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Treatment Equity and Ease of Access to Psychedelic-Assisted Therapy
Kwasi Adusei, DNP, PMHNP, psychiatric nurse practitioner and co-founder of the Psychedelic Society of Western New York, presented a session at the 2021 Sana Symposium in which he discusses equity in psychedelic medicine, the current climate regarding access to psychedelic medicine, and impact on public health. His session was entitled, "Breaking Down Barriers: Addressing Treatment Equity and Ease of Access."
Read the transcript:
Kwasi Adusei: Hi. My name is Kwasi Adusei. I'm a psychiatric nurse practitioner. I'm also the co-founder of the Psychedelic Society of Western New York. In this presentation, we're going to be talking about addressing treatment equity and ease of access, ultimately trying to see how we can break down the barriers to psychedelic medicine. These are my disclosures.
What we're going to be diving into today are looking at the historical context regarding equity in the psychedelic space. We're going to identify some of the ongoing efforts to address access, things that have been done most recently, and what some future plans might be. We're also going to talk a little bit about the impact of elevating equity to public health.
This is a quote that I wanted to start with by a colleague Jae Sevelius, who says, "It really does need to be a collective healing for all of us. If we're really in the midst of a psychedelic renaissance, who are we leaving behind?"
There's an equity dilemma. Obviously, we know that psychedelics are becoming a medicine that can transform mental health. Unfortunately, it seems that not everybody is going to get equal access to it. This is pretty much the case not just for psychedelic medicine but with medicine in general.
Despite there being a renewed interest in studying the safety and efficacy of psychedelic medicine, the enrollment of racially diverse participants and the unique presentation of psychopathology in this population hasn't really been a huge focus of what could be groundbreaking research.
1993, in the United States, National Institutes of Health issued a mandate that funded research must include participants of color. Proposals must include methods for achieving diverse samples. What we've seen is that it hasn't been done as much within the psychedelic space.
What we see here was a methodological search of psychedelic studies up until about 2017. This was done by Jennifer Purdon, Alexis Collins, Timothy Michaels, and Monnica Williams, looking at ethnoracial differences in inclusion and effective methods of recruiting people of color.
The 18 studies that met full criteria between a period of '93 to that 2017 period, for about 280 participants, 82.3 of the participants were non-Hispanic White, 2.5 were African American, 2.1 Latino, 1.8 Asian, 4.6 of Indigenous origin, 4.6 of mixed race, and 1.8 identified as other.
There weren't any significant differences in recruitment methods between these studies having higher than 20% rates of inclusion. This is incongruent with the general proportions that we might see in the national population.
There's a little bit less inclusion of people of color in these studies, but there's a lot of evidence that shows us, in the US, people of color might experience psychological distress at a rate that's either equal or higher to non-Hispanic Whites.
As an example, the lifetime prevalence of PTSD in Black Americans is 8.03%, higher than the prevalence of the rate Hispanic and Latino Americans, Asian Americans, or non-Hispanic Whites at 6.45%.
What's been learned is that we require probably a little bit more of a tailored recruitment model in order to be able to engage people of color. Doing so, it allows us to have better generalizability of these studies, but that's only part of it.
There's also something that exists that's called, by Joseph McCowan, the trifecta of stigma. The trifecta of stigma is something that prevents a lot of people of color from engaging in psychedelic studies. We're going to dive a little bit into where that trifecta of stigma might come from.
When you look further back in history, what you'll see is that POC, or people of color, were actually included in a lot of the early psychedelic research. After the Second World War, during a lot of the initial psychedelic studies, the CIA recruited 1600 German physicians and scientists to help with developing technologies for use against the Soviets. This was during the Cold War period.
In this effort, over 80 public and private research institutions, including a lot of universities, hospitals, and prisons, were provided with funds in order to conduct experimental research with LSD on civilians.
Many of these early psychedelic research studies, those that were funded by the CIA program, were found to have completely disregarded ethical guidelines that were agreed upon by the US government.
Of course, a lot of these participants were recruited from prisons or hospitals. The main prisoner recruitment sites included ARC, which was a research center in Lexington, Kentucky, the Atlanta State Penitentiary, the Louisiana State Penitentiary.
In these prisons, part of the recruitment methods included offering things like heroin that perhaps many of the prisoners were addicted to in order to coerce them to participate in research that ended up being very, very unethical. The purpose here was to test tolerance and tolerability.
Many people were dosed at incredibly high rates that would be surely psychological damaging for most people but encouraged to continue on, despite being in these settings, where what we know of psychedelic medicine is, setting can either allow for that experience that you had to become traumatic or to become healing and what might you imagine those settings were like in prisons.
In these prisons, although people of color only constituted 7% of that population, or rather of the Kentucky population, Black Americans and Americans of Mexican origin represented about 66% of the population in ARC in particular, the Addiction Research Center.
