“We have to be extremely careful when we take an experimental manipulation and presume to call it a treatment.”
Co-author of the original Yale study
Opposition from Ketamine Researchers
Many of the very researchers who’ve proven ketamine’s efficacy do not support its widespread clinical use and some strongly discourage it based on several arguments:
Consequences of long-term use have not been studied yet.
The relief is not permanent, and depressive symptoms will probably return.
Dissociation is an unacceptable side-effect.
Infusions are too much of a hassle. Patients need something that is easier to administer.
Reckless clinical use of ketamine could cause a PR backlash.
For the record, we are deeply grateful to the researchers for their work. Some of them have dedicated their careers to this research. The teams at NIH, Yale, Mt. Sinai, and elsewhere have re-ignited research on depression treatment after years of stagnation, providing new hope to treatment-resistant sufferers. And many desperate sufferers have found tremendous relief in the course of their clinical trials. But when a long-suffering patient gets relief in a clinical trial and is then urged by researchers to never seek this relief again, it can cause great stress and a sense of conflict.
In some cases, these researchers are simply pointing out that ketamine patients may encounter resistance from the medical community and the general public, but they are not themselves arguing for prohibition. Argument #4 above, infusion hassle, is an example. But other researchers have taken a definite stand against clinical use based on arguments like #1 above, the lack of long-term study.
To patients like us, every one of the above arguments rings hollow except #5. Let’s take them one at a time.
1. Consequences of long-term use have not been studied yet.
That statement is true. There are no studies on long-term repeated ketamine infusions for depression. And there probably never will be, for the reasons explained in the Big Pharma section. There is simply no way to turn ketamine into a big moneymaker, so no one is going to fund that research.
Instead of researching long-term ketamine use, or trying to find the most effective dosage and infusion schedules, much of the research is heading in a different direction. The search is on for other drugs that are similar to ketamine, but different enough to be patented. In other words, ketamine-like drugs that could become blockbuster moneymakers. If such a drug is found and obtains FDA approval, it will quickly become one of the top 5 or 10 bestselling drugs in the world, even if it proves less effective than ketamine. Some of the research remains focused on the underlying ketamine mechanisms of action, but enough effort has shifted towards profit to dilute the resources available for fundamental science. Bottom line: we’re not aware of a single study, current or planned, that looks at potential consequences long-term ketamine therapy – there is simply no appetite for this research.
Even though there are no formal studies on long-term infusions, there is actually quite a lot of good clinical data available. For 20 years, ketamine infusion has been the most effective treatment available for Chronic Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), an extremely painful neuropathic condition. The ketamine dose in a typical CRPS infusion is between 2x and 10x that of a depression infusion. And they are much more frequent, sometimes with multiple infusions per week, where a depression patient may get 1-2 infusions every few months. Yet after 20 years of routine CRPS use there is no clinical evidence of negative side-effects from repeated infusions.
Let’s talk about what we do know. Ketamine has a 50-year track record as a safe anesthestic, and a 20-year history as a safe long-term CRPS treatment. It’s proven to rapidly relieve depression/bipolar/PTSD symptoms in about 70% of treatment-resistant patients for whom no other treatment works. Most importantly, we know the awful consequences when patients like us can’t get relief.
Finally, substantial research has shown that living with severe depression causes measurable physical injury to the brain. Every day that passes without relief means additional harm to the brain. With ketamine treatment, there’s a chance of relief. Without it, there’s guaranteed continued suffering. Patients must be entitled to weigh the risks for themselves.
2. The relief is not permanent, and depressive symptoms will return for most patients.
This statement is true. But so what? Do psychiatrists discourage patients from taking SSRIs because a single dose can’t permanently extinguish their symptoms? Taking a single dose of insulin doesn’t cure diabetes, but is that a reason not to take it? No one is hawking ketamine as a cure. It’s a treatment. An intervention. That’s why it’s called “therapy,” not a “permanent fix.”
