they are onto something.
So there you go. Read and use with caution.
This blog is a little over a week old and is getting 200 unique visits a day without any promotion on my part. Thanks. What I am curious about is who people are and what they think about whatever the hell it is I am trying to do here. Send me email, anonymously or otherwise. Same thing for comments. There's a button for email on the left.
Cheers
So today--that'd be Oct. 10--is World Mental Health Day, proclaimed as such by the World Federation for Mental Health. Like every other advocacy group under the sun, they are banging the drum for education and awareness and all that necessary noise.
And the nice folks at AstraZeneca want to help! AZ makes Seroquel, one of the most-prescribed atypical antipsychotics both for schizophrenia and bipolar disorder. In my opinion, Seroquel is problematic stuff--effective, sure, but also with a host of lovely side effects including a foggy head and other fun stuff. Anyway, the PR people at AZ just pushed out a press release on the PR Newswire (cuz' you know PR is News!) in order to release what's apparently a survey co-sponsored by AZ and WFMH on bipolar disorder. So here we have another fine example of an advocacy group working cock-in-hand with Big Pharma. I'd be a bit more impressed if the survey--drawing from a very small sample size of 687 patients in seven countries--actually revealed something interesting. It didn't. Read it for yourself.
What I truly love, however, is that AZ quoted itself in the press release and set itself up as our advocates:
"The public has to understand more about mental disorders such as bipolar disorder. People with bipolar disorder deserve the best possible treatment allowing them to enjoy life to the fullest," said Dr Jamie Mullen, MD, Senior Director Clinical Research, AstraZeneca.
Somewhere I hear a cash register ringing. Where these bastards get off trying to speak for me escapes me. But commerce and arrogance have always gone well together.
What I'd really like to hear is Mullen and other Pharma folks admit the truth: psych meds work well perhaps 50 percent of the time, the side effects of Seroquel make the med intolerable over time, the CATIE study establishes that Seroquel and the other atypicals aren't such hot shit, the price of atypicals are immorally high compared to their real-world performance. When Mullen and the others can get honest like that--and CUT THE PRICES of their meds--then I know we'll be getting somewhere.
Concering some of my recent comments on meds and their side effects, a reader commented:
"I'm just asking of you to not be so incredibly closed minded when it comes to psychiatric medication. Really."
Ok, she said some other things as well. But...I can assure you I am not closed-minded on meds. I take them now and always have...17 of them in all over the years. And I haven't gone on and off them randomly like some patients do. Also, I actually think meds are essential...a complicated issue for another post.
For the moment, let me just point out that psychiatry is a profession riven with dishonesty between doctors and patients, especially when it comes to meds, and the Pharma companies are worse. Several of them have tried to dodge negative effects of their meds.
Right now, I am just beginning to hear some honesty from some docs about meds. Patients are stepping up and being honest about this too, after years of silence.
Why does that matter? Because it can help give patients some power in the equation with Pharma companies, the FDA, other governmental agencies, researchers and docs. We need and deserve far more power in this equation than we currently have.
We simply have to grab it.
I was poking around on Nexis the other day and ran into the following from a transcript of a talk Carl Salzman, who is a doc at Harvard Medical School, gave to a group of investment bankers in May 2004. Although he says nice things about atypicals and SSRIs, he has his doubts on how they actually effect people in the day-to-day world. Plus he has a lot of bile for how Pharma companies do their marketing. For example:
"My clinicians are really fed up with the marketing, absolutely fed up with the marketing. And academia is getting fed up with the marketing."
His global point is that drug companies do a great job of creating hype around new meds that doesn't translate into real world success and that they obscure the real world side effects patients experience.
We need more honesty like this. I'll start laddling it out tomorrow.