What you see in this table was the percentage of overpopulation or overrepresentation of people of color in these studies. ARC sits at 59% overrepresentation. This was the site that was used for over 40% of the studies that were selected for this type of research.
What you might add to that is the impact of the war on drugs, which understandably generates a totally different level of fear on people of color than it might with non-Hispanic Whites, due to this disproportionate impact of the drug laws on Black and Latino communities.
There is also a stigma toward psychedelics in particular, which might require a certain environmental and psychological safety in order to engage with it, with something that might be called an exploration of the mind.
A lot of people of color, particularly from urban environments that might be marginalized, may look at psychedelics as drugs that are not for them and adding to this ominous stigma.
I often think of Maslow's hierarchy to better explain this and conceptualize it, where for many who are seeking to use psychedelics might be doing so on the pursuit of needs fulfillment towards the top of the hierarchy.
Perhaps you might be really resource limited and working on the lower half of the hierarchy, worrying about food and shelter. Might make sense to not see psychedelics as something that's for you and rather as for them, adding to this hesitation to participate in some of these studies.
The final piece of this trifecta is the stigma towards mental health in general. Whether it's depression, or it's anxiety, it's really this long-standing belief in a lot of communities of color that these things are taboo. That, again, this impact of mental health is something that's for the other, not for us. It's not something that we deal with.
You can see stigma is broken out into 2 pieces. There's that public stigma, and there's that self-stigma, where there might be this belief that people with mental illness are dangerous or perhaps might be incompetent. Maybe an acknowledgement of having a mental illness would suggest that I am incompetent or that I'm dangerous.
What you might see with that is that you want to avoid labels. What that might lead to is you want to avoid treatment, or it's really difficult for you to stay in it.
There also might be this lack of recognition or understanding about mental health where symptoms of trauma might go unacknowledged.
In fact, over generations, you might align with this assessment of a trauma clinician, Resmaa Menakem, who says that trauma decontextualized in a people becomes culture. Where what might occur is when a collective of people experience trauma, a resilience might show up.
It might present in a way of dealing with that trauma through dance, a ritual, or a ceremony, ultimately becoming really ingrained in the practices and the customs.
Where rather than seeking elements of trauma as requiring mental health treatment, instead they might be understood as something that require interventions of spirituality. In fact, it needs color. It's the church and community practices that are utilized for what we might call a need for mental health treatment.
What you're seeing is that, of course, there's been a lot of research abuses thinking about a historical context. It's not specific to psychedelics. Of course, we all know about Tuskegee. This is very much complicated by the war on drugs, which vary, of course disproportionately affecting people of color.
Then there are these associations of trauma, requiring not necessarily a need for mental health treatment, but rather spiritual or community-based practices, which is a good thing. Nonetheless, serves to collectively explain why this trifecta of stigma might prevent people from engaging with psychedelic research or psychedelic therapies in general.
Where do we go with that information? I want to introduce something that's called a curb-cut effect. It's a really vibrant illustration of how maybe laws or programming a specific focus that could be designed to benefit vulnerable groups. Maybe folks who are disabled or people of color, ends up benefiting everybody.
By doing so, underscores this foundational belief that we're really all in this together. Where that curb-cut effect comes from, it's a group of students in Berkeley who were using wheelchairs found difficult to get from class to class. They encouraged to be cutting up the curbs that would allow these ramps to develop.
When they were implemented, it wasn't only the people using wheelchairs that benefited from this, but it also included mothers with their strollers and construction workers' trolleys. That this impact on intervention meant for one population benefits everybody. One of the biggest examples of how the curb-cut effect has affected our populations with the GI Bill.
The GI Bill was this plan to offer affordable housing, affordable college education to veterans. What came out of that, was this flourishing of the middle class, where so many more people could afford to buy homes, perhaps in the suburbs. That people could actually get college educations.
So many of the people who've benefited from this GI Bill are now justices. They've been presidents, senators, dentists, doctors, lawyers, scientists, engineers, nurses, writers, actors. It's a lot for this larger impact on society as a whole.
I think it's important to focus a little bit on the impact of what might come from having this focus on equity. How it's not just for the people who it's tailored for but benefits all of us.
Who are the people who are doing that? Where are the interventions that are being seen in order to elevate equity in a psychedelic space? These efforts really require a multi-layered approach. It requires efforts in research and education, and focused clinical approaches in community integration.
Not all the folks who are doing work in a psychedelic space with an equity mindset are included in this map. There's just a couple that I wanted to focus on.
First off, MAPS is surely doing quite a bit to address equity in a psychedelic space. They've developed this health equity plan outlining ways that they're going to approach this, shared in their recent bulletin. This includes fundraising and allocating $5.5 million to 4 main initiatives over the next 3 years.
Developing scholarships for training therapists from historically marginalized communities, supporting clinics and patients in the expanded access program with a treatment access fund, building inclusive and equitable community outreach in education, hiring new team members at MAPS and MAPS PVC that are dedicated to the implementation of health equity.
