Dr. E. Fuller Torrey: Sounding An Alarm or Being an Alarmist?

For the past several weeks, I have had an interesting and troubling email exchange with Dr. E. Fuller Torrey, perhaps the most controversial psychiatrist in America. He’s also one of the most influential.

Today, Dr. Torrey is best known for his campaign to get Assisted Outpatient Treatment laws passed. An example is Kendra’s law. There’s plenty on the Internet — pro and con – about AOT. 

It would be a mistake, however, to believe that Dr. Torrey’s impact has only been in promoting AOT legislation. He has been sounding alarm bells and criticizing our mental health system for decades.  Among other things, he has founded two organizations. The Stanley Medical Research Institute is a nonprofit organization that supports research looking for the causes and treatment of schizophrenia and bipolar disorder. According to its webpage, it has given away more than $300 million since 1989 for research, mostly outside the U.S. The second group is the Treatment Advocacy Center which describes it’s purpose as “eliminating barriers to the timely and effective treatment of severe mental illness.” TAC’s main focus is pushing for passage of AOT laws.

I wrote about Dr. Torrey in my book. He’s a Magna Cum Laude undergraduate at Princeton, a medical doctor (McGill University) and an anthropologist (Stamford.) He also has worked in the  Peace Corps as a physician, at the National Institutes of Mental Health, and as a professor. But his main occupation in recent years has been as a muckraker. In April 2001, my former colleague and friend, Peter Carlson, wrote a profile of Dr. Torrey for the Washington Post/L.A. Times that described the impact that his groundbreaking book, Surviving Schizophrenia, had in this country. Here’s an example.

In 1984, when Laurie Flynn walked in for her first day as executive director of the National Alliance on Mentally Illness, she found a pile of mailbags, all stuffed with letters.

Torrey had just published “Surviving Schizophrenia,” a guide for patients and their families. He appeared on Phil Donahue’s TV show, urging people seeking help to contact the fledgling group of fewer than 50,000 members. The result was this avalanche of mail.

“Nobody had ever said the word ‘schizophrenia’ on popular television, and people came out of the woodwork seeking help,” Flynn recalls. “For many years, mothers were told they were the cause of the problem, and here comes Fuller Torrey saying, ‘Wait a minute, this isn’t the family’s fault. These are brain diseases.’ Here was a psychiatrist saying, ‘I know what you’re going through because my sister has the problem.’ It’s hard to overemphasize what a hero he was back in the early days.”

Torrey donated the book’s royalties to NAMI and helped build the group into a powerful lobbying organization with more than 220,000 members. They lobbied together for the alliance’s agenda: Torrey, the verbal bomb-thrower; Flynn, the soft-spoken centrist. But their partnership collapsed in December 1999. That’s when the group published Torrey’s scathing attack on National Institute of Mental Health, in which he said the agency spent too little money for research on severe mental illnesses while funding studies on such topics as the mating habits of the eastern bluebird. 

In addition to Surviving Schizophrenia, he has authored another dozen books. He was warning that our jails and prisons were becoming our new mental asylums long before I wrote CRAZY.  His book,  Nowhere to Go: The Tradgic Odysessy of the Homeless Mentally Ill appeared in 1989. Three years later, he wrote: Criminalizing the Serious Mentally Ill: The Abuse of Jails as Mental Hospitals.

I think it is unfortunate that his critics often attack him because of his strong opinions on AOT, dismissing his other works.  Let me give you examples.

*When I finished CRAZY, I sent a copy to Mental Health America and explained that I wanted to do what I could to publicize how persons with mental disorders are being imprisoned. One of their public relations officers called me back and informed me that MHA would have nothing to do with my book or me because I had written about Dr. Torrey and TAC. The fact that I had dared to write about him was enough to get me blackballed. Ironically, a year later MHA gave me a media award.

*When it was recently suggested at a NAMI board meeting that Dr. Torrey be invited to speak at the group’s national convention, a board member said he would lead a boycott and walk out if Dr. Torrey was invited. He wasn’t. (A sad irony given what Dr. Torrey did to help launch NAMI.)

None of this has kept Dr. Torrey from speaking his mind. Which brings me to the point of this blog — finally.  Regardless of whether your admire Dr. Torrey or detest him, there’s no arguing that his is an important voice.  Not long ago, he wrote a blistering article — which is his style –  in the National Review attacking the Substance Abuse and Mental Health Services Administration (SAMHSA). The article was entitled, Bureaucratic Insanity, and Dr. Torrey claimed persons with mental disorders would be better served if SAMHSA closed down.

