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JointHealth™ express   October 28, 2016

Call for patient input on treatment for rheumatoid arthritis

Do you have rheumatoid arthritis or care for someone who does? We want your valuable input

The Common Drug Review (CDR) is welcoming input on the manufacturer’s submission of sarilumab for the treatment of rheumatoid arthritis (RA) from patients and their caregivers.

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 groups, like Arthritis Consumer Experts (ACE). 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 (RA) related symptoms and problems that impact the patient's day-to-day life and quality of life? For example: what aspects of RA are more important to control, how does RA 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 RA?
    • How effective is current therapy in controlling the common aspects of RA?
    • Are there adverse effects that are more difficult to tolerate than others?
    • Are there hardships in accessing current therapy?
    • 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 sarilumab, what are the expectations for the medication?
    • Is it expected that the lives of patients will be improved by sarilumab, and how?
    • Is there a particular gap or unmet patient need in current therapy that sarilumab will help alleviate?
    • Would patients be willing to experience serious adverse effects with sarilumab if they experienced other benefits from the medication?
    • How much improvement in the condition would be considered adequate? What other benefits might sarilumab have, for example, fewer hospital visits or less time off work?
  5. What experiences have patients had to date with sarilumab as part of a clinical trial or through a manufacturer's compassionate supply?
    • What positive and negative effects does sarilumab have on the condition?
    • Which symptoms does sarilumab manage better than the existing therapy and which ones does it manage less effectively?
    • Does sarilumab cause adverse effects?
    • Which adverse effects are acceptable and which ones are not?
    • Is sarilumab easier to use?
    • How is sarilumab expected to change a patient's long-term health and well-being?
If you live with rheumatoid arthritis or care for someone with the disease, please send us your input by Tuesday, November 1, 2016, so that we may submit a report by the November 2 deadline. Your input will be anonymous. No names or identifying information of patients will be included in the submission.

Please contact us at info@jointhealth.org to provide your input or arrange for a phone interview.