Patient Input for Drug Approval Application (pCODR) - Ruxolitinib (Jakavi)

Introduction

If you have had a stem cell transplant, you can help make a drug to treat GvHD available to patients in Canada.

We invite all patients world-wide who have received an allogeneic stem cell transplant to share their experience regarding graft-versus-host disease (GvHD). GvHD is a potentially serious complication of allogeneic stem cell transplantation – where the stem cells come from another person (versus an autologous stem cell transplantation where the stem cells come from your own body).

Over the next few months, ruxolitinib (Jakavi), a janus kinase (JAK) inhibitor, will be the subject of an evaluation as part of the CADTH Common Drug Review (CDR) and INESSS for funding consideration as a new treatment for patients with graft-versus-host disease (GvHD) aged 12 years and older who have inadequate response to corticosteroids or other systemic therapies. We will share patients’ input with the review committee to ensure our community’s voice is being heard and our needs considered.

The Canadian Agency for Drugs and Technologies in Health (CADTH) is an independent agency that makes funding recommendations to provinces on drugs approved for use in Canada. Institut national d'excellence en santé et services sociaux (INESSS) is also an independent agency that makes funding recommendations, but for the province of Quebec only. As always, patients’ input is particularly important, and while we cannot make promises, it could contribute to increasing availability and access to the therapy for Canadian patients experiencing GvHD.

This survey should only take approximately 25 minutes of your time. We ask that the survey be completed by June 1, 2021.

If you have any questions about the survey, please email indrek.koppel@lls.org and indicate ‘Patient Survey’ in the subject line.

Privacy policy: All survey data is being collected by an alliance of the following national, not for profit, charitable, patient-led organizations: Aplastic Anemia & Myelodysplasia Association of Canada, Canadian CML Network, Canadian MPN Network, Canadian MPN Research Foundation, Cell Therapy Transplant Canada, CLL Canada, The Leukemia & Lymphoma Society of Canada, Lymphoma Canada and Myeloma Canada. To ensure patient and caregiver privacy and confidentiality, individual responses will not be identifiable. It is important to note that selected quotations may be used in the final report to pCODR without reference to patient or caregiver name or any other identifying information.

Thank you in advance for your participation and for helping Canadians impacted by GvHD!