How pharma captures bereaved mothers

November 26, 2012 • 9 comments

Introduction by David Healy

In 1987 Herb Hendin started the American Foundation for Suicide Prevention (AFSP). AFSP is a non-profit 501(c)(3).  It is an active fund-raiser.

AFSP fell into the hands of Charlie Nemeroff and later John Mann and colleagues at Columbia. On December 1st 2000, Charlie Nemeroff told the Council of AFSP that Healy had been sacked from his job in Toronto. This was before I was told I was being let go, and before the University knew anything about it. Nemeroff had given a lecture the previous day at a meeting in Toronto that I had also lectured at. When telling me months before that I might get sacked he had previously intimated that he was going to be the expert witness for GSK in the Tobin trial – where Tim Tobin took an action against GSK after his father-in-law took Paxil and 48 hours later killed his wife, daughter, and grand-daughter before killing himself. John Mann ended up as the GSK expert in the case. The jury returned a verdict in favor of Tim Tobin.  We now know Dr Nemeroff was in receipt of funds to the tune of $1 million from GSK during this period.

The American Association of Suicidology (AAS) in contrast is primarily a support group for people who have been wounded by suicidal losses.

Julie Wood’s Encounter with AFSP

Last week I heard about International Survivors of Suicide Day, Nov 17, from a friend who believes that I need to work on moving forward since the death by suicide of my wonderful son John David. Karyn had heard that a group of volunteers was holding several county-sponsored sessions just north of the city.

I am a believer in peer support so I decided it would be valuable to go. Only people who have experienced this kind of loss first hand can really understand it. I thought I was going to talk to a group of survivors, perhaps to hear stories and advice from other survivors and experts, to compare experiences and share thoughts about coping.

There was some of that, but I quickly discovered that there was another agenda at play. We were welcomed to the session by two lovely, kind, sincere people.

Sympathy and Pills. Created by Billiam James

The session started with a video. About 5 minutes into it, I texted my husband to ask if the maker of the video, the American Foundation for Suicide Prevention (AFSP), was funded by a drug company. He checked and texted me back that yes, it was. I asked because the strong messaging in the video was that people commit suicide because they have undiagnosed mental disorders and that the way to prevent suicide is to get people in for treatment (translation: people who have troubles need diagnoses and drugs). At the same time, in a couple of the portrayed situations, drugs probably exacerbated the problems and contributed to the suicides. The video is so clearly guilty of lying by omission that I was alarmed.

After we watched the video one of the group leaders told us that AFSP is a non-profit that has offices in downtown Manhattan. He joked that he does not know how they afford the rent there. He told us that they hold “Out of the Dark” walks all over the country to raise funds, and one large overnight annual walk.

After the video we formed a circle so people could talk. There were 20 of us. The first people to speak said a few words about the person they lost and started to cry. When there was a pause I told people that my son died because of a stimulant drug, and how upset I had been to discover this. I pointed out that it was very misleading to show a video about suicide and never mention that the drugs the people in the video were taking can cause suicide. I pointed out that Forest Labs funded the video (this was also in the credits so I never needed to text Peter) and I pointed out how AFSP affords their rent.

Then, the first woman who had spoken, said that she suspected that drugs caused the death of her husband of 50 years. He was given Cipralex, and he told one of his daughters on the phone that “he was feeling odd, not himself”. He apparently also told his doctor, who then doubled the dose and added Seroquel. Two days later, after playing a game of cards with him, his wife went out on a short errand and when she got back she found he had hanged himself.

One of the group leaders then said that some people react badly to drugs but that an antidepressant had saved his life after his 18-yr-old son committed suicide a year ago. Then five people in the group said that they managed to “go on” after their loved ones’ suicides only with the help of antidepressants. The other facilitator explained that sometimes brain chemicals go off kilter and we need drugs to get them back in line. I said I have heard that it is true that antidepressants can be very beneficial to some people in the short term, but there is no evidence that any drug fixes brain chemicals.

