JointHealth™ express   December 11, 2020

Call for patient input on anakinra (Kineret®) for Still’s disease

Do you live with Still’s disease? 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 anakinra for the treatment of Still’s disease with active systemic features, in adults and pediatric patients aged 8 months and older with a body weight of 10 kg or above.

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 Still’s disease impact patients’ and caregivers’ day-to-day life and quality of life? Are there any aspects of Still’s disease that are more important to control than others?
  2. Experiences with currently available treatments: How well are patients and caregivers managing their Still’s 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 Still’s disease?
    • How effective are current therapies in controlling common aspects of Still’s disease? 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 anakinra that is not achieved in currently available treatments?
    • How might daily life and quality of life for patients, caregivers, and families be different if anakinra 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 anakinra if they experienced other benefits from the medication?
  4. Experiences with anakinra: What experiences have patients had to date with anakinra 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 anakinra?
    • What disadvantages have been experienced?
    • How have the benefits and disadvantages of anakinra impacted the lives of patients, caregivers, and families?
    • Is anakinra easier to use than previous therapies? If so, how?
    • Has anakinra caused adverse effects? Which adverse effects are acceptable (i.e. can be tolerated) and which ones are not?
If you live with Still’s disease or care for someone with Still’s disease, please send us your input by Tuesday, January 12, so that we may make a submission by the January 15 deadline. Your input will be anonymous.

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