Spring, Family, and an Interview

Spring always has been my favorite season and this weekend was beautiful in the Washington D.C. area. It is difficult to imagine that only a few weeks ago, Patti and I were debating whether or not we needed to buy a snow blower because of the three feet of white powder  in our front yard.
Not only was the warm weather a welcome relief but my only brother, George, flew  in from Florida to visit and spend time with our parents, Elmer and Jean, who are 89 and 90 respectively. We persuaded my folks seven months ago to sell their home in Spearfish, South Dakota, and resettle near Patti and me. Having them here has been a blessing, especially since I only used to see them sporadically when they lived so far away. If you are wondering about my mother’s health, she fixed a full turkey dinner with all of the trimmings to celebrate my brother’s visit.
Monday also is big day here in the Luzi-Earley household because my son, Evan, turns 22 years old on the 22nd. He and his older brother, Tony, are the brains behind my webpage and Evan recently engaged in a conversation on this site under the blog “Why Won’t You Take Your Medications?”  I was proud of his questions and also was thrilled that the blog attracted a record number of comments.
Medications continue to be a heated topic in the mental health community — and rightly so. Sunday’s  Washington Post   business section published a story by David Evans from Bloomberg News about how some pharmaceutical companies have gotten into trouble for off-brand marketing — promoting medications for treatment of symptoms beyond what has been approved by the FDA.
This actually is not a new story since Rolling Stone published a piece a year ago about the same subject.
  Anyone who understands basic math can figure out why companies engaged in off brand marketing. According to the National Institutes of Mental Health, an estimated 2.4 million Americans have schizophrenia or about 1.1 percent of the adult population. Another 5.7 million Americans, or 2.6 percent of the population, have bipolar disorder. While those are sizable numbers, they are not as large as the 20.9 million Americans that NIMH claims have depression. Little wonder that drugs approved by the FDA for treating the symptoms of bipolar disorder and schizophrenia ended up being pushed off-label for the much bigger depression market.
I have seen my son when he stops taking his medications, so I know how important his anti-psychotic pills are to his overall mental health, but I also worry about the long-term impact of medications. Regardless of how safe the FDA says a medication might be, everyone is different and no anti-psychotic medication should be taken lightly.  Pushing off-brand marketing makes the public even more suspicious.
Ironically, I have had the opportunity to speak to several top executives at Eli Lilly during the past year and I have found them to be both apologetic about the past and extremely careful at public events to make certain no off-brand marketing was done.
As I mentioned in last Friday’s blog, I enjoyed speaking at  Jon E. Nadherny  symposium in Santa Cruz where I met Lizzie Simon. She writes a blog for Psychology Today and after our appearance together she sent me several questions to answer for the magazine. I am reprinting her blog here because I thought you might enjoy reading both the questions and answers.
I also want to remind those of you who live in the Washington D.C. area that Wednesday, Patti and I will be attending CrisisLink’s annual fund-raising event between 6:30 p.m. to 10 p.m. at The Clarendon Ballroom, 3185 Wilson Blvd., in Arlington, VA. If you can support this worthy cause please come by and say hello.
Published on Psychology Today (http://www.psychologytoday.com)
What’s Driving Pete Earley Crazy
By Lizzie Simon     Created Mar 18 2010 – 7:04am

Pete Earley has been described as one of a handful of journalists in America who “have the power to introduce new ideas and give them currency.” A former reporter for The Washington Post, he is the author of nine nonfiction books and three novels. His book, CRAZY: A Father’s Search Through America’s Mental Health Madness, tells two stories. It describes his attempts to help is college age son, Mike, after he becomes ill with bipolar disorder and is arrested. It also describes a year that Earley spent at the Miami Dade County Jail where he followed persons with mental disorders, who had been in jail, out into the community to see what sort of services they received. His website is www.peteearley.com. 

LS: You’ve written several bestselling nonfiction books as well as works of fiction; what surprised you most about writing a memoir?

PE: I didn’t want to write a memoir. I was going to write an expose about how well- intentioned involuntary commitment laws, a lack of community treatment, and deinstitutionalization had turned jails and prisons into our new asylums. But my editor rejected the first draft and said: “Pete, you can’t write this book without putting yourself in it. You’ve got to take us on a journey with your son.” Journalists are trained to keep their feelings out of stories so I was instantly uncomfortable. I was also worried about pushing Mike into the spotlight. The first time I typed his name on the computer screen, I actually began to cry because everything that was happening just overtook me. What I learned is that you can’t write a successful memoir without being gut-wrenching honest, otherwise readers who have walked in your shoes will know you’re holding back. It was the most painful book I’ve written, and the most important. And I also should add that it had a horrible title. CRAZY refers to our system, not my son, but people didn’t get that.

LS: What were your conversations with your son like about the book, both while you were writing it, and once it was finished.

