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Spotlight on...
Dr Arleigh McCurdy & Dr Hira Mian
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Hematologists, researchers, key contributors,
and Myeloma Canada Board Members
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Editor’s Note: In celebration of our 15th Anniversary, the Spotlight section of Myeloma Matters has changed slightly. This year, our Spotlight Stars have been asked to share their stories alongside their relationship and involvement with Myeloma Canada. We hope you enjoy meeting our 2020 Spotlight Stars and that the new format provides you with information you didn’t know before.
To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.
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This month’s Spotlight features Dr Arleigh McCurdy and Dr Hira Mian, both of whom have recently joined the Myeloma Canada Board of Directors. In addition to their thriving practices in Ontario as hematologists, assistant professors, researchers, and more, Drs McCurdy and Mian are dedicated supporters of Myeloma Canada and key contributors to our many educational publications, webinars and events. Moreover, both doctors are enthusiastic participants at our annual Multiple Myeloma March. To learn more, please see “Myeloma Canada welcomes Dr Arleigh McCurdy and Dr Hira Mian to our Board of Directors” in the “What’s New at Myeloma Canada” section.
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Editor’s note: MM is an abbreviation for multiple myeloma.
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Drs McCurdy and Mian, how and when did Myeloma Canada come into your life?
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Dr McCurdy: I trained in Halifax with Darrell White, who is a well-known myeloma physician and researcher in Canada, and then went to the USA for some additional training. On my return to Canada, I was contacted by [the late] Aldo Del Col [Co-founder of Myeloma Canada] about a gathering of myeloma researchers in 2014. I was excited to learn about Myeloma Canada and I somewhat nervously attended.
Dr Mian: I don’t recall the exact timing, or moment that it happened but it seems like I have known about it [Myeloma Canada] for as long as I have been involved in the care of patients with MM. Patients and caregivers use Myeloma Canada as a resource, for information, outreach, as a way to honour the memories of their loved ones via donations, and to really be part of a community.
For me, Myeloma Canada has always been about patients. It is a great resource that we as doctors can tell our patients about to get more information about MM and to gain support from other patients and their caregivers. Myeloma Canada provides a constant source of information and support for patients, caregivers and loved ones. The question often comes up from our patients, “how can I get more information, or how can I get involved and help others with MM”? I feel like Myeloma Canada works concurrently and as an extension of our clinic providing support for our patients.
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Why did you choose to get involved in helping people living with myeloma?
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Dr Mian: There probably isn’t one reason but a whole host of reasons. Myeloma is a unique cancer. Patients can be affected from head to toe with it, over long periods of time. Treating myeloma allows me to build long-term relationships with patients, get to know them, their families, how they are living with the disease. For instance, you know them from the time they get diagnosed with myeloma, when they have their first grandchild, to the time, potentially, when that grandchild goes off to university. You develop trust, and a therapeutic relationship, and you get to align their treatment goals with their life goals. And that can only happen with myeloma, because of that longitudinal relationship you get to develop with patients. It allows us as doctors to build great relationships with patients, where you become integrated in their lives.
On top of this, treating myeloma always keeps me on my toes. Things are constantly changing and we learn more and more about how the disease works and what newer treatments may exist. We as doctors have to constantly change the way we treat our patients and always look ahead to the future.
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Dr McCurdy: I was very interested in hematology from a very early stage at medical school. I thought the patients were resilient and kind, and the science interesting. I found it to be challenging, as no two patients are the same, and it was a combination of their health status and illness features as well as their personalities and values on how they may make treatment decisions.
It became obvious to me, and stimulating, to try to make a difference in the lives of these patients. I often say that it’s a privilege to work with people who are at a very challenging point in their lives; being able to make some positive change is very rewarding. I don’t pretend that my job is altruistic, as you get a lot back from working with this very motivated patient group.
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What has Myeloma Canada's impact been on the Canadian myeloma landscape?
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Dr Mian: Myeloma Canada has had a tremendous impact. We can see it when [patients] come to our clinic. When patients need more information they have a proven, trusted and reliable Canadian source. Similarly on our end, when a patient asks how does a stem cell transplant work, I can tell them to go to the Myeloma Canada website and all the information is there that I would want them to know.
Many patients feel isolated with the disease, so the Myeloma Canada local support groups are a game-changer for us. The patients get to feel as though they are part of a community. The caregivers can contact and discuss issues with other caregivers and even other patients.
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Dr Mian - from the article,
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Patients are coming together at different stages of the disease and that gives them good stories, maybe bad stories, but I feel, especially at multiple points throughout the journey, the information is very helpful and enlightening.
We also have family members and caregivers call into our clinic and they will say their mother or father has passed away, and what can I do? They want to still be actively a part of the community and help to fight the disease. Sometimes just telling them donations to Myeloma Canada can be set up with the funeral arrangements makes all the difference. Myeloma Canada is essential in our everyday clinical practice.