I don't quite know how to put this: I am sick of researchers doing "studies" on mental illness that declare meds efficacious and darnn good for you based upon short-term studies. These studies also typically ignore the cognitive and physical side-effects of meds. This is especially true of atypical anti-psychotics. It's all the rage in the psych world these days to look into how Seroquel, Zyprexa and so on work in treating certain aspects of bipolar disorder. The aspects in question are commonly the ragged, raging end of mania, the insomnia of hypomania and the depressive side of BP.
Here are links to the abstracts on studies on atypicals and bipolar. One looks at Seroquel from the depressive side of things. The other looks at Zyprexa versus Lithium as a 12-month treatment for bipolar, which is to say the study examines Zyprexa as a maintenance med. Sorry these aren't links to the full articles. Like most academic journals, the American Journal of Psychiatry is a pay-to-read site. I am so sick of that. Why can't patients have easy access to the same info our docs do?
There some other points I want to make about these types of studies but I'll leave that for a future post. God knows, there are tons of studies out there that declare meds great and never look at how patients live with them. That kind of shit must stop. Patients first, docs second, drug companies third. That's going to be the new world order.
Last night, I stopped by my favorite bar. I wanted to crawl behind a table in the corner and not be oppressed by people having fun. But someone wrote a review of the bar--a nice new place with great food--in a paper this week. The place was packed with happy people and there was something with a bossa beat on the sound system and I walked over to the bartender, who's a friend, said "Hello" and left. I needed Tom Waits and whiskey and solitude not happy people.
That feeling dogged me all day today. This evening I stepped out into the rain to get some take-out, cigarettes and coffee. My usual coffee shop had a line ten people deep with one barista working. I stood in line for a moment and listened to the customers talk in that Saturday-night-buoyant-after-dinner way. If I really wanted that grande americano, it'd be a ten-minute wait. I walked out the doors. At the restaurant, a Thai place I love, there were couples, gay and straight, bundled in scarves and sweaters waiting for tables. I couldn't take too much of looking at that. I found a waiter I know and ordered something to go and walked back into the rain. I tried the coffee shop again, but there was an even bigger line of happy people. So I walked down the street to another coffee shop. It had a long line, too. I sat in a chair outside and smoked my last cigarette, waiting for my take-out to be ready. A couple of friends of mine from the neighborhood walked by me, one made a half-wave, and they kept walking.
Yeah, I am sure I had that poisoned look to me. A dead dog would've got up and run for sure.
I paid for my curry-fried rice and tom cha soup a few minutes later, then went to the corner market to buy smokes. The owner's son, a cute seven-year-old, was there and he started in on me. "Batman's not real! Batman's not real!" He and I have a running argument on this topic. I usually say, "Batman is as real as a heart attack." Tonight, I looked at him as I paid his father for cigarettes, and told him he was right. "What about Superman?" he said. "He's dead too," I said and walked back out into the rain.
I dread the onset of October. About mid-month, things start trickling downhill and it's a Class-4 rapids as the month closes out. It's the way it's gone for a decade or so. October equals bipolar hell, especially the cold spot in hell reserved for depression. This year gravity took over earlier than usual. Lovely. I'm already pissing people off and explaining to friends--an annual conversation--that I'll be a better human in a month. Then I start rubbing myself the wrong way and I know I am in the danger zone. I know, too, that I must be careful with myself, careful with what I put in my mind and body, careful with where I go and what I do and what I can handle. I am not worried. I've been down this rathole many times. This shit is bad. I am badder.
Self-knowledge is crucial when living with a mental illness. But without it, it's easy to fuck up when you've actually still got a measure of control. The price of fucking up--locked unit, jail or death--is far too unpleasant to toy with. I value my life and freedom enough to stay out of situations that could get me there. That means that I've got to isolate. I hate it and sit around smoking too many cigarettes as a consequence. But it beats the hell out of being a stiff or sitting in a hospital staring at the ceiling.
Someone related a story in the comments to a prior post about a relative who was fired from a job, soon after being hired, because the bosses had heard he was schizophrenic. He hadn't done a thing. But, hell, can't have that around the office!