 I was surprised because some of the agency’s $3.6 billion dollar budget has gone to help fund programs that I support — such as grants for jail diversion programs and mental health courts. But Dr. Torrey claims that too much of SAMHSA’s budget is being spent on programs that might help people feel better about themselves, but do nothing to actually help treat their symptoms. He claims SAMHSA doesn’t fund enough programs that target persons with severe and persistent mental disorders, such as schzophrenia and bipolar disorder:

Judging by the just-released document “Leading Change: A Plan for SAMHSA’s Roles and Actions 2011–2014,” such individuals (the severely mentally ill)  not only are not a priority for the organization, they do not even exist. Not once in the 41,804-word text of this three-year plan is either schizophrenia or bipolar disorder even mentioned. Instead, the nation’s mental-health ills are all subsumed under a vague category called “behavioral health problems.” Assuming this broad mandate has allowed SAMHSA to dabble widely and ignore the most serious disorders.

Years ago, Dr. Torrey made a similar charge against the National Institutes of Mental Health, accusing it of wasting millions on programs for the “worried well”  – people who should be telling their problems to their “bartenders and hairdresses” not to psychiatrists. His attack helped force NIMH to change its priorities, especially under the leadership of its current director, Dr. Tom Insel. The article that Dr. Torrey wrote about SAMHSA is being circulated on Capitol Hill and has put SAMHSA on several budget cutters’ radar.

In an email exchange, Dr. Torrey wrote that he has been investigating where SAMHSA spends its money and he has found some interesting grants.

 Mental Health America  received $535,137 last year from SAMHSA, which made-up 19 percent of that group’s revenues. MHA is the largest mental health advocacy group founded by persons with mental disorders. NAMI, which is the largest grassroots mental health lobby group and was founded by parents, received $300,000 from SAMHSA. (I should point out that I am an active member of NAMI and make monthly contributions to it.) 

Dr. Torrey reminded me that neither of his groups  — the Stanley Medical Research Institute or TAC – accept government funds. Nor do they take money from drug companies. Dr. Torrey has a wealthy benefactor who helps bankroll both of his groups, in addition, to contributions from supporters.

Pharmaceutical companies are the largest source of revenue for both MHA and NAMI. The New York Times has published articles about how much funding drug companies give NAMI. In his email, Dr. Torrey sent me information about MHA.

 The MHA 990 lists Pfizer ($397,375), AstraZeneca ($25,000), Sunovion ($83,600), Eli Lilly ($86,000), Novartis ($60,000), and Forest Pharmaceuticals ($60,000) as 2010 contributors. Who is Sunovion, you may ask? It is a small drug company that got FDA approval last year to market lurasidone (Latuda), another me-too second-generation antipsychotic for which there is not a shred of evidence that it is better in any way than the many already on the market. Sunovion contributes to MHA to protect their ability to sell their product to state Medicaid systems at $600+ per patient per month rather than the generic risperidone or olanzapine at one-sixth the cost. If any state legislature or state mental health authority raises a question about why the states should pay for this drug or not add it to its formulary, MHA (and NAMI) will immediately produce five pathetic-looking patients who will testify that Latuda is the best drug they have ever taken and that it saved their lives. Similarly, for Pfizer and Geodon, AstraZeneca and Seroquel, etc.   MHA and NAMI are drug salesmen in the disguise of nonprofits.

These are harsh words from Dr. Torrey who once traveled the nation, without charging a fee, helping organize NAMI chapters and fire-up its members.

In his email, Dr. Torrey warned that revenues for MHA and NAMI have both decreased because of unfavorable publicity about their contributions and pressure from members of congress. MHA’s revenues went from $3 million to $2.1 million in 2010. NAMI’s revenues dropped from $9.6 million to $7.1 million. With the drug companies pulling back, MHA and NAMI are turning more and more to SAMHSA for help.

The question that Dr. Torrey raised is whether SAMHSA funds come with strings. He claims they do. MHA and NAMI must adhere and gear their programs to SAMHSA’s priorities or risk losing dollars. (I should add that SAMHSA has had a strong bias against AOT laws, which helps explain why Dr. Torrey dislikes its leadership.)

All of this is troubling to me. As the parent of a son with a severe mental disorder, I want desperately for drug companies to develop new drugs and search for cures. I certainly don’t automatically view them or their employes with suspicion. I want MHA and NAMI to offer the tremendous programs that help our loved ones and us, such as NAMI’s Family-to-Family and In Our Own Voice programs, which might never have been developed without financial contributions from drug companies.

But obviously, I don’t want the pharmacuetical industry running NAMI anymore than I want SAMHSA setting its priorities. That’s the job of its leaders and members.

A few months ago, I defended NAMI’s policy of accepting drug money in a blog.  At last count, there were 17 comments.  I explained that I didn’t think there was anything wrong with NAMI pocketing the cash as long as it fully disclosed its revenue sources and made certain there was a wall between donations and policy. I compared the situation to how newspapers accept advertising but keep their editorial staff and business deparatment’s completely separate.

My friend, D. J. Jaffe found my rationalization naive.  He and others felt I had let my devotion to NAMI cloud my vision. 