After that a man who was there with his wife stormed out of the room saying that he came to the session for support, not to hear this kind of @#$&*. He was clearly upset that I had raised the issue of drugs and their contribution to suicide. After he left his wife explained to the group that their 31-yr-old son who had been feeling suicidal went to the local hospital where they gave him pills, held him for a while and then sent him home where he shot himself.

Then the woman beside me on my left said that she used to be a great mom until she started taking SSRIs 8 years ago. She was crying and told us all that she had attempted suicide on Prozac several times because she “felt crazy”. Then she tried Paxil which did not work and she got worse and now she has been taking Effexor for 4 years and it does not help either. She also said that she had some real issues in her life that had been building up but nobody would listen to her. When she went to see doctors they would only give her drugs, and all they wanted to hear about was if the drugs made her feel better. Nobody would listen to her, she says, not her friends, not her daughters and not her doctors. She said she believes that once upon a time people had to listen, and to be there for each other but “now we expect people to take a pill and snap out of it”.

Then another fellow said that in the case of his 23-yr old daughter he complained to her doctor that the drugs had changed her, and she was behaving differently and he was worried about what they were doing to her. Shortly after this she killed herself.

Then another woman in the group, said that her nephew had killed himself 3 weeks after starting an antidepressant and nobody could have foreseen this because it was just not like him. The woman sitting beside me on my right (in her 70’s I would guess) told us that her sister died the same way a year ago. Her other sister was also in the room.

The video had much in it that is helpful and appealing. For example, in it a man named David Becker talks about how bereaved family members feel that the suicide death places a heavy yoke around our necks. The yoke never goes away and it never gets lighter, but we get stronger and better able to carry it. That is a comforting idea. The video also encourages support groups and these are certainly a good thing.

Less appealing was the case of John Fujikawa, whose wife Nancy was diagnosed with depression and given medication. When she stopped taking the drug two years later she committed suicide. There was no mention that suicidality can be a side effect of antidepressant withdrawal. The message conveyed was that Nancy stopped taking the meds that she needed because she had an illness, and without them, she died.

The omission in the video of any mention that drugs could have been a factor in at least 3 of the deaths portrayed created a very distorted message. People who see the video will focus on the topics and ideas raised in the video, and it appears that this is what is intended. All the people in the video talked about their guilt, and how they did not notice warning signs, and what they could have done differently. The omission of any mention of the contribution of drugs is especially damaging because drug-induced suicide tends to be sudden and unpredictable and there are no warning signs. To fail to tell this to grieving relatives leaves them with a misplaced belief in their own responsibility and guilt.

People in the video promote only the idea that people who feel suicidal are sick and need to be taken for treatment. Suicide is a very complex phenomenon. There is no mention of the most important protective factors against suicide, like close relationships, confidence, social integration, and a sense of pride, and being loved. There is no mention of known risk factors like major trauma, a feeling of not belonging or not being accepted, sexual orientation, etc. The exclusion of any discussion of these factors is as serious a distortion as failing to mention the role of drugs in many suicides.

I came home from the event and wrote a note to the organizers that described my experience and concluded with the following:

“I am glad I came to today’s session. I am impressed at the dedication of the terrific people who are contributing their time and energy to helping and supporting surviving victims of suicide but I am pretty sure that if I had not been there drugs would not have been mentioned. My strong recommendation to you is that if the County wants to use drug-company sponsored videos that mislead by failing to mention the role of drugs in many suicides, that you ensure that your group leaders are well enough informed that they raise this crucial issue for discussion along with other important contributing factors. If they fail to do this, many people at your suicide bereavement sessions may be deprived of the chance to understand the truth behind their tragedies.”

Then I went to the AFSP website. It provides information about psychiatric diagnoses that they imply are the main cause of suicide, but the same sin of omission in the video is reflected there. I discovered that the “Out of the Dark” walks including the annual Out of the Dark Overnight 18 mile walk raise money for research and awards. In 2011, $7 million was raised from these walks. AFSP also encourages donations, memorial tributes and other forms of charitable giving.

Founded with drug company money, the AFSP now sustains itself mostly through public generosity.

In their year fiscal year ended 2011, they also got donations of $1.3 million, fundraising revenue of $116K (net), investment revenue of $304K, and “other revenue” of $439K. The same year, the AFSP collected $9.5 million, mostly from well-meaning people and families damaged by suicide, to support a suicide prevention strategy that may actually cause more suicides than it prevents.