That's exactly the kind of fucked-up shit that goes on in America each day. As a society, our compassion stops where the workplace starts. That's exactly the kind of shit that must stop.
The trouble is that state and federal anti-discrimination laws are damn near useless when it comes to protecting the mentally ill in the workplace. The Americans with Disabilities Act is supposed to be offering people some level of employment protection. Earlier this year, I interviewed an enforcement official at the Equal Employment Opportunity Commission in Washington, D.C. That's the agency charged with enforcing the ADA. We ended up having a very honest conversation. In it, this official admitted that the ADA was an ineffective tool for ending discrimination. I was shocked--not by his conclusion, but by his honesty, which is rare in DC.
We need stronger employment protection on the federal level--and we need it now. Too many decent Americans are being kicked to the curb. And that ain't right.
Who knew? Too bad it's only satire.
Hey, maybe Dubya has his own blog!
In a story that moved on the United Press International wire, it was announced that researchers had identified a gene associated with schizophrenia. That's cool. But researchers can find all the genes in the human genome and still not be able to offer our schizophrenic brothers and sisters a "cure."
I've heard such talk from researchers and the media since the late-1980s. A cure is on the way. It's right around the corner. We are achingly close. Research is hope. Hey, here's another gene connected to schizophrenia or Bipolar Disorder!
Um, guys, where's the cure? And, American media, when are you going to stop propping each discovery of a gene linked to this or that ailment as having curative potential? To whit, the article's headline: "Move closer to schizophrenia, autism cures." Oh, sure.
The survey released yesterday by NAMI was, if you look at the full .pdf (link in post immediately prior to this), underwritten by Abbott Labs. Abbott makes Depakote, an anti-convulsant that is one of the most commonly prescribed mood stabilizers for Bipolar Disorder.
NAMI has long been criticized by patients for taking Pharma money and, by implication, for being manipulated by drug makers. NAMI doesn't like hearing that patients perceive them that way, but that's the reality of what many of us think. I don't agree that NAMI is somehow controlled by the Eli Lillys and Abbotts of the world, but the group does take money from those and other drug makers. I suspect there is a level of influence that comes with such contributions.
Would it make the movement cleaner and more effective for patients if NAMI took no money from pharma companies? Yes. I'll get into this in a forthcoming post.
But, hell, that doesn't even piss me off.
What pisses me off about Abbott underwriting the study is that, in 1988, I was a sales rep for one of Abbott's many divisions. I was the number four salesperson in the country for that division. I was 25 years old.
One evening, Abbott pulled together a few doctors at a dinner to push our products on them (these were critical monitoring devices, not drugs). Somewhere in the flow of that dinner I had a massive bipolar meltdown. It wasn't pretty.
The next morning, one of my bosses called me at my home office. I tried to explain that I had no idea what had happened the night before. It was all something new and foreign to me (I'd never heard the terms manic-depression and Bipolar Disoder before) and I needed help. At the time, I was an undiagnosed bipolar, but had the idea that something was up with me. I hadn't been able to sleep for weeks, for instance.
Larry Lehman, an Abbott executive, fired me at that point. He informed me that my health benefits would expire that day. Then he said something I have never forgotten:
"You have a problem with success."
No, Larry, that wasn't it at all.
So, yeah, I have special love for Abbott Labs.
October 6 was Bipolar Awareness Day. I didn't know that! Damn, I could've walked around town all day making people aware of my bipolar. Missed opportunity!
Then again, it might not have been a positive, if the results of two public opinion surveys released the same day are an indication of what America thinks of bipolars and how they function in society--and what bipolars think of how we function in society. The surveys were released by the National Alliance on Mental Illness (aka, NAMI), one of the prime mental illness advocacy groups in America.
So what did the surveys determine? (There's a link to the full .pdf on that page.)
