Tuesday, June 4th was a day that some psychedelic medicine advocates might hope to forget, as an FDA advisory committee dealt a blow to Lykos Therapeutics’ MDMA-assisted therapy. But, in some much brighter news, it was also the day that American sociologist Dr. Joanna Kempner published her thrilling new book, Psychedelic Outlaws, which I’m sure will be a must-read for anyone with an interest in the field.
Working here at Psychedelic Alpha certainly has its perks, in that I didn’t need to wait so long to give this a read, having been fortunate enough to receive an advance copy of the manuscript a few weeks ago. And the luck, in doing so, continued—just a few days ago I was able to sit down with Kempner to dig even deeper into her new book, exploring how she got involved with this work, what her motivations were, and her journey of discovery in producing this text.
Kempner is an associate professor of sociology, currently working out of Rutgers University. Looking into her research interests, I saw that her work spans across many different specialties, ranging from gender and health studies, to the nature of research and data generation, to the concept of the post-truth world. However, each of these things seems to share one thing in common: exploring how social values are embedded in what we know and don’t know, particularly with regards to health and disease.
Yet, in her latest book, Kempner manages to unite all of these avenues of exploration into one cohesive and impressive narrative. The book itself revolves around an unlikely group of grassroots activists and amateur researchers who, desperate for an effective treatment for cluster headaches, take it upon themselves to cure their own condition. And through their sheer determination, ingenuity, and—unsurprisingly for this outlet—psychedelic-based therapies, they may well have developed a possible solution.
Throughout the book, Kempner details the story—essentially a part-history, part-ethnography of these so-called Clusterbusters—of how she, over the course of a decade, came to ingratiate herself to the group and witness their radical, community-driven research.
However, as readers will quickly see, despite the book starting off in a fairly straightforward fashion, the Clusterbusters story evolves into a more bizarre and thrilling narrative. Featuring a scandal involving a Harvard professor, allegations about cooperating with the DEA, and all the usual trappings of psilocybin-based intrigue, this latest addition to the psychedelic literature is a must-read for enthusiasts of clinical research, grassroots activism, and spy thrillers alike!
But onto the interview…
Oliver Longstaff, Psychedelic Alpha: Dr. Kempner, thanks for joining me today. I would love to just jump straight in and start talking about your experience in writing this book and some of your motivations, without spoiling too much of course.
Dr. Joanna Kempner: My research focuses on gaps in knowledge. I want to know why science and medicine fails to produce research on topics that—by any measure—are important to understand. That’s what drew me to write my first book on migraine and the politics of gender and health. It struck me as odd that there had been so little biomedical interest in studying a disease that affects 12% of the population.
Quite often, patients will organise to fight for more resources for their disease. Sometimes patients are frustrated enough with the system that they’ll do their own research. But Clusterbusters went even further than that. They did their own research on psychedelics. They created a psychedelic drug protocol for the treatment of cluster headache. And then—and this was in 2004—they took that protocol all the way to Harvard, in the hope that they could get their treatment legitimated by a randomised clinical trial.
But it turns out that developing a psychedelic treatment was the easy part. Trying to get a study under way on a Schedule I drug at Harvard was much, much more complicated. And that’s really when things get messy.
Longstaff: Shall we dig into that story then? I’m sure our readers would love to understand a bit more about it and how you managed to piece it all together.
Kempner: In 2003, Clusterbusters published a website with instructions that explained how to use psilocybe mushrooms as a treatment for cluster headache. But it didn’t take long for Bob Wold, the founder of Clusterbusters, to realise that a webpage wouldn’t cut it.
I should probably stop for a moment and explain that cluster headache is considered the worst pain a human can experience. People consider suicide when having these attacks. It’s an awful disease.
Wold was getting frustrated that word about this treatment wasn’t getting out quickly enough. So, he wanted to get medical doctors on board. But it was hard to find a doctor willing and able to do that sort of research.
Rick Doblin was quite helpful in connecting Clusterbusters with John Halpern, a psychiatrist at Harvard’s McLean Hospital. Halpern had an impressive track record of studying psychedelics. And, at first, things were slow but sort of okay. But Clusterbusters hadn’t expected that the prestigious doctor they were collaborating with might have a shady past of his own.
The bottom fell out in 2006, during a symposium held in Basel, Switzerland to celebrate Albert Hofmann’s 100th birthday. The symposium, itself, was a pretty big deal. People flew in from all around the world. And Hofmann, who lived to be 102, was well enough to attend and address the crowd.
The symposium should have been an amazing event for Rick Doblin and John Halpern. Doblin was hosting a panel with the handful of scientists who were studying psychedelics in universities, and Halpern had done something remarkable. He’d gotten a MAPS-funded MDMA-assisted trial for end-of-life anxiety approved at a Harvard hospital. They were all set to celebrate.
But the panel was interrupted by an accusation that Halpern had cooperated with the DEA. The story that unfolds from here is devastating.
