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JointHealth™ express   March 9, 2012

Do you have vasculitis? We want your valuable input.

The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input on rituximab (Rituxan®) for the treatment of vasculitis. The CDR is part of the Canadian Agency for Drugs and Technologies in Health. 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 vasculitis-related symptoms and problems that impact the patients' day-to-day life and quality of life?

    For example: what aspects of vasculitis are more important to control, how does vasculitis affect day-to-day life, and are there any activities that the patient is not able to do as a result of vasculitis?

  2. How well are patients managing their vasculitis with currently available treatments? Examples of the types of information to be included in the answer are:
    • What therapy are patients using for vasculitis?
    • How effective is current therapy in controlling the common aspects of vasculitis?
    • 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 vasculitis?
    • How do treatments impact on the caregivers' daily routine or lifestyle?
    • Are there challenges in dealing with adverse effects related to current therapy?

  4. What are the expectations for rituximab for those who have no experience using the medication?
    • Is it expected that the lives of patients will be improved by rituximab, and how?
    • Is there a particular gap or unmet patient need in current therapy that rituximab will help alleviate?
    • Would patients be willing to experience serious adverse effects with rituximab if they experienced other benefits from the medication?
    • How much improvement in the condition would be considered adequate? What other benefits might rituximab have, for example, fewer hospital visits or less time off work?

  5. What experiences have patients had to date with rituximab as part of a clinical trial or through a manufacturer's compassionate supply?
    • What positive and negative effects does rituximab have on the condition?
    • Which symptoms does rituximab manage better than the existing therapy and which ones does it manage less effectively?
    • Does rituximab cause adverse effects?
    • Which adverse effects are acceptable and which ones are not?
    • Is rituximab easier to use?
    • How is rituximab expected to change a patient's long-term health and well-being?
If you live with vasculitis or care for someone with the disease, please send us your input. Patient groups are given 15 days to share people’s experiences and expectations of medications, so please provide your input by Tuesday, March 13, 2012, so that we may submit a report by the March 16 deadline. Your input will be anonymous, unless you expressly state that you wish to have your name included in the submission.

Please send your input to: info@jointhealth.org.