So I’d like to ask your opinion.  Is it simplistic to think that MHA and NAMI can accept money from the drug  industry and from SAMHSA and not be influenced? And if you think so, which might be worse — influence from drug companies or SAMHSA? Should a federal agency be handing out tax dollars to a nonprofit group that lobbies the government? Can MHA and NAMI survive without drug company and/or government funds? 

These are questions well worth asking. 

 

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

  • Karen Aspenson, MSW

    As the Executive Director of a very busy NAMI affiliate in Wisconsin, I have witnessed for 8 years NAMI’s growth of consumer-centered, evidence-based programs and services that truly change people’s lives.  Locally, we do not receive funding from pharmaceutical companies, but not for lack of trying.  Would it change the way we do business?  Absolutely not.  Those of us in the trenches, fighting the ever-present stigma about mental and the vicious funding cuts being made across the country, look to agencies such as SAMHSA and NIMH for their stellar reputations in producing exciting research that has led to the improvement in quality of life for many people who live with mental illness.  That research helps us gain funding at the local level.  I trust that NAMI walks the fine line of promoting what works because it works rather than who funded the research.  Will the same questions not exist no matter who provides the dollars to run the research?  I am also a fan of Dr. Torrey’s work and, like Pete, am saddened that there has been a break in the relationship between him and the NAMI organization.  He is one of my pioneering heroes!  Thanks for putting this in a framework that is easy to understand, Pete. 

  • Lois Early

    I don’t think that MHA & NAMI are influenced by money from the drug companies. But it does give their detractors & the anti psychiatry crowd ammunition to use against them. The only place I can go to get information & advice about the mental illness that my daughter has is at my local NAMI support group. People show up at my local support group with loved ones who are very ill. For the most part they’re experiencing the same kind of mental illness that affects my daughter. It’s ugly, disruptive and heartbreaking. We don’t have any rah rah recovery stories to tell. We pray the meds continue to work & that our loved ones will continue to take them. We’re all trying to get the system to provide the medical care that matches the severity of our loved ones’ illnesses which we never quite get. Getting the services we do receive is always an uphill battle. My daughter’s court order expires annually so every year it comes up for renewal we’re worried it won’t be renewed. Every time they don’t renew it my daughter stops her meds & is psychotic within a couple of months. TAC & DJ are the only people that I know of that actively and exclusively advocate for the sickest people & I am eternally grateful.  AOT is only controversial if you don’t have a family member who wouldn’t survive without it. For us, it’s a lifesaver. 

  • Erika

    Dr. E. Fuller Torrey is, and has been for quite a few years, disconnected from both the wants and needs of those actually living with serious mental illness. Not only is he an alarmist who, in the past, has raised concerns with no basis and spouted false information; but dangerous to actually implementing programs of recovery. If one supports AOT laws – though, I prefer to honestly call them Involuntarily Outpatient Treatment laws (and I am not against them, either – I can see both sides of the argument – I just refuse to water it down so that it sounds nicer) – is not completely relevant; he has done and said enough outside of that to make me consider him an enemy to the mental health community.

    This is a much longer discussion to be had; but, I do have a couple points:

    I: It’s not where the funding comes from, it’s how its used
    MHA and other top organizations such as NAMI do make a demonstrable difference in those living with a Serious Mental Illness (SMI). Though this varies chapter by chapter, there are countless people with positive stories to tell of each. The MHA chapter here, for example, provides a wide array of services for children, families and adults. These include, but are not limited to, case management services, respite care (young children), a temporary shelter for those with SMI, support groups, a teen recovery-focused group (support meeting, volunteer work, vocational skills, recreation, etc) and other educational things. Unfortunately, not everyone has a rice benefactor supporting them. More so, him receiving his money from such a source is not indicative that no bias exists. NAMI, MHA, etc have been forced to release where they receive their funding from. Just to put things on equal footing, Torey should do the same.

    On that note, I do also believe that the funding causes some bias. For example, I was speaking to someone whose daughter wanted to participate in the In Your Own Voice (?) program. She had recovered without medication, was stable and otherwise completely recovered. She was not anti-medication; but wanted a chance to tell her story. She was refused. It also likely forces the organizations to provide less information on side effects and other long-term complications. Of course, many practicing doctors receive funding, as well. Their should be more research on this.