Close to two-thirds (62%) feel people with bipolar disorder have difficulty establishing or maintaining relationships, and many feel people with bipolar disorder have difficulty with other life skills, such as consistently attending work or school (52%), managing their time (55%), focusing (54%) and getting or maintaining a job (50%).
I am not surprised by those numbers. Anyone who is honest about the effects this lovely disorder has on us would agree that relationships and jobs, for example, are very real problems for us. Bipolars who repsonded to a separate survey said, "No shit":
According to more than three-quarters of people with bipolar disorder, however, all of these issues are difficult: Managing their time and/or responsibilities (80%); Focusing (79%); Consistently attending work/school (79%); Getting or maintaining a job (77%); Establishing or maintaining friendships or relationships (74%).
Even less surprising--and less encouraging!--is:
Despite three-fourths (75%) of U.S. adults agreeing that people with bipolar disorder can lead productive lives, 42 percent would not like a close friend or relative to date or marry someone with bipolar disorder.
Translation: Sure, you can recover and get your life back, but would you mind doing it out of my sight, out of my workplace and leave my daughter/son out of it? This is classic American bullshit NIMBYism and one of the central dichotomies of how mental illness is addressed in this country. I'll touch upon this is a near-future post.
Bipolars who answered the other survey were having none of it: 95 percent agree that they can live productive lives. No shit. Happens every day. That message isn't getting to America at large. Makes me wonder just how useful it is for mental health advocates to hitch their hopes for greater societal understanding to the confessions of television personalities and movie stars.
The bipolar respondents were not asked about whom they feel they should be dating, marrying or making out with.
And then amongst Americans at large, the survey found: Only two-thirds (68%) of respondents feel people with bipolar disorder have a serious disease. Even more surprisingly, close to one in five (17%) believe people with bipolar disorder can control their illness without medication if they really want to do so.
What the fuck?
Oh, yes, she worked for Microsoft. Anyone who defends monopolists is suspect in my book.
An interesting piece in the Houston Chronicle, carefully questioning just how much an improvement atypical anti-psychotics are for patients with schizophrenia or, by implication, with bipolar disorder.
When pieces like this show up in the MSM, you know something is changing. And something sure as hell needs to change in the treatment of mental illnesses.
This comes from the New Orleans Times-Picayune's blog, which is essentially how they are putting out their paper post-Katrina. If this probe turns up valid instances of ill patients being offed, then the folks who did it should be charged with murder.
Here's the gist:
"The chief medical officer assigned to identify the victims of Hurricane Katrina said he is working with Attorney General Charles Foti to see if any medical personnel may have administered death-inducing or used other procedures to speed the deaths of patients before or after Hurricane Katrina in the New Orleans area.
Dr. Louis Cataldie, a former East Baton Rouge Parish coroner and now the lead medical officer overseeing recovery and identifying the dead, told reporters at a news conference Wednesday that he is looking into possible euthanasia by the medical personnel."
It's one of those stories that you hope isn't true, but somehow suspect could be true.
President Bush appointed Miers to replace Sandra Day O'Connor on SCOTUS today. Not only is Miers a Bush crony with no judicial experience, she's been involved on the wrong side as a corporate lawyer for such companies as Microsoft, where I hear she was involved in helping them defend against DOJ anti-trust charges (under Clinton, I ought to point out). Even conservatives are baffled by her appointment. Some allege that she is a third-rate lawyer.
I'll stay neutral for now. Perhaps, she is an undiscovered legal genius.
I wonder how the Senate Judiciary Committee is supposed to ask her questions on legal temperment and philosophy when she has no judicial paper trail, will be able to decline commenting on many cases involving corporate clients due to attorney-client privledge, and when she will be able to duck questions about specific issues (abortion, etc.) and specific cases, claiming that to do would be to bias her in judging future cases. How the Senate is supposed to pick through that and make a decision is beyond me.
