Heroes and Villains Populate the Pages of “The Zyprexa Papers”

Heroes and Villains Populate the Pages of “The Zyprexa Papers”

By Susan Rogers

Reading “The Zyprexa Papers”— Jim Gottstein’s riveting, heartbreaking, and ultimately inspiring new book—is like having a ringside seat at a boxing match where the challenger is on the ropes, taking a merciless beating from the reigning champion: It’s brutal and bloody, but you can’t look away.

In this scenario, Jim Gottstein is the challenger. The “champion” is Eli Lilly—a big “Big Pharma” conglomerate—which knowingly peddled its huge moneymaker, Zyprexa (a/k/a olanzapine), to clueless physicians for off-label uses. This was despite the fact that Lilly was well aware of the drug’s dangerous side effects: Weight gain. Diabetes. Death.

Jim Gottstein—founder of the Law Project for Psychiatric Rights and a longtime human rights activist—is the hero of the story. At great personal, professional, and financial cost to himself, he was David to Lilly’s Goliath.

Jim’s involvement with the Zyprexa Papers began on November 28, 2006, when Dr. David Egilman called him (as Jim writes) “out of the blue.” Well, not exactly: The call was suggested by New York Times reporter Alex Berenson, with whom Dr. Egilman was working on a Zyprexa exposé.

Jim explains: “When [Dr. Egilman] found documents demonstrating Lilly had known from the very beginning that Zyprexa caused massive weight gain, diabetes, and other metabolic problems in a large percentage of patients and not only didn’t tell doctors about it, but also actively denied the problems when people started experiencing them, he felt the public had the right to know.”

Even more damning, medical expert Dr. Grace Jackson “found the studies conducted by Lilly to obtain FDA approval had been manipulated to exaggerate Zyprexa’s benefits and understate its harms.” (Dr. Jackson had written “An Analysis of the Olanzapine Clinical Trials—Dangerous Drug, Dubious Efficacy” for a previous forced-drugging case of Gottstein’s, which Gottstein won.)

Berenson knew about Jim’s previous Zyprexa litigation and hoped he would agree to subpoena Dr. Egilman so that the doctor could legally send him “secret documents” proving that Lilly knew the drug caused life-threatening conditions and “had illegally marketed this powerful and dangerous drug for use in children and the elderly.” Then Jim could share the documents with Berenson. Remember how Daniel Ellsberg shared the Pentagon Papers with the Times 50 years ago? Like that. (For “Eli Lilly Said to Play Down Risk of Top Pill,” in which Berenson credits Jim for providing the Zyprexa documents to the Times, click here.)

After the legal situation got complicated and Jim emailed an apology to everyone to whom he had sent the Zyprexa Papers for getting them involved without their permission, acclaimed investigative journalist Robert Whitaker—author of “Mad in America” and “Anatomy of an Epidemic”—wrote to him (in part):

“Dear Jim,

“…Please remember that you have done a very fine thing by getting these documents to The New York Times.…There is no finer action than to get out information like this that will achieve such an end as saving the lives of the innocent…The same kudos should go to others who have helped get this information out—Will Hall, David Oaks, Vera Sharav, MindFreedom. This is a fight very much worth fighting.”

Unfortunately, “saving the lives of the innocent” was apparently not something the court considered a priority. Jim writes that he lost “big-time”:

“In addition to finding as a fact that I had assisted Dr. Egilman in violating the Secrecy Order, Judge Weinstein found I had deliberately misled Lilly and violated the terms of the Secrecy Order by not informing Lilly about the amended subpoena. He also found I had ‘conspired to steal’ the Zyprexa Papers….Lilly had also threatened to seek to have me disbarred. Lilly could even sue me for the loss of income they had suffered as a result of me subpoenaing and releasing the Zyprexa Papers. To say all of this was alarming would be a gross understatement. However, even if all of this were to happen to me, I felt it would be worth it because I had saved thousands of lives, if not tens or hundreds of thousands, and improved the lives of more.”

Ultimately, there was good news and bad news. The good news: “On January 15, 2009, the Department or Justice announced a $1.415 billion settlement of criminal and civil charges against Lilly for its illegal off-label marketing of Zyprexa in the False Claims Act cases that had ‘gained momentum’ as a result of the Zyprexa Papers’ release.” The bad news: In spite of the fact that the “whistleblowers” received nearly $79 million, none of them were willing to help Jim with his enormous legal fees, despite his lawyer’s request.

The book has its lighter moments. Take the response of the late psychiatric survivor and human rights activist Pat Risser to one of Lilly’s lawyers, who had asked about retrieving all the copies of the Zyprexa Papers:

“Gosh, what a mess. I’m sorry but I wasn’t aware of any court order at the time I downloaded the ‘secret Zyprexa documents’ so, I not only downloaded them but I made several copies (burned them to CDs) and distributed them. I mailed them to some family and friends as well as several newspapers (in Ohio and Oregon). Since I had some extra copies (about 40 or so) I also passed them out to folks who seemed interested as I stood outside of a shopping center store. I have no idea who these strangers were so I can’t possibly get these CDs returned. I’m so sorry. I figured since you’re making such a fuss over the thousands of copies that went over the internet, I’d better let you know that this ‘secret’ has spread and I really can’t help stop the spread at this point. Sorry.”

