Issuu

A Heal Canada Signature Program

ISSN 2819-2486

September 2026 | Issue 9

My Blood My Health

"Bridging Health with Knowledge and Advocacy"

Blood Cancer Awareness Month

My Blood My Health A Heal Canada Signature Program September 2026 | Issue 9

03 Founder's Note 04 Blood Cancer Awareness Month 09 Living Better with Blood Cancers, Beyond Survival 3 1 Emerging Treatments 39 Iron Deficiency Anemia 46 Lifestyle, Wellness & Supportive Care 56 Mental Health & Psychosocial impact 63 Caregiver Corner 69 Research, Innovation & Data 78 Health Policy 87 Advocacy & Empowerment 96 Practical Tools 108 Clinical Trials 1 1 9 Hematology Advocacy Groups

Publisher Heal Canada www.healcanada.org Email: admin@healcanada.org Executive Publisher & Editor in Chief Cheryl Petruk Editorial Team Heal Canada Staff/Consultants Scientific Advisors MBMH Scientific Consultants Marketing & Outreach Heal Canada Published By Heal Canada – A national not-for-profit organization dedicated to advancing patient advocacy through education, empowerment, and engagement. Publication Frequency Quarterly | Digital Only Copyright © 2025 My Blood My Health Digital Magazine. All rights reserved. No part of this publication may be copied, reproduced, or transmitted in any form without prior written consent of the publisher.

Visit https://mybloodmyhealth.ca or www.healcanada.org to download the current issue

Disclaimer: The Patient Advocacy Digital Magazine provides general information and resources to promote patient empowerment and awareness. The content is not a substitute for professional medical advice or treatment. Always consult with qualified healthcare professionals for personalized guidance regarding your specific medical condition or situation.

Founder's Note Welcome to this issue of My Blood My Health! We are honoured to welcome you to this special edition of My Blood My Health, dedicated to Blood Cancer Awareness Month. This issue is more than just a publication—it’s a platform to inform, inspire, and empower everyone impacted by blood cancers. Each article has been carefully crafted to provide practical resources, share the latest research insights and treatment updates, and feature the perspectives of patients, caregivers, and healthcare professionals. From strategies to improve quality of life to updates on innovative therapies, our goal is to make complex information accessible and meaningful, helping you make informed choices on your journey. At Heal Canada, we believe that awareness leads to action. By sharing stories of resilience, raising critical questions, and amplifying the patient voice, we are building a community where knowledge is power and advocacy drives change.

As you read through this issue, I invite you to reflect, share, and connect with others in our growing global network. Together, we can shine a brighter light on blood cancers and continue the vital work of education, support, and advocacy. Heal Canada's mission is to empower patients to access better and more equitable services. We're deeply grateful to our readers for their continued interest and support. Your engagement drives us to produce insightful and valuable content that encourages patient-centricity in healthcare. Thank you for participating in our journey, and welcome to this enlightening issue! With great humility for reading our digital magazine, Cheryl Petruk

Founder, Heal Canada & My blood, My health

Blood Cancer Awareness Month

Why Blood Cancer Awareness Month Matters More Than You Think

Every September, something quietly important happens across hospitals, clinics, and kitchen tables around the world. It's Blood Cancer Awareness Month, and if you've never heard of it, you're not alone. Unlike some of the more visible cancer campaigns, blood cancer doesn't come with a single iconic ribbon or a widely recognized symbol. It covers a sprawling, often confusing category of diseases — leukemia, lymphoma, myeloma, and the lesser-known myeloproliferative neoplasms — that together affect hundreds of thousands of people every year. And yet, ask most people on the street what a blood cancer actually is, and you'll likely get a shrug. That gap between how common these diseases are and how little the public understands them is exactly why this month exists. A Cancer You Can't See Coming Here's what makes blood cancers different from many other cancers: there's no lump to feel, no mammogram to schedule, no colonoscopy to catch it early. Blood cancers start in the bone marrow or lymphatic system, and their symptoms are notoriously easy to dismiss. Fatigue. Night sweats. Unexplained bruising. A nagging ache in the bones. Frequent infections that just won't quit. On their own, each of these could mean almost anything — stress, aging, a rough flu season. Put them together, though, and they can be the first quiet signals of something far more serious. This is part of why so many blood cancers are diagnosed later than they should be. People chalk up their exhaustion to a demanding job or a bad night's sleep. They wait it out. They take an extra vitamin. Months, sometimes years, pass before anyone thinks to ask for a simple blood test. And by then, the disease has often had time to progress. I've spent years working alongside patients living with myeloproliferative neoplasms, a group of rare blood cancers that tend to develop slowly and sneak up on people. What strikes me every single time is how many patients tell the same story: they felt "off" for a long time before anyone connected the dots. Some were told they were just stressed. Others were treated for anemia or anxiety for months before a hematologist finally looked closer. It's not that their doctors weren't paying attention — it's that blood cancer symptoms are genuinely hard to distinguish from ordinary life.

Why Blood Cancer Awareness Month Matters More Than You Think cont’d That's the real challenge Blood Cancer Awareness Month is trying to solve. Not just raising money for research, though that matters enormously. It's about closing the gap between "something feels wrong" and "let's actually check." The Case for Taking Blood Health Seriously We tend to think of blood as background infrastructure — something that just does its job without us needing to think about it. But blood carries oxygen to every organ, fights off infection, and clots to stop bleeding. When something goes wrong at the marrow level, where blood cells are actually made, the ripple effects touch nearly every system in the body. That is why routine bloodwork is far more valuable than most people give it credit for. A complete blood count, or CBC, is one of the cheapest, fastest, least invasive tests in modern medicine, and it can reveal abnormalities in white cells, red cells, and platelets long before a person feels seriously ill. Yet many adults go years without one unless a doctor orders it for another reason. Part of the problem is cultural. We've built a healthcare mindset around treating problems once they're symptomatic, rather than catching irregularities early. Annual physicals get skipped. Bloodwork gets deferred. "I feel fine" becomes the standard for whether something needs attention, even though blood cancers are exactly the kind of disease that can exist quietly for a long time before "feeling fine" stops being true.

Why Blood Cancer Awareness Month Matters More Than You Think Advocates in this space have been pushing for a shift in that thinking — encouraging people to view a CBC the same way they view a dental cleaning or an eye exam: not something you do because you're worried, but something you do as basic maintenance. Why Early Diagnosis Changes Everything The data is clear. Across nearly every blood cancer type, outcomes improve substantially when doctors catch the disease earlier. Treatment options are broader, side effects are more manageable, and in several subtypes, five-year survival rates shift meaningfully depending on the stage at diagnosis. But the benefit of early diagnosis isn't only medical — it's also deeply personal. Patients who are diagnosed earlier often describe having more agency in their care. They have time to ask questions, seek second opinions, understand their treatment pathway, and make informed decisions rather than reactive ones. Compare that to a late-stage diagnosis, where treatment often needs to start immediately and patients are left scrambling to catch up on information they wish they'd had months earlier.

There's also an emotional dimension that rarely gets discussed. Patients who go through prolonged, unexplained symptoms before diagnosis frequently describe a strange mix of relief and anger once they finally get an answer — relief that there's finally a name for what they've been experiencing, and frustration that it took so long to get there. Reducing that gap isn't just a clinical goal. It's a qualityof-life goal. What You Can Actually Do This Month Awareness months can sometimes feel abstract — a hashtag, a colored logo, a donation link that scrolls past on social media. But genuine engagement with this cause can lead to concrete actions. Talk to your doctor about your bloodwork. If it's been a few years since your last CBC, ask for one. It's a small ask that can carry outsized value. 7

Why Blood Cancer Awareness Month Matters More Than You Think cont’d Learn the symptoms that are easy to dismiss. Persistent fatigue that doesn't improve with rest, unexplained weight loss, frequent infections, easy bruising, and bone pain are worth mentioning to a physician rather than waiting out. Support patient advocacy organizations. Groups that fund research, provide patient navigation, and push for better screening protocols rely heavily on public support and visibility, particularly during months like this one when attention is already turned their way. Share real stories, not just statistics. Numbers matter, but people remember stories. If you know someone affected by a blood cancer, amplifying their experience does more to change behavior than any infographic.

A Quiet Disease Deserves a Loud Response Blood cancers don't announce themselves the way other illnesses do. There's no obvious warning sign, no single screening test everyone gets by default, no universally recognized symptom checklist. That subtlety is precisely what makes awareness so essential. The more people understand what to watch for — and the more normal it becomes to simply ask for a blood test rather than waiting for something to feel undeniably wrong — the more lives get caught in time. This September, the ask is simple: pay a little more attention to your blood health, encourage the people around you to do the same, and don't underestimate how much difference a five-minute blood draw can make. Sometimes the quietest diseases require the loudest advocacy.

“Living Better with Blood Cancers – Beyond Survival”

Living Better with Blood Cancers & Disorders – Beyond Survival When one is diagnosed with a blood cancer, the focus has usually been on survival. For a long time, medical conversations and patients' hopes have centred on clinical milestones, remission rates, and how long people can live without the disease worsening. But things are changing. Now, more people are talking about how patients live, not just how long. “Living better” is becoming a key goal, which means focusing on quality of life, being able to function well, staying mentally strong, and taking part in meaningful activities. This is not just a vague idea. It can be measured, is supported by evidence, and is becoming increasingly important in healthcare policy. Redefining Success in Hematology New treatments like targeted therapies, immunotherapies, and precision medicine have turned many blood cancers into long-term, manageable illnesses. People are living longer, but living longer without a good quality of life is not enough. Organizations like the International Consortium for Health Outcomes Measurement and the Canadian Agency for Drugs and Technologies in Health are now paying more attention to what patients say about their own health and quality of life. This shift points to an important truth: Surviving is a medical outcome. Living well is a personal one.

This change highlights an important truth: Surviving is a medical result. Living well is a personal one

Living Better with Blood Cancers & Disorders – Beyond Survival cont’d Living Better with Blood Cancers: Beyond Survival For a long time, the conversation around blood cancers began and ended with one question: will the treatment work? Survival was the finish line, and everything else— how a person actually felt, how their marriage held up, whether they could still make it to their kid's soccer games—was treated as a footnote. Something to worry about later, if there was a later. But ask anyone who's actually living with a myeloproliferative neoplasm, lymphoma, leukemia, or multiple myeloma, and you'll hear a different story. Surviving and living well are not the same thing. A person can be in complete remission and still be exhausted, isolated, financially strained, and quietly falling apart inside. The blood counts can look perfect on paper while the person behind them is barely holding on. It's time we widened the lens.

The Body Doesn't Just "Get Better" Because the Cancer Is Under Control Physical wellbeing in blood cancer is rarely a straight line back to normal. Fatigue is probably the most under-discussed symptom in oncology—not the kind of tired that a good night's sleep fixes, but a bone-deep depletion that can linger for years after treatment ends. Add to that the joint pain, the neuropathy, the bruising, the constant awareness of infection risk, and the parade of side effects from long-term maintenance therapies, and you start to understand why so many patients describe their "recovery" as its own full-time job. Quality of life work in this space means taking those symptoms seriously as symptoms, not as something to grit your teeth through because the alternative is worse. It means oncology teams asking about sleep, appetite, sexual health, and mobility with the same rigor they apply to lab values. It means physical therapy, nutrition support, and symptom management being built into a treatment plan from day one, not bolted on as an afterthought once someone finally speaks up. A patient who can garden again, or pick up their grandchild, or simply get through a workday without needing to lie down—that's not a bonus outcome. That's the outcome that actually matters to the person living it.

