"Dear all, 

Since 2006, I’ve had the privilege of being a leader in patient advocacy, gaining visibility and credibility through years of dedicated experience.

This role has led to numerous requests from private health policy organizations, consultants, and pharmaceutical companies to contribute to developing white papers, articles, position papers, and guidelines to represent the patient voice."

I - Myeloma Canada’s Scientific Roundtable: A unique and collaborative meeting of the most innovative minds in myeloma

On Oct 25 – 26, the 15th annual Myeloma Canada Scientific Roundtable convened myeloma clinicians and researchers from treatment and research centres across Canada, internationally renowned researchers from the United States and Europe, nurses, industry partners, and patient representatives to discuss this year’s theme, “How to best sequence novel immunotherapies for multiple myeloma”.

Participants:

• exchanged highlights of recent myeloma-related research and treatment developments, 
• reviewed new myeloma treatments in the research pipeline, 
• facilitated planning and collaboration for future Canadian myeloma research. 

Thank you to our co-Chairs Dr Annette Hay, Dr Hira Mian, Dr Paola Neri, and Dr Vincent Rajkumar, our esteemed presenters, and our generous sponsors:

• Gold: Johnson & Johnson, Pfizer 
• Silver: GSK, Sanofi 
• Bronze: Amgen, Binding Site, Telo Genomics, GlaxoSmithKline, Rapid Novor 
• Supporters & Friends: AbbVie, BMS, FORUS Therapeutics, Roche, Sebia Diagnostics 

II - Talquetamab not recommended for reimbursement

On October 31st the pan-Canadian Oncology Drug Review Expert Review Committee (pERC) of Canada’s Drug Agency (CDA-AMC) decided not to recommend TALVEY (talquetamab) for reimbursement. 

The pERC’s draft decision states that due to the limited data available for their review and the nature of its side effects, public drug plans should not fund talquetamab for adults with relapsed/refractory myeloma.

Myeloma Canada will provide feedback to pERC on the draft decision and remain engaged in advocating for improved access to new myeloma treatments such as talquetamab across Canada. 

This decision applies to all provinces and territories except Quebec. The Institut national d'excellence en santé et en services sociaux (INESSS) which makes recommendations in Quebec has not yet issued a decision on talquetamab.  

Learn more.

III - Government of Canada establishes a committee of experts

to make recommendations on national pharmacare 

The Honourable Mark Holland, Minister of Health, announced the establishment of the Committee of Experts which will recommend options on how to operate and finance a national, universal, single-payer pharmacare program in Canada. 

Learn more.

I - Have your voice heard!

Myeloma patient and caregiver experience survey: 

XVd - selinexor + bortezomib + dexamethasone

Selinexor (XPOVIO) in combination with bortezomib and dexamethasone (XVd) will soon be reconsidered for reimbursement in Quebec by the Institut national d’excellence en santé et en services sociaux (INESSS), for patients with relapsed/refractory myeloma who have received: 



• at least two prior lines of therapy; or  
• at least one prior line of therapy, are refractory to lenalidomide, daratumumab, and for whom carfilzomib is not a treatment option.  

You do not have to be living in Quebec to take this survey. It is open to all individuals with myeloma and/or their caregivers and should only take about 10 minutes of your time. 

Deadline: December 9, 2024, 11:59 PM EST. 

II - Promoting equity, diversity, and inclusion (EDI) in clinical trial accruals

In April 2024, Myeloma Canada organized the Health eMatters IMPACT conference, based on discussions from the previous edition of Health eMatters.

Representatives from all groups involved in clinical trial procedures – pharmaceutical sponsors, clinical research organizations (CROs), researchers, clinical research nurses, hospital administrators, and advocacy groups anchored by patients – gathered for 2 days to workshop through ideas and solutions on promoting equity, diversity, and inclusion (EDI) in clinical trial accruals, without zeroing in on one specific community, situation, or disease type.

The goals of the meeting were to: 

1. take a bird’s eye approach to trial operations,
2. identify 1-2 process shortcomings that can have a negative impact on trial participation, and
3. workshop change management strategies through a design-thinking approach.  