They've already hosted an MDMA training specifically for therapists of color, of which I was a participant, and have organized a diversity working group to review previous studies and protocols for ways that they might adjust them and treat them, or it's elevated equity in different ways.
That might include things like how are you recruiting? Where are we recruiting? What's the language that we might be using in our recruiting materials? What about the images that we're using? How can people being paid and offered to be in the studies thinking about the resource limitations that people might have?
How do you truly make this equitable? Knowing the education and there are groups like Chacruna who host community education, featuring people of color in order to raise a sense of visibility.
The Fruiting Bodies Collective developing an equity-centered framework for psychedelic education to Measure 109, which is in Oregon and was a ballot initiative passed to allow the manufacture, delivery, and administration of psilocybin for personal development, and this is groundbreaking.
On a clinical end, there are organizations like Doorway Therapeutic Services, certain POC approval, Ketamine-Assisted Psychotherapy, along with Sage Institute developing sliding scale models in order to be able to offer psychedelic therapy for those who might not traditionally be able to afford it.
On the community end we might have organizations like the equity and psychedelic therapy initiative, the psychedelic collective, the psychedelic social justice collective, and The Ancestor project, made up of members of the community, speaking directly to the community, trying to help reduce stigma serving as sources of community support, helping to dispel myths.
On the research end, the most notable was one method by a team with Mark Williams that looked specifically at how MDMA might impact communities of color. They had a very tiered and focused approach for recruiting people of color and adjusting the work that they were doing for those communities. These are some of the considerations that came from that.
Jamilah George was one of the team members at UConn doing the study. What she said was that we were basically trying to take a study that's already been designed for White people and make it work for people of color.
She said that the therapy has to make sense and feel like a good fit for the person who's getting it. As to what might feel like good therapy for a White person might not necessarily resonate with somebody from a different ethnic group.
There's a lot that they learned from doing the study, that the recruitment was different, that perhaps people of color need a little bit more support in the screening process in order to combat the cultural stigma that's associated with treatment-seeking mental health and fears with using psychedelics. Even in clinical settings, that there might be a harmful outcome.
They had to tailor their lists to be a little bit different. Finding music that might match the participants' cultural backgrounds and intersecting identities. Thinking more deeply about the physical space and how it might have a little bit more cultural representation.
That people of color perhaps needed more support throughout the preparation periods, so that they can actually retain them through the studies. These are things that hadn't been thought of until it was being done.
I know a lot of these pieces is related to what we might call the set and setting in a psychedelic space, where set might be your mindset and your setting is your environmental context.
W E B Du Bois says, "It's a particular sensation. This double consciousness. This sense of always looking at oneself through the eyes of others, measuring one's soul by a tape of a world that looks on in amused contempt and pity.
"One feels his 2-ness, an American, a Negro, 2 souls, 2 thoughts, 2 unreconciled strivings, 2 warring ideals in one dark body, whose dogged strength alone keeps it from being torn asunder."
I share this quote to emphasize this piece, that when we think about setting, it does not exist independently of culture. There are inner characteristics of set can be influenced by physical surroundings.
What we might see is that if it's a way in which identity, and motivation, and experiences with discrimination might influence our experiences. There are certain psychosocial processes that are associated with racial socialization that contribute to the way that psychedelic experiences are ultimately interpreted.
That we have to really look from this impact or this element of set and setting from a more holistic perspective that might include things like race-based trauma.
Although we have this research that's developing protocols for how we might be doing treatment, that without adequate inclusion there are all these different pieces that we might be missing that carries with it this risk that if this becomes legal, and this is offered, so that we might still incur harm and not fully understanding everything that might be going on for a diverse population.
I share this slide because these are the faces of people of color doing work in the psychedelic space. We're thinking deeply about many of these things. Often, there is this element of not being seen as a person of color in this case. It is important for these faces to be seen.
It'll encompass the entirety of the psychedelic field working towards equity. The folks who are working for its equity, are folks who are diverse, risk backgrounds, ethnic experiences, socioeconomic status, racial differences. Where enriching the field as a whole through their lived experience and working at organizational levels, at community levels within training programs and research, to think more about equity.
They contribute this to what we've talked to about earlier, the curb-cut effect, that the work that they are doing is not only impacting the folks who look like them, but ultimately impacting all of us. There are elements of all of this where it's not just them that are required to do this work, but it's us as well.
How are we thinking about our own place in the world? How are we thinking about our own place in the environment? How are we thinking about the impacts of history on the people that we might be serving, whether as psychiatrists or as a nurse or as a therapist?
How are we expanding our world views to be a little bit more inclusive, to break away, perhaps, sometimes from the Western thinking of placing people in boxes but rather opening a sense of fluidity that creates a space for an understanding that's deeper, that this isn't something that's only for those people to do, but rather for all of us?