Empowerment shifts the patient's role from passive recipient to active partner. Empowerment shifts the patient role from passive recipient to active partner, and nowhere is this more evident than in the integration of real-world evidence and the patient voice. Traditional clinical trials, for all their rigour, do not fully capture lived experience. This is where real-world evidence, patient preference studies, and quality-of-life surveys become indispensable. These patient-reported outcomes fill the gaps that controlled trial settings leave behind, and patient advocacy organizations such as HEAL Canada are uniquely positioned to capture authentic patient insights, translate lived experience into actionable data, and inform regulatory, HTA, and clinical decision-making. The integration of the patient voice is no longer aspirational—it is expected. Integrating Real-World Evidence and Patient Voice Traditional clinical trials do not fully capture lived experience. This is where: Real-world evidence (RWE) Patient preference studies Quality of life surveys These patient-reported outcomes become indispensable, and Patient advocacy organizations—such as Heal Canada—are uniquely positioned to: Capture authentic patient insights Translate lived experience into actionable data Inform regulatory, HTA, and clinical decision-making

Integrating patient voice is no longer aspirational—it is expected.

Empowerment shifts the patient's role cont’d The movement toward value-based healthcare reinforces the importance of outcomes that matter to patients. In this model, success is defined by patient-centred outcomes per dollar spent, quality of life becomes a key performance indicator, and interventions are evaluated not only for their efficacy but for their real-world impact. For blood cancers and disorders, this means incorporating patient-reported outcomes into routine care, designing therapies with tolerability and lifestyle impact in mind, and aligning healthcare systems around long-term patient wellbeing rather than short-term clinical markers alone. The Role of Value-Based Healthcare The movement toward Value-Based Healthcare reinforces the importance of outcomes that matter to patients. In this model: Success is defined by patient-centred outcomes per dollar spent Quality of life is a key performance indicator Interventions are evaluated not only for efficacy but for real-world impact For blood cancers and disorders, this means: Incorporating PROs into routine care Designing therapies with tolerability and lifestyle impact in mind Aligning healthcare systems around long-term patient wellbeing

Empowerment shifts the patient's role cont’d Beyond the clinic, patients frequently navigate disruption to employment or career trajectories, financial toxicity, and strained social and family dynamics. Keeping up with roles at work, at home, and in the community is a large part of what makes life feel meaningful, and illness can quietly erode all three at once. To live better, people need flexible workplace policies, support in navigating disability and insurance systems, and practical strategies for social reintegration. This is where patient advocacy organizations prove so important: they help connect medical care with everyday life, ensuring that recovery is measured not only in clinical markers but in a person's ability to participate fully in the world around them. Functional and Social Life Patients frequently navigate: Disruption to employment or career trajectories Financial toxicity Strained social and family dynamics Keeping up with roles at work, at home, or in the community is a big part of what makes life feel meaningful. To live better, people need: Flexible workplace policies Disability and insurance navigation support Social reintegration strategies This is where patient advocacy organizations matter most. They help connect medical care with everyday life.

Empowerment shifts the patient's role cont’d When patients have information, they feel more in control. Understanding their disease trajectory, the treatment options available to them, how to manage side effects, and where clinical trial opportunities exist allows people to take a genuine part in decisions about their care rather than simply receiving them. Health literacy is therefore not a soft skill but a foundation of empowerment: an informed patient can ask better questions, weigh trade-offs against their own priorities, and engage with their care team as a partner. Building that literacy—through plain-language resources, education programs, and peer support—is one of the most direct ways to shift the balance of power toward the person living with the condition. Patient Empowerment and Health Literacy When patients have information, they feel more in control. Understanding: 1. Disease trajectory 2. Treatment options 3. Side effect management 4. Clinical trial opportunities This helps people take part in making decisions about their care.

Continuous monitoring using validated PRO tools Symptom-directed therapies alongside disease-directed treatment Multidisciplinary care models

Groups like the Leukemia & Lymphoma Society of Canada and patient-led websites offer important information. More and more, digital tools let patients track their symptoms, see how they are doing, and talk to their care teams right away. When patients feel empowered, they go from just receiving care to being active partners in their health.

Empowerment shifts the patient's role cont’d Living better isn't a single intervention—it is an ecosystem. Moving from surviving to thriving requires alignment across clinicians, researchers, pharmaceutical partners, policymakers, and patient advocacy organizations, each contributing a piece that none can deliver alone. Most importantly, it requires listening to patients. When asked what living well means, patients consistently describe having the energy to engage in daily life, maintaining their independence, preserving their dignity, and finding purpose beyond a diagnosis. These are not secondary considerations to be addressed once the clinical work is done. They are central to care, and any system that claims to put patients first must be measured against them. Moving from Surviving to Thriving Living better isn't a single intervention—it is an ecosystem. It requires alignment across: Clinicians Researchers Pharmaceutical partners Policy makers Patient advocacy organizations And most importantly, it requires listening to patients. Patients consistently articulate that living well includes: Having energy to engage in daily life Maintaining independence Preserving dignity Finding purpose beyond diagnosis These are not secondary considerations. They are central to care.

These are not just extra details; they are at the heart of good care.

Empowerment shifts the patient's role cont’d

A Call to Action To truly support individuals living with blood cancers and disorders, we must: Embed quality of life metrics into every level of care and evaluation Invest in patient-centred research and real-world evidence generation Expand access to psychosocial and supportive care services Strengthen patient education and advocacy infrastructure Ensure healthcare systems are designed around long-term living—not episodic treatment

The future of hematology is not defined solely by survival curves. It is defined by individuals' ability to live full, meaningful, and empowered lives despite their diagnosis. Living better is not an aspirational goal—it is a measurable, achievable, and necessary standard of care. And as the field continues to evolve, one principle must remain constant: The true success of treatment is not just in adding years to life, but in adding life to those years.

Empowerment shifts the patient's role cont’d

The Mind Carries a Weight Nobody Sees on a Scan Then there's the psychological toll, which arrives quietly and lingers far longer than anyone expects. The initial diagnosis is its own trauma—the world tilts, and it doesn't fully right itself again. But what catches people off guard is what comes after: the anxiety that shows up every time a routine bloodwork appointment rolls around, the strange grief of finishing active treatment and suddenly losing the structure and support that came with it, the low hum of fear that never quite disappears even years into remission.

Blood cancers, in particular, often come with a chronic or relapsing-remitting pattern. There isn't always a clean "you're cured" moment. Many patients live in a kind of suspended watchfulness for the rest of their lives, and that takes a real psychological toll that deserves real support—not a pamphlet handed out at diagnosis, but ongoing access to counselling, peer support, and mental health check-ins woven into standard care. Psychosocial stability isn't a soft add-on to cancer treatment. It's part of the treatment.

Quality of Life (QoL) in Hematology: Moving from clinical outcomes to lived outcomes Fatigue, brain fog, and invisible symptoms: The underestimated burden, Patient-reported outcomes (PROs): Why your voice is data The Dimensions of Living Better Living well with a blood cancer or disorder covers many areas. It requires teamwork and focus on several key parts of life: Physical Wellbeing and Symptom Burden Patients with hematological conditions often experience persistent and fluctuating symptoms: Fatigue (often severe and chronic) Bone pain or splenomegaly discomfort Anemia-related breathlessness Treatment-related toxicities Even when the disease seems under control, symptoms can still cause problems. Managing them well means: Continuous monitoring using validated PRO tools Symptom-directed therapies alongside diseasedirected treatment & multidisciplinary care models Medical progress by itself is not enough if symptoms are not managed.

Psychological and Emotional Health A blood cancer diagnosis introduces a persistent state of uncertainty. For many, this includes: Anxiety related to disease progression Fear of relapse Identity disruption (from “healthy individual” to “patient”) Chronic blood conditions can especially cause ongoing mental stress. Mental health support is not just helpful; it is necessary. Evidence supports: Psychosocial oncology interventions Peer support models Access to counselling and cognitive behavioural therapy How patients feel emotionally is closely tied to how well they follow treatment and their overall outcomes. 19

Quality of Life (QoL) in Hematology cont’d Nobody Gets a Blood Cancer Diagnosis Alone Here's the part that so often gets missed in clinical conversations: a diagnosis doesn't just happen to one person. It ripples outward through an entire ecosystem of people, and each of them absorbs a piece of the impact in their own way. Spouses and partners often become caregivers overnight, on top of everything else they already were —a partner, sometimes a parent, sometimes still the household's primary earner. They're the ones sitting in waiting rooms, tracking medication schedules, and quietly managing their own fear so it doesn't add to their loved one's burden. Studies on caregiver strain consistently show rates of anxiety and depression in partners that rival, and sometimes exceed, those of the patients themselves. And yet caregivers are rarely asked how they're doing. Supporting a patient well has to include supporting the person standing beside them. Children and family members feel the shift too, even when adults try hard to shield them from it. Routines change. Emotional bandwidth thins out. Older children may quietly step into caregiving roles of their own, and younger ones often sense that something is wrong long before anyone explains it to them. Extended family—siblings, parents, in-laws—get pulled into logistics and decision-making they never expected to navigate, sometimes across long distances, sometimes while managing old family dynamics that resurface under stress.

Quality of Life (QoL) in Hematology cont’d Coworkers and employers are part of this ecosystem too, and it's an area that doesn't get nearly enough attention. A blood cancer diagnosis can mean months of treatment, unpredictable flare-ups, or a permanent shift in what a person can physically manage at work. Colleagues absorb workload. Managers navigate accommodation requests they may have zero training for. Workplace culture—whether it bends with compassion or quietly pushes someone out—can shape a patient's financial security and sense of identity for years. A thoughtful return-to-work plan, flexible scheduling, and a workplace that treats illness disclosure with genuine care rather than suspicion can be the difference between someone rebuilding their life and someone losing their footing entirely. Friends, meanwhile, often don't know what to do with any of it. Some lean in and become an essential part of the support network. Others, uncomfortable with illness or mortality, quietly drift away—and that loss, though rarely talked about, can be one of the more painful parts of the whole experience. Friendship networks need honest conversation and grace on both sides to survive a diagnosis intact.

What "Beyond Survival" Actually Looks Like Living better with a blood cancer means building care around the whole picture: symptom management that respects a person's actual daily life, mental health support that's available for the long haul rather than just the crisis point, and a recognition that patients exist inside families, workplaces, and friendships that all need support of their own. It means patient advocacy organizations, healthcare systems, and employers working from the same understanding—that a "successful" outcome isn't just a favourable lab result. It's a person who can still show up fully in their own life, and a circle of people around them who aren't quietly drowning in the process. Survival opened the door. It's long past time we walked all the way through it, together.

mybloodmyhealth.ca

monsangmasante.ca encouraging Canadians to get their blood checked yearly

My Blood My Health is an awareness campaign encouraging Canadians to look after their blood health at their yearly check-up.

The Long Road to Care: Indigenous, Rural, and Northern Access to Hematology Care A particular kind of exhaustion comes from being sick far from home. It is not only the fatigue of illness itself, but the weight of everything that surrounds it: the flights booked at the last minute, the motel rooms paid for out of pocket, the children left with an aunt or a grandmother, the language spoken in the waiting room that is not quite your own. For many Indigenous, rural, and northern patients living with blood cancers and blood disorders, this is the quiet, unspoken cost of getting care. It rarely shows up in a clinical chart, but it shapes every part of the journey. Hematology care — the treatment of leukemias, lymphomas, myeloproliferative neoplasms, and other blood conditions — depends on specialized centres. Bone marrow biopsies, stem cell transplants, and complex chemotherapy regimens are typically only available in large urban hospitals, often clustered in a handful of cities across the country. For a patient living in a fly-in community in northern Manitoba, or a small town three hours from the nearest city in rural Saskatchewan, that concentration of expertise can feel less like a resource and more like a wall.

The Long Road to Care cont’d The Weight of Distance Distance is never just distance. It is time away from work, family, land, community, and ceremony. A single appointment for bloodwork or a scan can mean an entire day of travel, sometimes two. For patients requiring ongoing treatment — as many blood cancer patients do — this is not a one-time hardship but a recurring one, month after month, sometimes for years. And distance carries a price tag. Flights from remote and northern communities can cost thousands of dollars. Even when medical travel programs exist, they rarely cover the full picture: accommodation near the hospital, meals, the cost of missing work, and the expense of hiring someone to care for children or elders back home. Patients and families often describe having to choose between financial strain and their own health, a choice no one should have to make. Left Out of Progress Clinical trials represent some of the most promising advances in hematology — new therapies, targeted treatments, options that may not yet be part of standard care. But trials are almost always run out of major academic centres, and eligibility often assumes a patient can attend frequent, sometimes weekly, appointments. For someone living hours or days from the nearest trial site, this simply is not feasible. The result is a quiet form of exclusion: not because a patient's disease doesn't qualify, but because their postal code does not.

