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November 2024
Dear community...
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Martine Elias,
Chief Executive Officer
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"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."
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I - Myeloma Canada’s Scientific Roundtable: A unique and collaborative meeting of the most innovative minds in myeloma | |
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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”. | |
Myeloma Canada Scientific Roundtable, October 2024 | | |
X post by Dr Vincent Rajkumar | |
Participants:
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exchanged highlights of recent myeloma-related research and treatment developments,
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reviewed new myeloma treatments in the research pipeline,
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facilitated planning and collaboration for future Canadian myeloma research.
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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:
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Gold: Johnson & Johnson, Pfizer
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Silver: GSK, Sanofi
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Bronze: Amgen, Binding Site, Telo Genomics, GlaxoSmithKline, Rapid Novor
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Supporters & Friends: AbbVie, BMS, FORUS Therapeutics, Roche, Sebia Diagnostics
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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.
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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.
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I - Have your voice heard!
Myeloma patient and caregiver experience survey:
XVd - selinexor + bortezomib + dexamethasone
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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:
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at least two prior lines of therapy; or
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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.
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If you have any questions, please write to contact@myeloma.ca and indicate “Drug Survey” in the subject line.
Thank you in advance for your participation and helping your fellow Canadians impacted by myeloma! Your input is extremely important and helps further our goal of improving Canadians' access to new myeloma treatments.
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II - Promoting equity, diversity, and inclusion (EDI) in clinical trial accruals | |
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Yelak Biru (CEO, International Myeloma Foundation), Richard Plante (Medical Director, Hematology/Nephrology, Janssen Inc.), Eva Villalba (Executive Director, Quebec Cancer Coaltion), Alvina Nadeem (Patient Partner, Engineer, Coach and Change Management Advisor) | |
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.
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The goals of the meeting were to:
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take a bird’s eye approach to trial operations,
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identify 1-2 process shortcomings that can have a negative impact on trial participation, and
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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.
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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.
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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.
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Toronto Sebia user group meeting: Marie-Josée Dupuis (General Manager, Sebia), Bob McCaw (myeloma patient advocate), Chantel Wicks (Regional Manager of Community Engagement and Development, Myeloma Canada), Bonnie Cheung (Product Manager, Sebia), Alison Adam (Admin & Event Coordinator, Sebia), Aigars Brants (Director of Scientific Affairs, Sebia). | | |
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) | |
Gisèle Fournier’s presentation (in French) | | |
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.
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Increasing myeloma awareness among Quebec healthcare professionals | | |
...at the Corporation of Operating Room Nurses of Quebec's (CORNQ) convention | |
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Geneviève (Waldo) Aubry, Co-President of the CORNQ provincial conference, with Myeloma Canada’s Gabriele Colasurdo, Director, Science & Research, and Karine Gravel, Regional Manager, Education and Community Engagement | |
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.
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...at the Quebec Plasma Cell Dyscrasia Group conference | |
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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.
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What's new at Myeloma Canada | |
I - Giving Tuesday is coming!
This Giving Tuesday, your dollar counts as two for double impact and double hope.
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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.
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Starting today,
your gift to Myeloma Canada has double the IMPACT
for double the HOPE
for our myeloma community.
Donate today!
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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.
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II - Myeloma Canada’s 18th annual Support Group
Leaders’ Summit goes West!
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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!
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Myeloma Canada's Support Group Leaders' Summit, November 2024 | | |
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.
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III - A night to remember!
8th annual Sam’s Monte Carlo Casino Night – A tribute to Richard Oana
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We’re thrilled to announce that, once again, Casino Night exceeded all expectations and was a hit! | | |
8th Annual Sam's Monte Carlo Casino Night | |
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!
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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.
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Spotlight on Jérôme Goulet:
"Come on Jé, it’s time for war”
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"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..."
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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.
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Free virtual screening from Friday November 22 at 9am to Sunday November 24 at 11pm.
Register here.
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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.
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II - Presentations from Myeloma Canada’s Edmonton patient
and caregiver conference now available!
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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.
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"Amyloidosis 101"
Dr Irwindeep Sandhu
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"Understanding Patient
Support Programs"
Panel with BioAdvanced, Bioscript, and Cencora
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"Understanding Your Labs"
Nanette Cox-Kennett
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"Ace to motivate: Tailoring exercises for individuals with multiple myeloma"
Professor Margaret McNeely & Leslie Ternes
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"Cellular Therapy for the Treatment
of Multiple Myeloma"
Dr Michael Chu
| You can find these, along with hundreds of other videos and presentations for free viewing, on the Myeloma Canada YouTube channel. | | |
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.
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Honouring a legacy:
BETT Clothing's fundraising initiative for Myeloma Canada
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Hot news from
SavageHot!
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A gem of a fundraiser
honouring C. Tom Schlegel
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The Défi Everest Challenge
rose to new heights!
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Turn your passion into a fun fundraising event...
We're here to help!
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Please consult our website at myeloma.ca for up-to-date news and information,
as well as the following helpful links:
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Myeloma Canada's promise: To improve the lives and empower all Canadians affected by myeloma, accelerate access to the best care, while supporting the pursuit of its cure and prevention. | |
Follow us on social media for the most up-to-date information and resources: | |
Si vous préférez recevoir vos communications en français, écrivez-nous à contact@myelome.ca. | |
To donate to Myeloma Canada
please visit myeloma.ca or call us toll-free at 1-888-798-5771.
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