Janis Hughes is not ready to die.
The very thought of it brings on an overwhelming feeling of panic. The 65-year-old Winnipeg woman has Stage 4 breast cancer, which has spread to her bones and right lung. Her condition is terminal.
"There's a sense of dread combined with urgency," said Hughes in an interview with Go Public.
"Am I going to get everything done that I need to get done and am I going to have the quality experiences that I want?" she said. "It's hard."
Hughes was first diagnosed with breast cancer in 2011. She's had a lumpectomy, mastectomy, several rounds of chemotherapy and caught a flesh-eating disease in hospital. Now she's being told she has just two years to live — and she's holding on.
"I'm greedy for life still …I have baskets full of yarn waiting to be knit. I have all sorts of photography skills I want to learn. I have beautiful nieces and nephews that I want to spend time with," said Hughes.
"I'm not ready to go. But I want to be ready to go."
WATCH | 'I'm not ready to go,' says terminal cancer patient:
Hughes has spent hours researching how to improve her quality of life and believes psilocybin, a compound found in fungi commonly known as magic mushrooms, may be the answer.
The problem is that psilocybin is illegal in Canada.
Hughes and other patients with terminal illness have requested access to it for medical purposes — something Health Canada has allowed dozens to do in the last two years through a Section 56(1) exemption.
But last month, a week before she submitted her request, the rules changed. Hughes's request was denied.
Health Canada says the rule change came because more research on the safety and efficacy of psilocybin is needed. But a chorus of voices working in the field of psychedelic therapy say the new system is creating difficult roadblocks — and causing more harm to palliative patients already struggling.
Better quality of life, studies suggest
There is a growing body of scientific evidence that psilocybin may help lessen existential dread.
For example, in a 2016 clinical trial of 51 psychologically distressed cancer patients, Johns Hopkins researchers found patients and their doctors observed "decreases in [the patients'] depressed mood and anxiety, along with increases in quality of life, life meaning, and optimism."
There are more clinical trials underway with promising early results, said Ron Shore, a research scientist and PhD candidate studying the clinical application of psilocybin with the Dimensions Health Research Collaborative at Queen's University in Kingston, Ont.
"What we're finding … is people simply have a revitalization of interest in their life, a real reduction in their anxiety symptoms, and a real reduction in their depressive symptoms," he said.
Research suggests psilocybin can affect the way areas of a person's brain communicate with each other, shutting off subconscious thought patterns to let others emerge.
Experts who spoke to Go Public say that with the right tools to process such an experience, the thought pattern of something like "I'm no good"' or "My life has no purpose" can be diverted to something more positive and peaceful.
"For people at end-of-life who are struggling, psychedelics can simply offer insights into … their own kind of meaning of their own lives and their death, and raises a heightened sense of connectivity to others around them as well," said Shore. "So it tends to improve their life."
For Hughes, she knows she could access magic mushrooms underground immediately. But she wants to be able to get psilocybin-assisted psychotherapy, too. During the process, a therapist trained in psychedelic treatment guides a person through the experience and helps them integrate new ways of thinking into their daily life. Hughes would need to obtain the drug legally in order to take it to a specialized therapist and consume it in a therapeutic setting.
On Jan. 12, after months completing paperwork, Hughes made a request to Health Canada for an exemption under Section 56(1) of the Controlled Drugs and Substances Act.
Two weeks later, Health Canada denied her request.
"I felt total, utter dismay," she said. "I had every expectation that I was going to be approved, and I was telling my friends that I was going to be approved…. So I was absolutely shocked."
In the rejection letter, Health Canada told Hughes she had not exhausted all possible legal routes available to access magic mushrooms.
"For this reason, your exemption request is not being granted," the letter said.
Unbeknownst to Hughes, Health Canada had changed their rules.
WATCH | Cancer patient seeks access to psychedelic drug:
Health Canada adjusts protocol
Under the old rules, to request a Section 56(1) exemption to possess and consume psilocybin, a person must show they are seeking the drug for a medical purpose and make a case for access on compassionate grounds.
Patients needed to include a letter of support from their doctor that confirms their diagnosis is serious, and that shows previous treatments have failed. If granted, it would then be up to the individual to source the drug in any form.
On Jan. 5, Health Canada changed that. The agency added psilocybin to an existing list of drugs not approved in Canada, under what's known as the Special Access Program (SAP). Since that date, physicians have had the ability to formally apply for psilocybin in order to prescribe it to their patients — but it's a lengthy and complicated process.
Now, patients are discovering that their only shot at accessing psilocybin is dependent on whether or not their doctor has applied through SAP, and experts say that's a problem.
Through SAP, a physician takes on the responsibility for obtaining and administering the drug — as well as patient liability. On top of the eight-page application, physicians are tasked with monitoring their patient's outcomes and reporting those outcomes back to the government. The physician also has to source the drug for their patient from a list of Health Canada-approved manufacturers producing synthesized versions of the drug.
Health Canada's criteria for considering an exemption through SAP is also more restrictive. According to a statement to Go Public from the agency, the physician must show their patient has "serious or life-threatening conditions," and requires psilocybin "for the purpose of emergency treatment" — which the government doesn't clearly define.
