Psychiatrist plugs medication adherence on NPR radio through scare tactics

ALT_mentalities has posted an NPR interview with psychiatric survivor Carmelo Valone. Please check out ALT_’s post and then listen to the NPR interview. If you’re still hanging in there (and believe me, it’s worth it), feel free to add your two cents to the discussion.

Valone’s story should give many people cause for hope! The psychiatrist who phoned in should give many people cause for dismay.

Ablechild and breaking the monopoly on psychiatric treatment with medication

Below is a press release from Ablechild about the prioritizing of issues on the Connecticut Governor’s 2012 agenda.

“The most important thing Connecticut can do now is to break the monopoly on psychiatric treatment,” (co-founder Sheila) Matthews says. “Medication shouldn’t be the first option addressing behavioral or learning issues and it certainly shouldn’t be the only one.”

Some readers may question why a press release about the over-proliferation of medication use in the child foster care population is reprinted in a blog on schizophrenia. While it is true that diagnosing schizophrenia in children is still rare, the diagnosing of ADD, ADHD and bipolar (schizophrenia’s look-alike twin) has grown by leaps and bounds. Most psychiatrists accept and promulgate the notion that there is a rare psychiatric condition called childhood schizophrenia. Up until now, the public has tended to accept this, just as it has accepted the pharmaceutical companies ‘ pronouncement that schizophrenics need antipsychotic medication just like diabetics need insulin. Robert Whitaker’s book, Anatomy of an Epidemic, revealed that pharmaceutical salesmen promoted this self-serving and false comparison in order to keep people from going off their medication.

I strongly suspect that the push to stop medicating children stops at schizophrenia, which is always upheld as a “special case,” just as it is in adults. When the public stops buying into the notion that adult schizophrenia is always a special case, effectively treated by drugs, the childhood schizophrenia diagnosis and the use of drugs to “treat” it will also be questioned. Childhood schizophrenia can be treated and should be treated, like any other childhood emotional disorder like ADD, ADHD and bipolar, without resorting to drugs. Ablechild is doing excellent work. Let’s make sure that treating childhood schizophrenia without drugs is part of its agenda.

Ablechild Urges Adding Overmedication of Children in State Care to Governor’s 2012 Agenda

Parent advocacy group to educate State of CT healthcare providers on the over-prescribing of psychotropic drugs to children in foster care.

WEBWIRE – Tuesday, January 03, 2012

WESTPORT, CONN., JANUARY 3, 2012—Ablechild co-founder Sheila Matthews will brief Connecticut State Healthcare Advocate Victoria Veltri today on the organization’s research into the over-prescribing of psychotropic drugs to children in foster care.

The parents’ rights organization is a sitting member of the Connecticut Behavioral Health Committee that reports directly to Governor Malloy. In today’s meeting, Matthews will share data from last month’s ABC News 20/20 report, which Ablechild helped develop. The show provided a first look at a new Government Accountability Report that found:

• Foster children were prescribed psychotropic drugs at rates nearly five times higher than non-foster children.

• More than a quarter of foster children were being prescribed at least one psychiatric drug.

• Hundreds of foster children received five or more psychiatric drugs at the same time, despite no evidence that this is safe or effective.

The meeting’s agenda includes a report on the $29,766,625,000 spent on psychiatric services by Connecticut’s Department of Children and Families, and Ablechild research showing how making educational, language and vision and hearing/speech solutions available can cut costs while enabling true informed consent for parents. “The most important thing Connecticut can do now is to break the monopoly on psychiatric treatment,” Matthews says. “Medication shouldn’t be the first option addressing behavioral or learning issues and it certainly shouldn’t be the only one.”

In a November briefing with Malloy’s legislative aide, Michael Christ, Matthews also pressed for action on Proposed Bill 5007. If passed, the landmark legislation would require the state to inform parents of their rights regarding diagnosis and treatment of behavioral and mental health disorders in children.

Since 2005, Proposed Bill 5007 has remained stalled in the Connecticut Legislative Education Committee subject to reintroduction by long-time committee chair, State Representative Andy Fleischmann. Matthews says, “It’s extremely frustrating that no action has been taken on this bill for over five years while special-interest and industry-backed legislation not only moves through committees rapidly, its backers have been given fast-track access to the legislative process itself.”

Malloy is preparing his 2012 agenda, which will be announced shortly before the legislature convenes in February. “Ablechild is pleased to support Governor Malloy as he sets his course for the year ahead,” says Matthews. “Connecticut was the first state to prohibit schools from recommending the use of psychotropic drugs, three years before it became federal law. We hope Connecticut will continue to show leadership through best-practice guidelines that protect its most vulnerable residents.”