The Long Road to Care cont’d Care That Sees the Whole Person Cultural safety is not a checkbox. It is the difference between a patient who feels heard and one who leaves an appointment feeling smaller than when they arrived. For Indigenous patients, trust in the healthcare system must be earned, and it is earned through relationships, through providers who take the time to understand a patient's community, their language, their ways of knowing health and healing. Cultural safety means recognizing that a patient may want to involve family or community in decisions differently than Western medical models expect. It means making space for traditional practices alongside clinical treatment, rather than positioning them as opposites. It also means acknowledging, honestly, when the system has failed patients before—because pretending otherwise only deepens the distance between provider and patient.

A Screen Is Not Always Enough Virtual care has opened real doors. For a patient who once needed to travel eight hours for a fifteen-minute follow-up, a video appointment can be transformative. It has meant more consistent monitoring, fewer missed workdays, and more nights spent at home instead of in a hospital cafeteria. But virtual care is not a complete solution, and treating it as one risks leaving people behind. Reliable internet access is far from guaranteed in many northern and remote communities. Some bloodwork and physical exams simply cannot happen through a screen. And for patients who have already felt unseen by the healthcare system, a video call can sometimes deepen that sense of distance rather than closing it. Virtual care works best as a bridge, not a replacement — one part of a larger, better-connected system.

The Long Road to Care cont’d Building Bridges Between Local and Tertiary Care One of the most persistent gaps in hematology care is the space between the local nursing station or community health centre and the tertiary hospital hours away. Too often, patients are left to carry information between the two themselves—repeating their history, re-explaining their treatment plan, and hoping test results have actually made the journey with them. Stronger coordination means local providers and specialists working as true partners: shared records, clear communication, and follow-up care that can happen closer to home whenever possible. It means a community nurse who knows a patient's treatment plan well enough to catch a complication early, rather than a patient having to recognize it alone, far from the specialists who understand it best.

The Difference a Guide Can Make Perhaps nothing illustrates the gap in the system more clearly than what happens when a patient navigator is not there. A diagnosis of blood cancer often arrives on top of an already overwhelming set of obligations — work, family, community responsibilities — and patients are suddenly expected to coordinate appointments across multiple cities, understand unfamiliar medical language, and advocate for their own needs at the exact moment they have the least capacity to do so. Patient navigators change that equation entirely. They help arrange travel, explain what to expect, connect patients to financial supports, and stand beside them, quite literally, in appointments where the stakes feel too high to face alone. For Indigenous and northern patients in particular, a navigator who understands both the healthcare system and the community can be the difference between a patient who disengages from care and one who stays the course. 27

The Long Road to Care cont’d Moving Forward Together None of these challenges exist in isolation. Distance, cost, exclusion from trials, cultural harm, the limits of virtual care, and gaps in coordination all compound one another, and each makes the others harder to bear. But they also point toward a shared solution: a hematology care system built with rural, northern, and Indigenous patients at the centre of its design, not as an afterthought at the edges of it. That means investment in local infrastructure, genuine partnership with Indigenous communities and knowledge keepers, funding models that reflect the true cost of travel, and a commitment to trial design that does not quietly exclude entire regions of the country. Most of all, it means listening — to patients, to families, to communities — about what care should actually look like when it is built to reach everyone, not just those who happen to live close to where the expertise is.

Building Bridges Between Local and Tertiary Care One of the most persistent gaps in hematology care is the space between the local nursing station or community health centre and the tertiary hospital hours away. Too often, patients are left to carry information between the two themselves— repeating their history, re-explaining their treatment plan, and hoping test results have actually made the journey with them. Stronger coordination means local providers and specialists working as true partners: shared records, clear communication, and follow-up care that can happen closer to home whenever possible. It means a community nurse who knows a patient's treatment plan well enough to catch a complication early, rather than a patient having to recognize it alone, far from the specialists who understand it best. 28

The Long Road to Care The Difference a Guide Can Make Perhaps nothing illustrates the gap in the system more clearly than what happens when a patient navigator is not there. Diagnosis with a blood cancer often arrives on top of an already overwhelming set of obligations — work, family, community responsibilities — and patients are suddenly expected to coordinate appointments across multiple cities, understand unfamiliar medical language, and advocate for their own needs at the exact moment they have the least capacity to do so. Patient navigators change that equation entirely. They help arrange travel, explain what to expect, connect patients to financial supports, and stand beside them, quite literally, in appointments where the stakes feel too high to face alone. For Indigenous and northern patients in particular, a navigator who understands both the healthcare system and the community can be the difference between a patient who disengages from care and one who stays the course.

Patient Advocacy Training Level One Courses Starting September 2025 Advanced Courses Starting November 2025 Register now! www.cacheducation.org contact: Info@CACHEducation.org

Emerging Treatments for Blood Cancers in Canada 31

Emerging Treatments for Blood Cancers in Canada Emerging and Recently Approved Blood Cancer Treatments in Canada by: Brigitte Leonard, PH.D. MSC

Mosunetuzumab: A New Treatment Option Bringing New Hope for People Living With Follicular Lymphoma 1 When lymphoma comes back, new options matter Hearing that follicular lymphoma has returned or is no longer responding to treatment can be difficult. You may already have gone through several treatments, and the thought of starting another therapy can bring many questions. The good news is that treatment for follicular lymphoma continues to evolve. One newer option is mosunetuzumab, marketed as Lunsumio.

(Figure 1).

Is mosunetuzumab chemotherapy? No. Mosunetuzumab is not traditional chemotherapy. It is an immunotherapy called a bispecific T-cell engager (Figure 1). Mosunetuzumab offers a different way to treat lymphoma. Rather than relying on traditional chemotherapy, it helps the body's own immune system recognize and attack lymphoma cells. This distinction is important because it works through a different mechanism. Instead of broadly targeting rapidly dividing cells, mosunetuzumab is designed to direct the patient's immune system cells (T cells) toward lymphoma cells (expressing a marker called CD20). For people whose follicular lymphoma has returned or stopped responding after at least two previous treatments, mosunetuzumab can offer another opportunity to achieve a meaningful response. How does mosunetuzumab work? Mosunetuzumab belongs to a newer class of medicines called bispecific antibodies. The name may sound complicated, but the idea is relatively simple. Follicular lymphoma cells commonly carry a protein called CD20 on their surface. T cells, which are part of our immune system, carry another protein called CD3. 32

Emerging and Recently Approved Blood Cancer Treatments in Canada cont’d Mosunetuzumab is designed to recognize both and acts like a bridge (Figure 2). By bringing a patient's T cells close to lymphoma cells, mosunetuzumab helps activate the immune system so T cells can attack and destroy cancer cells. This is an exciting approach because it uses the patient's own immune system rather than simply exposing the body to a conventional chemotherapy drug.

(Figure 2).

What kind of response can patients expect? Clinical studies have shown encouraging results in people with relapsed or refractory follicular lymphoma who had already received at least two previous treatments.

In the pivotal study, approximately 80% of patients responded to treatment, and about 60% achieved a complete response. A complete response means that no evidence of lymphoma could be detected using the study's response criteria. Importantly, these responses were not necessarily short-lived. With approximately three years of follow-up, researchers found that many patients who responded continued to benefit from treatment. The median duration of response was approximately 36 months, and median progression-free survival was approximately 24 months. These results are encouraging, particularly because the patients in these studies had already received several previous treatments.

Of course, clinical trial results describe groups of patients. They cannot predict exactly how a person will respond.

Emerging and Recently Approved Blood Cancer Treatments in Canada cont’d 1reatment that can be time-limited One particularly attractive feature of mosunetuzumab is that it can be given as a fixed-duration treatment defined by a fixed number of cycles based on response o treatment (Figure 3). Patients who achieve a complete response (CR) can stop treatment after the planned course rather than continuing indefinitely. This can mean an opportunity to have time away from cancer treatment while remaining in remission rather than necessarily taking cancer medication continuously. This does not mean that treatment has no side effects. It has its own unique safety considerations, and patients need to be monitored carefully

What should patients know about side effects? One of the most important side effects is called cytokine release syndrome (CRS). CRS happens when the immune system becomes strongly activated. It can cause symptoms such as: Fever or chills Fatigue Headache Low blood pressure Rapid heartbeat Shortness of breath or low oxygen levels in more serious cases The risk is generally greatest during the early doses, which is why mosunetuzumab uses a step-up dosing approach at the beginning of treatment (Figure 3).

(Figure 3).

Most CRS events in the clinical studies were manageable, and severe CRS was uncommon.

Emerging and Recently Approved Blood Cancer Treatments in Canada cont’d Other possible side effects include infections, low blood-cell counts and fatigue. Your healthcare team will monitor you and explain which symptoms to report immediately. How is mosunetuzumab different from CAR-T therapy? CAR-T therapy is another remarkable form of immune-based cancer treatment. Both approaches use T cells to fight lymphoma, but they do it differently. With CAR-T therapy, a patient's T cells are collected, genetically modified in a laboratory and then returned to the patient. With mosunetuzumab, the patient's existing T cells are recruited directly inside the body. This means mosunetuzumab is an off-the-shelf treatment and does not require the same cell-collection and manufacturing process associated with CAR-T therapy. That can make treatment considerably simpler for some patients. Importantly, CAR-T and bispecific antibodies are not simply "better" or "worse" versions of one another. They are different treatment strategies, and the best choice depends on the individual's lymphoma, previous treatments, overall health and treatment goals. A newer way to receive the treatment Mosunetuzumab was initially developed as an intravenous treatment. A subcutaneous formulation, Lunsumio Velo, was subsequently approved in the United States for adults with relapsed or refractory follicular lymphoma after two or more lines of therapy. This formulation is administered under the skin rather than through an intravenous infusion. For eligible patients, this development may make treatment more convenient and potentially reduce the time spent receiving therapy. Availability and approved use can differ between countries, so patients should discuss the options available where they live with their lymphoma specialist.

Emerging and Recently Approved Blood Cancer Treatments in Canada cont’d What does this mean for patients? Perhaps the most important message is this: A relapse does not necessarily mean that treatment options have run out. Follicular lymphoma is a disease for which researchers continue to develop new ways of using the immune system to control the cancer. Mosunetuzumab is one of these advances. In clinical studies, it has produced high response rates and durable remissions in people whose follicular lymphoma had already been treated several times. For some patients, it may provide something especially valuable: the possibility of a deep response with a treatment course that does not have to continue indefinitely.

Questions to ask your lymphoma specialist If mosunetuzumab is being considered for you, you may want to ask: Is mosunetuzumab appropriate for my type and stage of lymphoma? How many previous treatments have I received, and does that affect my expected response? What is the goal of treatment — reducing symptoms, achieving remission, or both? How will we know whether the treatment is working? How long will I need to receive treatment? What is my risk of cytokine release syndrome? Would CAR-T therapy or another bispecific antibody also be appropriate for me? Is the subcutaneous formulation available to me? What happens if the lymphoma comes back after mosunetuzumab?

Emerging and Recently Approved Blood Cancer Treatments in Canada cont’d

Looking forward Living with follicular lymphoma can mean living with uncertainty. But it can also mean benefiting from a rapidly changing treatment landscape. Mosunetuzumab illustrates how lymphoma treatment is moving toward increasingly targeted and immune-based approaches. For eligible patients, it offers another tool in the fight against follicular lymphoma — one that can harness the body's own immune system, produce deep responses in many patients, and potentially allow meaningful time away from treatment. For patients who have already undergone several treatments, another effective option can make a real difference.