Thank you to Alvina Nadeem for leading with empathy the Human-Centred Design (HCD) brainstorming workshop; our sponsors J&J Innovative Medicines, AbbVie, Pfizer, and

Bristol Myers Squibb; our esteemed speakers; the Health eMatters’ IMPACT steering committee: Yelak Biru, Alvina Nadeem, Judy Needham, and Dawn Richards; Martine Elias, Myeloma Canada’s Chief Executive Officer; and Michelle Oana, Myeloma Canada’s Director of Development and Community Relations, and founder of Health eMatters. 

Findings from the meeting are intended to serve as a blueprint for a model project to integrate EDI in all institutions performing clinical trials and for sponsors/researchers designing trials. 

Read the report here.

III - Putting a face to myeloma at Sebia user group meetings

Myeloma Canada and myeloma patient advocates participated at recent Sebia user group meetings in Toronto and Montreal, sharing their stories and experience in advocacy, awareness, education, and more.

A key objective of the meetings was to enable laboratorians, who often work behind the scenes, to interact directly

with the patients whose lives they impact. This helps ‘bridge the gap’ between clinicians, patients, biochemists, and laboratory technologists.

Chantel Wicks, Regional Manager of Community Engagement and Development, and patient advocate Bob McCaw addressed the Toronto group on October 1, 2024, while Michelle Oana, Director of Development and Community Relations, and patient advocate Gisèle Fournier participated in the Montreal session on October 2, 2024. 

A big thank you to Gisèle and Bob for representing the myeloma community and graciously sharing their realities with captivated audiences. Watch their presentations below. 

Bob McCaw’s presentation (in English)

IV - Cancer Action Now Alliance (CANA) releases survey results on diagnostic and treatment wait times in Quebec

Cancer Action Now (CANA), of which Myeloma Canada is a member, surveyed close to 300 Quebecers living with cancer and highlighted the long wait times respondents experienced. The study, supported by Coalition Priorité Cancer au Québec and conducted by Léger, found that more than half of Quebecers living with cancer wait 3-5 months on average for their first treatment.

The survey also revealed that despite the wait, the vast majority of respondents were satisfied with the healthcare system when it comes to managing their cancer, from initial consultation before diagnosis through to follow-up and treatment. 

Learn more.

Increasing myeloma awareness among Quebec healthcare professionals 

...at the Corporation of Operating Room Nurses of Quebec's (CORNQ) convention

The 39th provincial convention of the CORNQ (Corporation of Operating Room Nurses of Quebec) took place October 10 - 12 in

Trois-Rivières, QC. 

Myeloma Canada was pleased to participate at the conference and have the opportunity to present healthcare professionals with information on myeloma, as well as promote our accredited Continuing Medical Education (CME) program for primary care providers. 

This year, conference organizers chose Myeloma Canada as their charity of choice and generously donated $1,000 to our cause. 

...at the Quebec Plasma Cell Dyscrasia Group conference

Gabriele Colasurdo, Myeloma Canada's Director, Science & Research, and Karine Gravel Myeloma Canada's Regional Manager, Education and Community Engagement, continued raising awareness among Quebec healthcare professionals with an information table at the Groupe des maladies plasmocytaires du Québec (GMPQ)'s [Quebec Plasma Cell Dyscrasia Group] annual conference on November 1st at the Centre Hospitalier de l'Université de Montréal (CHUM), in Montreal (QC). 

The event brought Quebec myeloma specialists together to share knowledge on the latest advances in the field and discuss issues common to research and cancer centres in different regions of Quebec. 

The CORNQ and GMPQ conferences provided Myeloma Canada with excellent opportunities to talk with healthcare professionals about the many facets of myeloma

and increase awareness of the disease. 

I - Giving Tuesday is coming!

This Giving Tuesday, your dollar counts as two for double impact and double hope. 

Turn $350,000 into $700,000 for Giving Tuesday 

December 3rd is Giving Tuesday, the annual global movement that promotes philanthropy and giving back. This important day of giving, which falls in between Black Friday and Cyber Monday, is dedicated to honouring and supporting charities and non-profit organizations, the communities we serve and the work we do.

Starting today,

your gift to Myeloma Canada has double the IMPACT

for double the HOPE

 for our myeloma community.  

