JointHealth™ express   June 6, 2019

Call for patient input on upadacitinib for moderate to severe active rheumatoid arthritis

Do you have moderate to severe active rheumatoid arthritis? 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 upadacitinib for moderate to severe active rheumatoid arthritis.

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 rheumatoid arthritis related symptoms and problems that impact the patients' day-to-day life and quality of life? For example: what aspects of rheumatoid arthritis are more important to control, how does rheumatoid arthritis affect day-to-day life, and are there any activities that the patient is not able to do as a result of rheumatoid arthritis?
  2. How well are patients managing their rheumatoid arthritis with currently available treatments? Examples of the types of information to be included in the answer are:
    • What therapy are patients using for rheumatoid arthritis?
    • How effective is current therapy in controlling the common aspects of rheumatoid arthritis
    • 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 rheumatoid arthritis?
    • 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 upadacitinib for the treatment of rheumatoid arthritis, what are the expectations for the medication?
    • Is it expected that the lives of patients will be improved by upadacitinib, and how?
    • Is there a particular gap or unmet patient need in current therapy that upadacitinib will help alleviate?
    • Would patients be willing to experience serious adverse effects with upadacitinib if they experienced other benefits from the medication?
    • How much improvement in the condition would be considered adequate? What other benefits might upadacitinib have, for example, fewer hospital visits or less time off work?
  5. What experiences have patients had to date with upadacitinib as part of a clinical trial or through a manufacturer's compassionate supply?
    • What positive and negative effects does upadacitinib have on the condition?
    • Which symptoms does upadacitinib manage better than the existing therapy and which ones does it manage less effectively?
    • Does upadacitinib cause adverse effects?
    • Which adverse effects are acceptable and which ones are not?
    • Is upadacitinib easier to use?
    • How is upadacitinib expected to change a patient's long-term health and wellbeing?
If you live with rheumatoid arthritis or care for someone with rheumatoid arthritis, please send us your input by Thursday, July 18, 2019, so that we may make a submission by the July 22nd deadline. Your input will be anonymous.

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