MONTREAL, July 4, 2017 /CNW/ - Multiple myeloma, commonly referred to as myeloma, is an incurable cancer of the plasma cells found in the bone marrow. Every day, seven Canadians are diagnosed with this increasingly prevalent but relatively unknown disease. Although there is no cure, myeloma is treatable and with a number of innovative therapies that have become available in recent years, patients are living longer and more productive lives. However, myeloma is characterized by cycles of disease control and relapse. In most cases, treatment will eventually lose its effect. Therefore, access to new treatments is vital for patients with limited options. Thousands of Canadians depend on it.
In 2016, Health Canada approved three new drugs for the treatment of myeloma: carfilzomib (Kyprolis®) on January 15th 2016; daratumumab (Darzalex®) on June 19th 2016 and ixazomib (NinlaroTM) on August 8th 2016. Although Health Canada approval is a necessary first step in accessing new treatment options, it is the pan-Canadian Oncology Drug Review (pCODR) that recommends whether a new drug should be funded by public drug plans. Alarmingly, none of these innovative Health Canada-approved treatments are being funded by any of the provincial public drug plans. In the last 12 months, pCODR has issued negative reimbursement (funding) for both daratumumab (Darzalex®) and ixazomib (Ninlaro®). Despite having received a positive pCODR recommendation on June 21st 2016, carfilzomib (Kyprolis) is still awaiting negotiation decisions with the pan-Canadian Pharmaceutical Alliance (pCPA), the body that negotiates drug prices with the pharmaceutical companies before they are funded by provincial drug plans.
"Medication approval does nothing for patients if they cannot access life-changing treatment," said Aldo Del Col, Co-Founder and Chairman, Myeloma Canada. "Canadians living with multiple myeloma deserve access to approved treatment options now. Patients can't wait. We will continue to advocate, engage, support research and raise our voices for Canadians living with multiple myeloma to ensure fair and enhanced access to approved treatments in our near-future."
In 2016, Myeloma Canada produced two patient submissions to pCODR for daratumumab, in combination with dexamethasone, and one for ixazomib plus lenalidomide (Revlimid®) and dexamethasone. Despite Priority Reviews from Health Canada, supportive clinical data and patient feedback from Myeloma Canada showing support and need for these approved therapies, pCODR has issued negative reviews for daratumumab and ixazomib, thereby severely limiting patient access.
Myeloma Canada's role is to ensure the patient voice is heard. To do so, Myeloma Canada conducts frequent surveys amongst patients and caregivers in Canada to evaluate disease impact on quality of life, patient needs, treatment expectations and impact of new therapies. Our patient and caregiver survey results were submitted to pCODR as a vital component to their review process to document and define the needs for patients. Myeloma Canada will continue dialogue with pCODR for medication access and will continue submitting feedback as part of their process.
If you are a patient or caregiver and wish to participate in Myeloma Canada surveys for the purpose of providing feedback to pCODR or taking action in our community, click here to join our mailing list.
About Multiple Myeloma
Multiple myeloma, commonly referred to as myeloma, is a cancer of the plasma cells found in the bone marrow. A plasma cell is a type of immune cell that produces antibodies to fight infection. Its cause remains unknown. Every day, 7 Canadians are diagnosed with myeloma, with an average age of diagnosis in the mid-sixties. Despite a growing prevalence, it remains relatively unknown. With the aging population and new and better treatments, the number of patients living with the disease will continue to increase.
Although there is yet no cure, myeloma is treatable, with many patients going on to lead full lives for years after diagnosis. With increasing research and emerging treatments, the overall outlook for patients is improving steadily.
About Myeloma Canada
Myeloma Canada is a non-profit, charitable organization created by, and for people living with multiple myeloma, a relatively unknown cancer of the plasma cells. Exclusively devoted to the Canadian myeloma community, they have been making myeloma matter since 2005. As a patient-driven, patient-focused grassroots organization, Myeloma Canada is dedicated to accelerating access to game-changing therapies for Canadians living with myeloma. Myeloma Canada drives collaborative efforts to unify the voice of the community to effectively shape the Canadian treatment landscape by improving patient outcomes at an unprecedented pace. Empowerment of patients and caregivers through educational programs advances the understanding, treatment and management of the disease; moreover, early awareness programs promote timely diagnosis. The Myeloma Canada Research Network (MCRN) is the first and only platform that fuses national scientific research and advocacy. The MCRN develops and supports Canadian-designed clinical trials nationwide, and collects data for its innovative national database, a key stepping stone in our search for a cure. Myeloma Canada ensures the patient voice is heard by actively engaging the community to take action at all levels, from clinical trial design to patient care. For more information about how Myeloma Canada is putting myeloma on the map please visit www.myeloma.ca
SOURCE Myeloma Canada
For further information: or to schedule an interview, please contact: Michelle Oana, Associate Director of Development and Communications, Myeloma Canada, [email protected]; Chriselle D'Souza, Argyle Public Relationships, 416-968-7311 ext. 246, [email protected]