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JointHealth™ express   August 7, 2019


Call for patient input on ixekizumab for active ankylosing spondylitis

Do you have active ankylosing spondylitis? 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 ixekizumab for active ankylosing spondylitis.

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. What are the ankylosing spondylitis related symptoms and problems that impact the patients' day-to-day life and quality of life? For example: what aspects of ankylosing spondylitis are more important to control, how does ankylosing spondylitis affect day-to-day life, and are there any activities that the patient is not able to do as a result of ankylosing spondylitis?
  2. How well are patients managing their ankylosing spondylitis with currently available treatments? Examples of the types of information to be included in the answer are:
    • What therapy are patients using for ankylosing spondylitis?
    • How effective is current therapy in controlling the common aspects of ankylosing spondylitis?
    • Are there adverse effects that are more difficult to tolerate than others?
    • Are there hardships in accessing current therapy?
    • Are there hardships in receiving the treatment (swallowing pills, infusion lines)?
    • Are there needs, experienced by some or many patients, which are not being met by current therapy?
    • What are these needs?
  3. What challenges do caregivers face in caring for patients with ankylosing spondylitis?
    • How do treatments impact on the caregivers' daily routine or lifestyle?
    • Are there challenges in dealing with adverse effects related to current therapy?
  4. Based on no experience with ixekizumab for the treatment of ankylosing spondylitis, what are the expectations for the medication?
    • Is it expected that the lives of patients will be improved by ixekizumab, and how?
    • Is there a particular gap or unmet patient need in current therapy that ixekizumab will help alleviate?
    • Would patients be willing to experience serious adverse effects with ixekizumab if they experienced other benefits from the medication?
    • How much improvement in the condition would be considered adequate? What other benefits might ixekizumab have, for example, fewer hospital visits or less time off work?
  5. What experiences have patients had to date with ixekizumab as part of a clinical trial or through a manufacturer's compassionate supply?
    • What positive and negative effects does ixekizumab have on the condition?
    • Which symptoms does ixekizumab manage better than the existing therapy and which ones does it manage less effectively?
    • Does ixekizumab cause adverse effects?
    • Which adverse effects are acceptable and which ones are not?
    • Is ixekizumab easier to use?
    • How is ixekizumab expected to change a patient's long-term health and wellbeing?
If you live with ankylosing spondylitis or care for someone with ankylosing spondylitis, please send us your input by Thursday, September 19, 2019, so that we may make a submission by the September 23rd deadline. Your input will be anonymous.

Please complete the online questionnaire or contact us at feedback@jointhealth.org to provide your input or arrange for a phone interview at 604-974-1366.