JointHealth™ express   February 10, 2022

Call for patient input on anifrolumab (Saphnelo®) for systemic lupus erythematosus

Do you live with systemic lupus erythematosus? We need your valuable input.

The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for anifrolumab for the treatment of systemic lupus erythematosus (lupus). The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).

To help them make their recommendations, the CDR 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 the CDR.

These are the questions they are asking:
  1. Disease experience: How does lupus impact patients’ and caregivers’ day-to-day life and quality of life? Are there any aspects of lupus that are more important to control than others?
  2. Experiences with currently available treatments: How well are patients and caregivers managing their lupus with currently available treatments? Examples of the types of information to be included in the answer are:
    • What therapy are patients currently using for lupus?
    • How effective are current therapies in controlling common aspects of lupus? What benefits have patients’ experienced?
    • What side effects have been experienced? Are there adverse 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?
  3. 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 adverse effects with anifrolumab if they experienced other benefits from the medication?
  4. 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 adverse effects? Which adverse effects are acceptable (i.e. can be tolerated) and which ones are not?
If you live with lupus or care for someone with lupus, please send us your input by Friday, February 11, 2022. Your input will be anonymous.

Please contact us at to provide your input or arrange for a phone interview at 604-974-1366.