About AbleChild

AbleChild is a nationally recognized nonprofit organization dedicated to parents, caregivers, and children’s rights alike. The organization is a clearinghouse for objective information regarding ADD, ADHD, and other behavioral issues. All services AbleChild provides are free to the public. To learn more, visit www.ablechild.org.

Early psychosis intervention programs pay mere lip service to spiritual beliefs

Is schizophrenia a spiritual illness, as patients often maintain, or is it a brain disease, as the medical profession claims? The OASIS program at the University of North Carolina, like many psychosis programs affiliated with university medical programs, strikes a hypocritical note.

Gianna Kali at Beyond Meds alerted me to a recent newspaper article about the program. (Thank you, Gianna!) I have noticed that the medical profession is now starting to pay at least lip service to the idea that schizophrenia, in the patient’s view, is a psycho/spiritual quest. But as you read further into this article it becomes apparent that the staff at the OASIS program completely reneges on the promise to the patient – that they believe him when he maintains that schizophrenia is a spiritual quest. It almost seems like they “tricked” him, because, to the program, it was all about the meds all along.

What is actually happening is that outpatient programs for identifying and treating early psychosis (like the OASIS program) are getting the idea that they should appear sensitive to the client’s “delusional” beliefs. This looks innovative and “client centered.” So, journalists are fed the following story about hope and recovery, and the staff “accepting” (humoring) the young man (Binanay) in his spiritual delusions, and how outraged the medical director is that the parents of a different boy are given no hope, and we the readers are emotionally sucked into this outrageous idea that there is no hope! We are also being sucked into thinking that the only hope to manage psychosis is through meds.

Binanay was also lucky to be diagnosed soon after the onset of his illness, and to be referred to the Outreach and Support Intervention Services (OASIS) program – administered by UNC’s Center for Excellence in Community Mental Health – in Carrboro’s Carr Mill Mall.


Binanay needed direction; he needed acknowledgement of his perception that what was going on was as much in his heart as his head. It was a profound spiritual experience.


The staff at OASIS was willing to accept that. The importance of mapping an exit strategy of the client’s own design is a cornerstone of the OASIS philosophy. The conviction that there’s hope is another.

Diana Perkins, OASIS’ medical director, describes a recent meeting she had with the parents of an 18-year-old boy in rural North Carolina who had been diagnosed with schizophrenia. They had taken him to a local hospital, and were told by a psychiatrist that their son would never recover – no hope; get used to it. “And it was just devastating,” Perkins says. “Here they had this 18-year-old boy, off in college, and now they’re being given this message. This was a psychiatric hospital; this was a trained psychiatrist.”

The problem, Perkins says, is that psychiatrists often don’t see schizophrenia patients until their illness is advanced. But a commitment to the meds was part of the plan, and that involved a tradeoff – the euphoria for a shot at stability – he wasn’t quite ready to make.

“Clinicians have this bias,” Perkins says, “and they really need to understand that this is not inevitably a chronic, disabling illness, that people can learn to manage it.

Later in the article, OASIS staff seem to have reneged on their promise to Binanany, to respect his belief in the spiritual origins of his so-called schizophrenia.

“His illness took a severe course,” Saade says of Binanay’s struggle with recovery.
“I think David had a hard time coming to terms with the role that medication would play in his life,” Perkins says, “what he needed to do to maintain a sustained recovery, how he was going to manage.”

Maybe Binanay’s “illness” took a severe course because he had a hard time adjusting to the diminished expectations that this program offered him and to the side effect of the meds. Maybe Binanay felt tricked. Instead, we have a spokesman for, in essence, a drug rehab program defining Binanay for us in disease terms. Who was on hand to help him with his spiritual issues and to build resiliency without resorting to drugs? As for the OASIS program — been there, seen it, done it with my own son in a different “innovative” program. The goals and treatment methods were the same — to keep people on their meds. The results were that my son was on meds, and no alternative treatment that would have worked with his beliefs was offered.

What is OASIS?

OASIS, which stands for Outreach And Support Intervention Services, is an award-winning program dedicated to providing services to adolescents and young adults who are experiencing early psychosis, or who are at risk for developing psychosis. (Ed. note – Psychosis risk syndrome is criticized as being a way to get people on meds early, many of whom might otherwise never go on to develop psychosis.) 

Mission

The mission of OASIS is to foster successful recovery from early psychosis and to increase public understanding of psychotic disorders. The program aims to:

•Provide early identification and treatment (Ed. note – This means meds.)

•Prevent relapse (Ed. note – This means meds.)

•Prevent hospitalization (Ed. note  – This means meds.)

•Minimize disruption in people’s lives

•Support people in the workplace, school, and relationships

•Educate the community and other providers to recognize early psychosis and the importance of early treatment (Ed. note – Maintain and increase the public’s belief in meds.)