Brigitte Leonard is an experienced executive in patient advocacy, Healthcare equity, Business strategy, and medical affairs

Iron Deficiency Anemia

The Iron We Don't Talk About: Living With and Beyond Iron Deficiency Anemia There's a particular kind of tired that doesn't go away with sleep. You wake up already reaching for coffee, climb one flight of stairs and feel your heart pound, forget the word you were about to say mid-sentence. For millions of people, this isn't burnout or a rough week. It's iron deficiency anemia, one of the most common—and most commonly dismissed— health conditions in the world. Iron deficiency anemia, or IDA, happens when your body doesn't have enough iron to make hemoglobin, the protein in red blood cells that carries oxygen from your lungs to every tissue you own. Without enough hemoglobin, your organs and muscles are quietly starved of oxygen. Your body doesn't collapse. It just... dims. And that dimming is so gradual that many people adjust to it for months, sometimes years, before anyone names what's wrong. How Common Is This, Really? IDA is not a rare diagnosis whispered about in specialist clinics. It's the most common nutritional deficiency on the planet, and the most common cause of anemia worldwide. It touches people across every age and background, but it lands hardest on a few groups in particular: women of reproductive age who lose iron through menstruation, pregnant people whose iron needs roughly double to support a growing baby, older adults, people living with chronic kidney disease or inflammatory bowel disease, and anyone recovering from surgery or significant blood loss.

And yet, for a condition this widespread, awareness of it remains surprisingly thin. Many people who live with IDA describe a long and frustrating road to diagnosis — symptoms brushed off as stress, aging, or "just needing more sleep," before a routine blood test finally reveals what was happening under the surface.

The Iron We Don't Talk About cont’d What Actually Causes It Iron deficiency doesn't come from one single source. It usually comes from one of three overlapping problems: not getting enough iron in, losing too much iron out, or not absorbing the iron you do consume. Not enough iron in. Iron comes from food — red meat, poultry, fish, lentils, beans, and iron-fortified grains are among the richest sources. People who eat little or no meat, who are pregnant, or who are still growing (think adolescents in a growth spurt) often need more iron than a typical diet provides.

The Iron We Don't Talk About cont’d

Too much iron out. This is the most common driver in adults, and it's often tied to blood loss. Heavy menstrual periods are one of the leading causes of IDA in women. Slow, sometimes invisible blood loss from the digestive tract — caused by ulcers, polyps, hemorrhoids, or in some cases colorectal cancer — is a major cause in men and postmenopausal women, which is exactly why unexplained IDA in these groups is taken so seriously by physicians. Frequent blood donation, childbirth, and surgery can also significantly draw down iron stores. Trouble absorbing it. Even with enough iron on your plate, your gut still has to absorb it. Conditions like celiac disease, Crohn's disease, and prior gastric bypass or bariatric surgery can all interfere with iron absorption. So can something as ordinary as taking iron supplements alongside coffee, tea, or calcium — all of which can block uptake.

Recognizing the Signs The symptoms of IDA read like a list of things everyone dismisses in themselves: fatigue that doesn't lift, pale skin, shortness of breath on exertion, dizziness, cold hands and feet, brittle nails, headaches, restless legs at night, and a strange but welldocumented craving to chew ice known as pica. Hair thinning and difficulty concentrating are common too. None of these symptoms alone points clearly to IDA — which is precisely why so many people live with it for a long time before a simple blood test, checking hemoglobin and ferritin (the protein that stores iron), finally connects the dots.

The Iron We Don't Talk About How It's Treated Today The encouraging part of this story is that IDA is one of the most treatable conditions in medicine—once it's identified. Treatment today generally follows a few paths, and the right one depends on how severe the deficiency is, what's causing it, and how a person's body tolerates iron replacement. Oral iron supplements remain the standard starting point for most people with mild to moderate IDA. Ferrous sulphate and similar tablets are inexpensive and effective at rebuilding iron stores over weeks to months. The catch is tolerability: oral iron is notorious for causing constipation, nausea, and stomach discomfort, which leads many people to stop taking it before their levels have fully recovered. Taking iron every other day rather than daily, pairing it with vitamin C, and avoiding coffee or dairy around dosing times can all improve how well the body absorbs and tolerates it.

Intravenous (IV) iron has become an increasingly important option, particularly for people who can't tolerate oral iron, whose bodies don't absorb it well, who have ongoing blood loss that outpaces what pills can replace, or who need iron levels corrected quickly — before surgery, for example, or during pregnancy. Newer generation IV iron formulations allow much of a person's yearly iron needs to be delivered in just one or two infusion visits, a significant improvement over older formulations that required many more appointments. Research continues to explore exactly when IV iron should move earlier in the treatment path rather than being reserved as a backup plan, and current clinical guidance is evolving as that evidence grows.

The Iron We Don't Talk About Treating the underlying cause is just as essential as replacing the iron itself. Iron therapy alone won't fix a bleeding ulcer, undiagnosed celiac disease, or heavy menstrual bleeding. Anyone diagnosed with IDA — especially without an obvious explanation like pregnancy or known heavy periods — deserves a thoughtful investigation into where the iron is actually going.

Beyond the Blood Test What often gets lost in the clinical conversation is what it actually feels like to live inside this condition: the exhaustion that colours every part of a day, the frustration of being told your labs are "not that bad" while you can barely function, the isolation of a diagnosis that sounds minor to everyone except the person carrying it. IDA is common, but common does not mean simple, and it does not mean it should be minimized. People living with iron deficiency anemia deserve more than a prescription and a pat on the back. They deserve information, community, and a voice in how care for this condition evolves—because the people who live with it every day are the ones who understand it best. That's why HEAL Canada will be assisting in establishing a dedicated Iron Deficiency Anemia patient advocacy organization — a home for patients, caregivers, and clinicians to come together, share experiences, push for better awareness and faster diagnosis, and ensure that no one spends years wondering why they feel so tired before finally getting an answer. Watch this space. This is only the beginning.

Contact Heal Canada at admin@healcanada.org if you would like to join this patient advocacy group 44

Lifestyle, Wellness & Supportive Care

Protecting Your Energy, Protecting Your Health There's a particular kind of tired that people outside the blood cancer and blood disorder community rarely understand. It isn't solved by an early night or a strong coffee. It settles into your bones, shows up uninvited in the middle of a good day, and makes even small tasks — folding laundry, answering an email, showing up for a phone call with a friend — feel like climbing a hill that keeps getting steeper. If you've lived this, you already know: fatigue isn't a symptom you can simply push through. And when your immune system is also working with less than its usual strength, that fatigue often travels hand in hand with something else — a heightened vulnerability to infection that changes how you have to move through the world. This month, we want to talk honestly about three deeply connected things that are rarely discussed together: vaccinations, infection prevention, and fatigue. On their own, each can feel like a small chapter in your care. Together, they form one of the most important stories in living well with a blood cancer or blood disorder. Why Your Immune System Needs Extra Support Blood cancers and blood disorders — leukemia, lymphoma, myeloma, myelodysplastic syndromes, myeloproliferative neoplasms, and others — affect the very system responsible for producing healthy blood cells, including the white cells that defend your body against infection. Add to that the effects of chemotherapy, targeted therapies, stem cell transplants, or immunosuppressive treatments, and it becomes clear why even a common cold can hit differently for someone in this community. What might be a minor inconvenience for someone else can become a serious, even hospital-worthy, event for a patient with a compromised immune system.

This is not meant to frighten you. It's meant to explain why the conversations your care team has with you about vaccines and hand hygiene aren't just routine checklist items — they are frontline defenses, every bit as important as your treatment plan itself.

Protecting Your Energy, Protecting Your Health cont’d Vaccinations: A Shield, Not a Guarantee Vaccination schedules for blood cancer and blood disorder patients often look different from the general population's, and that's by design. Depending on where you are in your treatment — before, during, or after — your care team may recommend a modified timeline, additional doses, or specific vaccines like the pneumococcal or shingles vaccines that carry extra weight for someone with a suppressed immune system. It's worth saying plainly: not every vaccine works the same way for every patient. If your immune system is significantly weakened, a vaccine may not generate the same robust protection it would in someone healthy. This is exactly why the people around you — family, caregivers, close friends — matter so much. When they stay current on their own vaccinations, they're not just protecting themselves; they're building a kind of shield around you, reducing the chances that illness ever reaches your door in the first place. Living well with a blood disorder is rarely a solo project. It's a team effort, and vaccination is one of the clearest examples of that truth.

If you're ever unsure whether a vaccine is safe or appropriate for your specific diagnosis and treatment stage, that question always belongs with your hematologist or oncology team — not a general guideline, and not a well-meaning but uninformed voice online. Your situation is specific. Your care should be too.

Protecting Your Energy, Protecting Your Health cont’d Infection Prevention: The Everyday Armour Infection prevention can feel like a long list of rules — wash your hands, avoid crowds, be careful with raw foods, and check in about fevers right away. That list can feel restrictive, even isolating. But there's another way to see it: these small, steady habits are a form of self-respect. They are how you say, every single day, that your health is worth protecting. Some of the most meaningful steps are also the simplest. Frequent handwashing. Avoiding close contact with anyone who is sick, even if it means missing a gathering. Being thoughtful about food safety, particularly around raw or undercooked items. Keeping your home environment clean without letting it become a source of anxiety. And perhaps most importantly, knowing your own warning signs — a fever, chills, unusual fatigue, a new cough — and having a clear plan for whom to call and how quickly to act. That last point deserves emphasis. For many blood cancer and blood disorder patients, a fever isn't something to wait out. It can be the first sign of a serious infection that needs immediate medical attention. Ask your care team, clearly and specifically, what temperature and what symptoms should send you to urgent care or the emergency room without delay. Write it down. Share it with your caregiver. This one step can make all the difference.

Fatigue: Listening to What Your Body Is Telling You And then there's fatigue — the quiet, constant companion that so many patients describe as harder to explain than the disease itself. Cancer-related fatigue is not laziness, and you can't simply will it away. It is a real physiological consequence of the disease, the treatment, and the enormous amount of energy your body spends just to keep fighting.

Protecting Your Energy, Protecting Your Health cont’d Living well with fatigue doesn't mean defeating it outright. It means learning to work with it. That might look like pacing your day around your natural energy rhythms, saying yes to rest without guilt, and giving yourself permission to let go of tasks that can wait. It might mean gentle movement on the days your body allows it, because activity — even a short walk — can sometimes ease fatigue more than complete rest does. It might mean being honest with the people in your life about what you can and cannot do this week, this day, this hour. Fatigue also deserves a place in your conversations with your care team, not as an afterthought but as a symptom worth managing directly. Anemia, thyroid function, sleep quality, nutrition, and mental health can all play a role, and there are often concrete steps that can help. You don't have to simply endure it. Living Well Means Living Prepared Vaccinations, infection prevention, and fatigue management aren't separate boxes to check. They are three parts of the same commitment — to protect your body, honour its limits, and give yourself the best possible foundation for the life you want to keep living. None of this is about fear. It's about preparation, partnership with your care team, and the quiet, daily courage it takes to keep choosing your own wellbeing. You are not alone in this. Every reader of this magazine understands, in some deeply personal way, what it means to carry both the weight of a diagnosis and the determination to live fully anyway. That determination — supported by good information, good care, and a little grace for yourself on the hard days — is what living well truly looks like.