Braided into “The Zyprexa Papers” is the story of Bill Bigley, to whom the book is dedicated. Bill was under a guardianship— which the late Claude Pepper, who championed the rights of older adults during his long career in Congress, called “the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty.”

Jim represented Bill in his effort to keep from being forced-drugged by the Alaska Psychiatric Institute. In “One Drug, Two Faces,” Alex Berenson covered Bill’s efforts to avoid this. (For the New York Times article, click here.) Despite having been hospitalized some 70 times over nearly three decades, Bill had never been violent or suicidal, and mostly “he gets by,” in the words of the judge, who ruled in Bigley’s favor.

Ironically, in a later case, “a psychiatrist testified that Bill saying The New York Times had written a story about him was proof he was mentally ill…When it was pointed out there was a story about Bill in The New York Times, [the psychiatrist] just said, ‘Oh.’” And in a Catch-22 moment, there was additional testimony “that Bill not wanting to take the drugs because ‘it kills his brain’ was proof he was incompetent to refuse them.”

In sum, “The Zyprexa Papers” is a deep dive into the Bizarro World of psychiatry, Big Pharma, and the judicial system. As Jim writes, “To me, it is crystal clear locking people up and drugging them against their will is not ‘for their own good’ but instead very harmful to them. One of my goals in writing this book is to show this truth.” Mission accomplished.

Full disclosure: My personal experience with psych drugs has been fraught. It includes but is not limited to forced-drugging with Stelazine (once); becoming seriously suicidal while taking Prozac without knowing that Prozac can cause suicidal thinking; and choosing to take an old-fashioned tricyclic antidepressant (desipramine), which left me with lasting side effects, took almost four years to wean from, and which I later learned was in a class of drugs—anticholinergics—that cause dementia. However, I also know people who believe that psychiatric drugs help them. People who are educated about the risks inherent in taking psych drugs and still choose to take them, that’s one thing. But giving people drugs without the opportunity for truly informed consent is absolutely wrong. And forced-drugging is so wrong that there should be another word for wrong.

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Art by Artists with Psychiatric Diagnoses to Be Exhibited at Norristown Public Library...Artists with Lived Experience of the Mental Health System Are Encouraged to Participate

Press Release

For Immediate Release

Art by Artists with Psychiatric Diagnoses to Be Exhibited at Norristown Public Library

Artists with Lived Experience of the Mental Health System Are Encouraged to Participate

NORRISTOWN, PA (April 3, 2019)—On April 18, 2019, artists who have mental health conditions will vie for first place at an art show organized by the Montgomery County Community Support Program (CSP) Committee, which brings together people with mental health challenges, their family members, service providers, and administrators in an equal partnership to promote recovery, as well as excellence in community-based mental health services. Artists with psychiatric histories are encouraged to enter the contest; the deadline is Monday, April 15, 2019. To enter, contact Ameika Malcolm at 610.270.3685 or amalcolm@hopeworxinc.org. The drop-off address for artwork is Hopeworx Inc., 1210 Stanbridge Street, Suite 600, Norristown, PA 19401. The theme this year is “Living My Best Life.”

“One of the goals of the event is to combat the prejudice and discrimination associated with psychiatric diagnoses by showcasing art created by people with lived experience of the mental health system,” said Sue Shannon, executive director of Hopeworx, which is run by people who themselves have mental health challenges.

“People who have mental health conditions are like everyone else in that some of us have enormous talent,” Shannon continued. “This amazing artwork is proof of that.”

Hopeworx—active in the Montgomery County CSP Committee—has helped organize the contest.

“We are thrilled to be able to highlight the talents of people whose abilities are often overlooked,” added Ameika Malcolm, Hopeworx project coordinator and a member of the Montgomery County CSP Committee.

People who have mental health conditions are represented in every sphere, including in the art arena. “We are your neighbors, friends, and family,” said Shannon. Some artists who had mental health challenges—e.g., Van Gogh, Munch, and Goya—are very well known; others—such as Meghan Caughey, Amy Smith, and Sharon Wise—are primarily famous within the mental health community.

The artwork will be exhibited during the CSP meeting on Thursday, April 18, from noon to 2:30 p.m. at the Montgomery County-Norristown Public Library, 1001 Powell Street in Norristown. Following the contest, the library will display the artwork from April 29 through May 3.

The mission of Hopeworx is to promote the continued development of a community environment which supports and believes in the expertise and passion of consumers—i.e., individuals with lived experience of the mental health system—to create and direct their own paths to health and recovery.

