Call for patient input on tocilizumab (Actemra®) for giant cell arteritis
Do you have giant cell arteritis? 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 tocilizumab (Actemra®) for the treatment of giant cell arteritis.
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:
- What are the disease-related symptoms and problems that impact the patients' day-to-day life and quality of life? For example, what aspects of their disease are more important to control, how does the disease affect day-to-day life, and are there any activities that the patient is not able to do as a result of the disease?
- How well are patients managing their disease with currently available treatments? Examples of the types of information to be included in the answer are:
- What therapy are patients using for the treatment of their disease?
- How effective are current treatments in controlling the common aspects of the disease?
- Are there needs, experienced by some or many patients, which are not being met by the current treatments? What are these needs?
- Do current treatments have adverse effects that are more difficult to tolerate than others? What are they?
- Do patients have difficulty accessing current treatments because of costs, such as costs related to travel and drug administration costs?
- When offered, how do the patient assistance or support programs impact on the accessibility and effectiveness of the treatment?
- How does the disease affect caregivers?
- What challenges do family and friends who support a patient to manage the disease face?
- What impact does the treatment have on the caregiver’s daily life, such as emotional/psychological effects, fatigue, stress, and physical challenges?
- What are patients’ expectations for tocilizumab?
- What are the perceived advantages or disadvantages?
- What are the aspects of the patients’ disease that it is hoped will be addressed?
- How might daily life and quality of life for patients, caregivers, and families be different if the new treatment provided desired improvements?
- What trade-offs do patients, families and caregivers consider when choosing a therapy?
- Has the patient tried tocilizumab for their disease?
- What were the benefits or disadvantages of tocilizumab?
- How did the benefits or disadvantages impact the lives of patients, caregivers, and families?
- Did the patient experience any side effects and were they tolerated? How were the side effects managed?
- Was the drug easier to use than previous therapies? How so?
If you live with giant cell arteritis or care for someone with giant cell arteritis, please send us your input by Monday, October 16, 2017, so that we may make a submission by the October 17 deadline. Your input will be anonymous.
Please contact us at firstname.lastname@example.org to provide your input or arrange for a phone interview at 604-974-1366.