Summer Veggie Soup Soup • Gentle, hydrating, nutrient-dense Ingredients (serves 6) 1 tbsp extra virgin olive oil 1 medium onion, chopped; 4 cloves garlic, minced 2 carrots, sliced 32 oz reduced-sodium chicken or vegetable broth 1 (15 oz) can chickpeas, drained and rinsed 2 medium yellow squash and 1 zucchini, sliced 2 medium potatoes, diced 1 cup corn kernels 6 asparagus spears, cut into 1-inch pieces 2 plum tomatoes, chopped ¼ cup each fresh basil and chives, chopped Salt and pepper to taste Directions: Sauté onion and garlic, then carrots. Stir in broth, chickpeas, squash, zucchini, potatoes, corn, salt, and pepper; simmer. Add asparagus, cook until tender, then stir in tomatoes. Garnish with basil and chives. Nutrition (per serving): 210 calories, 3.5 g total fat (0 g saturated), 38 g carbohydrate, 9 g protein, 7 g dietary fiber, 340 mg sodium Soups are often recommended during chemo for patients with low appetite or mouth sensitivity — this one is nutrient-dense without being heavy, and can be pureed further if needed for easier swallowing. Source: American Institute for Cancer Research, via Blood Cancer United Nutrition Education Services Center

Red Beans and Rice Plant-based main or side • High fibre, budgetfriendly Ingredients (serves 4) 1 cup uncooked brown rice 2 tsp vegetable oil 2 cloves garlic, minced 1 small yellow onion, chopped 1 bell pepper, chopped 1 fresh tomato, chopped 1½ oz + 1½ cups water (divided) ¼ tsp salt, ⅛ tsp cumin 2 (15.5 oz) cans low-sodium red kidney beans, drained and rinsed 1 avocado, chopped 2 tbsp fresh cilantro (optional)

Directions: Cook rice in water, about 45 minutes. Meanwhile, sauté garlic, onion, and pepper until golden; add tomato, salt, cumin, beans, and water, simmering 20–30 minutes until beans are soft. Serve beans over rice; top with avocado and cilantro. Nutrition (per serving): 444 calories, 10 g total fat (2 g saturated), 77 g carbohydrate, 17 g protein, 18 g dietary fiber, 420 mg sodium The high fiber and plant protein support digestive regularity, which can be affected by treatment. A fully vegetarian option for patients avoiding red meat. Source: Blood Cancer United Nutrition Education Services Center / USDA

Sweet Potato Hash with Egg

Breakfast • High-protein, iron-rich start to the day Ingredients (serves 4) 2 large sweet potatoes, cubed (about 4 cups) 1 cup water 1 tbsp vegetable oil, plus 1 tsp for eggs 2 chicken sausages 1 small yellow onion, diced 1 bell pepper, cored and diced 2 cloves garlic, minced 4 large eggs

Directions: Simmer sweet potato cubes in water until tender, about 20 minutes. Add oil, sausage, onion, pepper, and garlic; cook another 20 minutes until browned and tender. Fry eggs separately (3–5 min) and top each portion of hash with one. Nutrition (per serving): 346 calories, 14 g total fat (3 g saturated), 35 g carbohydrate, 20 g protein, 6 g dietary fiber, 405 mg sodium Good source of easy-to-digest protein and iron — helpful for patients managing fatigue or low blood counts. Can be made ahead and reheated for low-energy days.

White Bean Pasta Side dish or light lunch • Vegetarian, high-protein, no eggs Ingredients (serves 6) ½ lb whole-wheat ditalini (or other small whole-wheat pasta) 2 (15 oz) cans no-salt-added cannellini beans, rinsed and drained 1 tbsp olive oil 1 tsp butter 1 large onion, thinly sliced 2 tsp fresh rosemary, finely chopped ¼ tsp dried basil Salt and freshly ground pepper, to taste ¼ cup grated Parmesan cheese 2 tbsp fresh parsley, chopped (or 1 tsp dried) Cherry tomatoes or red pepper slices, for garnish (optional)

Directions: Cook pasta according to package directions, adding the beans about halfway through cooking (5–6 minutes in). While it cooks, warm the oil and butter in a skillet over medium heat; sauté the onion, rosemary, and basil until the onion is lightly browned, 8–10 minutes. Drain pasta and beans, transfer to a warm bowl, and toss with the onion mixture. Season with salt and pepper, then top with Parmesan and parsley. Garnish with tomatoes or red pepper if using. Serve immediately. Nutrition (per ¾ cup serving): 305 calories, 5 g total fat (1.5 g saturated), 51 g carbohydrate, 14 g protein, 7 g dietary fibre, 69 mg sodium Beans and whole-wheat pasta together provide plant protein and fibre without relying on eggs — a good option for patients managing cholesterol concerns, egg sensitivity, or who simply want variety. It is low in sodium, gentle on the stomach, and reheats well for batch cooking on low-energy days.

Mental Health & Psychosocial Impact

Anxiety and chronic illness: Practical coping strategies; The emotional toll Anxiety and Chronic Illness: There's a particular kind of tired that comes from living inside a body that doesn't behave the way you want it to. It's not just the fatigue of the illness itself — it's the mental weight of always tracking, always wondering, always half-listening for what your body might do next. If you live with a chronic illness, you already know this feeling has a name, even if you've never said it out loud: anxiety. Anxiety and chronic illness travel together more often than either one travels alone. Studies estimate that people managing long-term conditions experience anxiety at roughly twice the rate of the general population, and anyone who has spent a night awake cataloguing symptoms, or sat in a waiting room rehearsing questions they're afraid to ask, understands why. The uncertainty of illness is fertile ground for worry. But there are ways to work with that anxiety instead of being run by it, and that's what this piece is about. The Emotional Toll of "Watch and Wait" Few phrases in medicine carry as much quiet weight as "watch and wait." For patients with certain blood cancers, slow-growing tumors, or early-stage conditions, this is often the recommended approach — monitor the illness, hold off on treatment, see what happens. Clinically, it can be sound. Emotionally, it can feel like being told to sit still while something unknown grows inside you. There is no action to take. No treatment plan to follow, no protocol to give shape to your days. Just appointments, scans, and the space between them — space that anxiety tends to fill on its own terms. Patients describe it as living with one foot in normal life and one foot braced for bad news, unable to fully commit to either. 57

Anxiety and chronic illness: Practical coping strategies The emotional toll cont’d What helps, according to many who've lived through extended watch-and-wait periods, isn't forcing false calm. It's finding small, honest ways to hold the uncertainty without letting it take over the whole room. Some people build a rhythm around their monitoring — a specific ritual before and after each scan, something as simple as a walk or a call to a friend, that gives the appointment a beginning and an end rather than letting it bleed into every other day. Others find relief in naming the feeling out loud to someone who won't rush to fix it. Suppressing anxiety about an unresolved diagnosis rarely works; the mind tends to notice what it's told to ignore. Acknowledging it — "I'm scared about Thursday's results" — often loosens its grip more than pretending otherwise. It also helps to separate what is knowable from what isn't. You can't know what a scan will show next month. You can know what you're doing this week, this afternoon, in the next twenty minutes. Anchoring attention to that smaller, more manageable scale doesn't erase the fear, but it gives the mind somewhere steadier to stand.

Anxiety and chronic illness: Practical coping strategies The emotional toll cont’d Building Resilience in Long-Term Illness Resilience gets talked about as though it's a personality trait some people simply have, and others don't. In reality, it looks more like a set of habits, built slowly, often out of necessity, by people who didn't have the luxury of falling apart for long. One of the quieter forms of resilience is grief literacy — the ability to recognize that chronic illness involves real losses, even when nothing catastrophic has happened. The loss of spontaneity. The loss of a body you used to trust. The loss of plans you had to cancel more than once. Naming these losses, rather than minimizing them because "it could be worse," tends to free up energy that would otherwise go toward pretending everything is fine. Resilience is also built through pacing rather than pushing. Many people newly diagnosed try to manage illness the way they managed everything else in their lives before — through effort and willpower. Chronic illness rarely rewards that approach. It rewards rhythm: knowing your energy in advance, planning around it, and treating rest as There's also something to be said for finding meaning maintenance rather than inside the illness rather than only around it. This doesn't failure. The people who mean forcing gratitude or insisting a diagnosis was a navigate long-term illness "gift" — for many, it wasn't, and that's a legitimate with the most steadiness are response too. But some people do find that advocacy, often not the ones who push mentoring newer patients, or simply becoming an hardest, but the ones who've expert in their own condition gives the experience a learned to read their own shape that feels less like something happening to them limits without shame. and more like something they're actively working with. Finally, resilience needs somewhere to rest. It isn't built by staying strong every day; it's built by having enough safe moments — a good night's sleep, a laugh with a friend, an hour with no appointments — that the harder days don't accumulate unchecked. 59

Anxiety and chronic illness: Practical coping strategies The emotional toll cont’d Support Systems: Peer Groups vs. Clinical Support Anyone managing a chronic illness eventually has to figure out where to bring which parts of the experience. Clinical support and peer support tend to serve different needs, and understanding the difference can save a lot of frustration. Clinical support — physicians, nurses, therapists, social workers — brings expertise, continuity of care, and a trained eye for what might need medical attention. A good clinician can distinguish ordinary anxiety from something that needs treatment, adjust medication, or refer to specialized mental health support. This kind of relationship matters enormously, but it has natural limits. Appointments are short. The relationship is, by design, somewhat asymmetrical. And even the most compassionate clinician hasn't personally lived inside the illness they're treating. That's where peer support tends to fill a different gap. Talking with someone who has sat in the infusion chair, gotten the 2 a.m. phone call with results, and navigated the strange etiquette of telling an employer about a diagnosis carries a kind of understanding that's hard to replicate elsewhere. Peer groups offer validation that isn't diagnostic, practical tips that aren't in any pamphlet, and the simple relief of not having to explain the basics before getting to the real conversation. Neither replaces the other. Peer groups aren't a substitute for medical care, and clinicians — however skilled — usually can't offer the lived-experience camaraderie that peer communities provide. The strongest support systems tend to combine both: a care team that manages the medical reality, and a peer community that manages the human one. If you only have access to one right now, that's still meaningful. But if you've been relying solely on clinical appointments to carry the emotional weight of your diagnosis, it may be worth seeking out a patient community — many now exist online, across time zones and conditions, making peer connection more reachable than it's ever been.

A Closing Thought Anxiety in chronic illness isn't a character flaw or a sign that you're handling things badly. It's a reasonable response to genuine uncertainty, played out inside a body you have to keep living in regardless. The goal isn't to eliminate the anxiety entirely — that's rarely realistic — but to build a life around it that has enough steadiness, connection, and honest acknowledgment that the anxiety no longer runs the whole show. That work is ongoing, imperfect, and deeply human. It's also, for what it's worth, work you don't have to do alone. 60

www.cllcanada.org 62

Caregiver Corner The hidden health and economic burden of caregiving

The hidden health and economic burden of caregiving A particular kind of tired doesn't show up on a blood test. It lives in the shoulders of a daughter who has just left her mother's chemotherapy appointment to make it to a 9 a.m. shift. It sits behind the eyes of a husband who has learned to read his wife's vital signs monitor better than he ever learned to read a spreadsheet. It hums quietly under the surface of millions of people who, one day, without training, without warning, and without pay, became the backbone of someone else's survival. We call them caregivers. But that word is far too small for what they actually carry. The Invisible Workforce

Across North America, tens of millions of people provide unpaid care to a spouse, parent, child, or friend living with a chronic illness, disability, or life-limiting condition. If this labour were counted as a formal economy, it would rival the GDP of entire nations. Caregivers manage medications, coordinate specialists, translate medical jargon at kitchen tables, advocate in hospital hallways, and hold the emotional weight of watching someone they love struggle. And they do it, in most cases, entirely for free. This is not a niche experience. It is a quiet, sprawling reality that touches nearly every family eventually. Yet caregiving remains one of the least visible forms of labor in our healthcare systems — unmeasured in most economic indicators, unacknowledged in most workplace policies, and largely unsupported in most care plans.

The hidden health and economic burden of caregiving cont’d The Health Cost No One Talks About Here is the paradox at the heart of caregiving: the people keeping patients alive are quietly wearing themselves down in the process. Chronic stress from caregiving has been linked to elevated rates of anxiety, depression, disrupted sleep, and cardiovascular strain. Caregivers frequently report skipping their own medical appointments, delaying screenings, and ignoring their own symptoms because there simply isn't room on the calendar — or in the budget — for two patients in one household. Many caregivers describe a slow erosion of identity: friendships fade, hobbies disappear, and the caregiving role expands to fill every available hour until no clear line remains between "helping" and "disappearing." This is sometimes called caregiver burnout, but that phrase undersells the physiological reality. Sustained caregiving stress changes the body. It elevates cortisol. It taxes immune function. It ages people faster than their calendar years would suggest. A person can be simultaneously the strongest advocate in the room and the most depleted person in it. And too often, this suffering goes undiagnosed, because caregivers are trained — by circumstance, by love, by necessity — to put their own needs last.