    II. As for Torey, his target is wrong

    I’m going to quote from Wikipedia because, though it can be seen as a questionable source, this article is cited and I think summarizes the issue well:

    “Torrey has been charged with acting to limit the voice of those consumers, survivors and ex-patients that he disagrees with, opposing their civil rights and censoring and ridiculing their ideas and those of their supporters. Torrey has been a long-time critic of the Center for Mental Health Services that provides support and advocacy, on the grounds that they support antipsychiatry groups and those opposed to outpatient commitment, claiming they neglect the seriously mentally ill due to a hippie 60s attitude, distributing funds on the basis of other factors such as “community cohesion” and ethnic minority involvement, and being more dysfunctional than the individuals it is supposed to help.[18] He has specifically opposed public funding for the National Empowerment Center, for rejecting the medical model and arguing for a recovery model without necessarily needing medication; it has since lost its funding from the CMHS.[19] Torrey has in general been instrumental in lobbying against, and undermining, community-based consumer projects because they promoted social and experiential recovery and questioned the standard medical model. Consumer organizations have protested that they are already economically disadvantaged and vulnerable to political whim while Torrey and his organizations have rich and powerful backers.[16] It has been argued that Torrey and other psychiatric and family member advocates do not necessarily have the same interests as consumers/survivors themselves.”

    It goes on to say a few other things; but that covers the basics (http : // en . wikipedia . org / wiki / E._Fuller_Torrey # Criticism – remove spaces)

    Medication, though an incredibly useful thing, is not enough for recovery alone. All medication can do is repress the symptoms – it can not give people meaning to live, nor can it give them purpose, goals, etc. Torrey has targeted and shut down community centers that, though not 100% opposed to medication, follow a model that includes other therapies – so called “experimental” therapies. These centers are GREAT things and what we need more of – not less of. If Torrey had his way, though, they would not exist. By the way, such treatments are not “hippie” treatments as he calls them; many of them are evidenced based. Equine therapy, for example, has been shown to reduce violence in patients in a long-term, secure facility. In one of the studies, it even led to a patient, who formally had to be restrained multiple times a week, being discharged. Vocational skills building, DBT and other coping skills workshops, one-on-one therapy, and other psychosocial approches have been shown to help, as well. Mental illness is not something that anyone can cause for themselves, nor is it something that can be treated with willpower alone; but it’s also not so simple as fixing brain chemicals, either. We NEED community centers that integrate all forms of therapy, while also helping consumers/patients make informed choices about treatment and their lives. This is what SMI patients want and NEED; but Torrey has a track record of shutting them down and speaking against them. And that is why I, as a consumer/patient, detest him so much. He may think he is doing those with a mental illness a favor; but, by lobbying against the types of treatment we need, he is hurting us. This may sound harsh; but I truly look forward to the day he retires fully so that organizations that provide such care don’t have to fear him shutting them down.

    Once again, I have no doubt he has good intentions; but he has been in a lab for years and, quite frankly, doesn’t “get” what patients actually need. What RESEARCH says is best. We, as a community, don’t want or need what he thinks is best. I would NEVER have recovered if my providers had the same opinions as he.

    III. Also, a note on facts
    Torrey has also been accused – and proven – to have provided false information and statistics in his arguments before.

    From the same article:

    “Torrey has criticized many organizations. He has charged the National Institute of Mental Health with not concentrating its resources sufficiently on severe mental illness and directly applicable research; NIMH has disputed his statistics and viewpoint.[17]”

    “He has been accused of gaining influence by sensationalizing and exaggerating the incidence of violence and its link to medication noncompliance, including disseminating unsubstantiated and unreliable statistics. When a California NAMI journal editor included a questioning of Torrey’s statistics, the local board glued together the pages [20] and effectively shut down the journal.[16] Others, while agreeing that public mental health care in the U.S. falls far short of what people with serious psychiatric disorders need and deserve, have argued that Torrey’s solutions are outdated and that his book The Insanity Offense is based on unsubtantiated portrayals of certainty on the statistics on violence, outpatient commitment and medication, stigmatizing tens of thousands of people, deeply offending and insulting those who hold views differing from his own, and promulgating one-dimensional solutions. TAC’s attempts to associate violent incidents in the news with lack of medication have been described as wild hyperbole, and the use of the term “assisted treatment” has been described as a euphemism for forced drugging.[25]

    Philip Dawdy has challenged it. He wrote “You might even ask him why his group cites violence done by people not taking medications, but ignores violent acts committed by people who were on medications and why so many of the studies the group cites are decades old”

    and California Network of Mental Health Clients (CNMHC) has challenged it. “Contrary to Treatment Advocacy Center’s explicit claims, the study makes no mention of “untreated” mental illness, schizophrenia, manic-depression, or any other diagnosis. Equally, there is no basis for extrapolating the 4.3% of the national population. TAC arbitrarily raised DOJ’s homicide estimate from 4.3% to 5%. Then they arbitrarily attributed these homicides to less than 1% of the U.S. population, the number TAC says have “untreated schizophrenia and manic-depression.”

    In another error: 4.3% of 16,914 (the total homicides in 1998) is 727, not 1,000 as TAC claims. And DOJ’s predictions for 1999 will lower the figure still further to 645.”

    He’s also estimated that 40,000 dangerously mentally ill individuals are walking the streets each day. I am still awaiting proper proof of that.

