JointHealth™ express   November 11, 2022

Call for patient input on upadacitinib (Rinvoq®) for ankylosing spondylitis

Do you live with ankylosing spondylitis? We need your valuable input.

The Canadian Agency for Drugs and Technologies in Health (CADTH) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for upadacitinib for the treatment of ankylosing spondylitis.

To help them make their recommendations, CADTH 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 CADTH.

These are the questions they are asking:
  1. Disease experience: How does ankylosing spondylitis impact patients’ and caregivers’ day-to-day life and quality of life? Are there any aspects of ankylosing spondylitis that are more important to control than others?
  2. Experiences with currently available treatments: How well are patients and caregivers 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 currently using for ankylosing spondylitis ?
    • How effective are current therapies in controlling common aspects of ankylosing spondylitis ? 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 upadacitinib that is not achieved in currently available treatments?
    • How might daily life and quality of life for patients, caregivers, and families be different if upadacitinib 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 upadacitinib if they experienced other benefits from the medication?
  4. Experiences with upadacitinib: What experiences have patients had to date with upadacitinib 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 upadacitinib?
    • What disadvantages have been experienced?
    • How have the benefits and disadvantages of upadacitinib impacted the lives of patients, caregivers, and families?
    • Is upadacitinib easier to use than previous therapies? If so, how?
    • Has upadacitinib caused adverse effects? Which adverse effects are acceptable (i.e. can be tolerated) and which ones are not?
If you live with ankylosing spondylitis or care for someone with ankylosing spondylitis, please send us your input by Monday, November 14, 2022. Your input will be anonymous.

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