The Economic Weight Behind the Emotional One The financial burden of caregiving is just as real, and just as underdiscussed. Caregivers frequently reduce their work hours, decline promotions, or leave the workforce entirely to manage caregiving duties. This isn't a freely made personal choice —it's often the only viable option when formal care is unaffordable, unavailable, or simply insufficient for a loved one's needs. The result is a measurable loss of income, retirement savings, and career trajectory that can follow a caregiver for decades after caregiving ends. 65

The hidden health and economic burden of caregiving cont’d Add to this the direct costs: medications not fully covered by insurance, mobility aids, home modifications, transportation to appointments, specialized foods, and the countless small expenses that add up around chronic illness. Families frequently draw down savings, take on debt, or rely on multiple household members' incomes just to keep pace with the true cost of care. What makes this especially difficult is that these costs are largely invisible to the systems meant to support patients. Healthcare budgets are built around the patient in the bed or the chair — not the person standing beside them, sacrificing income, sleep, and stability to keep that patient stable. Why This Matters for Every Health System When caregivers break down, the entire system feels it. A caregiver's hospitalization, depression, or workforce exit doesn't just affect one household — it ripples outward into hospital readmission rates, emergency care usage, and long-term care demand. Supporting caregivers isn't a soft, feel-good add-on to healthcare policy. It is a structural necessity for any health system that wants to remain sustainable. Yet caregiver support remains an afterthought in most policy conversations. Respite care is underfunded. Paid caregiving leave is inconsistent or nonexistent in many jurisdictions. Mental health resources for caregivers are scattered, hard to access, or simply unknown to the people who need them most. We have built health systems that treat the patient as the unit of care, when the true unit of care has always been the family.

The hidden health and economic burden of caregiving cont’d What Real Support Could Look Like Change doesn't require reinventing healthcare. It requires recognizing caregiving as legitimate, essential labour — and building support structures around that recognition. This could mean workplace policies that allow flexible schedules and protected leave for caregiving responsibilities, without penalty to careers or income. It could mean healthcare systems that formally screen caregivers for burnout and depression during a loved one's appointments, not as an afterthought, but as standard practice. It could mean expanding access to respite care, so that caregivers are guaranteed regular, reliable breaks rather than begging for scraps of relief. It could mean financial supports — tax credits, stipends, or subsidized services — that acknowledge caregiving as work with real economic value. And it could mean something simpler, too: a cultural shift toward asking caregivers not just "How is your loved one doing?" but "How are you doing?" — and actually waiting for the answer.

Seeing the Invisible Caregivers rarely ask for recognition. Many don't even think of themselves as caregivers at all — they think of themselves as spouses, children, or friends simply doing what needs to be done. But that humility is exactly why so much of this burden stays hidden. The people carrying the heaviest loads are often the least likely to say so out loud. If we want healthier patients, we need healthier caregivers. If we want sustainable health systems, we need to count caregiving labor as the economic force it truly is. And if we want a more humane approach to illness and aging, we need to stop treating caregivers as an invisible support system and start treating them as what they are: essential, exhausted, and deserving of care themselves. The next time someone tells you they're "just" taking care of a parent, a partner, or a child, remember: there is no "just" in that sentence. There is a full, complicated, often unpaid job — one that deserves to be seen, supported, and valued far more than it currently is. 67

Heal Canada and Pat ADV Hub in the USA have embarked on a collaborative journey, aiming to revolutionize the realm of patient advocacy across North America. This pioneering partnership brings together two influential organizations from neighbouring countries, combining their extensive expertise and resources. The objective is to expand and enhance the access to critical information for patient advocates, ensuring that individuals across the continent receive the best possible support and guidance in their healthcare journeys. By bridging the gap between Canadian and American healthcare advocacy, this alliance promises to foster a more informed, empowered, and connected community of patient advocates, significantly contributing to the improvement of healthcare experiences for countless individuals patadvhub@gmail.com www.patadvhub.org

Research, Innovation & Data

When the Numbers Tell a Different Story: How Real-World Evidence Is Changing Blood Cancer Care Ask anyone who has sat across from an oncologist, waiting to hear what a new set of bloodwork means, and they will tell you the same thing: statistics feel abstract until they are about you. A clinical trial can tell us that a treatment worked for a carefully selected group of a few hundred people over a defined period of time. But blood cancer patients rarely live inside the tidy boundaries of a trial protocol. They are older, or younger, or managing three other conditions at once, or living two hours from the nearest treatment centre. This is the gap that real-world evidence, or RWE, has quietly begun to close — and for the blood cancer community, that gap is not academic. It is personal. Beyond the Trial's Edge Clinical trials remain the gold standard for proving that a drug works and is safe. But by design, they exclude a lot of the messiness of real life. Someone with myelofibrosis who also has kidney disease might never qualify for the study that approved their medication. A patient managing chronic myeloid leukemia while raising three kids and working full-time may not have the flexibility to attend the frequent monitoring visits a trial requires. Trials answer the question "can this treatment work under ideal conditions?" Real-world evidence answers a different, arguably more urgent question: "how does this treatment actually perform in the population that will use it?" RWE draws from sources outside the trial setting altogether —electronic health records, insurance claims databases, patient registries, and increasingly, information patients report about how they feel day to day. When researchers pull these threads together, patterns emerge that a controlled trial, by its very nature, could never capture. How long does a treatment keep working once people leave the closely monitored trial environment? What side effects show up only after years of use? Does a therapy behave differently in a 75-year-old with comorbidities than it did in the 55-year-old median trial participant? 70

When the Numbers Tell a Different Story: How Real-World Evidence Is Changing Blood Cancer Care cont’d Why This Matters So Much for Blood Cancers Blood cancers occupy a strange middle ground in oncology. Conditions like myeloproliferative neoplasms, lymphomas, and leukemias are often chronic rather than acute — people don't just survive them; they live with them, sometimes for decades. That long horizon means the question is never simply "did the treatment work at twelve weeks?" It becomes "what does year eight look like? Year fifteen?" Many blood cancers are also rare or split into ever-narrower subtypes as genetic testing advances. A trial for a specific mutation subtype might only be able to recruit a few hundred participants worldwide. That is not a criticism of the research — it is simply the reality of studying uncommon diseases. Real-world evidence becomes essential precisely because it can aggregate outcomes across thousands of patients treated in the community, filling in a picture that a single trial, no matter how well designed, was never built to complete on its own. There is also the matter of access and equity. Trial populations have historically skewed toward people who live near academic medical centres, who have reliable transportation, who can take time off work. Real-world data pulls in patients treated in community clinics, in rural regions, in different countries with different healthcare systems. When advocates push for a treatment to be reimbursed or a guideline to be updated, real-world evidence often becomes the piece that convinces a payer or a regulator that the benefit holds up outside the trial's protective bubble. The Patient Voice Inside the Data

When the Numbers Tell a Different Story: How Real-World Evidence Is Changing Blood Cancer Care cont’d What makes this moment particularly meaningful is the growing role patients themselves play in generating this evidence. Patient-reported outcome measures — surveys and tools that ask people directly about fatigue, symptom burden, mental health, and quality of life — are increasingly built into registries and real-world studies. This matters enormously in blood cancer, where a treatment might successfully control blood counts on paper while leaving someone exhausted, anxious, or unable to work. Clinical trial endpoints have not always captured that lived reality. Real-world evidence, especially when it incorporates the patient's own account, can correct that blind spot. Patient advocacy organizations have become quiet but powerful engines behind this shift. By building and maintaining disease-specific registries, encouraging members to participate in longitudinal surveys, and partnering with researchers who take lived experience seriously, advocacy groups are helping ensure real-world data reflects real patients—not just those who happened to qualify for a trial a decade ago.

When the Numbers Tell a Different Story: How Real-World Evidence Is Changing Blood Cancer Care cont’d A Note of Caution None of this means real-world evidence replaces rigorous clinical research, and it would be a disservice to pretend otherwise. Real-world data can be messy. It can carry biases — perhaps healthier patients are more likely to stay in a registry long enough to be counted, skewing results toward better outcomes than the true average. Without careful statistical methods to account for these confounders, realworld evidence can mislead as easily as it can illuminate. RWE works best when it complements clinical trial data, not replaces it—each compensating for what the other cannot see.

What This Means for the Person Holding the Diagnosis For someone newly diagnosed with a blood cancer, the significance of real-world evidence may not be obvious at first. It lives in policy meetings and regulatory submissions, far from the exam room. But its effects eventually reach that exam room. It shapes which treatments get funded. It informs how long-term monitoring guidelines are written. It gives oncologists a fuller answer when a patient asks, "but what does this actually look like ten years from now?" Real-world evidence, at its best, is an act of collective memory — thousands of individual experiences, carefully gathered and honoured, turned into knowledge that helps the next patient walk into their appointment a little less in the dark. That is not a small thing. In a disease that so often asks people to live with uncertainty, it is one of the few tools we have that gets a little more certain with time. 73

Why Patient Registries Matter in the Healthcare System There's a particular kind of loneliness that comes with a rare or complex blood disorder. You sit in a waiting room and realize the person next to you probably doesn't share your diagnosis. Your doctor, however brilliant, may have only seen a handful of cases like yours in an entire career. And when you search for answers late at night, you find fragments — a forum post here, a small study there — but rarely the full picture. This is the gap that patient registries were built to close, and it's worth taking a moment to understand just how much rides on them. At its simplest, a patient registry is an organized collection of information about people who share a health condition. Names, treatments, symptoms, outcomes, quality of life — gathered over time, from many people, in one place. It sounds almost administrative that way. But in practice, a registry is closer to a collective memory. It's the accumulated experience of thousands of patients, distilled into something researchers, clinicians, and policymakers can actually use.

Why does that matter so much, especially for those of us living with blood disorders? Because rare and complex conditions rarely show up in large enough numbers at any single clinic to reveal patterns. One hematologist might treat three patients with a particular MPN subtype in a decade. A registry can connect that hematologist's three patients to three thousand others across the country, or the world. Suddenly, questions that seemed unanswerable — Does this treatment work better for younger patients? Is there a subtle warning sign we've been missing? — become questions with real answers, built from real lives. I think about this often in my own work with patient advocacy organizations. When we've partnered on registry-adjacent research, the value isn't abstract. It shows up in very concrete ways: a treatment guideline that shifts because the data revealed something new, a conversation between regulators and industry that finally has patient-reported outcomes at the center of it instead of an afterthought, a drug approval that moves forward because a registry demonstrated realworld effectiveness that a short clinical trial alone couldn't capture.

Why Patient Registries Matter in the Healthcare System cont’d Registries also do something quieter but equally important — they give patients a voice in rooms we don't always get invited into. Health technology assessment bodies, the ones who decide whether a new therapy gets funded, increasingly want to see real-world data, not just clinical trial results. Patient-reported outcomes are part of that story now, and registries are often the mechanism by which our lived experience actually reaches the desk of someone making a funding decision. That's not a small thing. That's the difference between a therapy being available to you when you need it, or not. There's also something deeply human about the act of contributing to a registry. When you enroll, you're not just handing over data points. You're saying: my experience matters, and it might help the next person who gets this diagnosis. I've spoken with patients who describe this as one of the only parts of a difficult journey that felt entirely within their control — a way to turn a diagnosis into something generative rather than only something endured. Grief and uncertainty don't disappear, but purpose can sit alongside them.

