In Oregon, psilocybin treatment is an experiment in real time

Last year, legal psilocybin use began in Oregon, the culmination of a ballot measure passed three years earlier. The Oregon Health Authority has now licensed over 20 service centers to administer the drug, and over 200 facilitators to assist clients during sessions.

Though the clients of these centers don't have to have a mental illness or medical referral, the promise psilocybin had shown in studies to treat things like anxiety, depression, and end-of-life distress was part of why it was decriminalized in Oregon. And facilitators have reported to NPR that the majority of their clients are seeking to increase self-knowledge and/or address mental health concerns – rather than just use the drugs recreationally. But tracking exactly how this psilocybin rollout is helping to treat those sorts of issues, developing best practices, and sharing them among providers, is still very much being worked out. The nascent industry in Oregon is basically running an experiment in real time.

Sandra, whose last name NPR is not using so as not to identify other family members, is one of those clients who sought out psilocybin to find relief from a mental health crisis. She says that when was in her 20s, she was in an abusive marriage. She says she got out, remarried and had children, and didn't really talk or even think about what had happened. Until last year.

"I was listening to a podcast, because I love some true crime," remembers Sandra. "And it was the coroner talking about this woman who was beaten so severely and she had her orbital bones broken in her face."

Sandra says those were the bones her ex-husband had broken in her face when he beat her. She says hearing that story triggered her first PTSD episode. And things just got worse.

"Every day was reliving that pain, over and over and over again. Panic attacks – my 7-year-old knows grounding techniques to get me out of a panic attack," says Sandra.

She says she tried talk therapy, EMDR, and medication. But nothing worked. So in December, she flew to Oregon from her home in Louisiana.

When it comes to psilocybin treatment – Oregon based their guidelines, and maximum doses, on existing data from clinical trials. But because psilocybin is a controlled substance, they have a limited number to draw on.

A recent review of scientific studies published since 1991 identified just 11 psilocybin trials involving a total of 257 patients. The Oregon Health Authority is not yet collecting data on the number of clients served in the state, but the nonprofit Healing Advocacy Fund reports that it's over 750 – already three times the number that have been studied.

Facilitators say that one of the things they're figuring out on the fly is what sort of environment they need to create to help clients have the best experience. Courtney Campbell runs the Portland treatment center Chariot, which has several treatment rooms and works with many facilitators. He says they're discovering that sound insulation is important.

"People are crying, people are playing music," notes Campell. "So we have a very strategic placement of both of white noise machines and as much soundproofing as you can do in a 120-year-old house with latham plaster walls."

Campbell says clients also tend to get cold at the outset, and his team has started giving out extra blankets (he's installing a washing machine to minimize take-home laundry duty).

But in addition to the housekeeping, Campbell says they're also figuring out best practices around dosage and treatment. The clinical trials that informed the dosage requirements involved a carefully screened set of participants – not the people walking through doors of Oregon clinics, with their mix of diagnoses, medications, and comorbidities.

"We hold bimonthly facilitator meetings where we talk about... the dose, the rationale for the dose and how the experience went. And that's very helpful in informing how to determine the appropriate dose for somebody," says Campbell. Although the state set a maximum dosage, facilitators can give less than that if they think it's advisable for a particular client profile.

Campbell says they conduct extensive intake interviews, and have people fill out forms with detailed personal information – and they've noticed some patterns. Like that people on SSRIs seem to require a higher dose to have a deeper experience, while people who indicate having a sensitivity to coffee seem to have heightened sensitivity to psilocybin.

Psychedelic facilitator Jeanette Small was trained as a psychologist, and is similarly trying to figure out patterns by sharing experiences with fellow facilitators through weekly zoom calls, emails over group list serves, and monthly in-person check-ins. Across the industry, similar information-sharing is happening from the ground up – treatment centers having monthly meetings with all the different facilitators who use their space, facilitators keeping up with the cohort they trained with, or sharing stories with new colleagues through the recently formed Psilocybin Facilitators Association.

"What we have already seen is that people with complex PTSD, people with a lot of psychological wounding, generally speaking, will need to start at a much lower dose," Small says.

But the thing is – all this could best be described as "anecdata." It's experience and observations – not clinical trials, with carefully selected subjects and tracking. Which means it's hard to note any of these correlations with certainty.

Because the rule-making in Oregon happened through a voter-approved initiative, the information and reporting requirements have been up to the state. Right now, the only data service centers are required to report is when emergency services are contacted (per OHA, only one such incident has occurred to date). Next year an additional reporting measure, SB 303, will kick in, bringing in more data – things like the total numbers of clients served and refused service (and the reasons for the latter), the total number of adverse reactions and the severity, and overall averages on dosing.

But these new reporting requirements will not include individual patient-level information that could help providers systematically track patterns for patients struggling with particular mental health diagnoses, for example, and tailor treatment accordingly.

"It's important to remember that our administrative rules are a minimal requirement, and they're not the best practices," says Angela Allbee, who runs the Oregon Health Authority's Psilocybin Services. "They're there to create guidelines and protect public health and safety, and protect equity and access. It's up to licensees to create best practices and inform us, so we can evaluate every year."

In addition to the informal information-sharing amongst practitioners, there are groups like the Oregon Psilocybin Evaluation Nexus (OPEN), a research cooperative housed at Oregon Health and Science University, which are seeking further research and standardization of evaluation and information sharing, trying to systematize the very definitions used in reporting, and building the tools for doing so.

Adie Rae, a neuroscientist working with OPEN, says that even defining an "adverse event" is not clear cut. What happens if someone has a brutal experience in the moment, but a positive outlook on it days and weeks later? What if someone has suicidal thoughts 24 hours after leaving the treatment space? Rae says everyone is working hard to share information as they have it.

It's possible that as these tools are standardized and data comes in, practices will change – there could be a future wherein clients with particular medications or comorbidities or diagnoses will have particular dosage recommendations.

But some worry that the enthusiasm for psilocybin may be outpacing the science that can guide how best to use it. Daniel Nicoli is a member of the Oregon Psychiatric Physicians Association, which opposed legalization.

"We're certainly not saying we don't want psilocybin to be medicine," explains Nicoli. "We're just saying we want the research in place."

As a psychiatrist, Nicoli isn't pushing for the measure to be overturned – but he wants there to be more data collection about how this is playing out in Oregon, as well as more research for psilocybin treatment generally.

Which raises the question for some: is it ethical to treat people at this stage, in what's essentially a real-time experiment?

All of the facilitators and regulators we spoke with point out that while this regulatory framework is still being built, psilocybin itself is far from new – people have been using it throughout history. And facilitators like Jeanette Small, who routinely sees clients in acute suffering, says many people can't wait.

"When people are struggling with things that we do not have anything else that works for them, you know, then the question is really, what is the more ethical perspective here?" asks Smalls.

Many clients report this tool is helping. Sandra ended up at Chariot service center in Portland to try to treat her PTSD. And using psilocybin, she says she went back to the night her ex-husband almost killed her.

"And I could see his fist just go up, but every time it went down to hit me in my face, it just turned to these beautiful leaves, leaves just everywhere," says Sandra. "And I think in my head, it changed that memory for me."

Sandra had gone to therapy, downloaded apps, repeated affirmations — that she was safe, and strong, and loved. But she says it took psilocybin for her to actually feel that, and believe it.

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