Clusterbusters didn’t leave Harvard empty-handed. A 2006 article in Neurology documented 53 case studies of people with cluster headaches who “busted” their attacks with LSD or psilocybin. And a 2010 clinical trial on BOL-148, a non-hallucinogenic congener of LSD, offered a new therapeutic possibility for cluster headache.
It’s a great portal into the early days of the psychedelic renaissance, when people like Rick Doblin were first making their way into universities. And the dramatic plot twist was a really useful way to illustrate the tensions that exist between the underground and the aboveground.
Not many people know his history. If you’re relatively new to the world of psychedelics, like the last 5-10 years, it’s possible you might not know about this movement at all. But it was a huge scandal at the time.
Longstaff: Wow, if 5-10 years is defined as ‘relatively new’ to this industry, I hate to think how people would describe my level of experience. My own credentials aside, let’s then talk about scandal and controversy more generally and how events like these impact the industry as a whole. For instance, how they change people’s perspectives on psychedelics, how they reinforce prejudices, and how this might have impacted the ability of patients to get access to these molecules.
Kempner: When you ask that question, I immediately think of Timothy Leary. That was the original scandal. He’s a character who really haunts the psychedelics industry because people are so afraid of a backlash to the progress in this second wave of psychedelic research. They imagine that Leary was the cause of the ‘first fall’ in psychedelic research, that it directly had something to do with his own personal use of, and his advocacy around, these drugs.
The shadow of Timothy Leary still looms large. Many believe his personal use and vocal advocacy led to the initial crackdown on psychedelics. This fear of backlash drives today’s researchers to go to great lengths to appear ‘sober’ and objective. They must present their findings as ‘pure’ science, free from any taint of the counterculture that birthed these studies.
But the second wave of psychedelic research couldn’t have happened without the support and resources of a very extensive underground. Psychedelic researchers are put into a bit of a bind – they’re reliant on this very enthusiastic community of philanthropists and psychonauts for all sorts of things, both for data and funding, but then they have to make their science look like it has nothing to do with this community of support, and that creates tensions.
Longstaff: It seems a case then with standards, particularly when it comes to the individual researchers and those backing them, they have to show a greater level of legitimacy than would otherwise be expected as, dealing with these kinds of molecules, they can’t seem like a lobbyist or someone pushing for these kinds of therapies in the absence of relevant data.
Kempner: My background is in science studies, a field that explores how science is created and sustained. Science is built through networks of support. But there’s a tendency within science to systematically erase the recognition of these supporting systems. It creates a perception that knowledge is produced in a vacuum, that it is pure, and that those listed on research articles developed it in an isolated, culture-free ivory tower or laboratory.
And that’s just simply not true. Scientists are human. They have interests related to their field. They have passions. They might have real hopes and dreams that the treatment they’re studying might heal someone. And, yes, they work within a broader culture.
Psychedelic scientists might be under more scrutiny because the regulatory system is so strict, and because there’s so much stigma against these drugs. But they’re still human. And there’s so little support for this kind of research, particularly around federal funding, that psychedelic scientists are very dependent on this tiny community who support them to get the work done. And, of course, where that money comes from strongly influences the kind of research that they can do.
Longstaff: So, with regards to this community of support surrounding psychedelics, I can perfectly well understand there being a large group of people who actively promote and advocate for these drugs and believe in their potential. However, could you dig more into how they directly support those in research specifically?
Kempner: Well, first, there is no psychedelics community. There are lots of little psychedelics communities. There’s no monolith here.
But in terms of the support for research that does exist, amongst these various communities, we can generalise in saying that they do so in two main ways. The first is in terms of funding. There are enthusiasts, with a bit of money, who can fund philanthropies – for example, David Bronner or Amanda Feilding. And a great deal of this has been a grassroots effort, for example MAPS, with its more grassroots funding and membership model that sponsored research.
This comes back to my point earlier, where you’ve got a load of people enthusiastic about a certain area of research. That’s how these philanthropies work – the redistribution of wealth by the wealthy, but they’ll obviously be redistributing their wealth where they have their interests.
The second part, aside from funding, is in getting data in general. Prohibition might have stopped research at universities, but it led to a thriving underground scene where people kept experimenting with LSD, MDMA, and magic mushrooms. And then they post about it online. So the internet has become an amazing source of data for scientists who are interested in bringing psychedelics back into the university. It’s a lot easier for researchers to get approval for observational research or to collect a survey than it is to bring in a clinical population and administer a psychedelic to them.
So, nowadays you’ve got all this psychedelic research based on crowdsourced data from places like Twitter or Reddit. And that’s just a few of the ways that psychedelic researchers rely on the underground.
The internet played such an important role in the psychedelic movement, and you can see how it all plays out in this story.
Longstaff: You’ve spoken so passionately thus far about the process of scientific discoveries, and particularly around research at the edge of the mainstream, research within the constraints placed on it.