Of course, registries come with challenges. Building trust takes time, especially among communities with historical reasons to be wary of how their health information is used. Consent needs to be meaningful, not buried in fine print. Data needs to be protected rigorously and used transparently. Patients deserve to know not just that their information matters, but exactly how it's being used and who benefits. These aren't footnotes to the registry conversation — they're central to it. A registry patients don't trust will struggle to grow, and a small, distrusted dataset helps no one.

Why Patient Registries Matter in the Healthcare System cont’d The organizations doing this work well treat patients as partners in the process, not just sources of data. Advisory councils made up of patients themselves. They send regular updates on findings, written in plain language, back to the community that generated them. A genuine effort to close the loop, so that contributing to a registry doesn't feel like sending information into a void. If there's one thing worth carrying away from all this, it's that patient registries are, at their core, an act of collective care. They ask something small of each individual — a bit of time, a bit of trust — and return something far larger: better treatments, better guidelines, and a healthcare system that actually listens to the people living inside it. For anyone facing a blood disorder today, that collective memory being built, one patient at a time, may well be shaping the care available tomorrow.

Health Policy

Where Blood Disorder Decisions Get Made in Canada and How Patients Can Be in the Room If you ask the average Canadian how a new treatment gets to a hospital pharmacy, they will only shake their heads. Although the system isn't secret, it has several layers, and those layers rarely make themselves felt. For those who have a blood disorder, this lack of clarity is no mere abstraction; it can make the difference between a drug existing and one that you can actually obtain. How the pieces fit together Canada does not have a single health system; rather, it has thirteen provincial and territorial systems which are coordinated by the Canada Health Act. This act establishes the basic rules governing public funding for hospital and physician care. Ottawa provides funding and sets the principles, while the provinces run the system. In hematology, the decisions are made in the gaps. Because the Canada Health Act does not cover prescription drugs taken outside the hospital, each province creates its own formulary, and before a drug gets on that list, it usually has to pass several checks. Health Canada examines a product's safety and effectiveness and determines whether it can be marketed; this is a regulatory decision, not a coverage decision. The Canada Drug Agency (formerly CADTH) and Quebec's INESSS then evaluate whether the drug provides good value compared with other available treatments and recommend whether to publicly reimburse it. The pan-Canadian Pharmaceutical Alliance then negotiates the price on the provinces' behalf. Only after these steps does a province decide whether to include the drug on its list and under what conditions. For someone who has just been diagnosed with polycythemia vera, or for a parent of a child with sickle cell disease, this process can last for several years. A treatment approved in Toronto might not be funded in Halifax. A drug that is covered for one condition could be rejected for another. In this case, policy doesn't happen in Parliament; it appears on a pharmacist's screen.

Where Blood Disorder Decisions Get Made in Canada and How Patients Can Be in the Room cont’d Why hematology sits at a difficult corner of the system Blood disorders are usually rare, chronic, and costly to treat. Conditions such as myeloproliferative neoplasms, hemophilia, thalassemia, and aplastic anemia do not fill waiting rooms to the same extent as diabetes does. Because patient numbers are small, clinical trials are also small, so the evidence reviewers rely on is less substantial than they would prefer. The cost per patient can be extremely high. Health technology assessment was designed for common, well-studied conditions, and rare blood diseases continually challenge its assumptions. In cases like this, patient voices matter most. If the figures are unclear, the lived experience of the illness matters. What actual cost does fatigue caused by a condition that has not been treated have for a family? And what effect does having to receive a weekly infusion have on a person's ability to keep a job? Reviewers cannot obtain that information from a trial database.

Where patients can step in The good news is that the doors are open, even though they aren't very well marked. Both Canada's Drug Agency and INESSS consider formal patient input for each drug under review. Patient groups collect information through surveys and interviews, then produce a structured description of what it is like to live with the condition and how a new treatment would affect it. The committee then reads and cites the submissions in the final recommendations; in some cases, a well-prepared submission can change how a committee sees a disease.

Where Blood Disorder Decisions Get Made in Canada and How Patients Can Be in the Room cont’d What it takes Participating in health policy does not require a medical degree. It requires patience, some willingness to learn the vocabulary, and a clear sense of what you are asking for. The most effective patient advocates tend to share a few habits. They bring data alongside stories. They know the difference between a regulatory decision and a funding one, and they aim their efforts at the right table. They build relationships before they need them. The system wasn't designed with the patient in mind, but it has gradually been allowing space for them. For individuals with a blood disorder, that space is one they should take. The other option would be to let people who have never experienced the illness decide for themselves what is worth treating. Each province has its own consultation process, and in some cases ministries have set up patient and family advisory councils which give their views on general policy, not just on individual drugs. Hospital networks and cancer agencies have similar arrangements. Generally, you only need to apply to get a place. There is also more informal activity. This includes meeting an MPP or an MLA, writing to a health minister if a recommended drug reaches the provincial listing stage, and joining a national patient group so that, when consultations take place, an organized voice is available to respond. Nowadays, advocacy training programs such as CACH Education’s program are designed to help patients understand evidence, regulation, and reimbursement well enough to participate on an equal footing, rather than offering only anecdotal input.

The Bill Nobody Warns You About: Financial Toxicity in Blood Disease That is the line I hear more than any other from people living with a blood disorder. Not the fatigue, not the needles, not the long waits for a bone marrow biopsy result. The parking. Twenty-two dollars a visit, three visits a week during induction, and suddenly a family is doing math at the kitchen table that has nothing to do with medicine and everything to do with whether they can afford to keep showing up. We have a word for this now. Financial toxicity. It sounds clinical, and maybe it should, because it behaves like a side effect. It creeps in quietly, it compounds, and it can do as much damage to a person's well-being as the disease that caused it. Yet it rarely appears on a treatment consent form, and almost nobody screens for it.

What it actually looks like For most Canadians, the assumption is simple: we have public healthcare, so cancer and chronic illness are covered. And for the big pieces, that is largely true. The chemotherapy delivered in a hospital chair, the transfusions, the hospital bed. Those are paid for. But hematology has shifted. So many of the drugs that keep people with myeloproliferative neoplasms, myeloma, chronic leukemias and lymphomas alive today are pills taken at home. And a pill taken at home is, in most of this country, a different funding animal entirely. Depending on your province, your age, your employer and your luck, that same life-extending medication can be fully covered, partly covered after a hefty deductible, or not covered at all.

The Bill Nobody Warns You About: Financial Toxicity in Blood Disease cont’d Then there is everything around the drug. The travel to a specialized centre, because hematology expertise clusters in cities and not everyone lives in one. The hotel nights. The meals bought on the road. The supplements, the compression sleeves, the wig, the dental work a specialist requires before a transplant, but the plan will not touch. Each one is small. Together they are not. And underneath all of it sits the largest cost of all, which is income. People with blood disorders often cannot work through treatment, and many cannot return to the job they had before. Caregivers cut hours or leave work entirely. Employment Insurance sickness benefits help, but they run out, and they were never designed for a disease that can stretch across years or a lifetime. The part that hurts the most What makes financial toxicity so corrosive is that it hits when a person has the least capacity to fight it. You are exhausted. You are frightened. You are learning a new vocabulary of platelets, mutations, and blast counts. And now you are also on hold with an insurer, filling out a compassionate access form, or deciding which bill to pay late this month. Research in oncology has consistently shown that patients under financial strain are more likely to skip doses, stretch prescriptions, delay follow-up, and report worse quality of life. Some studies have linked severe financial distress to poorer survival. None of that should surprise anyone who has lived it. Stress is not free, and neither is rationing your own medicine. . 83

The Bill Nobody Warns You About: Financial Toxicity in Blood Disease cont’d

There is also a quieter cost. Shame. People who have worked their whole lives and never asked for help find themselves at a food bank or borrowing from adult children. They do not tell their care team, because the care team asked about nausea and not about the mortgage. So the problem stays invisible, and invisible problems do not get solved

Why hematology is different Cancer in general carries financial risk, but blood disorders carry a particular kind. Many of them are chronic. A person with polycythemia vera or essential thrombocythemia may live for decades on continuous therapy. Someone with hemophilia or sickle cell disease has been managing costs since childhood. This is not a sprint through six months of treatment and back to normal. It is a marathon with no finish line, and the costs run the whole route. Hematology is also a field of rapid innovation, which is wonderful and expensive in equal measure. Targeted therapies, bispecific antibodies, CAR-T. These are extraordinary advances. They also arrive with price tags in the hundreds of thousands, and with access rules that vary wildly from one postal code to the next. A patient in one province may be funded for a treatment that a patient two hours away, across a provincial border, must fight for.

The Bill Nobody Warns You About: Financial Toxicity in Blood Disease cont’d What we can do about it None of this is hopeless. It is just under-addressed. The first step is the simplest, and it belongs to clinicians. Ask. A single question at the start of treatment, something like "Are you worried about the cost of any of this?", opens a door that most patients will never open themselves. Financial toxicity screening tools exist and take minutes. They should be as routine as a weight check. The second step is navigation. Every hematology program should have someone whose job it is to know the drug access programs, the provincial exceptions, the charitable funds, the transportation subsidies and the disability tax credit. Social workers and patient navigators do heroic work here, and there are far too few of them. The third step is policy, and this is where patient advocates earn their keep. We need take-home cancer drugs treated the same as those delivered in hospital, everywhere in Canada, not just in the provinces that have already figured this out. We need sickness benefits that reflect the actual duration of serious illness. We need transparency about what a treatment will cost a family, not just what it will cost the system.

The kitchen table I keep coming back to that image. A couple sitting at their table, one of them sick, both of them scared, sorting receipts into piles. That is not a healthcare policy abstraction. That is what financial toxicity looks like on the ground, and it is happening tonight in homes across this country. Blood disorders ask enough of the people who carry them. They should not also demand a family's savings, a career or the dignity of being able to say yes to the treatment a doctor recommends. Getting well should not cost you everything else. If you are living this right now, please tell your care team. Tell them plainly. You are not asking for charity. You are asking for care, and the cost of care is part of care. It always has been. We are only now learning to say it out loud. 85

for more information how LCA can help you info@latinxcanceralliance.org

Advocacy & Empowerment

Sleep, Fatigue and Blood Cancer: Why Am I So Tired? By David Dubinski Founder & Chief Mission Officer, PatAdvHub

For adults receiving treatment for blood cancer Being tired can mean many things. You may fight to stay awake. You may feel drained but be unable to sleep. Or both may happen on the same day. You do not need to work out the cause on your own. Tell your cancer care team what you feel, when it happens, and what it keeps you from doing. Sleep and fatigue both deserve a place in your care plan. Which kind of tired do I feel? Sleepiness means you feel the urge to fall asleep. You may nod off while reading or watching TV. Too little sleep, broken sleep, some medicines, and sleep disorders can cause this. Fatigue means a lack of energy or deep exhaustion. Your body may feel heavy. A shower or a short walk may take great effort. Thinking clearly may be hard, too. Cancer-related fatigue can last even after rest or sleep.

These are clues to discuss, not a test. A good night does not rule out cancer-related fatigue. A bad night does not explain every new symptom. Sleep apnea means breathing stops and starts during sleep; it needs medical assessment. 88

Sleep, Fatigue and Blood Cancer: Why Am I So Tired? cont’d Do not drive when sleepy or too unwell to drive safely. Ask someone to help with rides. Follow any extra driving limits from your treatment team. Look for causes that can be treated Blood cancer and its treatment can affect energy in several ways. Multiple causes may be present. Your team may review your symptoms, medicines, sleep, and blood tests. Tests depend on your needs; no single test explains all fatigue. Low red blood cells can cause anemia. Red blood cells carry oxygen. Too few can leave you weak, dizzy, or short of breath. Other low blood counts matter, too: low white cells raise infection risk, while low platelets raise bleeding risk. These are different problems and may change what activity is safe. Cancer and treatment effects. Fatigue may change around treatment days. Steroids, such as dexamethasone or prednisone, may keep you awake. Some pain, nausea, allergy, or anxiety medicines may make you drowsy. Ask whether the schedule can be adjusted safely. Do not change doses, stop steroids, or move treatment times yourself. Symptoms that break up sleep. Pain, itching, night sweats, nausea, diarrhea, or trips to the bathroom may wake you. Tell the team which symptom wakes you and how often. Loud snoring, gasping, or an urge to move your legs at night also deserve attention. Food, fluids, strength, and mood. Eating too little, losing fluids, or losing strength during treatment can add to fatigue. Worry and low mood can affect energy and sleep. Your team may also check for other problems, such as thyroid, heart, lung, or kidney disease. Asking about these causes does not mean fatigue is “all in your head.” 89

Sleep, Fatigue and Blood Cancer: Why Am I So Tired? cont’d When to get help Call 911 for severe trouble breathing, chest pain, fainting, new confusion, or being very hard to wake. These symptoms need urgent assessment.