One thing the small pro-Miers crowd is pushing right now is that she is a woman who was the first female hire by her old law firm back in the 1970s. That, of course, tells us nothing about her abilities as a jurist for a superior court much less SCOTUS.
I am intrigued, however, that she is a never-married 60-year-old. I suspect that tells us a lot about her. But, of course, it tells us nothing about where she stands on issues of privacy, sexuality, reproductive rights and so on that will certainly come to the court during her (proposed) tenure. That's likely exactly what Dubya and Rove and Cheney want.
Dubya continues to become stranger and stranger with less and less repsect for the American people and Congressional oversight as his administration lurches along.
This is something I posted on a myspace group a few weeks ago. If it says anything, it's that grappling with this nonsense over the long-term is throughly doable...and worth it:
16 years ago last month, i was formally diagnosed as a bper. it was called manic depression back then. these were the bad old days. lithium was pretty much the only option unless you were way out there, then you got haldol and other fun stuff. prozac was just barely on the market at the time. all the other anti-ds and APs were for the future.
mental illness was definetely spooky shit back then, but for some reason i wasn't too freaked when i went to the doctor. it was in san diego and it was a blazing hot day. i sat in a diamond tucked leather chair in the doctor's office. we talked. within ten minutes he had me pegged as manic-depressive.
the diagnosis was a relief. it explained a lot of things that had been happening in my world and it was nice to know that i at least had a framework within which to deal with all this shit.
as limited as meds were back then, the real problem was that you really couldn't tell anyone you had an mi. i told my folks of course. they lived 300 miles away. i told my best friend/roomie. that was it. there were no support groups. the internet was the province of cs geeks and 2400 baud acoustic modems. there was no one to talk to and no one to care.
i was pretty sure i had gotten a death sentence and was pretty sure i'd never make it to 40.
a lot has changed since--and i am glad of it. as much as i bitch about meds, the meds are better simply because there are more of them. that means more options and more chances to have something work. back in the day, if Li didn't work, then it was hard cheese for you. you got worse, took haldol and ended up in the hospital. meds these days still suck ass, of course...just not as much.
the main thing that has changed, however, is that there are more of us out there. many of us are unafraid of being who we are and getting on with life. mi isn't the death sentence and one-way ticket to the streets that it once was. we help one another. this internet thing has sorta taken off--and it's a big help to many of us, if only to stave off loneliness. you have no idea what a sea change that is for us in terms of our identities and relating to the world. then again, maybe you do have an idea.
what's more, younger folks are far more open about mi than you ever could be circa 89. i have no doubt that being able to be open about who you are has saved many a kid's ass...or at least kept them from leading a shitty, reduced life. people are fighting back against this shit with a force that just wasn't around back then.
one thing that has changed for the worse is insurance. back then, i had a 6 dollar an hour job (that's what an mba and bp got ya back then) and although it was pretty average employer-offered insurance, it was great. everything was paid for. no limits on doctor visits. no bullshit 1500 a year annual deductibles.
you all know what the deal is with insurance these days, so i'll spare you the details. but yeah it sucks and it's got to change. too many americans are going broke just trying to live.
the other thing that's got to change is that we have got to become a movement just like the cancer survivors have become. just like aids/hiv patients had to become. it's the only way to get social change in america.
so when are we all going to get together and do like ACT-UP did and go shut down wall street for a day? when are we going to show up at astra-zeneca's HQ, dump our seroquel in the lobby and refuse to leave until the bosses come down and let us bitch at them over the side effects of their meds? not to mention the price! when are we going to take over the mental health world from all the docs and public health officials? they are on our team, sure, but they just don't really KNOW how this plays out in a person's life. when are we going to....ah nevermind. you know what i'm saying.
things have gotten better. but things need to get better still.
happy anniversary to me.
Here's linkage to the abstract on a study of intellectual ability pre-onset of bipolar disorder or schizophrenia in the American Journal of Psychiatry. As with most academic journals, it costs to read the full study. Aren't physicians and researchers just so special?
