Whitaker: Has NAMI Opened a Pandora’s Box?

namiwhitakerThe controversy that Robert Whitaker caused at the national NAMI convention continues to spark conversations about the use of anti-psychotics. Here’s yet another report, this one from my friend and NAMI award winner Kathy Brandt who has contributed to this blog in the past.  You can read Kathy’s blog and learn more about her books at www.KathyBrandtAuthor.com

 Did NAMI act irresponsibility by giving  Whitaker unmerited credibility when it asked him to speak or did it provide its members with a much needed different point of view? I welcome your comments, which I know will be both thoughtful and polite.

The Case Against Anti-Psychotic Medications As Told By Robert Whitaker

By Kathy Brandt

Robert Whitaker, author of Mad in America, spoke to a full house at the NAMI Conference in San Antonio on Saturday.  For many his message was a hard one to hear.  I was among them, a parent, whose son, Max, sat beside me.  He’s been on and off antipsychotics for more than ten years to treat the psychosis that comes with his bipolar episodes.  Whitaker was telling us that might have been a mistake.  The key word being might.   His review of various research studies seems to indicate that a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis.

We all know that for years antipsychotics have been the medications of choice and that most of those with schizophrenia have been told they would need to stay on them forever.  The research seemed to back that up.  Yet Whitaker’s review found that those studies were flawed.  Worse, he says that using antipsychotics long term makes one more vulnerable to future psychosis.  It’s called “oppositional tolerance.”  While antipsychotics initially block the uptake of dopamine (the substance believed to cause problems), our brains eventually find ways to adjust, building new receptors and becoming even more sensitive to dopamine.  So what did I hear?  I heard that the medicine that was supposed to make those with schizophrenia better was making them worse.  Long term use of antipsychotics wasn’t  just ineffective, it was dangerous.

I resisted this message.  Though the studies he cited applied to schizophrenia, I couldn’t help wondering how it applied to my son with bipolar disorder.  I’m pretty sure every parent, family member, and person with mental illness who was taking antipsychotics was asking the same thing.  I’m not going to rehash Whitaker’s findings here.  You can find them elsewhere on the web or at NAMI.org/conference.

As a parent, I wanted to find flaws and I have many questions:

  • Does Whitaker’s review of the research tell the full story?  Are there gaps?  Is there contradictory evidence?
  • Does it apply to illnesses other than schizophrenia?
  • What particular antipsychotics were included in the studies?  Is it necessarily true that all have the same outcomes?
  • If his findings are correct, then what do we do about it?  Should those on antipsychotics be slowly weaned?
  • If there have in fact been brain changes as a result of the medication, can they be reversed?
  • And how on earth do we treat people who are psychotic if not with antipsychotics?

But in the end, his research was compelling.  Even more so when I heard that Finland, which adopted selective-use protocol of antipsychotics in 1992, has the best-documented long-term results in the western world.   I feel that NAMI has the responsibility to support further investigation and open up the discussion for a full airing from all stakeholders.

Whitaker’s findings, if true, would require a new paradigm of treatment, one that might require that someone who is psychotic be given “asylum,” or “refuge,” a place to rest and recover with limited or no antipsychotics, using other effective treatments that include more than just medication.  That seems impossible in our country, where the mental health care system is practically non-existent; where people are hospitalized for 3-5 days and released with a bag of samples and prescriptions; where insurance companies dictate release, arguing that recovery can take place outside of the hospital; and where too many psychiatric units are just holding tanks where little good treatment occurs.  If Whitaker’s findings prove true, it will take decades to address them and it will take money.  How can that happen in a country where we don’t provide even minimal care and where funding continues to be cut?

By the time Whitaker concluded his talk, the room was heavy with anger, despair, and fear.   Some people were angry at Whitaker for presenting studies that could prove inaccurate and yet could have such an impact on so many.  Others were angry at psychiatrists and big pharma for promoting medication that could be harmful.  Most difficult for those with mental illness and their families, me included, was the fear that the medicine we have relied on was damaging and that we had put our trust in the wrong hands.

