In BC alone, more than 16,700 people receive opioid substitution treatment (OST) as a way of reducing harms from illicit opioid dependence. Patients face stigma and multiple levels of bureaucracy in the medical system to access information and treatment.

To help navigate this, the University of Victoria’s Centre for Addictions Research (CARBC) has produced a users’ guide to the world of prescription opioids such as methadone and suboxone, treatment and recovery. The handbook “Patients Helping Patients Understand Opioid Substitution Treatment” was co-written by a group of OST patients, supported by funding from the Province of BC. CARBC Assistant Director Dan Reist calls the handbook “an important tool in the face of BC’s overdose epidemic.”

The 43-page handbook is available for download on the CARBC website; print copies are being distributed to methadone and other opioid-substitution dispensing pharmacies, social service agencies and authorized prescribers across BC.

The following is a Q&A with Dan Reist, CARBC Assistant Director, and Garth Mullins, handbook co-author and harm reduction activist. Both are available to media via the contacts below.

Q? How does the OST handbook help address the overdose emergency?

Dan Reist: The handbook isn’t a clinical guide; it doesn’t contain all the details about OST but provides what patients need when considering or starting OST. It’s written by patients and reflects their experiences and accurately reflects the current science and the medical system. Through our work on health promotion related to substance use, we’ve learned that resilience—and thereby, health—is built through connections and relationships, as well as by having high self-expectations and by having opportunities to contribute to solutions in a meaningful way. It emphasizes the relationships that will be important in providing care and guidance along the way. It’s another lifesaving tool to protect against overdose and other harms.

Q? Why did CARBC produce the handbook as a project co-written by OST patients?

Reist: Too often patients are expected to be passive consumers of health care services. As a result, the services may be high quality from the perspective of the service providers, but they don’t meet the needs of the patients because the patient experience has not informed the design of the services. The need for this kind of handbook was repeatedly expressed in consultations on OST organized by CARBC at the request of the BC Ministry of Health. It’s about making patients partners in designing and delivering services.

Q? From the perspective of an Opioid Substitution Therapy (OST) patient, why is this handbook so important?

Garth Mullins: Patients suffer through a Byzantine bureaucracy of medical jargon and advice from well-meaning experts who haven’t experienced this life. The OST handbook is not trying to sell anything. It tells people looking to get treatment for addiction the often ugly truth about their options as well as the potentially life-changing possibilities.

Q? How will it be different now for someone considering OST, because of the handbook, than it was for you when you started OST?

Mullins: Starting out, most people get at best partial information—rumor, falsehoods or the hopeful words of well-meaning service providers. They need to hear from peers—from people who’ve actually gone through the process. The book doesn’t just say what OST is, but what should be. Prescription heroin, for example, is almost unavailable, but could save lives and much misery.

Q? Why did you want to be a part of the writing team, and what did you get out of that process?

Mullins: Because I’m sad and angry. I’ve gone to so many memorials and funerals for those dead of overdose, who couldn’t get help and couldn’t get support. The medical system made them feel like outsiders. It alienated them. Too much is done in the name of helping drug users without giving any room to the actual voices of that experience. The handbook is just a start. One day those most affected by government and drug policy and legislation should have a hand in writing it.
Hear Mullins’ expanded answer on SoundCloud.