I sent this personal email to Drs. Smita Das, Chair of the American Psychiatric Association (APA) Council on Addiction Psychiatry, and Dr. Saul Levin, CEO and Chief Medical Officer of the APA. I have not heard back.
Dear Dr. Das:
I am writing with regard to your quote in a recent article in the Milwaukee Journal Sentinel regarding ketamine infusions.
I am a life-long sufferer of Major Depressive Disorder, coupled with suicidal ideation for most of my 40+ adult years. Over those years, I tried virtually every pharmaceutical on the market. I had three full courses of TMS. I had multiple courses of EMDR and hypnosis. I even went so far as to try several acupuncture treatments. In 2014, I committed suicide twice. That I survived is only a testament to first responders and emergency department staff.
In early 2018, I finally had had enough and settled on a final, determinative plan to end my life. Sensing that I was in real trouble, my psychiatrist begged me to try a "new" treatment that was now available at a clinic in Milwaukee, whose staff he had talked with and agreed to see me the next day. I trusted, connected with, and really liked my psychiatrist. As I was planning my exit, I felt really bad about how it might affect him. So, when he asked me to try ketamine, I reluctantly agreed because I didn't want him to be left wondering if there was something he should have tried. I had zero confidence that ketamine would help me. But I deferred my suicide for one day, just to give him comfort that he had tried everything.
I slept for most of the hour's drive back to Madison. When I awoke, my driver asked, "How do you feel?" After thinking for a moment, the only thing I could come up with was, "Different." It wasn't until the next morning, as I sat at my desk staring out across my monitor and through my bay window into the adjacent corn field that it finally occurred to me. "I need to be dead." Where were those words, that thought? It had been a regular part of my life for decades, yet that day it was nowhere to be found. And it never returned. Aer some trial-and-error, we determined that my infusions needed to be spaced no more than three weeks apart, and so I continued, living a life I had never known, with my MDD and SI in full remission.
The article in the Journal Sentinel was very clearly about MDD, especially TRD. I find your comments on behalf of the APA appalling. I thought to myself, "If I were where I was five years ago and read this article, I would never try this." And, so, if I were in that position where I was five years ago, I would not be alive today to write you this email. In short, your comments would have contributed to my suicide. Congratulations!
That you are so, so far behind the research is mind-blowing. You are, no doubt, familiar with much of the research into the efficacy and safety of racemic ketamine infusions, so I won't list all the citations here. You are also no doubt aware that, being off-patent, there is no pharmaceutical company that will put the time and money into clinical trials that would satisfy the FDA? Are you aware, Dr. Das, that racemic ketamine infusions now meet the federal statutory definition of "medically accepted?" Are you aware, Dr. Das, that UpToDate now offers the following in their discussion of Unipolar Depression:
"For patients with treatment-resistant, severe, nonpsychotic, noncatatonic unipolar major depression, we suggest initially using ketamine rather than electroconvulsive therapy (ECT), based upon efficacy, safety, adverse effects, and patient preferences?"
That you, and/or the APA would rather have Americans die from suicide than to be referred for racemic ketamine infusions with high rates of efficacy is absolutely disgusting to one who has experienced the immense power of this drug first-hand. So incredibly moved was I by the change in my life that I have gone on to form a nonprofit organization to help low-income people pay for the infusions, our help made necessary by the attitudes of you and your organization that contribute to Medicaid, Medicare, and private insurance still refusing to pay for these treatments. I see the results. I read the emails and receive the telephone calls from our clients passionately appreciative of us
making it possible for them to receive ketamine infusions rather than commit suicide!
Instead of being honest about the demonstrated safety and efficacy of racemic ketamine infusions, you continue to project the archaic view that none of the research counts unless there can be found a company willing to put millions and millions of dollars into an official clinical trial that will satisfy the FDA, when you know fully well that a drug costing around a dollar per infusion will never justify the expense. Real-world data be damned! Make people try a drug with far poorer efficacy and costing tens of thousand of dollars more! Make people submit to having grand mal seizures induced in their
brains with lasting and sometimes permanent cognitive and memory impairment, as well as tremendous financial cost! Let people kill themselves! With SI, Dr. Das, you may only get one chance to save that person. We want them to get the treatment with the very best chance of making the difference, and that one treatment today is racemic ketamine infusions despite the possible influence Janssen Pharmaceuticals has on you and your organization. I hear from practitioners that work with both Spravato and racemic ketamine infusions, and they all report the same thing: racemic ketamine
infusions are much more likely to help than Spravato. It's sad, because I really wanted Spravato to be "it." Yet, I know that it is not.
Your quote has dealt us a setback. Your attitude is shameful. It is time for you and the APA to move into the 2020's, Dr. Das. It is time for you to want to save lives, the way my psychiatrist wanted to save mine.
Mount Horeb, Wisconsin