The annual report provides a long list of research grant recipients which the report summarizes as follows:

“AFSP research grants support the work of investigators from all disciplines that contribute to our understanding of suicide and suicide prevention. Since 2000, AFSP has given grant support totaling over $10 million to scientists throughout the country and abroad for studies on neurobiological, genetic, epidemiological, clinical, psychological and sociological aspects of suicide.”

A quick scan of the list of grants given reveals that the research is mostly about looking for biological connections between mental illnesses and suicide. Thus, many of the people who give to support the AFSP are paying to support the drug company agenda that led to the death of their loved ones. They have the right to know this.

The AFSP is expanding. They have chapters in Israel and Ireland, and claim they will be in 20 more locations shortly.  The 2012 flyer I received suggests that they are in Ghana and Japan. They are also in Canada.

I have complained to the Better Business Bureau of New York, Charities division, that AFSP is in violation of the BBB standards with respect to conflict of interest rules and of false advertising (by omission). I have since discovered that they are actually incorporated in Delaware so I will complain there, too.

Illustration: Sympathy and Pills, 2012 © Billiam James

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Filed Under: RxISK Stories | 9 comments

Comments (9)

  1. Thank you so much for this article. I related to it greatly. It is a perverse aspect of our culture that the people who are supposed to be helping us (and to whom we pay so much money to) are actually setting us up for more suffering and even death. I have my own story about how antidepressants changed the trajectory of my life from one of relative success and vibrant family life to a homeless vagrant who got lost in the streets. Thankfully I am back but it wasn’t through the help of doctors and medicine it was through trusting my own intuition and instincts. Thanks Again

  2. Thanks, Julie, for having the guts to speak up about the agenda of this group. They offer themselves as a source of support for people grieving over a suicide, and then take advantage of you. I had a similar experience with AFSP in 2006 — at that time they were much more high profile in our area with a big “Out of the Darkness Overnite” walk planned for Chicago. A group of us who got together online, including one man who lost his daughter to Effexor-induced suicide, decided to see if we could participate. Raise the quality of the discussion, so to speak, by carrying pictures of his daughter and other victims of drug-induced suicidality. We found the group to be incredibly secretive about the start and finish points of its highly publicized fundraising walk (weird!) so I went to an organizing meeting.

    What I found there was truly sad. Several families had gathered, looking for support. They’d been sold a vision of the Overnite Walk as a real healing, transformative experience that they wanted to do in memory of their loved one. Alas … it seemed no one could form a team and participate in the walk unless they committed themselves to raise well over $1,000 per person. “Healing” apparently unavailable to the working class. I said I was there on my own behalf, due to some recent drug-induced experiences that had pushed me to the brink, and wanted others to know there was hope. The hyper-cheerful and attractive organizers looked as though I had handed them a dead fish of course … A couple of the families and I commiserated after the meeting, and I don’t think anyone joined the Walk. As for our fledgling flash-mob … it was kind of defeated by all that security.

    I think their basic funding is just as much Pharma as before, although they do take advantage of grieving middle-class families to raise money. They have numerous special projects paid for by pharma grants: a gay & lesbian outreach campaign funded by the Johnson & Johnson and Lilly foundations, and a depressed physician awareness project funded by Pfizer. Their Chairman David Norton is a former J&J executive who left to form Savient Pharma, and their vice chairman Rogoff appears to be Eli Lilly’s #1 go-to defense lawyer.

    Right now they have a project putting up billboards in key neighborhoods. There’s one at Clark & Diversey in Chicago — don’t know if this is part of their gay & lesbian outreach, since that’s the character of the neighborhood. It says DEPRESSION: if not treated it can be fatal! See your doctor. After hearing your story, it occurs to me this billboard is not aimed mainly at untreated depressed people, who tend to know if we are thinking of ending it all or not. No, it’s aimed at terrifying our families and friends, especially parents. How sick is that?

