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 inebilizumab for the treatment of adult patients with immunoglobulin G4-related disease (IgG4-RD).
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 immunoglobulin G4-related disease impact patients’ and caregivers’ day-to-day life and quality of life? Are there any aspects of IgG4-RD that are more important to control than others?
- Experiences with currently available treatments:How well are patients and caregivers managing their immunoglobulin G4-related disease with currently available treatments? Examples of the types of information to be included in the answer are:
- What therapy are patients currently using for IgG4-RD?
- How effective are current therapies in controlling common aspects of IgG4-RD? 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 inebilizumab that is not achieved in currently available treatments?
- How might daily life and quality of life for patients, caregivers, and families be different if inebilizumab 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 inebilizumab if they experienced other benefits from the medication?
- Experiences with inebilizumab:What experiences have patients had to date with inebilizumab 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 inebilizumab?
- What disadvantages have been experienced?
- How have the benefits and disadvantages of inebilizumab impacted the lives of patients, caregivers, and families?
- Is inebilizumab easier to use than previous therapies? If so, how?
- Has inebilizumab 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 immunoglobulin G4-related disease or care for someone with immunoglobulin G4-related disease, please send us your input by May 16, 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.