My son, who as you’ll remember was sitting right beside me during Whitaker’s talk, is angry, very angry about what he heard, angry at doctors and the pharmaceutical industry.  And I am scared that he will decide to quit taking the one antipsychotic he is on, and I’m confused about whether he should.  He’s been stable, healthy, and happy for several years.  What will happen if he stops?  Will he fall back into the pit of mania and psychosis, end up on the streets as has happened so many times before?  He’s agreed he’ll speak with his doctor about what he’s heard, but I find myself wishing that our family could move to Finland.

 

 

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.

  • http://beyondmeds.com/ Monica

    thanks Peter…I am so glad this conversation has started. I’ve responded to Kathy on her blog and I also did a post on mine: http://wp.me/p5nnb-9p3

  • Roberto

    I was there. Whitaker is probably the most reasonable anti-anti-psychotic voice and dialogue is good. BUT. His research can be challenged, but there were no counterpoint presented in the session (Hardly a dialogue). His position essentially boiled down to “fail first” with non-medication strategies and/or eventually “wean yourself off” medication” without discussing the risk of serious brain damage if immediate intervention/stabilization doesn’t occur or if after being “weaned” an additional psychotic episode (relapse) occurs–causing a person to “go so deep” that recovery becomes hopeless. (I fall into the second category. I hate taking meds, but made an informed decision to stay on them after 15 years after discussing with my comments that get posted on his blog, but he has not posted that position on his own blog. Let him become a NAMI member and acknowledge the needs of many people who struggle with mental illness (Medicaid, housing, etc.( if he really wants a dialogue and acknowledge that Finland isn’t the United States when it comes to social fabric.

  • BalanceDVoice

    Robert Whitaker is a reporter, not a medical researcher or a scientist. If one looks hard enough you can find a study to support any viewpoint. What Whitaker lacks is the ability to critically analyze the studies he is using to support his conclusions. Where is the discussion about Finland’s civil commitment laws and how they differ from the US? The following is the criteria for commitment in Finland:

    Finland: Involuntary commitment requires three criteria: 1) severe mental illness with impaired insight; 2) that a lack of treatment would worsen the condition or endanger the safety or security of the patient or others; 3) and other treatments or services are insufficient or inapplicable.
    Note that the criteria do not depend solely on a finding of danger to self or others. This leads to the next critical questions: how long does it take before someone is hospitalized in Finland compared to the US? Does not having to wait until someone gets to the point of being a danger make a difference in how soon they receive the help they need? Also, what was the severity level of the psychosis in the individuals in Finland’s study? The fact is that you cannot generalize the results of a study if the populations that are affected are not similar.
    I read Whitaker’s book. He makes it sound like mental illness almost didn’t exist before there were anti-psychotics. The anti-psychiatry movement loves to blame antipsychotics for causing psychosis. The elephant in that room refuses to acknowledge that individuals certainly don’t get hospitalized in the US until they have been showing signs of psychosis to the extent that they are considered a danger to themselves or others. Note that the psychosis existed before any medications were given. Accounts of mental illness date back for centuries. If people were cured by hospitalization alone why were so many people languishing in asylums? One could argue that they didn’t get the therapeutic services required but it still doesn’t explain why he states that everyone got better and then led normal lives.
    Do I think that there is merit in looking at how we treat individuals with mental illness? Absolutely! Am I willing to allow that some individuals may get better without initial antipsychotics? My answer is yes. However, how is that going to occur in our society? Civil commitment laws prevent involuntary hospitalization until someone is a danger. For many of our family members this has resulted in long delays before treatment. We do know that the longer someone is ill will make it more likely that they will have greater residual effects of their illness. Also, insurance companies will not pay for hospitalization beyond the first few days. Where are people going to go? We have already seen that deinstitutionalization did not result in adequate community services. Where are the funds going to come from that will pay for long-term hospitalization? Also, how many individuals will want to stay in the hospital as long as the 18 months that Whitaker mentioned?
    Finally, those of us who have family members who lack insight into their illness feel that Whitaker’s book will result in further harm. Encouraging people to stop medications that they need is irresponsible. Do they have side-effects, absolutely. However, for some individuals with mental illness homelessness, violence, and incarceration are also side-effects of not taking medication. Those of us who have family members who fit into these categories will never be willing to say that it’s ok for them to be off their meds. Ever.

