We work in collaboration on drug development. One of us is a PhD in Pharmaceutical Sciences and holds an MBA, one is a neurologist, an MD with an MBA, and the third one of us brings a background in mind-body medicine. So it should be no surprise that our days are fueled by the search for breakthrough therapies and all that involves: developing pharmaceutical products and designing clinical trials. This is what has guided us during years of working in research hospitals and out in the field. And that data-driven focus only sharpened when we pivoted to the private sector in Toronto’s thriving medical research community.
But an equally powerful mission drives and inspires us: the patient and the patient experience. How often in the pharmaceutical field do we look beyond our research studies to seek the voices of the patients themselves? Not nearly enough.
As executives in a publicly traded Canadian psilocybin company, with a focus on palliative care, we may not know –as yet– when our legalized pharmaceutical offerings will find their way to market. But we do know, thanks to the courage of those terminally ill patients willing to provide spoken-word testimony about their own lived experience, that these efforts are urgently needed.
In May, at the Catalyst Summit 2022: Psychedelic Medicine Global Conference, at Queen’s University in Kingston Ontario, two patients were included as speakers among the psychedelic experts and luminaries. Thomas Hartle is known to some Canadians as the first patient to receive a legal course of psilocybin under the new Special Access Program (SAP) from Health Canada. Steve Allgood, also among the first Canadians to receive medicinal psilocybin, spoke as well.
Their courage in coming forward to share their own stories inspired us to request interviews. Allgood granted us permission to share his story. In listening to his voice, we are reminded why we work as hard as we do to rapidly develop psilocybin products for late-stage cancer patients that are reliable, standardized, and safe.
Listening to Allgood’s experience inspires us as we deepen our drug development focus on psilocybin. Our lab is driven by data emerging from placebo-controlled randomized clinical trials. While what we learn as individuals from stories from Allgood and other patients who agree to share their experiences, may not inform how we do our work, these patient voices – so rich with insight and humanity– do serve to explain why we do this work.
Just two days before his wedding, Allgood at the age of 28 was diagnosed with a rare, deadly brain cancer known as Diffuse Intrinsic Pontine Glioma (DIPG). A large tumor was pressing on his brainstem and spinal cord. Five days after his wedding, he asked his doctors, “What’s next?” He was told his cancer was terminal and that he had about nine to 18 months more to live. With no treatment options available, the oncologist prescribed that Allgood should “go home, eat burgers, drink beer and make memories.”
First, Allgood tried his best to stay positive, hoping he would be in the less than 1% group that survives this type of cancer. But that hope faded once he began to lose motor function and balance. He suffered severe headaches. End-of-life anxiety set in.
Allgood’s wife was pregnant with their son and he constantly reminded himself, “I am going to be a dad and I have to stay alive.” But the sense of dread was overwhelming, and he felt paralyzed by fear. He stayed in bed all day, overcome by distress, “I worried all day and feared death every night.”
Then, Allgood’s brother-in-law told him about the benefits of certain psychedelic medicines.
It was an early February morning, after many months of waiting for his Health Canada approval, Allgood recalled that he felt nervous, but ready for his psilocybin journey. At 10 a.m., Allgood swallowed 3 grams of dried psilocybin mushrooms. Within 30 minutes he started feeling the psychedelic effects, which lasted 3 to 4 hours. The psychedelic journey ended that afternoon, but Allgood said the enduring effects lasted months.
“Psilocybin brings awareness into your mind, it’s like 10 years of psychotherapy into a six-hour session.” Allgood further observed, “I now have more of an overall calmness and feeling of gratefulness for life.”
Having been raised in a small town in Ontario with parents who were always working and older brothers who ignored him, Allgood said he had grown up feeling isolated. “The psychedelic experience allowed me to uncover the feelings of severe neglect that I experienced growing up. I was a product of my environment, being raised around alcoholics and anger.” He noted his type of brain cancer, DIPG, is considered a pediatric cancer.
Allgood reflected that his psychedelic experience allowed him to recognize that his own childhood had been filled with trauma, and also to understand that his parents had used alcohol and anger as a response to their own pain. He shared that this insight brought him a measure of comfort. “It allowed me to forgive them. The pain and trauma they caused me was not on purpose. They were just their own hurt individuals and unconsciously made decisions that have affected me throughout my life.” He added, “it made me see that my parents were reacting to their own generational pain.”
A sense of expanded consciousness brought him “a connection with the universe,” said Allgood. “It just made me feel that we were all here for an experience and that when you pass, it’s not the end.”
A visual meditation with a focus on trees and leaves brought Allgood a vision. “I could see my late grandparents and feel the love that they were sending from what felt like an ancestral treetop, which gave me an overwhelming sense of joy.”
The next day, Allgood met with a psychotherapist for an integration session to discuss the experience, including the visualizations. Better understanding his life, he said, gave him the strength to move forward. “I don’t just sit there on the couch stuck in the past being depressed anymore. Now I can acknowledge what happened and figure it out. Now I’m not controlled by those memories or anger anymore.”
During one of Allgood’s earlier mushroom sessions during the depths of his depression, he had a vision that his life was like a movie, already written from start to an end with a forgone conclusion.
But the psilocybin experience changed this perspective, he said. “Why should I live in a movie according to a script I didn’t write? From now on, I will make my own storyline and live a life where I make the decisions.” Among those decisions are working with his mother-in-law on a variety of nutritional best practices, and leaving behind the prison of being “stuck in my head.”
Today he said he lives in the present, where his greatest joy is “being with my wife and kids.”
Allgood’s sole focus now is ensuring that his three-year-old son and daughter of 20 months have the best childhood memories and that he finds a way to fully express his gratitude to his wife and mother-in-law, who both supported him in seeking psychedelic-assisted therapy. This experience, he said, is what allows him to navigate a dire diagnosis and yet still be fully engaged with his life. “The mushrooms told me that I can lie in my bed and count the days, or I can get up and continue living with a disease.”
The more patients, such Allgood, speak up about their psilocybin experience and its transformational wellness effects, the better our industry will be prepared to provide the medical breakthroughs in pharmaceutical psilocybin so desperately needed.
Remarkable clinical trials with palliative care patients at institutions ranging from Johns Hopkins to NYU and UCLA, clearly document how disorders including treatment-resistant depression and end-of-life distress can be alleviated with medicinal psilocybin.
Speaking as biopharma executives, we can say that hearing the patient experience, hearing the patients speak, deepens our insight and re-doubles our efforts, bringing nuance and dedication to this important task. Patients need to be asked to share their narratives and be supported in telling their stories. Just as importantly, the medical community and executives in biopharma need to listen.