July 2024

At first, engaging in advocacy initiatives involving government bodies, officials, drug agencies, and various stakeholders invested in improving the healthcare system or treatment accessibility may appear abstract or a little daunting. Nevertheless, numerous organizations, such as ours, are inherently suited to negotiate, influence and persuade those who have the authority to enact changes.

In recent years, myeloma has been the focus of many research projects, coinciding with major shifts within our healthcare system. As such, Myeloma Canada regularly finds itself at the epicentre of crucial discussions poised to directly shape the future of our community and impact all Canadians affected by cancer. Our initiatives span a range of issues, aiming to improve prevention, early diagnosis, access to the best treatments, and to the best services available.

Martine Elias, Myeloma Canada's CEO, was a panelist at the CADTH Symposium: Shaping Future-Ready Health Systems

In 2023, to solidify our efforts, we reconvened the Myeloma Canada National Advocacy Committee (NAC), recruited new members, and established a new structure for the committee.

It is with great pride that we present to you our 2023 advocacy accomplishments below:

Surveys and feedback

I - Survey and patient input reports for new drug submissions  

Submitted to L’Institut d’excellence en santé et services sociaux du Québec (INESSS)  and Canada’s Drug Agency (CDA, used to be called CADTH).

Patient and caregiver input on drug reviews and feedback on recommendations is important to the reimbursement review process for new drugs. This vital input ensures the experiences of people living with cancer and undergoing treatment are considered as evidence in the drug review process.

Patient input means that organizations reviewing the drug (i.e. CDA and INESSS) can begin to appreciate the impact (both good and bad) the drug under review may have on those taking it, and those caring for them.

In 2023, Myeloma Canada and the NAC provided the following:

1. Feedback on CDA Draft Recommendation: Carvykti (ciltacabtagene autoleucel/cilta-cel), a new Health Canada-approved CAR T-cell therapy recommended for reimbursement by CDA.
2. Feedback on CDA Updated Treatment Algorithm: Updates made to accommodate the addition of Carvykti (ciltacabtagene autoleucel/cilta-cel).
3. Surveys and patient input reports (submitted to CDA and INESSS): 

• Tecvayli (teclistamab) 
• Elrexfio (elranatamab) 
• Rezurock (belumosudil) - in collaboration with The Leukemia & Lymphoma Society of Canada (LLSC)
• Selinexor - second survey and submission for reconsideration to INESSS only

II - Optimal pharmacotherapy for transplant-ineligible multiple myeloma (MM)

In the past years, several life-prolonging pharmacotherapies* for the treatment of newly diagnosed, relapsed, or refractory MM were recommended for reimbursement by CDA and INESSS and are now available to Canadians through their public drug plans. Most people with myeloma will first receive treatment with a stem cell transplant, followed by a sequence of these publicly funded pharmacotherapies.

However, for those who cannot receive a stem cell transplant, the optimal sequence of therapies is less clear, and public reimbursement more difficult to access. To help decision makers develop appropriate pharmaceutical funding policies for the transplant-ineligible population, CDA prepared a therapeutic review considering evidence for multiple MM drugs and combinations.

Myeloma Canada worked with NAC to provide feedback on the following reports:

• Draft Clinical report
• Draft Pharmacoeconomic report
• Final recommendations

*Pharmacotherapy simply means the use of pharmaceutical drugs as medications to treat health conditions. Cellular therapies (i.e. CAR T) were not considered in this review.

Consultations 

Each year, Myeloma Canada schedules meetings with government officials from various provinces to address the most urgent issues affecting patients and caregivers in those regions. 

In 2023, we organized Legislative Action Days in Ontario and Saskatchewan:

I - Ontario   

In October, Myeloma Canada held a Legislative Action Day at the Ontario Legislative Assembly in Toronto. Alongside a passionate group of patient and caregiver volunteers, Myeloma Canada hosted a parliamentary breakfast, attended the daily question period (where our group received special recognition), and led 9 meetings with the following government and parliament representatives: 

This important day was a personal request from the Ontario Ministry of Labour to contribute to their “Consultation on Future Policy Objectives”. With input from Ontario community members, we recommended policy objectives for the Ministry which support people impacted by myeloma.

Thank you to our passionate patients and caregiver volunteers who contributed to this advocacy campaign: Rinat Avitzur, Lisa Bowden, Glenn Hussey, Suzanne Jordan, the late Jocelyn Kervin, Robert McCaw, David McMullen, Anthony Mohamed, Munira Premji, Sandy Ramdass, Jules Royer, Frank Shepherd, Jessica Slack, Robin Sully, Patrick Taylor, Jan Wleugel, and Tanya Zigomanis.

Legislative Action Day, Ontario 2023

II - Saskatchewan  

In December, Myeloma Canada held remote Legislative Action meetings, in Saskatchewan. A total of 4 meetings were assisted by dedicated patient and caregiver volunteers from our myeloma community and Dr Julie Stakiw, from the University of Saskatchewan and Saskatchewan Cancer Agency in Saskatoon (SK).

Thank you to our dedicated community volunteers who contributed to the success of this advocacy campaign: the late Trevor Ives, Sharon McIntosh, Mona Neher,  Marie Prokopiw, and Ray Wilgenbusch.

I - Thanks to our strong network of collaborators, we are frequently asked to provide insights on various issues and share our experiences in advocacy and collaboration with government authorities. 

In 2023, we were invited to serve as panellists at the following events:  

• Congrès de l’Association québécoise des coordonnateurs d'accès aux médicaments d'oncologie (AQCAMO)
• Quebec Policy Masterclass hosted by Novo Nordisk Canada 

• Two panels at the CADTH Symposium: Shaping Future-Ready Health Systems

III - Directly highlighting patient and caregiver perspectives is a crucial part of our advocacy work. We continuously participate in many important projects, ensuring that the voices of those affected by myeloma are heard, and counted.

In 2023, some of the projects in which we collaborated were: 

Patient support program consultations (Janssen Canada):

• Reviewed and discussed the patient journey to gain a deeper understanding of patient and caregiver needs, the support they require, the patient support program concept and gaps it could address. Importantly, these consultations allow the patient voice to be incorporated throughout the ideation and development of future support programs.

Patient Empowerment Tool (Janssen Canada):

• Engaged and solicited feedback from the Patient Advisory Council (PAC) on Janssen Canada’s unbranded Patient Empowerment Tool that is being developed.
• Provided a draft prototype and staging link to the PAC for beta testing and review.
• Chaired and moderated the Patient Empowerment Tool Advisory Board to ensure value and patient centricity and debriefed Janssen afterwards. 

MentorMatch (Pfizer Canada):

• Engaged Pfizer Canada's partner organizations in an exchange and mentoring program to create a leadership collective for patient advocacy in Canada. 

Patient testimonials:

• Daratumumab patient experience shared with sales team at Janssen Canada (patient video).
• Town Hall at the Janssen Canada Head Office on the importance of innovative therapies.
• A myeloma patient's experience shared at a meeting with Pfizer Canada's oncology team in Toronto.

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