RxISK STORIES: How Pharma Captures Bereaved Mothers

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.

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.

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3 COMMENTS

  1. This disgusts but does not surprise me. I used to work at a suicide hotline, and the AFSP was a legitimate grass-roots organization. It apparently has been thoroughly co-opted by drug company interests at this point.

    Similar things are happening in the area of “postpartum depression.” There have been historical grassroots efforts to provide real support to moms who are struggling emotionally after the birth of a child, and the many reasons for such struggles were identified and acknowledged. Now those groups have also been co-opted and the talk is all of “treatment” for the “disease” of “postpartum depression” rather than the frequent natural reaction of depression and anxiety that often accompanies the transition to motherhood, especially in a society that does such a poor job of supporting new parents.

    Good for her for speaking up about it at the meeting. I’m sad to see good, solid, grassroots support networks being targeted by these evil corporate slimeballs. There are no limits to how low these scumbags will go to get a buck into their coffers.

  2. To Julie:

    I am so sorry for your loss.

    So if you believe in peer support and if parents do lose children to suicide, who is there to address the legitimate concerns of these families in their grief? Is there a competing model to AFSP? How to create one?

    I have witnessed an “Out of the Darkness” walk and it was huge. I saw well over a thousand people who had all paid something to attend. There was also a lot of corporate sponsorship with incredibly generous gift certificates being spread around. The people who attend think that they are raising money for a good cause to lower suicide rates. They want to help. How to redirect them to another way?

    Just thinking aloud here, but thank you Julie for critically examining AFSP and thinking the families affected by suicide deserve something better.