    • cannotsay

      Finland is the worst offender when it comes to involuntary commitment in Europe by far. I could post a link to document this but it would be moderated. At 200 involuntary commitments per 100000 inhabitants, the rate is about 20 times higher than in the US. So no thank you. My crusade is against psychiatry, period. I do not believe in being “forcibly drugged” nor in being “forcibly open dialogued”.

  • Terri Wasilenko

    I do not think Mr. Whitaker’s perspective is realistic when you consider the lack of (emotional, social and financial) supports available to individuals who choose to medicate and receive help to sustain a living. These individuals barely get assistance so what must it be like for someone who chooses not to acknowledge a brain illness and muddle through life without supports. Medication is necessary when the brain is out of commission.

    Terri

    • Jennifer Robinson

      I agree. There are no respite services in Florida, no Open Dialogue treatment in the US, and what are we supposed to do, move to Finland because some study indicates their treatment works better?

  • Marvin Ross

    I commented on Ms Brandt’s Blog and had this to say:

    Thanks for the update of his talk. I had
    heard that he toned down his message but probably not. I’ve done two Huffington Post columns on Whitaker and the Mad in America people and have been quite critical of what seems to be rather selective interpretations of the research. These are the links http://www.huffingtonpost.ca/marvin-ross/treating-schizophrenia-_b_2948969.html

    http://www.huffingtonpost.ca/marvin-ross/schizophrenia-treatment-medication_b_2217887.html

    And this is my current blog on the need for science: http://www.huffingtonpost.ca/marvin-ross/mental-illness-canada_b_3491511.html

    You should also look at the blogs written by Erin Hawkes who is a neuroscientist with schizoprhenia at

    http://www.huffingtonpost.ca/erin-hawkes/

    The Finland experience seems to be overblown. This is the most recent publication that I can find at https://docs.google.com/file/d/0B4s9BiGlRUCzRm1rRUlCMV9IZXM/edit

    What they do is not much different from what other early intervention
    programs do in other countries. In their data, they only have 95
    patients of whom only 36 had schizophrenia

  • Kathy Brandt

    Thanks so much Pete for posting my blog. To answer your original question: “Did NAMI act irresponsibility by giving Whitaker unmerited credibility when it asked him to speak or did it provide its members with a much needed different point of view?”

    I believe NAMI acted responsibly by asking Whitaker to speak. We need to have open dialogue about the issues. I hope NAMI will support further research from impartial elements in the mental health community — those without political agendas, financial or self-interests at stake. We need honestly and integrity, not vitriol. We parents simply want the best for our kids.
    Kathy Brandt

    • cannotsay

      As long as NAMI continues to receive the vast majority of its funding from Big Pharma, all you will hear form NAMI is “all drugged, all the time by force if necessary”.

      • Steven Donner

        NAMI does not receive the vast majority of it’s funding from pharma. Get your facts straight. All of the information is posted online, ON THEIR WEBSITE.

        • cannotsay

          I don’t know about the last couple of years, but when Chuck Grassley did his investigation it was found out that 3/4 of NAMI funding came from Big Pharma in 2008. That is the very definition of “the vast majority of its funding”. I could put a link to the NY Times article that speaks of that, but it would be moderated. Similar percentages (higher than 50%) were the norm in the years prior. So if NAMI is moving away from that, great, but it seems a little bit unbelievable. NAMI is basically a front group of Big Pharma. It is not accident that it promotes the same type of policies: all drugged, all the time, by force if necessary.

        • Rossa Forbes

          Please show us ON THEIR WEBSITE where the money comes from. If NAMI is finally weaning itself off pharma $$, good. This is a tribute to the tenacity of its critics. ANY money from pharma would be considered a conflict of interest.

    • Kristen

      I feel the same way. For so long the only message from NAMI was that we were supposed to take our meds without question. We have needed another voice to balance it out. The medications while helpful to me, have some pretty serious side effects, and no one has really wanted to talk much about that. I like my psychiatrist but “I” was the one who had to take the initiative to get my hemoglobin A1C and lipids checked. I knew to have this checked because I had read about the metabolic risks. Both my lipids and hemoglobin A1c were were elevated post antipsychotic use. I think people should ask questions, and had I not asked questions I would probably still be in the dark about the effects of the drugs on body.