The Montgomery County CSP Committee meets on the third Thursday of every month, from noon to 2:30 p.m., at the Norristown Public Library, 1001 Powell St., Norristown, PA  19401.  Organizations that regularly send representatives include the Montgomery County Department of Behavioral Health, the Consumer Satisfaction Team of Montgomery County, NAMI Montgomery County, Mental Health Partnerships, Salisbury Behavioral Health, Magellan Health Services, Resources for Human Development, and Community Advocates of Montgomery County. 

Contact: Ameika Malcolm, Hopeworx Project Coordinator, amalcolm@hopeworxinc.org, 610.270.3685

For more information about Hopeworx Inc., visit www.hopeworxinc.org

For more information about the Montgomery County CSP Committee, visit http://montcocsp.org/

 

 

I Stand with the Parkland Students—Except on One Thing

Dear Parkland students,

You have my deepest sympathy for the heartbreaking losses you have suffered. You also have my sincere respect for your courage and your passionate activism, and my admiration for how much you have accomplished already in galvanizing the country. And you are just getting started! If anyone is “woke,” YOU are!

In solidarity, I traveled to Washington, D.C., last weekend to participate in the March for Our Lives, which you so brilliantly organized. Although there was a march in my home base of Philadelphia—as there were in more than 800 cities and towns around the world!—I wanted to be in D.C. among the huge crowd that gathered there, estimated at between 200,000 and 800,000, depending on who’s counting. (As we ended up stuck at 9th Street watching you speak on a jumbotron, it certainly seemed like 800,000!)

But I must be honest: I have a serious mental health condition, for which I have been locked up on a psych ward more than once and force-drugged. However, like the overwhelming majority of people who have one or more psychiatric diagnoses, I am not violent, and I am far more likely to be the victim of violence than the perpetrator.

So I was taken aback when I read your “Manifesto to Fix America’s Gun Laws” in The Guardian. At first, “you had me at hello.” In fact, as I began to read, I was actually thinking that your demands don’t go far enough! (Along with retired U.S. Supreme Court Justice John Paul Stevens, I would like to repeal the Second Amendment—and that’s just for starters.)

But when I read, “Change privacy laws to allow mental healthcare providers to communicate with law enforcement,” I thought, These students have been sold a bill of goods about the bogus connection between mental health conditions and gun violence.

As I hope to convince you, any such “connection” is false. To quote from a federal government website, “Most people with mental illness are not violent and only 3%–5% of violent acts can be attributed to individuals living with a serious mental illness. In fact, people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”

Many journalists “get it.” Reflecting on your manifesto, Sarah Jaffe wrote in The New Republic, “The proposals [published in The Guardian] included more funding for mental health research and professionals—a laudable goal, but it came with the recommendation that privacy laws be amended to give police more access to mental health records. These demands, mental health professionals and longtime anti-violence activists noted, would do more to stigmatize people with mental illness and expand the reach of over-powerful police departments than to stop gun violence.”  Lincoln Anthony Blades, in Teen Vogue, wrote, “There is much that needs to be unpacked and debunked when it comes to this topic, especially as it relates to blaming violence squarely on mental health issues, which isn't fair, insightful, or accurate.” David M. Perry wrote in Pacific Standard, “I expect the baseless stigmatization of mental illness to continue (only 1 percent of all gun homicides in the U.S. from 1999 through 2015 were committed by people with known mental illness)." And in The Nation, after the church shooting in Sutherland Springs, Texas, Perry wrote, “Our mental-health system needs a lot of help, though not to stop gun violence (only 3 to 5 percent of violent acts involve people with psychiatric disabilities, who otherwise make up about 18 percent of the population."  

This is not the first time I have written to people I respect who have fallen for the false link between mental health conditions and gun violence. In 2016, when President Obama held a press conference in which he perpetuated this myth, I wrote to him, much as I am writing to you now.

Dear Parkland students, I will join you on the barricades as you continue organizing and advocating for your—and everyone else’s—right to live over someone’s right to own (and shoot) a gun. In return, I hope you will educate yourselves about the myths and facts about people who have mental health conditions. We are not the problem; it’s the guns.

Yours in solidarity,

Susan Rogers

Director

National Mental Health Consumers’ Self-Help Clearinghouse

 

Emotional CPR Is Recommended for LA County DMH

By Daniel B. Fisher, MD, PhD and S. Michael Szczerbaty, M.A., MHSC

What is Emotional CPR (eCPR)? The approach is said to be holistic, hopeful, and empowering. It is a heart-to-heart experience between provider and consumer. It is embedded in a hopeful belief that by using interior experience, empathy, compassion and knowledge, anyone can help another person recover from an emotional crisis. Rather than labeling someone with another 'mental health problem,’ the approach assumes that the person is coping with an experience beyond their current ability to effectively manage their emotional crises. The sooner an eCPR practitioner begins to support a person in their emotional crisis, the more likely it is that the person will make a full and timely return to a life that has meaning and purpose.

http://www.peersnet.org/blog/2014-05/emotional-cpr-recommended-la-county-dmh