B.C. methadone patients pen guide for users of opioid-substitution program

Al Fowler is pictured in Vancouver, Friday, Feb. 10, 2017. (Jonathan Hayward / THE CANADIAN PRESS)

VANCOUVER -- Had Al Fowler known more about his rights before enrolling in British Columbia's methadone treatment program in 2010, he may have avoided what he describes as a two-year "horror-show" while living in Vancouver's Downtown Eastside.

Fowler says the stigma and exploitation he experienced is part of what inspired him to co-author a handbook on how to navigate the province's opioid-substitution therapy program.

"It's really important that we get this out from our point of view, how we see it, how it is to us, because that's how the guy who's going in to the clinic is going to see it," said Fowler, president of the B.C. Association for People on Methadone, who has been in the program for seven years.

"Part of this booklet was to help people navigate that, to let them know that they have rights, because it's just another medication ... and we shouldn't be penalized for that."

The 43-page booklet, titled Patients Helping Patients Understand Opioid-Substitution Therapy, was co-ordinated by the Centre for Addictions Research of B.C and funded by the provincial Health Ministry. It is scheduled for release next week but is available on the centre's website.

Annual meetings that were started by the government in 2013 led to the creation of the handbook, which taps into the experiences of the seven people who wrote the guide.

Co-author Garth Mullins said the team wanted to ensure the handbook had a "street-level perspective" and provided the "unvarnished truth" behind the program.

"It's not trying to give people a sales pitch," Mullins said. "It's trying to give people the straight goods on what it is like to try and get yourself out of the hole of addiction."

Marginalized people are often left on their own to figure out a "very cumbersome and bureaucratic" process, Mullins added.

The booklet comes with a glossary of terms used in treatment. Sections of it also deal with taking methadone during pregnancy, travelling while on treatment and the challenge of getting medication while in jail or in hospital.

Dan Reist, an assistant director at the addictions research centre, said the organization provided a support role and left most of the content creation to the authors.

It's important that doctors, pharmacists and policy-makers embrace the handbook so it reaches as many people as possible, Reist said.

"We need the system to see this as a resource that has value," he said. "That's why it's important that we not poke them … but at the same time hold their feet to the fire."

The handbook cost about $15,000 to produce, which included paying the co-authors for their time but does not cover its distribution to places like pharmacies and doctors' offices, he added.

He believes the handbook is one of the world's first. The only similar one Reist could find was in New Zealand.

Reist and others involved in the project saw it as part of a larger push to include patients' voices in the development of programs and policies.

"Health is not about experts fixing broken people," he said.

Bill Nelles, a retired addiction counsellor based on Vancouver Island, said the handbook attempts to show the provincial government that people in drug-recovery programs want to be involved in matters that concern them.

"You may have heard, 'Nothing about us without us,' " said Nelles, who has been on a methadone program for 40 years. "But we're not there yet."

Mullins said those in methadone recovery dream of the day they help inform policy and budgetary decisions.

"I'm tired of seeing people die from bad drug policy, as much as from bad drugs," he said. "Today we're writing the manual. Tomorrow I hope we're writing the legislation."