Though Hughes's doctors were, for the most part, intrigued by their patient's desire to try psilocybin, Hughes says none of them would apply to SAP on her behalf.
Dr. Valorie Masuda is a palliative care physician in Cowichan Valley, B.C., and the only doctor in Canada so far who has applied to access psilocybin through SAP. She says few physicians have the time or knowledge to do so.
"It's not even about just filling in the blanks," she said. "Who's going to sit down and phone every single licensed dealer that Health Canada has listed and then try to engage with the CEO to say, 'Do you have health safety data?'"
She says she also had to provide Health Canada with references and evidence from clinical trials proving the safety and efficacy of psilocybin for end-of-life distress.
WATCH | Dr. Masuda explains what happens in your brain when you take psilocybin:
'They don't understand the urgency of this'
Bruce Rowles, 61, doesn't understand what Health Canada thinks it's protecting palliative patients from.
"We're not going to be around long," he said. "I'm just trying to get through what I have left with what I can salvage of my life."
In September 2021, the Vancouver Islander learned he had terminal liver cancer after experiencing physical pain following his COVID-19 shots. He's already surpassed the number of months that his doctors thought he would live.
In January, he applied for a Section 56(1) exemption to access psilocybin, and was turned down.
"When you know you're going to die and you're just waiting, it's the fear of the unknown," he said. "What I think the psilocybin treatment would help with, it would just be taking away that underlying fear that is standing right behind me the whole time, just waiting to grab me."
WATCH | Rowles shares what it's like to know you're going to die:
His partner, Mandy Dobbs, says the government needs to have more compassion for people facing the end of their lives.
"They don't understand the urgency of this," she says.
"It's not something that can go through weeks and months of bureaucratic red tape until finally it gets to ... whoever the right person may be for them to put the stamp of approval."
No difference between patients previously approved
Health Canada hasn't granted any Section 56(1) exemptions for psilocybin since adding the drug to the SAP list. Before that date, 79 patients were approved since August 2020. Go Public knows of eight patients denied exemptions since the rule change, including Hughes and Rowles.
"We were expecting this process to actually be, you know, easier for patients," said Holly Bennett, a patient advocate and communications director for TheraPsil, a not-for-profit group that helps Canadian patients access psilocybin and psychedelic therapy.
"That's not what we're seeing. We're seeing things actually get tighter, more restricted."
Bennett says TheraPsil has helped 58 patients get Section 56(1) exemptions. Hughes is one of their clients.
"There is no difference between the 58 patients who have already been granted an exemption through Section 56 and Janis," said Bennett. "The only difference is there's a new legal pathway."
Bennet says Hughes's case is an example of how the government's new rules leave patients behind.
"It's been very frustrating."
WATCH | Health Canada needs regulatory change, Bennett says:
Health Canada responds
Health Canada told Go Public that it is aware of the increasing interest in psilocybin for therapeutic purposes, but it wouldn't discuss specific cases or individual exemption requests.
In an email, a spokesperson for the federal regulator said Health Canada reviews each request for psilocybin before making a decision about access.
"Health Canada's review includes consideration of the individual's medical condition, whether conventional therapies and other regulatory pathways have been considered, and the scientific evidence available to support the request," the email says.
"While psilocybin has shown promise in clinical trials for the treatment of some indications, further research is still needed to determine its safety and efficacy."
The email said only health-care practitioners can submit requests to the SAP as they would be responsible for the treatment decisions for their patients.
"Practitioners have the role and responsibility to clearly explain the harms and benefits of the drug to their patients, and to monitor and report the results of the use of the drug, including any adverse reactions, to the SAP," said the spokesperson.
Time to legalize psychedelics: scientist
Queen's University researcher Shore says Canada needs to rethink the way it classifies the use of psychedelics
"There's no doubt that the benefits are there. The safety is there. I think that really, until we either legalize it or decriminalize psilocybin, people will continue to struggle with access."
In the U.S., Oregon has legalized psilocybin therapy, and decriminalized psychedelics. Shore says the City of Toronto and the City of Vancouver have both requested Schedule 56(1) exemptions to decriminalize substances within their jurisdictions.
"Death is such a lost opportunity for us to gain wisdom, to gain insight and to gain comfort in the knowledge of our own lives and what's going to happen to all of us," said Shore.
For Rowles, he says he's too close to the end now for his body to be able to process psilocybin. But his voice remains strong for his peers.
"I need to try to do something for the next group of people coming along if I can't do anything for myself. I'm past where that's going to help me, but it will help other people."
As for Hughes, she continues to work with TheraPsil in an attempt to persuade and encourage her physician to take on the SAP process. She's not giving up.
"I want total equanimity as to whether I live for another 20 years or I live for the two that my doctor told me I had," she said. "I want to be totally at peace with that."
Submit your story ideas
Go Public is an investigative news segment on CBC-TV, radio and the web.
We tell your stories, shed light on wrongdoing and hold the powers that be accountable.
If you have a story in the public interest, or if you're an insider with information, contact GoPublic@cbc.ca with your name, contact information and a brief summary. All emails are confidential until you decide to Go Public.
Read more stories by Go Public.