      I don’t think it was irresponsible of NAMI to have Robert Whitaker speak, what is irresponsible are the drug companies like Eli Lilly who have been in trouble for hiding data on side effects (i.e. Zyprexa). Honestly, as a patient it is hard to know what to trust when we have drug companies behaving in less than ethical ways.

      • Jennifer Robinson

        Thank you for your comments; I don’t think I’ve had my hemoglobin or A1c checked either.

        • Kfisten

          Hi Jennifer,

          My hemoglobin A1C show I’m in the pre-diabetic range, and my triglycerides & LDL cholesterol are elevated for the first time ever. It sucks, because I had finally found a medication combination that worked really well. I can’t win for losing.

  • cannotsay

    “Did NAMI act irresponsibility by giving Whitaker unmerited credibility when it asked him to speak or did it provide its members with a much needed different point of view? ”

    Interesting question. If the question pertains to NAMI’s status as a front group for Big Pharma, obviously it was a bad idea. Many members heard, perhaps for the first time, that there is a lot of evidence to question NAMI’s mantra of “all drugged all the time, by force if necessary”.

    Now, if the question pertains to informing the NAMI membership about how they have been lied to by Big Pharma and its crooks at the NAMI leadership, then it was certainly a great idea. Forget Whitaker, even Tom Insel, the director of the National Institute of Mental Health, now admits that nobody has ever established a biomarker or a “chemical imbalance” for any of psychiatry’s invented diseases.

  • Kathleen Pfeifle

    wow, thanks for keeping us informed

  • Ewa Seiler

    I am new to your site, but not knew to mental illness which I call thought disorder. Our family has been struggling with this for many years. We went the Emergency Room route (I would like lock up all this kind a caring psychiatrists). Hospital route (after which PTSD took hold-who would not be traumatised if you are taken to the hospital against your will)–one of the “emergency treatment recommended by NAMI and all the practitioners…

    Now it has been almost 10 years where our loved one IS OFF all meds. I think it took that long for his brain to heal after injuries done by medication.

    Are we out of the woods yet? No, but now we have other options than meds and no longer have to hear NAMI’s mantra: Have you taken your meds!

    I am searching now for someone in our area to be trained (I cannot-only institutions can) in Cognitive Enhancement Therapy (CET). I have contacted the Ohio College after the presentation at NAMI VT conference. This gives me hope. People who are afflicted by this illness are shunted into the outskirts of society by all (which includes medical profession). Drug companies are making huge profits AND NOT TELLING THE TRUTH! What are the long side affects of these drugs?They are tested for 3-6 months and given for a lifetime!
    Your blog might give us an answer to that.

  • cannotsay

    I basically agree. Only naive people can believe that Big Pharma contributes to the majority of NAMI funding but that Big Pharma has no say on the type of policies that NAMI advocates. Whether the influence is explicit or “unconscious”, ie NAMI promotes policies that benefit its largest benefactor unconsciously, no sane person can honestly claim that NAMI is not influenced by Big Pharma. To be honest, I see outrage here and at Kathy’s post but I don’t think that either will do much going forward. This is just a temporary moment of outrage. Pretty soon we’ll see both again promoting Big Pharma talking points: all drugged, all the time, by force if necessary.

  • Judith Logue

    So what could happen if this Pandora’s box? The truth? Anyone with influence in the treatment areas of the so-called mentally ill need to research psychotropic medications and their effects, widely and deeply. It is massively irresponsible and medieval to use that influence BEFORE doing such research. The mentally ill are THE MOST vulnerable. Open the box and learn the truth.
    Start by asking psychiatry what they REALLY know about the effects of their medications. Some patients are court ordered and many, many are coerced, by threat of losing social services or hospitalization, if they breath a word of reluctance to take medications.

  • John

    You realize that if NAMI didn’t receive any money from Pharma, the education programs wouldn’t exist? The money to support an organization has to come from somewhere and NAMI’s supporters are not often the most affluent.

    • Rossa Forbes

      That’s what’s called conflict of interest. Tough. Mind Freedom and other organizations that promote choice and alternative treatment survive on the limited abilities of its members to pay.