Yes, the patient will usually relapse, at least partially. But most find additional treatments will restore the relief.
Ketamine can have lasting benefit even after relapse occurs. When ketamine relieves their symptoms, many patients find they are suddenly able to achieve rapid, profound emotional healing, and break out of negative behaviors and thought loops that were previously inescapable. When the symptoms begin to return, the emotional healing can persist. It can make the patient more resilient, and better able to withstand the pain caused by the symptoms.
3. Dissociation is an unacceptable side-effect.
Is puking violently for days an acceptable side-effect of lifesaving chemotherapy? What about losing your hair for a year? Who decides?
Is 40 minutes of mild dissociation an acceptable side-effect of lifesaving ketamine therapy? Again, who decides?
Many medical treatments have truly awful side-effects, yet they are universally embraced because the benefits dwarf the side-effects. Chemotherapy and radiation treatment are two examples. Ketamine therapy is like that too, where the magnitude of the dissociative side-effect is trivial compared to the life-changing relief it provides many patients. Unlike chemo or radiation, this side-effect is brief, disappearing completely once the infusion ends. Moreover, ketamine patients usually experience dissociation as a pleasant side-effect, not negative. To declare it an “unacceptable” or “negative” side-effect is to pass a moral judgment, and that is outside the jurisdiction of researchers. Doctors, pharmaceutical companies, and other parties also have no business telling patients which side-effects are acceptable in exchange for relief. Patients must be entitled to decide for themselves which side-effects are worth the potential payoff.
One lifelong sufferer told us “If I could relieve my depression by gnawing off my own limbs, I would do it in a heartbeat.” There’s simply no way to argue that this patient’s misery is preferable to a brief dissociation.
“We give chemotherapy for cancer and there are side effects with chemotherapy, but we give it anyway, because people need it to get better from cancer. Ketamine does not have the side effects chemotherapy does, yet we’re using it for a disease that has a defined mortality; there is a suicide rate associated with severe depression.”
Co-author of the original Yale study and Dean of Icahn School of Medicine at Mt. Sinai
4. Infusions are too much of a hassle. Patients need something that is easier to administer.
Of course it would be preferable to have something simple like a pill. But until the research produces something easier to administer that is just as effective as ketamine, what’s the alternative? Remember we’re talking about patients who respond to no other treatment. They’ve already exhausted the usual options, and they deserve a lifeline.
The right to decide whether infusion is worth the trouble lies solely with us, the patients. As soon as something better comes along, we’ll be the first in line. Until then, the hassle of an infusion is a very small price to pay when it can literally save lives and restore happiness.
5. Reckless clinical use of ketamine could cause a PR backlash.
Resarchers fear that a ketamine clinic might use ketamine recklessly in a way that causes a patient harm. The media could seize the story and create a powerful negative buzz. Imagine such a story in the hands of a news org more interested in click-based revenue than accuracy or completeness. They won’t bother to convey the complexities of the issue or balance the story with examples of patients whose lives were saved by ketamine. They will hype the fact that ketamine is abused illegally, and ignore the fact that medical use dwarfs street abuse by 10000-to-1. They’ll call it a party drug and horse tranquilizer. A single story could be hyped in a way that taints the entire ketamine field. It could make it harder for researchers to conduct their work, and harder for conscientious ketamine clinics to treat patients.
We share this concern. In fact, there are some clinics that we feel use inappropriate protocols or have poor standards of care (they do not appear in our directory) and we are deeply concerned they will cause the sensationalistic story we dread.
But patients like us are dying in appalling numbers, leaving behind shattered families and whole new crops of sufferers in the wakes of their suicides. Childen who lose loved ones to suicide are at very high risk of becoming lifelong sufferers themselves. We can’t afford to wait for the public policy issues to be debated to everyone’s satisfaction. It’s immoral to deny us a last-ditch lifeline that has been conclusively proven effective.
This concern is legitimate, but it must be addressed in a way that doesn’t rob sufferers of access to the treatment.