An Alberta woman says she was left in the lurch after signing up for a research study that didn't deliver on promised financial assistance towards buying medical cannabis.
Jaeme Redgwell started using opiates to treat the pain from a 2014 accident, then began using cannabis as an alternative in 2016. But Redgewell's long-term disability coverage didn't cover the cost of the medical cannabis that helped her pain.
She spends up to $300 per month for her medication, but even that isn't enough to purchase her full prescription.
"I was looking for a way to help lessen the burden of the cost of medical cannabis to my family," said Redgwell.
After searching online, Redgwell came across Medical Marijuana Consulting (MMC) based in St. Thomas, Ont.
MMC was using Facebook to recruit subjects for research studies, including one for chronic-pain patients who used cannabis. The study involved cannabis-free topical pain-relief creams, and promised to compensate participants with $100 per month towards medical cannabis.
Redgwell applied for the study, and was accepted in July 2017. She was to receive the creams from a compounding pharmacy, which would bill her private medical insurance. In return, she was to supposed fill out MMC's monthly surveys about her condition.Advertisement
The special creams helped Redgwell manage her pain, and her insurance was billed, but the promised money for her medical cannabis never arrived, she said. Redgwell spent months emailing back and forth with MMC, asking when she'd receive the compensation.
"They just always had excuse after excuse after excuse," she said.
Redgwell did eventually receive a payment of $210 from MMC, but said she was owed much more. She formally opted out of the study in June 2018. The whole process left her feeling exhausted, she said.
"You can't help but feel like you're just being lied to, or being strung along, and that's just how it feels."
In a phone interview, MMC general manager Tony Smilis said he couldn't discuss the study due to medical confidentiality issues, although he acknowledged that the study "wasn't administered properly at the beginning." The issues with reimbursement had to do with a sponsor company dropping out of the study, he said.
In a later email, Smilis said the pain study in question was no longer taking place.
"All participants were compensated for their participation at the sponsor's expense and there are no communications that say each participant is compensated $100/month for the pain study," he wrote.
"We have honored our commitments, and the claim that we did not is inaccurate and does not reflect the truth or our company values."
However, an archived recruitment webpage for the study said participants would be offered "Up to $100 per month credit as payment for medical cannabis." (That webpage is under the name Golden Medical, a name that has been associated with Medical Marijuana Consulting. MMC was bought by Golden Leaf Holdings in January 2018. A press release about that deal describes Golden Medical as a branding initiative to drive patients to MMC.)
The intake form Jaeme Redgwell signed with MMC made no mention of monthly compensation, but in addition to the $100 monthly remuneration mentioned on the recruitment webpage, Redgwell said she was verbally promised compensation on phone calls with MMC employees.
"The funny thing is, I never had any sort of alarm bells going off or anything," said Redgewell.
"It seemed so legitimate. I've never been part of a medical study before, albeit, but they asked questions that I felt would be important to ask, like my current health status, and my healthcare number, and they're direct-billing my insurance company," she said.
Taking part in any experimental drug study entails risks and benefits, said M-J Milloy, a research scientist at the B.C. Centre on Substance Use.
A properly designed study will always help participants understand those potential risks and benefits before they consent, he added. University-based researchers will have their studies approved by a university research ethics board, while private corporations undertaking studies might have their own ethics board.
After hearing the details of Jaeme Redgwell's experience with MMC, Milloy said he suspects the initial consenting process wasn't done properly.
"Because one aspect of a consenting process is that (participants) are provided with a name and phone number and email, et cetera, of who to turn to should things go wrong, and this person is typically independent of the investigators and can bring the participant's concerns to the valid regulatory body," he said.
Private corporations can absolutely run ethically-designed medical studies and can even partner with universities to ensure a well-regulated clinical trial, Milloy said.
If people are considering signing up for a private clinical trial, they should expect to see a consent letter that clearly lays out the study's potential risks and benefits, and participants can request a copy of the study protocol, which makes clear how the study is supposed to operate, he said.
Milloy said he expects Canada to be home to an increasing number of cannabis-related medical studies in the near future.
"And just like any other study medication, we have to ensure that the needs of our participants are paramount," he said.