  • http://www.facebook.com/profile.php?id=671966854 Ria Byss

    NAMI has done a lot to earn my respect of late.

    it has spoken out against Joseph Biederman, Thomas Spenser and Timothy
    Wilens. (Biederman alone got at least $1.6 million dollars from drug
    companies.)

    http://www.fiercehealthcare.com/story/three-harvard-docs-violate-conflict-interest-rules/2011-07-07?utm_medium=rss&utm_source=rss

    it has lobbied for the closure of the Judge Rotenberg Center, which uses electric shock (please note: not electroshock) as punishment against “emotionally disturbed”, autistic and developmentally delayed students.

    http://www.enterprisenews.com/news/x633529521/Shock-treatment-at-Judge-Rotenberg-Center-debated

    it has spoken out against involuntary electroshock (yep, it still happens) even though the World Health Organization has done so.

    http://www.mindfreedom.org/kb/mental-health-abuse/electroshock/who-opposes-forced-ect

    oh wait, NAMI hasn’t done any of these things.

    • Icspp

      thank you for calling attention to this

  • http://mentalillnesspolicy.org DJ Jaffe

    If you are looking for the most ‘controversial’ psychiatrist in America, I might nominate Dr. Peter Breggin or Thomas Szasz, for their belief that mental illness doesn’t exist (i.e, their belief every organ in the body can get diseased, except the brain)

    • http://www.facebook.com/profile.php?id=671966854 Ria Byss

      @201da28330e286286396abcacddbff69:disqus  “Dr. Peter Breggin or Thomas Szasz for their belief that mental illness doesn’t exist (i.e., their belief every organ in the body can get diseased, except the brain)”

      you have misstated Szasz’s theory*. he does not say that the brain cannot get diseased. he says that the mind cannot get diseased. which it cannot. brain does not equal mind.

      psychiatry has no scientific foundation for coinages like “borderline personality disorder”, “social anxiety disorder”, “psychopathy” and so forth. you cannot empirically prove that they exist. you cannot empirically prove that “mental illness” exists. neurological disease, yes you can prove. see the distinction?

      * — I don’t know Dr. Breggin’s stance on it.

  • Erika

    Alright, one last note:

    “He who controls the language controls the debate.”

    That rule is certainly showing itself here. When you use words such as ‘anti-treatment’ when discussing those who are against AOT, you control the debate and influence the outcome. “Anti-treatment” gives someone the image of a person who does not care, wants to harm someone or is otherwise cold or an overall awful person. “Against AOT” or “Anti-AOT” are not only more accurate (most people against AOT are not against any form of treatment; quite the contrary); but far more neutral and appropriate for debate. Sort of how pro-abortion folks call themselves “pro-life” – implying that anti-abortion folks are “anti-like” – and pro-abortion people like calling themselves “pro-choice”. The words get at peoples’ emotions (pathos), which is not how a debate should be run.

    One could even argue that calling them “Assisted” Outpatient Treatment” laws is euphemistic and is a way to, once again, use language to sway the debate. Assisted gives the image of taking someone by the hand and helping them reach a goal that they already desire. Once again, I believe that, though it does not sound as nice, “Involuntary Outpatient Treatment” laws is what should be used.

    As someone who understands the arguments from both sides, and is still left undecided, let me present why I am hesitant to support AOT.

    I. Once again, it’s about the language.
    When arguing for AOT, many people like to quote the following statistics (Kendra’s Law Outcomes):

    “55 percent fewer recipients engaged in suicide attempts or physical harm to self;49 percent fewer abused alcohol;48 percent fewer abused drugs;47 percent fewer physically harmed others;46 percent fewer damaged or destroyed property; and43 percent fewer threatened physical harm to others.”

    Looks good, at first glance; however, it doesn’t look nearly as well if you look closer. For example, on the first fact it is saying that 55% fewer patients engaged in suicide attempt or self-injurious behavior (SIB). That means, however, that 45% did not reap the same benefit. This would be a troubling statistic, either way; however, it is more so because it is similar to the other statistics in this list that are supposed to show that it works well. Essentially, the way this is written, it is sort of saying that 45% or so is good when concerning the number who improved (implying that those who wrote up the results believe that number is rather large); but, when that same number doesn’t improve, it’s not as significant. To illustrate my point, let me write these in another way:

    “45 percent of recipients still engaged in suicide attempts or physical harm to self;
    51 percent still abused alcohol;52 percent still abused drugs;53 percent still physically harmed others;54 percent still damaged or destroyed property; and57 percent still threatened physical harm to others.”

    It doesn’t sound or look as good anymore, does it? The facts were not changed, however, just the way it was written. This is the power of language. And it is also brings into question how effective AOT really is – though, even with the revised statistics, it is still a very significant improvement – on its own, or without some improvement to the current program. The grand majority of recipients had less hospitalizations, incarcerations and bouts of homelessness and the majority felt that it had helped them; however, there still seems to be something lacking.