What's interesting is that bipolars are great at math and lousy at visuospatial matters, according to the study. No wonder why I got an A in Calculus but cannot draw to save my life.
What makes me question the applicability of the study to you and I is that it was done on Finnish soldiers circa mid-1980s. This is America and it's 20 years later. Still, it does tell us something.
Everyone recite the quadratic equation with me--and draw stick figures!
I hate the last day of the regular season in baseball. That's because I live in Seattle, the Mariners are proverbial bottom dwellers, and soon we'll go off daylight savings time and it'll start getting dark at 4 p.m.
Despite having two of the American League's best players in Ichiro and Richie Sexson (plus a very solid Raul Ibanez as DH) and a phenom on the mound in Felix Hernandez, this is a team that cannot win. That's because our starting pitching is spotty, save for Hernandez.
Pitching wins pennants. I'd like to win one of those again.
I hope the owners open their checkbooks and GM Bill Bavasi grows a set of balls and goes after the best pitchers in the free agent market this winter.
I am tired of sitting in Safeco Field--the best ballpark in baseball--and watching the stadium go to waste on a lame team.
Oh, at least the Red Sox are in the playoffs.
In recent post, I referred to the landmark CATIE study. I do not use the term landm ark lightly: This is the first study I know of that has tracked schizophrenics over a long time period (18 months vs. hte usual 4-8 week study that meds go through) and measured rates of discontinuation with atypicals as compared to an old, conventional antipsychtoic. The atypicals under study were Zyprexa, Seroquel, Risperdal and Geodon. The conventional antipsych was Trliafon, a med that was popular in the 1970s.
The atypicals have been used agressively in chronic schizophrenics since the late-1990s. In the last five years, they've also been used just as aggressively among bipolars. The CATIE study did not study their use among bipolars. In my mind, given that dosages of atypicals given to schizophrenics and bipolars are roughly equivalent, I believe that this study has implications for bipolars.
The total market for antipsychotics is $10 billion a year. About 90 percent of that comes from atypicals.
So what did the study reveal? That atypicals suck, basically. That they are far from the miracle drugs their makers have pimped them out as being. That schizophrenics stopped taking them because of their rotten side effects (weight gain being prime among those). That when the patients in the study were taking them, the atypicals proved to be about as powerful at treating schizophrenia as was the comparatively ancient Trilafon.
The rates of discontinuation for these meds were truly staggering--74 percent for the all of the meds taken together. The lowest rate of discontinuation was for Zyrexa (64 percent). The worst was Seroquel (82 percent). As the study stresses, patients were not just discontinuing meds because they felt like it, but in consultation with physicians directing the research.
I am not surprised by these results. I've interviewed several hundred people who've taken antipsychotics. The majority have reported going off the meds due to side effects such as weight gain (20 to 30 pounds a year) and what I've dubbed "heavy head," which is that lovely foggy mind you get from taking these meds--much as if you had downed a fifth of whiskey the night before.
What was equally unsurprising to me was that about 25 percent of patients taking the atypicals ceased treatment because the meds did little to addressing the underlying schizophrenia. It's a seldom discussed, but often whispered reality in psychiatry that meds don't perform very well for anywhere from 30 percent to 40 percent of patients.
Miracle drugs my ass.
I've already mentioned in another post that I believe this means that the Pharma companies have no choice but to cut their prices for these very expensive meds. I'll take that up again in a future post.
Note: After briefly being available for free on the New England Journal of Medicine's website, it now costs to access the study. I'll try to get a .pdf file of the study from someone within a few days and post the file or a link to it on this site. After all, this study was paid for with $42 million in taxpayer funds. Big Pharma didn't contribute a dime (ok, they contributed meds for the study). So I am at a loss as to why NEJM considers it proprietary.
Here's a link to the National Institute of Mental Health's press release on the study. Most news accounts of the study were so lame that I won't link to them.