PE: Mike asked me only one question when I said I wanted to write a book about his breakdown: “Is telling my story going to help someone else?” It was incredibly generous of him. Of course, neither of us knew about the problems that we were going to encounter as he struggled with the symptoms of his illness. But my son never held back, never asked me to stop writing, and he encouraged me to tell everything that happened. Much of it was embarrassing. When the book was published, Mike started reading it but stopped after only a few pages. That’s the past, he told me. To this day, he has not read it.

LS: I’ve seen one of your impassioned speeches–what angers you most about the US health care system?

PE: People with mental illnesses are dying on our streets. More than 350,000 are in jails and prisons. Most are people whose only real crime is they got sick. What makes me angry – no, what makes me livid – is that I believe we know how to help most persons who have a mental illness. We just aren’t doing it. We know it takes more than sticking pills into someone’s mouth. It takes housing, jobs, being connected to a community and I want it all – affordable psychiatric care provided by doctors who are not being pushed by insurance companies to write a prescription and shove a patient out the door. Only two of the nine psychiatrists who have treated my son have bothered to learn more about him than his name and symptoms. That’s shameful! We need better medications, but we also need assisted outpatient treatment teams, Housing First, clubhouses like Fountain House, evidence based practices, self-determination programs, jail re-entry programs such as F.U.S.E. in New York, mental health courts, peer to peer programs, Crisis Intervention Teams. Every possible program that helps people recover should be offered to them.

LS: Involuntary hospitalization is one of the thorniest topics inside the mental health movement—how do you define your position on it?

PE: Forcing someone into treatment should be the last step. It’s best when someone becomes empowered and chooses to take charge of their own recovery. But Mike didn’t realize he was delusional when I tried to help him and the “imminent danger” criteria stopped me from intervening -even after he broke into a house to take a bubble bath and was arrested. This debate is not really about whether or not we should force someone into treatment. That’s what involuntary commitment laws do and, as a society, we have adopted these laws because we recognize they are needed. The dispute is over when we will force someone and I think “dangerousness” is a horrible legal criteria that contributes to homelessness, incarceration and death. There’s nothing noble about letting a person who is clearly ill die on our streets. We should offer the least intrusive help first, such as Housing First, and then gradually move up the scale as a person becomes more impaired and disabled to involuntary commitment in hospitals and assisted outpatient treatment. Impairment, not dangerousness should be the criteria and families and consumers should be more involved in deciding when someone needs help because they have the most to lose. Ask yourself what you would do if your son was psychotic and homeless and cowering under a bridge? Would you walk by and shrug? Or try to help?

LS: What countries do it better than we do?

PE: Our health care system squanders money because it is designed to react to emergencies. Homeless shelters, hospital emergency rooms, jails, prisons – these are expensive and ineffective ways to intervene and there are people who clearly profit from this cycle of continued suffering. Iceland does a much more humane job, in part, because it’s a small population, it has socialized medicine not driven by profit and it doesn’t have our abysmal asylum history. Going to the doctor about a mental disorder was no different from seeing someone about a broken foot when I visited there.

LS: Can you tell us about a few of the most promising mental health programs in the country?

PE: I’m excited to be on the board for the Corporation for Supportive Housing which is helping end homelessness. You can’t talk about mental illness without talking about homelessness and addiction. Housing First programs, such as the LAMP in Los Angeles, have an 85% success rate with the toughest population. Crisis Intervention Training should be in every community. We need re-entry programs so prisoners can move into treatment from institutions. I’m an advocate for self-empowerment and self-determination too. And I’m especially thrilled that the actress Glen Close and actor Joey Pants are putting a fresh face on mental illness by speaking out against stigma. Right now, the face of mental illness is a psychotic gunman on the Virginia Tech campus or Norman Bates. We need to change that image by better educating the media and Hollywood. We need the faces of mental illness to be persons such as Terry Bradshaw, Mike Wallace, Patty Duke, Nobel Prize winners, and everyday people such as my son Mike.

LS: Any last thoughts? New projects?

PE: My agent sent a book proposal called HOPE to twenty New York publishers. It was about innovative mental health programs that are changing and saving lives. It continued Mike’s story, describing how he relapsed, was shot with a taser by police, but eventually became a peer to peer specialist! No one bought it. Next, I proposed writing an expose about the more than 200 persons on death row who are clearly mentally ill. Not a single offer. I spent three months in Washington D.C. at a homeless shelter. No one was interested. Sometimes I feel the only way I can get a major publisher interested in mental illness is if I find a character who has bipolar disorder and is also a love-sick vampire attending an English school called Hogwarts. But I’m not giving up. Mike has taught me the importance of resiliency.

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.

Comments

  1. spiritual_emergency says

    @Pete: Little wonder that drugs approved by the FDA for treating the symptoms of bipolar disorder and schizophrenia ended up being pushed off-label for the much bigger depression market.

    The Last Psychiatrist had a good post about this a little more than two years ago…

    2. People are completely missing the point of this paper and all the other recent re-investigations, the true social and clinical consequences of them. For example: they're saying antidepressants are no good. Ok. What do you think doctors are going to use instead? Psychoanalysis? Nothing? They're going to prescribe antipsychotics. Are you listening to me? I'm not even saying this is clinically wrong to do, but do you not see the setup? Abre los ojos, man.