    And, by the way, for the rest of the statistics:

    “74 percent fewer experienced homelessness -  26 percent still experienced homelessness
    77 percent fewer experienced psychiatric hospitalization – 23 percent still experienced psychiatric hospitalization;83 percent fewer experienced arrest – 17 percent still experienced arrest87 percent fewer experienced incarceration – 13 percent still experienced incarceration.

    II. Beyond statistics, autonomy

    Before going further, I want to make a note that I am not stating an opinion; but giving scenarios or challenges for pro-AOT people to consider.

    “A man is brought to the ER wheezing, having trouble breathing and suffering from pain in his chest. He is told that he has pneumonia and, more surprisingly, is HIV-positive – he has AIDS. After recovering from the pneumonia, the attending physician discusses treatment options with the man: drugs to help his immune system, primarily, along with frequent visits to an HIV-expert (Infectious Disease physician) and hospitalizations to deal with illness when it does come up. It is explained that he is likely going to die young no matter what he does. After hearing his options, the man declines to take the suggested treatment, even though he knows it will likely lead to a quick death. Do you think it is OK to force him to take treatment – medication plus seeing his doctor?”

    “Kelly, an 18 year old college Freshman, has suffered from Asthma since she was a young child. Before she turned 18, Kelly’s parents always made sure she took her medication, both the ones she was supposed to take daily and her rescue inhaler. Her parents no longer have this power over her life and Kelly has decided that she no longer wishes to use her inhalers – they make her heart beat fast and give her chest pains, believes that God will heal her (faith healing), and, besides she argues, if she stops breathing and ends up unconscious, the doctors will still treat her. She does, in fact, end up in the ER many times, as well. Kelly’s parents think she is being irresponsible and don’t understand why she is doing what she is; however, they don’t have the power. Should she be forced to take her medication?”

    “Howard, an older man, is recently diagnosed with Type II Diabetes. He knows that if he does not monitor his illness and take his medication as prescribed, his state will likely worsen; but, taking the medication makes him feel nauseous, experience an upset stomach, suffer from bouts of hypoglycemia and, due to the potential for liver damage, he must also have his blood frequently tested. As such, he frequently stops taking them and states that he will find a way to cure himself. As expected, he does continue to worsen and his family fears he may go into a diabetic coma. Should he be forced against his will to take his medication and go through monitoring?”

    If you said no* to any of these questions, I would ask you to explain what is different between these patients and those with mental illness. All suffer from a chronic condition, all risk injury or death by not taking their medication and, in the examples I provided, 2/3 at least lack some insight into the workings of their disease (faith healing; healing himself). They choose, for whatever reason, not to comply with outpatient treatment. Yet, they are all legally allowed to do this, despite it being a major detriment to their health, and nobody is lobbying for laws to force them to comply. If you argue that mental illnesses are just like physical ones, then you must wither support AOT laws for those in the above example or not support AOT laws; if you argue that mental illness is somehow different, then you contradict an earlier claim and leave room for arguments that if mental illness is not a disease then people diagnosed with it claiming they are not sick and don’t need treatment are not suffering the symptom of lack of insight; but just adopting their own opinion of what might be wrong.

    *Of course, if you said yes, the above does not apply.
     

  • http://www.facebook.com/profile.php?id=671966854 Ria Byss

    I don’t know that state and local NAMI branches have a lot of autonomy. perhaps rightly, perhaps wrongly, I always thought the board of directors set the agenda. or maybe I just live in a state (Massachusetts) with an awful NAMI chapter, which wouldn’t, as I said above, do anything about the Judge Rotenberg Center, which resides in this state.

  • http://www.facebook.com/profile.php?id=671966854 Ria Byss

    hippyish therapy doesn’t have side-effects. meds do. 

    • Erika

      I agree with you. If you read my post – my spacing and formatting got a bit messed up in the posting, so it may be hard to – I said that I supported the supposed “hippyish” therapy. Dr. Torrey is the one who speaks against them (and who uses the term “hippy” to describe them) and that is one of the main reasons that I find him horrendous.

      On that note, medication can help people in certain circumstances. I credit it with saving my life; however, that was not without a trade off. I have now developed neurological and cardiac effects though, luckily, they are easing as more time passes since I last took the medication. Patients do need to be more informed, if at all possible, of side effects and doctors need to monitor the side effects more closely.

      Erika
      BP I w/ psychotic features / Schizoaffective Disorder

      • http://www.facebook.com/profile.php?id=671966854 Ria Byss

        oh no problem. I did not post in order to contradict you on the hippy therapy thing, but to amplify on it. (did I use the right word?)

        • Erika

          Alright, just making sure. I know the post came out a bid oddly and wanted to ensure there was no confusion.

