Canada’s Drug Agency (CDA-AMC) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for sarilumab (Kevzara®) for polymyalgia rheumatica.
To help them make their recommendations, CDA-AMC accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with CDA-AMC.
These are the questions they are asking:
- Disease experience:How does polymyalgia rheumatica impact patients’ and caregivers’ day-to-day life and quality of life? Are there any aspects of polymyalgia rheumatica that are more important to control than others?
- Experiences with currently available treatments:How well are patients and caregivers managing their polymyalgia rheumatica with currently available treatments? Examples of the types of information to be included in the answer are:
- What therapy are patients currently using for polymyalgia rheumatica?
- How effective are current therapies in controlling common aspects of polymyalgia rheumatica? What benefits have patients’ experienced?
- What side effects have been experienced? Are there side effects that are more difficult to tolerate than others?
- Are there any difficulties accessing current therapy (cost, travel to clinic, time off work)?
- Are there any difficulties receiving the treatment (swallowing pills, infusion lines)?
- How do current treatments impact caregivers' daily routine or lifestyle?
- Improved outcomes:What improvements would patients and caregivers like to see in a new treatment such as sarilumab that is not achieved in currently available treatments?
- How might daily life and quality of life for patients, caregivers, and families be different if sarilumab provided those desired improvements?
- What trade-offs do patients, families, and caregivers consider when choosing therapy? For example, would patients be willing to experience serious side effects with sarilumab if they experienced other benefits from the medication?
- Experiences with sarilumab:What experiences have patients had to date with sarilumab as part of a clinical trial or through a manufacturer's compassionate supply?
- Compared to any previous therapies’ patients have used, what benefits have been experienced with sarilumab?
- What disadvantages have been experienced?
- How have the benefits and disadvantages of sarilumab impacted the lives of patients, caregivers, and families?
- Is sarilumab easier to use than previous therapies? If so, how?
- Has sarilumab caused side effects? Which side effects are acceptable (i.e. can be tolerated) and which ones are not? How were side effects managed?
If you live with polymyalgia rheumatica with or care for someone with polymyalgia rheumatica with, please send us your input by October 10, 2025. Your input will be anonymous.
Please contact us at feedback@jointhealth.org to provide your input or arrange for a phone interview at 604-974-1366.