Donate today!

Meet Jérôme 

Jérôme Goulet was diagnosed with myeloma in 2020 at the age of 44. In 2021, his wife Annie, their family and friends rallied together to create l’Armée de Jé to support Jérôme’s mission to raise funds for myeloma research and Myeloma Canada so that one day, the words ‘myeloma’ and ‘incurable’ will no longer be spoken together.  

To date, they have raised over $350,000 for Myeloma Canada and are challenging our community to double their impact by turning this $350,000 into $700,000, for the more than 4,100 Canadians like Jérôme who are diagnosed with myeloma every year. 

Please join Jérôme’s challenge.

Your donation could change the future of thousands. 

Learn more about Jérôme, his journey, and what motivated him to launch this unique matching challenge in the Spotlight section of this newsletter.

II - Myeloma Canada’s 18th annual Support Group

Leaders’ Summit goes West! 

Myeloma Canada was thrilled to host our 18th annual Support Group Leaders’ Summit in Calgary this past November 8 – 9th. This year’s summit brought together 74 leaders, representing 44 support groups from across Canada, in-person and virtually. 

Once again, this inspiring event was

jam-packed with engaging and informative presentations on topics ranging from

“I’m experiencing relapse, what’s next?”

to “How research funding works.”

Support group leaders from across the

country had the chance to reconnect, share experiences and new ideas while celebrating the strength and compassion that defines

their communities. Meaningful conversations were sparked meaningful, fostering a sense of hope and renewed energy. 

The atmosphere was truly uplifting!  

Thank you to our wonderful presenters, and to our amazing volunteer support group leaders. Thank you for the vital role you play in empowering and supporting individuals and families affected by myeloma. Your dedication is the heart of our community, and we are deeply grateful for all that you do.

To find a support group near you, click here. 

III - A night to remember!

8th annual Sam’s Monte Carlo Casino Night – A tribute to Richard Oana

We’re thrilled to announce that, once again, Casino Night exceeded all expectations and was a hit! 

On behalf of the Oana family and the entire Myeloma Canada team, we extend our heartfelt gratitude to everyone for supporting another fun and successful event.  

Your unwavering generosity led to a remarkable fundraising achievement, with

a grand total of $40,000 raised for Myeloma Canada.

This brings Casino Night’s cumulative contributions since 2016 to a staggering $300,000! 

IV - A peek at the PAC!

Read the fourth edition of A peek at the PAC for news from your Patient Advisory Council (PAC).

This month, we'll hear from Manon Veilleux, the representative from Quebec.

"It started in the summer of 2019, nearly five years ago, after having spent a night on a wooden plank in the emergency room for a broken rib.

On January 11, 2020, after months of medical consultations and tests, two doctors, courteous but not exactly “white glove service”, told my wife Annie and I that I had cancer.

It was the first time I'd heard the term ‘myeloma’. I was 44 years old..."

I - Living Drugs 

The brave story of Dr Michel Sadelain and his treatment that genetically alters a patient’s own immune cells to fight cancer.  

Free virtual screening from Friday November 22 at 9am to Sunday November 24 at 11pm. 

Register here.

The new documentary, Living Drugs brought to you by BioCanRx, tells the story of the seminal breakthroughs in T cell engineering brought about by Dr. Michel Sadelain. 

Through interviews with the researchers and clinicians involved in the birth of CAR-T therapy, woven with stories from patients

from Canada, the US, and around the world, the film tells a moving story of perseverance and determination.  

II - Presentations from Myeloma Canada’s Edmonton patient

and caregiver conference now available!

Myeloma Canada’s patient and caregiver conference in Edmonton (Sept 7-9, 2024) brought people impacted by myeloma together to learn invaluable information about myeloma care and living with the disease.

Check out the informative and helpful presentations from the conference.

"Amyloidosis 101"

Dr Irwindeep Sandhu 

"Ace to motivate: Tailoring exercises for individuals with multiple myeloma"

Professor Margaret McNeely & Leslie Ternes

This year we’re seeing some great community-led fundraising initiatives come together and that’s exciting! 

Learn more about a few fundraisers that are under way or have already taken place.