    3. Previously, when SSRIs were being shown to be super effective, people suspected Pharma bias. Now they are being shown to be ineffective, and people fail to see the bias. IT'S THE EXACT SAME BIAS- Pharma. That's why there are popular press stories on this now, as opposed to five years ago. GSK doesn't care that Paxil is ineffective. Do you know why? Because they want you on Lamictal. (Again, this isn't to diminish Lamictal's or antipsychotics' usefulness. I'm just talking politics.)

    Source: http://thelastpsychiatrist.com/2008/02/yet_anot

    @Pete: I have seen my son when he stops taking his medications, so I know how important his anti-psychotic pills are to his overall mental health, but I also worry about the long-term impact of medications.

    Me too. One of the worrisome symptoms we are seeing is rapid weight gain and occasional chest pain. Diabetes is not going to make my child's life any easier than it is now and it will hurt as much to lose my child to cardiac arrest as it would to lose them to suicide.

    I often suggest that medication is one tool of many but there are other tools that can be helpful. For us, we are beginning to explore nutritional therapies. I'm also a very big fan of Jungian based psychology — it was helpful for me and the only individual I know of who is diagnosed with Bipolar Disorder and seemingly functioning well without meds is an individual who also identified Jungian based approaches as being helpful to him. [Ref: http://www.nytimes.com/interactive/2008/07/16/h… Scroll down until you see the young man with the beaming smile]

    @Pete: Impairment, not dangerousness should be the criteria and families and consumers should be more involved in deciding when someone needs help because they have the most to lose.

    I agree that significant others need to have a greater voice in seeking care for children, partners, etc. I certainly like Jaakko Seikulla's approach because the focus was to keep the individual in crisis in the home where their social networks, so critical to recovery, remained in place. It's also far less threatening, less frightening and less isolating to be treated in your home. This approach honors the basic dignity of the individual while also recognizing that the entire family will be thrown into crisis and require support. I don't expect it will become a reality in North America but it may be possible for families to create their own programs of care within their own communities. Edward Podvall's “Windhorse Community” offers a good model that could possibly be adapted for personal use. (Ref: http://www.windhorsecommunityservices.com/)

  2. spiritual_emergency says

    @Pete: Little wonder that drugs approved by the FDA for treating the symptoms of bipolar disorder and schizophrenia ended up being pushed off-label for the much bigger depression market.

    The Last Psychiatrist had a good post about this a little more than two years ago…

    2. People are completely missing the point of this paper and all the other recent re-investigations, the true social and clinical consequences of them. For example: they're saying antidepressants are no good. Ok. What do you think doctors are going to use instead? Psychoanalysis? Nothing? They're going to prescribe antipsychotics. Are you listening to me? I'm not even saying this is clinically wrong to do, but do you not see the setup? Abre los ojos, man.

    3. Previously, when SSRIs were being shown to be super effective, people suspected Pharma bias. Now they are being shown to be ineffective, and people fail to see the bias. IT'S THE EXACT SAME BIAS- Pharma. That's why there are popular press stories on this now, as opposed to five years ago. GSK doesn't care that Paxil is ineffective. Do you know why? Because they want you on Lamictal. (Again, this isn't to diminish Lamictal's or antipsychotics' usefulness. I'm just talking politics.)

    Source: http://thelastpsychiatrist.com/2008/02/yet_anot

    @Pete: I have seen my son when he stops taking his medications, so I know how important his anti-psychotic pills are to his overall mental health, but I also worry about the long-term impact of medications.

    Me too. One of the worrisome symptoms we are seeing is rapid weight gain and occasional chest pain. Diabetes is not going to make my child's life any easier than it is now and it will hurt as much to lose my child to cardiac arrest as it would to lose them to suicide.

    I often suggest that medication is one tool of many but there are other tools that can be helpful. For us, we are beginning to explore nutritional therapies. I'm also a very big fan of Jungian based psychology — it was helpful for me and the only individual I know of who is diagnosed with Bipolar Disorder and seemingly functioning well without meds is an individual who also identified Jungian based approaches as being helpful to him. [Ref: http://www.nytimes.com/interactive/2008/07/16/h… Scroll down until you see the young man with the beaming smile]

    @Pete: Impairment, not dangerousness should be the criteria and families and consumers should be more involved in deciding when someone needs help because they have the most to lose.

    I agree that significant others need to have a greater voice in seeking care for children, partners, etc. I certainly like Jaakko Seikulla's approach because the focus was to keep the individual in crisis in the home where their social networks, so critical to recovery, remained in place. It's also far less threatening, less frightening and less isolating to be treated in your home. This approach honors the basic dignity of the individual while also recognizing that the entire family will be thrown into crisis and require support. I don't expect it will become a reality in North America but it may be possible for families to create their own programs of care within their own communities. Edward Podvall's “Windhorse Community” offers a good model that could possibly be adapted for personal use. (Ref: http://www.windhorsecommunityservices.com/)