  • Lois Earley

    Erika, the problem I find with your examples of illnesses is they don’t involve behavior. While I would adamantly disagree with her reasoning, I’d defend my daughter’s right to not take medication in all the examples you gave. Again, I would disagree with the choice, but I’d also defend her right not to take medication for psychosis. But when her psychotic thoughts have her acting in an extremely disruptive and/or dangerous way, and there is absolutely no reasoning with her to get her to stop the behavior, then I stop defending her right and start defending mine and other people’s rights to safety and/or a peaceful existence. 

    If parents could get their seriously mentally ill adult children into any form of alternative therapy and it would work, we’d all all be there. We are painfully aware of the side effects of the medication and we don’t like it any more than you do. If MindFreedom or the Bazelon Center or SAMHSA or Robert Whitaker or  any of these organizations that are so against AOT would give me any viable alternatives to help my daughter, I’d choose that route over the medicine any day of the week. But so far, any advice I’ve been able to glean from them would have my daughter living on the street eating out of a dumpster, as would the Recovery Model as it states her care has to be self directed. Lack of insight automatically removes the ability to self direct your own care.

    • Erika

      Lois,

      I am sorry to hear of your family’s – and your daughter’s – struggles and hope that things have improved since the period you described. This is, in no way, an easy road to travel.

      My response to DJ JAffe has, at this time, not yet gone through; however, in it I point out, in response to his examples of minors and those with dementia, that Kendra’s Law does not require lack of insight or incompetency, nor is it a hearing on such things. If it did, my examples would not stand the same ground: if someone, for whatever reason, has the inability to make medical decisions for themselves, a guardian or physician is allowed to make the decisions for that person. I would be more willing to support AOT if it required a competency hearing to be done first and have that be a strict requirement. Even then, though, I hesitate. Incompetency and lack on insight would have to be strictly defined. Somebody simply making the claim that mental illness isn’t real (and, thus, theirs isn’t real) and they are supportive of other treatment means, though not an opinion I agree with, should not be put under that umbrella. Defendants should also have access to quality lawyers and, in all honestly, most mental health lawyers don’t give the time or effort. If strictly defined, however, I would accept AOT for those ruled incompetent. Right now, however, all that is needed, essentially, is evidence of instability (which, though behavior can meet the qualification, is not the only way for it to be met), refusal of treatment and likelihood that person would benefit. That brings the above examples into play again. Legally, if their illnesses were mental instead of physical, they would fit the criteria. Their medical state is unstable, they are non-complaint with treatment (leading to worsening of symptoms, hospitalization, etc) and would likely benefit from outpatient treatment. If you support their right, you cannot support Kendra’s Law – and, I assume, similar laws in other states – *as they currently are*. You can argue that most cases petitioned under such laws would also meet the criteria for my proposed revision. It doesn’t matter: the legal protection is needed. To give more comment on my situation, I went off medication – with my doctor’s support – due to medical reasons. I am now chronically ill because of medication and will likely develop further complication in the future because of it. It’s also clear that I really can’t take most psychiatric medications. It is what it is and I can’t change it. Nevertheless, though I am stable now, it is likely I will be hospitalized again in the future; it’s the nature of the beast. I would prefer to be hospitalized than take anything. Yet, under Kendra’s Law, if I have that happen enough, I can be petitioned under AOT. That’s not OK. I also pointed out in my response that the ethics of something is not always dictated by the outcome, which is an important and often uncomfortable point to make. Does Kendra’s Law improve lives? To some extent, absolutely. I gave the example, however, of a race riot broken out after a man of color supposedly assaults a white women. It would reduce suffering and promote the best outcome, overall, to accuse and convict an innocent man; the riots would stop and less people would end up injured or dead. Yet, most of us would not consider this OK. In evaluating the morality of something, we look at things other than outcome – we also look at justice and rights. “It works” or “it helps” is not enough, from an ethical standpoint, to justify AOT. On that note, there are quite a few programs I do support. Drug and Mental Health Courts, for example, I think are wonderful things and should be implemented nationally. I also believe we need more community funded services – drop-in centers, sliding scale treatment, vocational and educational programs, housing, etc – available. There need to be transition programs – from hospital to outpatient, prison to living outside, etc. Insurance companies need to actually pay for care. And so on. Also, you are misstating the Recovery Model. Though there are some supporters of it (such as those in the Ex-Consumer/Survivor movement) that disagree with AOT, it does not inherit say that care must be 100% self-directed. Under certain circumstances (incompetency, for example), many would still argue that AOT is OK. Once a person is petitioned under AOT, however, The Recovery Model would say they need more than simply medication. They would need housing, to build relationships, learn coping skills, skills for independent living, perhaps vocational or educational opportunities, a sense of meaning or purpose (through hobby, volunteering, work, relationships, whatever it may be for that person), to be educated on the treatment they receive (side effects, etc), to be asked and able to give input (“this drug causes X, Y, Z, can we try something else?” or “I don’t like this doctor, can I switch?’). All of this, to me, is common sense. Simply giving someone medication and fixing the chemical imbalance is not enough to achieve true recovery. Every person will have their own limits and abilities and they must be met at that level; but, though important to many patients, it is not so simple as giving a drug. This, however, is what Torrey speaks against and what Torrey lobbies against (or has in the past) and that is why I despise him.