•Provide educational opportunities for mental health professionals (Ed. note – This means jobs.)

•Provide access to state of the art clinical research programs (Ed. Note – This means you may become a guinea pig for drug trials. You will certainly be fodder for the university medical program with which this program is affiliated. You will be considered a laboratory animal for the scientific interest of the medical students and faculty. How many medical staff offer spiritual guidance?)

The definition of short

So, if we still don’t know what is meant by “short term” use of antipsychotics, is there a doctor in the house or out in cyberspace who can shed some light on this? If I don’t get an answer, shall I assume that nobody is looking seriously at this issue?

The question is quite deliberate on my part. Since most of us don’t get a dress rehearsal for a schizophrenia diagnosis (60% of new “cases” apparently do not have family history), we will find ourselves on medications because we haven’t got a clue that there are other ways of dealing with trauma.

I have heard that the most recent research says (patients have been saying this for years) that medications, if used at all, should be short term. If this is so, then people ought to know what short term is so they, and their doctors, can agree on an end date while bolstering their recovery with alternative therapies. Many doctors will claim that the patient has to be “stable” in order to go off them, while many patients claim that they shouldn’t be on meds in the first place and don’t function well on them. Doctors (pharma) have been getting a free pass up until now because the specifics, if there are any, are cloaked in mystery. I am not referring to how to go about withdrawal (there’s lots of information here), I mean how short is short?

Thanks to Robert Whitaker’s book, Anatomy of an Epidemic, we now know that the “medication is to schizophrenia just like insulin is to diabetes” argument was an falsehood (or misconception, depending on how you look at it) that was not clarified by the pharmaceutical companies until the author put the question directly to a pharmaceutical company executive.

If we are starting to hear that drugs, if used at all, should be short term, what is meant by short term?

Drugging is always easier

From the New York Times

Antipsychotic Drugs Called Hazardous for the Elderly

Nearly one in seven elderly nursing home residents, nearly all of them with dementia, are given powerful atypical antipsychotic drugs even though the medicines increase the risks of death and are not approved for such treatments, a government audit found.
 
While the Food and Drug Administration has warned doctors that using antipsychotic drugs in elderly patients with dementia increases their risks of death, doctors continue the practice because they have few other good choices, said Dr. Daniel J. Carlat, editor in chief of The Carlat Psychiatry Report, a medical education newsletter for psychiatrists.

“Doctors want to maximize quality of life by treating the patient’s agitation even if that means the patient will die a bit sooner,” Dr. Carlat said.

This last remark is priceless. In the case of the “mentally ill,” that would be twenty-five years sooner.

Child soldiers in Washington State

It is hard for me as an outside reader to really appreciate the complexities of the struggles that other people like Stephany of Soulful Sepulcher and Becky of Involuntary Transformation have been having with the mental health system for their relatives. There is so much specific information that an outside reader can get lost. I don’t know if I am just waking up or if it is well know by others that children under 18, especially if they are institutionalized, are trialling drugs that are already on the market for eventual approval for children.

I’ve been following Becky’s blog about her son’s experience with the mental health system in Washington State. Washington State has decided that age 13 is the legal of the age to give informed consent when it comes to the mental health treatment. This is not in line with the age of consent in other types of health situations, in Washington State. Patients’ rights groups have been agitating to let adults decide whether they want mental health treatment or not, and Washington State extends this privilege to 13 year olds? This is odd, indeed, becautoday’s parents, including negligent ones, are lining up to get their young teens treated. Parents would gladly give their permission hoping for a quick fix. So, what on the one hand looks “progressive” in having young people make their own choices, on the other hand is something more sinister.

I don’t know how it works in other jurisdictions or whether Washington State is unique, but something seems rotten in the State of Washington. I don’t have the time to research the age of consent for mental health treatment in all jurisdictions but age 13 strikes me as surely the youngest. Check out the Community Health Plan of Washington here. Note what the plan says about cases of substance abuse. •Minors 13 or older may get this treatment without consent if DSHS decides minor is a “child in need of services.”

When Becky’s son turned 13, the doctor’s wrested complete control of decisions on the medications away from the mother. That’s what age of consent is all about. I have the further impression that her son was then deemed too sick to make his own decisions and fell under the complete control of the State.

Step 1 is taking the medical decision-making away from the parents of under 18s.

Step 2 is the State seizing complete control by deeming the child in need of services.

Step 3 is even more sinister because it appears, in the case of Becky’s son (and obviously countless others) that he was then enrolled in drug trials. From the impression I have I from reading Becky’s blog, these were not what the public usually thinks of as drug trials, where drugs are trialled before they are FDA approved. Her son appears to have been subjected to a variety of neuroleptics that are currently on the market but not approved for use in people under 18.

