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 anifrolumab (Saphnelo®) for systemic lupus erythematosus (SLE).
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 systemic lupus erythematosus impact patients’ and caregivers’ day-to-day life and quality of life? Are there any aspects of SLE that are more important to control than others?
- Experiences with currently available treatments: How well are patients and caregivers managing their SLE with currently available treatments? Examples of the types of information to be included in the answer are:
- What therapy are patients currently using for SLE?
- How effective are current therapies in controlling common aspects of SLE? 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 anifrolumab that is not achieved in currently available treatments?
- How might daily life and quality of life for patients, caregivers, and families be different if anifrolumab 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 anifrolumab if they experienced other benefits from the medication?
- Experiences with anifrolumab: What experiences have patients had to date with anifrolumab 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 anifrolumab?
- What disadvantages have been experienced?
- How have the benefits and disadvantages of anifrolumab impacted the lives of patients, caregivers, and families?
- Is anifrolumab easier to use than previous therapies? If so, how?
- Has anifrolumab 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 systemic lupus erythematosus or care for someone with systemic lupus erythematosus, please send us your input by February 4, 2026. Your input will be anonymous.
Please contact us at feedback@jointhealth.org to provide your input.