Of course, I did my homework and did some background research on you. Based on what I found, it seems like drug development and informational development are strong interests of yours, but you’ve also written extensively about human health and the stigma surrounding certain health conditions, migraines most of all. To what extent would you say this book, this ethnography, is a culmination of all your academic interests?
Kempner: I didn’t set out on a mission to be a headache researcher, but as a grad student, my personal experience helped me find a field site where I could study gender bias and gaps in healthcare.
I started getting severe headaches at the age of five and, according to my parents, the paediatrician I had just said I had a ‘Type A personality’ and nothing more could be done. Luckily, my mom, who had also lived her life in a lot of pain, ignored him. She’d been told the same nonsense her whole life, and she wasn’t going to let that happen to me.
People think of sociologists as people who approach and study the ‘big’ problems, namely racism or poverty. Migraines and the people who get them, conversely, are not usually what people think about.
That’s where I think my interest lies, in these issues that could and possibly should be bigger problems or have more visibility, but for various reasons they are overlooked. Sometimes the cause of ignorance is stigma. Sometimes it’s politics. It can be a legal issue, or a money issue, or a regulatory issue. Psychedelics fall into all of these categories, which makes them a pretty great topic for someone like me.
Longstaff: It was thus this mix of chronic conditions and the areas of research around them, particularly those on the more controversial end of the scale, that started to interest you?
Kempner: That’s it. I was so fascinated to then run into this group of patients who were generating knowledge about psychedelics just on their own. It was just incredible, a hopeful story in which I saw a model of resistance. And that was back in 2013.
Longstaff: Wow, I didn’t realise you’d been at it for so long.
Kempner: Well, that’s just my bit in all this. Clusterbusters have been going since ‘99, so I feel like just a drop in the bucket. I didn’t think I was going to write a book. I just fell in love with the patients – I will say, to know this group of patients is to love them.
I just needed to know what they were doing. People are making knowledge with all these political and economic forces against them. That’s a really powerful story.
Longstaff: This brings me to my next question. I suppose we do live in this world where, on the one hand, you’ve got wildly misunderstood or ignored disease areas like cluster headaches and, on the other, we have the emergence of psychedelic treatments which, let’s face it, have a lot of controversy surrounding them.
My question is in two parts: how could this hinder the acquisition of knowledge in these areas and what needs to change? When can we get to a point where these grassroots activists won’t need to take it upon themselves, at great expense to themselves, for this research to be undertaken?
Kempner: Big questions. This book might be about a small group of people who have a rare disease, but many of us can relate to the struggle to get good care. Medical care, especially in the US, is difficult to access, medications cost way too much, and it’s really hard to find a healthcare provider that you trust, and who listens to you.
It takes an average of five years to get a diagnosis for cluster headache. And getting a diagnosis is only half the battle. It’s incredibly difficult for patients to get prescriptions for available treatments. And remember that these are people experiencing multiple, excruciating attacks of pain that feel worse than passing a kidney stone or unmedicated labour.
So the healthcare system is broken. But you asked about knowledge. That’s about how we fund and regulate drug development. The cluster headache treatment protocol involves three relatively low doses of psilocybin. No therapy is required. There’s no patent there.
I’d like to see the FDA designate cluster headache as an orphan disease, so that drug developers would have some financial incentives to investigate new treatments for it.
Then there are the usual problems that come with a Schedule I drug. Psychedelic Alpha readers will be familiar with that whole rigamarole. But it’s going to be an even bigger struggle with a disease like cluster headache, which is itself quite difficult to study within the randomised controlled trial framework.
The government could really be doing a much better job of protecting people by simply providing helpful information, and some reasonable harm-reduction.
In the meantime, I hope that physicians listen to their patients with an open mind. Patient communities are spaces where people share all sorts of hacks for surviving with their disease. Bringing patients to the table is a good idea.
Longstaff: I’m sure many of our readers will have to agree with that. So, I think we’re running out of time. Could I just ask if you have any last takeaways from your experiences with the Clusterbusters and writing this book?
Kempner: I always like to leave Bob Wold, the executive director and founder of Clusterbusters, with the last word. “You can’t bring a transformational medicine into a broken healthcare system.”
There’s no magic bullet to get us out of this mess. But psychedelics have been a really useful tool.
Longstaff: It seems you really grew to care for this group. How do you think your relationship with them will evolve moving forward?
Kempner: You know, there’s this whole research literature on ethnographers like me. How do we leave the field? We have formed tight relationships with people, and how do you just leave them? I still haven’t figured out an answer to that.
Right now, I think it’s just so important for them to get some attention. Their work is so
important. I also just want to mention that their work has also led to a clinical trial on psilocybin in migraine as well, which will obviously affect many more people. They need attention and they need help. It’s like the house is on fire!
Longstaff: Joanna, thank you so much for your time!