  • pkomarek

    I think the point is that no one should be complacent about the way mental illness plays out in America today. It is an area of great uncertainty and controversy, where things are money-driven and work half the time. What’s different now is that we are rediscovering the humanity of people with tough symptoms, and finding out that they might just understand what works for them. In many ways, this changes everything.

  • Katie Valentino

    As in all things in life, psychiatry comes down to balance. Whitaker’s presentation brought out one extreme of the debate. I believe that shows NAMI’s committment to opening discussions, no matter how controversial. On the other hand, it can be questioned as to whether this was the best forum for such a speech as family members and patients were present. Would this be better severed to have been presented only to professionals to prevent patients from grasping onto this view as a reason to stop their medications?
    The best treatment is a balance of long-term care, residential, medicaiton, etc. Many people can be safe in a stable, structured and monitored environment. Unfortunatly, our society went to far too the extreme in the early part of this century in terms of abuses in such facilities. Now, we are still heading towards the opposite extreme of protecting the rights of the mentally ill to the point that we fail all members of society. There is no doubt that psychotropics allow some people to function and remain safe. There is also no doubt that many could remain safe within their psychosis without psychotropics if given an environment that will allow them to do so. Hopefully, we can move towards having more hospitals available for those who need to live in such an environment. Affordable, properly staffed facilities would serve us all.

    • AA

      Hi Katie,

      Let me ask you a question. What if you were on a long term treatment and all of a sudden, someone like a Bob Whitaker or a person of similar statute started expressing concern about long term side effects. Unfortunately, you don’t learn about this until 10 years down the road because this person only presented the information to professionals who of course didn’t share the info with patients.

      You now have devastating side effects that maybe could have been prevented if you had stopped the treatment alot easier. Of course, you might have chosen to continue but my guess is you would be angry that you weren’t give the information to make a choice.

      Yet, you are suggesting that people with an “MI” label lose that right. Frankly, even though I am sure that wasn’t your intention, it comes across as very insulting and patronizing. It it is like when you have the “MI” label, you lose all rights to be treated as a person.

      I would have loved to have had fully informed consent and not wasted 15 years on psych meds. It turns out I had sleep apnea which is a whole other issue.

      Anyway, It was only when I realized the horrific side effects that I was experiencing were due to the meds that I decided to get off of them. I received zero support from my psychiatrist and it was only because of the antidepressant withdrawal boards that advocated a very slow taper that I was able to safely get off them.

      I know there are alot of grays in these issues. But in my opinion, keeping the truth from patients is non negotiable. People’s lives depend on it.

      • Katie Valentino

        My intent was not to appear patronizing nor do I believe patients with a mental illness lose any right. Hence, I brought the issue of the most appropriate forum in as a question. The only thing that I am suggesting is that the mental health community be sensitive to the continuum of mental health issues and stability present at such a large event. Some things are best discussed with a more targeted audience. I’m not saying that this would have been better in this case. Your experience is one that ought not to have occurred and through education of all hopefully such instances will stop occurring. Often, it is not the intentional with holding of information from the patient that causes such experiences but the lack of training and knowledge given to the doctors, nurses, therapists, etc. The truth, especially in such a field, is very subjective. How many truths do we share before it is irresponsible? A very fine line. Which is why I am forever grateful for NAMI as I can refer clients to this organization and know they will get a variety of truths. Together, we can figure out which is best for that individual patient.

    • Duane Sherry

      Katie,

      You missed the whole point.
      Recovery rates are dismal with the conventional approach.
      Drugs and incarcerations do not promote healing.

      Non-drug approaches work much better.
      They are safer and far more effective.

      Duane Sherry, M.S.
      Retired Counselor

  • sandra

    I took antipsychotics for 1 week, I was misdiagnosed as having Bipolar. It laid me flat on my ass for 2 weeks. Bad stuff

  • jas

    Finland is a very small country compared to the U.S. How can you compare a very small country that has an abundance of resources and money for each and every citizen as opposed to the U.S. that barely (if at all) covers meds & treatment for their citizens? This can’t be an equal comparison: I would challenge the stats on his findings…