    Hope you can find a few people who have “been there” to share and help lighten the load! Thanks again for your efforts. I am going to send an email to Charity Navigator, who has given this outfit a top four-star rating, and complain about the “transparency” level…

    • Hi Johanna,
      Thank you for the great comment, I had not heard of Charity Navigator, but I will now check in with them as well. That is great information about the AFSP. How do you suppose they get such a high rating? I guess they have only been rated by their “friends”.

      I was surprised about what they did to you about the overnight walk, you would think that they would at least pretend to care. However maybe more people will see through them, when they think about why they are not encouraged to join unless they raise $1,000.

      I bet you are right about the posters. The video was definitely aimed at family dragging their loved ones in to get a diagnosis. Yes, that’s pretty sick alright.

  3. Thank you for an excellent article, it further highlights the problem that most people are walking round in a trance believing that pharmaceutical companies are working to find cures for their ailments. Nothing could be further from the truth. The two things these powerful organisations don’t want is for people to be well, or dead…. both seriously affect their bottom line! I am theoretically a perfect customer for the pharmaceutical industry (and the medical equipment manufacturers) as I have had Parkinson’s disease for the last 10 years. Unfortunately for them I don’t buy into their so called research for a cure, and have been following my own path with incredible success, so much so that the PD speciallist nurse describes me as “amazing”. She and my daughter both agree that I am more flexible and mobile than they are (they are in their thirties and I am 63). I have developed some techniques to stop dyskinesia instantly. I made a video showing how effective these techniques are (Youtube search: Parkinson’s Relief1.mp4). Despite the obvious usefulness of these techniques no one is interested! I have sent a link to major PD websites, I have shown Doctors, and told individuals with PD about the techniques, and although it has been on YouTube for 2 or 3 years (295 hits) I have had no questions or responses to speak of. This led me to believe that with each major illness, once you have “the diagnosis”, you join a self-maintaining “eco system” of well meaning doctors and nurses, fund raisers and volunteers. The Pharmaceutical companies play a major part in maintaining the status quo. This is why I say that most people are in a trance accepting incomplete and misleading information that is fed to them. This is why the work you are doing is so important. Thank you again, and best regards Paul Davis

    • Hi Paul,
      I watched your video (I guess I was #296) and that conditioned response is quite extraordinary. However you figured out this strategy, it certainly highlights that there is more to solving life’s problems than drugs. I do not know anything about the medication for Parkinson’s but common sense would say that the right thing to do is figure out what works best for you and you seem to have done that. Your point about drug companies not really wanting us cured is interesting. With antidepressants I know several people who have been told they need to stay on them forever. That does not sound much like getting better to me. Thanks for sharing your story.

  4. Hi John,
    Thank you for sharing your story. Sadly, your story is not unique, we have heard other people tell of loss of family, jobs, etc. This is one of the reasons RxISK believes so strongly in capturing at all aspects of drug effects on the site so he has information to argue what he already knows from listening all the people he has treated over the years. More than once I have heard him question whether drugs that supposedly are working really help people get back to work, strengthen their marriage, and other things that are not physical but are REALLY important. The FDA and Health Canada are interested in drug effects that kill you or cause you serious physical injury but they often skip over some of the key issues relating to whether your life is better with drugs.

  5. Amazing insight. I’ve only recently begun to scrape the surface of SSRIs and their side effects but what a rabbit hole this has turned out to be. The SSRI stories website pointed me here. I went there because of a hunch that I had about SSRIs and the massacres that have been carried out by medicated people in the US and around the world. It’s truly the elephant in the room and no one is talking about it. Keep up the good work.

  6. Thank you for this information. It supports what I’ve suspected since 2004 when my husband commit suicide after 4 days of Paxil withdrawal. Ironically we did an AFSP walk to honor his memory several years ago when the walk happened to fall on his birthday.

  7. Some of the other pharma “front” groups I discovered when testifying at FDA advisory committees and being involved in prescription drug safety efforts after losing my child to Zyprexa were Mental Health America and NAMI. What a shameful thing – to prey on people’s difficult circumstances, and especially after a loved one is lost BECAUSE of the lethal side effects of prescription drugs.

    Thank you for this website of honesty and real life experiences. How refreshing it is.

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