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Dr McCurdy: I have been engaged with Myeloma Canada for over 7 years. Since then, I’ve seen an increase in awareness of myeloma, not only with patients and their families, but within the medical community and the public in general. They [Myeloma Canada] focus on educational, fundraising and awareness campaigns and provide fantastic Canadian-specific, online information and also booklet print-based documents.
Myeloma Canada has been instrumental in advocating for access to new myeloma treatments as well as advances in new diagnostic testing. They are advocates to ensure that your postal code doesn’t matter, and have spearheaded national guidelines to ensure information gets out to everyone, and we all have access to treatment.
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Myeloma Canada has developed a massive nation-wide support group network where patients are able to interact locally and on a national level. I think a very important part of Myeloma Canada is how they keep patients involved. Patients are the priority. The Myeloma Priority Setting Partnership program has patients actually providing input into areas where they would like to see future myeloma research. The initiative makes sure that the people with the illness are actually driving the agenda.
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How would you say you contribute to advancing the cause of those affected by myeloma?
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Dr McCurdy at the 2019 Myeloma Canada
Scientific Roundtable
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Dr McCurdy: On an individual level my practice focuses on myeloma. I hope that my patients would consider me their advocate and I do my best to ensure that they’re cared for with dignity and comfort.
We focus on keeping patients with us to see their grandchildren grow up, and with a good quality of life. I am the lead of the myeloma program in Ottawa and responsible to ensure that our clinics are staffed with the best people and that we’re able to deliver advanced standards of care.
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Dr Mian: I am very involved in research studies, both locally and nationally. These studies help us understand why certain patients do better than other patients, and what things we need to do to bridge that gap. Improving quality of life, drug toxicity, better access to clinical trials and my clinical care are all in hopes of improving the care of patients with MM. Some of my research is done on disparities of outcomes, and gaps among gender, ethnic groups, different ages, and we work on strategies to ensure equitable care for all myeloma patients across Canada.
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Why do you feel Myeloma Canada is the best medium through which to advocate for those affected by myeloma?
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Dr Mian: Myeloma Canada is a grassroots organization. Patients essentially run this group; it’s for patients by patients and anytime you’re going to advocate for something, it’s best done by the patients themselves. This makes Myeloma Canada unique, with the patients driving the organization’s agenda, and that agenda coincides with what everyday clinic patients want.
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Dr McCurdy: In my mind, the role of Myeloma Canada is to be the “Voice of the Patients”. There is no better person to speak on myeloma care than the patients themselves. I think this needs to be done in collaboration with other scientific groups who can help Myeloma Canada, and the patients, with that piece of advocacy. Some of my biased examples are the Canadian Myeloma Research Group and the Canadian Clinical Trials Group who provide scientific background and the ability to perform clinical trials.
Myeloma Canada is hands-down the best patient driven organization for education and advocacy in Canada, and well positioned to collaborate with researchers to make major progress. I have recently joined the Board of Directors for Myeloma Canada and one reason was to advocate for and improve our collaborative opportunities with Canadian researchers.
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Can you tell us what inspires you today about the future of myeloma research?
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Dr McCurdy: Treatment options for myeloma have been revolutionized since I started working in the field in 2012. As a result, outcomes for patients have drastically been altered; not just how long patients live, but how well they live. I believe we are right on the doorstep of the next generation of treatments that will drastically alter the course of the illness.
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We are figuring out how to harness the power of the immune system so that treatments can benefit from and exploit the patient’s own immune system as a weapon against myeloma. Those treatments can be less toxic and less damaging to other healthy cells. I would imagine over the next decade we may be using exclusively immunotherapy and this will revolutionize treating the illness.
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Dr Mian, Dr McCurdy and colleagues at the
2019 Myeloma Canada Scientific Roundtable
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Dr Mian: Myeloma research is moving at an unprecedented pace. We are seeing tremendous progress and I am cautiously optimistic of the next 5-10 years about the possibilities, and maybe even a cure. I am so excited to be part of that journey, and to share that with my patients. As we go forward, it will be great to have all these things, but as clinicians, the challenge will be making sure the appropriate drugs and resources are going to the patients that best need them and that we provide the best myeloma care for all patients in Canada.That is going to be what truly great myeloma care is about.
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If you had one wish for patients and their loved ones, what would it be?
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Dr Mian: I would like to see patients being diagnosed earlier and before myeloma has caused any problems or impairment in quality of life. I would then like to be able to treat myeloma with drugs that are tolerable, and that would cure myeloma, so it becomes something of the past.
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Dr McCurdy: You don’t go into this business without thinking big. The ultimate goal, to make it a disease of the past, and have a single treatment cure.
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Is there anything else you’d like to add?
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Dr Mian: I hope patients continue to use the resources provided by Myeloma Canada and become involved in the community. Myeloma is a tough cancer and it will take all of our collaborative efforts as patients, caregivers, healthcare providers, researchers to fight this disease, but it can be done!
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Thank you both for your time and insights, and all you do alongside Myeloma Canada.
Thank you!
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