  • Erika

    I just re-read what I wrote. First, I apologize for the formatting – for some reason, spacing and paragraphs are not going through.

    Also, I misused – without thinking and by accident – the word “defendant”. Obviously, someone petitioned under AOT is not a defendant.

    http : // en. wikipedia. org /wiki / Recovery_model htt p : // www. socialworkers.org / practice / behavioral_health /0206snapshot. asp (remove spaces) describe the recovery model. Though it does talk about consumer choice, the former article states (this is an article directed at social workers, keep in mind):

    “Beyond clinical judgment or scientific evidence, concerns arise
    if a consumer’s decision is likely to cause harm.  We
    have a responsibility by our Code of Ethics to intervene “to
    prevent serious, foreseeable, and imminent harm to a client or other
    identifiable person” (NASW, 1999, p. 7).  A decision to
    not go to a day-program for a certain day is unlikely to cause such
    harm.  Refusing medications, on the other hand, has a possibility
    of more serious harm, depending on the medication.  Each case
    needs careful consideration and consultation with other relevant
    providers.  When a consumer’s decision is unlikely to
    cause serious harm, our job is to help educate them as to possible
    benefits and consequences of their decision (including if that means
    a possibility of involuntary hospitalization), but in the end to
    let them make those decisions.  When a decision is likely to
    cause serious harm, then we should, as always, intervene so as to
    prevent the harm. ”

    Incompetency and danger to self/others would be situations in which other parties could intervene. Once forced into treatment, however, the treatment plan should center on encouraging and allowing a certain amount of input and choice (as given in my first example).

  • http://mentalillnesspolicy.org DJ Jaffe

    You are correct. Torrey used to sound like Tsasz. But that was before the days of MRIs, Spect Scans, neuroanatomy, and other scientific advances. Torrey advanced with science. Tsasz/Breggin choose to ignore it.

    • Spiritual_emergency

      Jaffe — you and I both know that science has never been able to demonstrate there is a chemical imbalance in the brains of people considered to be mentally ill.  Any changes detected in MRI studies have been small and subtle and some of these same “abnormalities” can be found in individuals who are not considered to be mentally ill.  It’s not the evidence we need to see in order to be able to call it conclusive.  We also know that anti-psychotic medications themselves have been implicated in a reduction in cortical volume and gray matter. 

      As for Torrey advancing with the science… No.  Unless the man is producing recovery, he’s not advanced.  My idea of advancement is what they’re doing in Lapland: 

      “They’re down to 2 cases per 100,000. A 90% decline in schizophrenia! And why? Because their first-episode cases are not becoming chronic.”
      - Robert Whitaker, author of Anatomy of an Epidemic

      The rate of schizophrenia in that particular area of Lapland had been 35/100,000.  Since the initiation of Open Dialogue Treatment, the rate of schizophrenia has fallen to 2/100,000.   Within 2-5 years people are back to work or school with no troubling symptoms.  What’s more, only about a third of all patients were ever exposed to anti-psychotic medications.  Families are intimately involved in the Open Dialogue process and they’ve actually had to close down some of their hospital wards.  See, to me, that’s advancement because it addresses so many needs: people get well, family members have a voice, there is a substantial reduction in medication risks, and people aren’t becoming chronic so society is spared the burden of a lifetime of financial support.  

      Earlier you had stated that you felt 50% improvement was a worthy goal.  I think you’ve set the bar too low.  I believe 80-90% recovered is an acceptable standard to aim for.  Torrey has never been able to produce it which is why I believe he’s an inferior clinician.  Meantime, there’s also his flip-floppiness approach, his deliberate lies, his stigmatization of those deemed to be mentally ill and those troubling links between the TAC, the Stanley Medical Center, Joseph Biederman and the hundreds of thousands of children who are now being forcefed anti-psychotic medication while Biederman and his cronies get rich. 

      I don’t like people who profit at the expense of children, Jaffe. 

  • Lois Earley

    Erika, I appreciate your opinion. I agree, it is a concern that you could be given meds when you can’t take them and I know that’s a very real possibility of having that happen. I’ve had many of these conversations. Thank you so much for making such a good point. I will be thinking about this. Having said that though, I would hate the standard to be a person has to be deemed incompetent before we can help them. Most people who are actively psychotic & taken to the hospital have probably been involved in some pretty erratic behavior & could easily be deemed incompetent, but once medicated are no longer incompetent. So I dunno, these are major issues.

    Thank you also for posting the Recovery Model definition as it would be used by a social worker. I’ve never seen that before. Very interesting!