In a January 9, 2013 newsletter from JointHealth: Do you have juvenile idiopathic arthritis or care for someone who does? We want your valuable input.The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input on the manufacturer’s submission for adalimumab (Humira®) for the treatment of juvenile idiopathic arthritis (JIA). Adalimumab is currently only available to adults with rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis on most provincial drug formularies. Until now, the CDR has not reviewed and made any formulary listing recommendations to Canada’s publicly funded drug plans on adalimumab for the treatment of JIA.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 juvenile idiopathic arthritis (JIA) related symptoms and problems that impact the patients’ day-to-day life and quality of life? For example: what aspects of JIA are more important to control, how does JIA affect day-to-day life, and are there any activities that the patient is not able to do as a result of JIA?

2. How well are patients managing their JIA with currently available treatments? Examples of the types of information to be included in the answer are:

  • What therapy are patients using for JIA?
  • How effective is current therapy in controlling the common aspects of JIA?
  • 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 JIA?

  • 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 adalimumab, what are the expectations for the medication?

  • Is it expected that the lives of patients will be improved by adalimumab, and how?
  • Is there a particular gap or unmet patient need in current therapy that adalimumab will help alleviate?
  • Would patients be willing to experience serious adverse effects with adalimumab if they experienced other benefits from the medication?
  • How much improvement in the condition would be considered adequate? What other benefits might adalimumab have, for example, fewer hospital visits or less time off work?

5. What experiences have patients had to date with adalimumab as part of a clinical trial or through a manufacturer’s compassionate supply?

  • What positive and negative effects does adalimumab have on the condition?
  • Which symptoms does adalimumab manage better than the existing therapy and which ones does it manage less effectively?
  • Does adalimumab cause adverse effects?
  • Which adverse effects are acceptable and which ones are not?
  • Is adalimumab easier to use?
  • How is adalimumab expected to change a patient’s long-term health and well-being?

If you live with JIA or care for someone with the disease, please send us your input by Monday, February 18, 2013 so that we may submit a report by the February 22 deadline. Your input will be anonymous, unless you expressly state that you wish to have your name or that of the person in your care included in the submission.

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

Sincerely,

Arthritis Consumer Experts
www.jointhealth.org