Ergo, it would seem that the pharmaceutical lobby has managed to get certain jurisdictions to lower the age of consent in mental health matters and then moves in with conducting experiments on the very young in order to win eventual approval of their products for use in children.

What I would like to find out is how widely known is it that children are trialing drugs? It is widely known that growing numbers of children are being put on antipychotics (off-label) and that the brunt of this falls on poor children but does the public know that lowering the age of consent for children means that pharma moves in and tests these drugs on child users of the mental health system? It is, of course, much easier to test these drugs if the child is institutionalized.

The ties that bind

The excerpt below from the CNN article, Growing up bipolar demonstrates planting a certain belief (in this case “disease mongering”) by people who most stand to benefit. A quick Internet search revealed that Dr. Charles Raison’s Mind-Body Program at Emory University gratefully receives funding from:

Anonymous Donor Support; The Dana Foundation; The Emory-Tibet Partnership; Glaxo Smith-Kline; The National Heart, Lung, and Blood Institute (NHLBI); The National Institute of Mental Health (NIMH); NARSAD; Schering-Plough

Dr. Rakesh Jain is in private practice in Texas.

Is it possible to stop medication?

For the past year, Jennifer has been off of all medications but still sees a therapist, and the family has a relationship with a psychiatrist in case of relapse.

In general, people with bipolar disorder must stay on medication for life because relapses are common, said Raison, who has not treated Jennifer. But some are fine for periods of time without them, he said. (editor: Relapses are not common if you get your act together.)

Jain agreed that some patients who do well can go for stretches without medication, but he has never been able to completely remove a bipolar patient from drugs and say, “you’re cured.” Bipolar disorder should be viewed as a chronic illness like hypertension or diabetes, which require lifelong management, he said. It is wise for anyone who does go off medicine to continue to see a mental health professional and closely watch for symptoms of recurrence, Raison said.

See also another aspect of The ties that bind

Back with a vengeance

Or more like a tired whimper. Got back home this morning having not slept at all in economy class and unable to sleep much since. My holiday in the United States and Canada is now a mental collection of snapshots, impressions, and articles clipped from newspapers and magazines that caught my interest, always on my narrowly focused pet topic.

Here’s one impression that I call the “irony and the ecstasy.”

Sign at the entrance to Herdon, Virginia:

Herdon, Virginia – Committed to being drug free.

They’re serious about this, apparently. Yet if Herdonites are like everybody else these days they are loading up on the legally sanctioned drugs while sanctimoniously hounding their teenagers about the evils of the illegal stuff.

What is an acceptable trade-off for the meds?

I realize that if I don’t apply myself in this heat, the blog will wilt away. Even though I don’t have much to offer these days, you’re going to get a post anyway. Here are my latest musings about why I am so against meds when any “reasonable” person can see that meds are an important part of treatment.

Meds are a code word in schizophrenia for the doctor is in charge for life if you aren’t careful. Meds never cured anyone, in the context of mental illness, that is. Doctors will be the first to admit this, because after all, there is “no cure” for schizophrenia, is there? There is only management of this “disease.” This means that your life is placed in the hands of social workers and doctors and occupational therapists, who will manage your life to death while urging you to take charge of it, which is difficult (though not impossible) to do on meds, as I attempt to illustrate below.

It is axiomatic that an involvement with social workers, doctors and occupational therapists means your life is dysfunctional. This sounds like an obvious slight to generally good people doing difficult jobs, but, they are there to aid the dysfunctional. If you managed your own life better, there would be no need for social workers and doctors. If you want to get functional, you will eventually have to cut the ties that bind.

When I think of why I hate the meds so much, I always think of a lovely young woman in Chris’s day program. She was pretty and petite and developed into an absolute butterball on the meds. She went from being socially acceptable and very attractive in terms of appearance to being an outcast based on her appearance. She dropped out of the program for a while and when she reappeared, she had shed all the weight and looked great, but her eyes were very, very sad. Fast forward a few months into the program (and the medications). Her mother and sister continue to be slim and fashionable, and Rosita (not her real name) was once again huge. Setting aside her problems that got her a diagnosis in the first place, Rosita now had a further problem of social stigma based on her weight. She was also now a physical oddity in her own family. No doubt her family felt more pity towards her because of the weight. No doubt she felt it. A young woman her age would be interested in dating – how was this going to happen?

Doctors feel that this is an acceptable trade-off for the meds, which don’t cure anyone and supposedly help you manage your life better. At the same time, psychiatrists are offering you no real alternatives to the meds, such as the kind I write about in my blog.
So, yes, I hate the meds because they are symptomatic of the larger problem of hiding unpleasant truths from people while making others glaringly obvious and they prevent doctors from empowering their patients.