Call your cancer team's urgent number right away for a temperature of 100.4°F (38°C) or higher, or the lower threshold your team gave you. Also call for chills or other signs of infection, new bleeding, new shortness of breath, or a sudden major drop in energy. Follow your team's fever plan; do not take medicine to hide a fever before calling. After a transplant, CAR T-cell therapy, or similar treatment, follow your special symptom plan. Do not dismiss new symptoms as ordinary fatigue. If you cannot reach the team, seek urgent medical care. Tell the staff your cancer treatment and when you last received it. Report ongoing fatigue that limits eating, washing, walking, or other daily tasks. Do not wait to finish the seven-day tracker before asking for help. What can help? The goal is a plan that fits your treatment and the cause of your symptoms. You do not have to push through exhaustion or fix everything at once. Make sleep easier Keep a fairly steady wake-up time when you can. Make your room quiet, dark, and comfortable. Try a calm routine before bed. Limit caffeine later in the day, and do not use alcohol as a sleep aid. If you need a nap, keep it brief and take it earlier in the day. Tell your team if naps are long, frequent, or make it harder to sleep at night. Some treatment days call for more rest; ask what is right for you.

Sleep, Fatigue and Blood Cancer: Why Am I So Tired? cont’d Ask for treatment when sleep trouble lasts Ask about CBT-I: cognitive behavioural therapy for insomnia. This treatment helps change habits and worries that keep you awake. It is more than bedtime tips. A trained clinician can adapt it to your care, including treatment days and fall risk. It may be offered in person, by phone, or online. Do not cut your time in bed sharply or start a strict sleep program on your own during treatment. Ask for guidance, especially if you are very sleepy, weak, or unsteady. Treat fatigue as well as sleep Research supports exercise adapted to the person, cognitive behavioural therapy, and mindfulness programs for fatigue during cancer treatment. Gentle tai chi or qigong may also help. These approaches support care; they do not mean the fatigue is imaginary. Ask what movement is safe with your blood counts, balance, and bone health. A short, easy walk or seated movement may be a starting point if your team agrees. Low counts, infection, or myeloma bone damage may require changes. Ask about a physical therapist or cancer rehabilitation program. Stop and get advice if activity brings new symptoms. Save energy for what matters most. Break jobs into small steps, sit for tasks when possible, and accept help. Ask a dietitian for help if poor appetite or weight loss makes eating hard. Follow your own fluid plan, especially if you have heart or kidney problems. Check sleep aids and supplements first Before adding melatonin, an over-the-counter sleep aid, herbs, cannabis/CBD, or an “energy” product, ask your oncology pharmacist or care team. Products may interact with treatment or add to drowsiness. Some sleep medicines can help, but the choice and follow-up should fit your needs. Bring your concerns to your care team Use the separate My Sleep & Fatigue Tracker, or keep brief notes on sleep, symptoms, and treatment times. Bring the notes to your visit. Ask: What causes should we check? Could medicines play a part? Who will follow up, and when? Try saying: “I sleep about ___ hours, but my fatigue is ___ out of 10. It keeps me from ___. Can we make a plan?”

Resources and Tools

Click a resource title or its web address in the digital PDF. Each link goes to the named resource. Cancer Fatigue | National Cancer Institute Causes, assessment, and ways to manage fatigue. https://www.cancer.gov/about-cancer/treatment/side-effects/fatigue Sleep Problems in People with Cancer | National Cancer Institute. Sleep changes during treatment and questions to ask. https://www.cancer.gov/about-cancer/treatment/side-effects/sleep-problems Cancer-Related Fatigue | Blood Cancer United. A fact sheet for people living with blood cancer. https://bloodcancerunited.org/booklet/cancer-related-fatigue Managing Cancer-Related Fatigue | Memorial Sloan Kettering Cancer Center. Practical help with activity, rest, and saving energy. https://www.mskcc.org/cancer-care/patient-education/managing-related-fatigue Insomnia Treatment | National Heart, Lung, and Blood Institute. Learn about CBT-I and other treatment choices. https://www.nhlbi.nih.gov/health/insomnia/treatment Tiredness (fatigue) | Macmillan Cancer Support. Includes a link to the downloadable Your fatigue diary. https://www.macmillan.org.uk/cancer-information-and-support/impacts-ofcancer/tiredness Insomnia Coach | U.S. Department of Veterans Affairs Free public sleep app. Ask your team before using its sleep program. https://www.ptsd.va.gov/appvid/mobile/insomnia_coach.asp Mobile App: CBT-i Coach | U.S. Department of Veterans Affairs. A companion app to use with a CBT-I clinician. https://www.ptsd.va.gov/appvid/mobile/cbticoach_app_public.asp FACIT-Fatigue | FACIT A validated fatigue questionnaire; ask your team about its use. https://www.facit.org/measures/facit-fatigue Management of Fatigue in Adult Survivors of Cancer: ASCO-Society for Integrative Oncology Guideline Update | ASCO / Society for Integrative Oncology 2024 clinical guideline; includes active treatment. Technical reading. https://pubmed.ncbi.nlm.nih.gov/38754041/ PatAdvHub: . You deserve help with sleep and fatigue. General education. This article does not diagnose a condition or replace your care team's advice. Follow your personal treatment and emergency plans. https://patadvhub.org 92

My Sleep & Fatigue Tracker 7 days • Short notes are enough. Ask a caregiver to help if needed. Name: ______________________________ Week of: ______________ Team / urgent phone: ______________ Morning: record last night. Evening: record today. Sleepiness = urge to fall asleep. Fatigue = drained or exhausted. Fatigue 0-10: 0 = none; 10 = worst you can imagine. Sleep quality: good / fair / poor. Sleepiness: none / some / often nodding off.

My main problem: sleep at night / staying awake / low energy / more than one Worst time or trigger: ________________________ It keeps me from: __________________________________________ Ask: What causes should we check? Could medicines play a part? Do I need sleep care or help with activity? Plan / referral: __________________________________________ Follow-up date / contact: __________________________ 93

CACHEducation is evolving to better serve the needs of patient advocates and healthcare professionals with its rebrand to CACHEducation Academy. This transformation reflects an expanded commitment to delivering high-quality, structured learning experiences tailored to the ever-changing landscape of patient advocacy and healthcare education. As part of this rebrand, CACHEducation Academy will introduce Advanced Curriculum offerings starting in September 2025, providing deeper insights, specialized training, and enhanced skill development for those looking to elevate their expertise. This next phase marks a significant step forward in strengthening the capacity and impact of patient advocates through comprehensive and innovative education.

"Enrolling in CACHEducation was a game-changer for me as a patient advocate. The program provided invaluable knowledge, practical skills, and a supportive community that empowered me to make a real impact in healthcare advocacy."

Patient Advocacy Training contact: Info@CACHEducation.org

Practical Tools

To download the resources for your personal use, visit www.healcanada.org

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Have your voice heard! Visit the Heal Canada website and participate in our Various Surveys healcanada.org mybloodmyhealth.ca monsangmasante.ca

Openned Surveys: Blood Cancer Quality of Life (QoL) Impact of Blood Transfusion on QoL Myelofibrosis impact on QoL AML impact on QoL

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Clinical Trials

Clinical Trial Search - Canada Health Canada's Clinical Trials Database - Website Health Canada, through its Clinical Trials Database, provides the public with specific information about phase I, II, and III clinical trials involving patients. Health Canada manages the database and provides information on Canadian clinical trials involving human pharmaceutical and biological drugs. Access the Clinical Trials Database Patients can access the database to determine whether a clinical trial meets regulatory requirements. The database may also help Canadians find clinical trials relevant to their medical condition. The Clinical Trials Database is not a registry, and therefore, it does not contain comprehensive information about each clinical trial. To maximize the use of the database and available information, users are advised to link to external resources, including publicly available registries, to obtain further information such as trial objectives and patient eligibility. Note, however, that not all clinical trials are necessarily registered and thus found in these registries. Health Canada continues to encourage sponsors to register their clinical trials in publicly accessible registries such as ClinicalTrials.gov and ISRCTN. A Canadian-based registry for cancer trials is also available at Canadian Cancer Trials. Additionally, the World Health Organization (WHO) search portal provides access to a central database of trials registered in several international registries. Health Canada is the federal regulator responsible for authorizing the importation and sale of drugs for clinical trials. It fulfills this responsibility by reviewing clinical trial applications (CTAs) for phase I, II, and III trials filed by clinical trial sponsors. One objective of Health Canada's review is to ensure that trial subjects are not exposed to undue risk.

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Clinical Trial Search - Canada Every year, Health Canada authorizes approximately 900 clinical trials in patients. The database lists trials that were authorized by Health Canada starting April 1, 2013. The database will be populated with information about each clinical trial after Health Canada issues its No-Objection Letter (see terminology section for a definition). Thus, following the launch, the number of clinical trials available in the database is expected to be small, but the number will increase with time as the database is populated. Information Listed in the Database The database will provide the following information on clinical trials for which a CTA has been authorized: Protocol Number; Protocol Title; Drug Name; Medical Condition; Study population; Date of No Objection Letter; Sponsor Name; Control Number; Study Start Date; Study End Date; Trial Status. Health Canada's Clinical Trials Database is an essential resource for patients, healthcare providers, and researchers, providing regulatory insights into authorized clinical trials in Canada. While not a comprehensive registry, the database helps users identify trials that meet Health Canada’s safety and regulatory standards, providing trust and transparency for Canadians exploring participation in clinical research. By supplementing searches with additional global registries such as ClinicalTrials.gov, ISRCTN, and the Canadian Cancer Trials portal, individuals can gain a more complete understanding of trial options and eligibility. As the database continues to expand, it reinforces Health Canada's commitment to safeguarding patient well-being while promoting access to innovation and informed decision-making in clinical trial participation.

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Hematology Clinical Trials Currently Active in Canada Compiled from ClinicalTrials.gov listings. Recruitment status can change; always verify current status and eligibility directly on ClinicalTrials.gov or with the site before referring a patient.

Chronic Lymphocytic Leukemia (CLL) / Small Lymphocytic Lymphoma (SLL) CELESTIAL-RRCLL (NCT06943872): Sonrotoclax + obinutuzumab or sonrotoclax + rituximab vs. venetoclax + rituximab in relapsed/refractory CLL/SLL. Canadian sites: Calgary & Edmonton (AB), Vancouver (BC), Winnipeg (MB), St. John's (NL), Ottawa & Toronto (ON), Montreal & Quebec City (QC) Real-World Venetoclax in CLL (NCT03310190): Observational study describing management and healthcare resource use in CLL patients starting venetoclax in routine practice. Canadian sites (13): Calgary, Edmonton, Lethbridge (AB); Winnipeg (MB); Moncton (NB); Halifax (NS); Brampton, Sudbury, Kingston, Ottawa, Thunder Bay (ON); Montreal, Rimouski (QC) MK-1026-003 / Nemtabrutinib (NCT04728893) Phase 2 study of nemtabrutinib in hematologic malignancies including CLL/SLL, mantle cell lymphoma, follicular lymphoma, marginal zone lymphoma, Waldenström macroglobulinemia, and Richter's transformation. Canadian sites: Calgary (AB), Ottawa & Toronto (ON), Montreal x2 (QC)

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Hematology Clinical Trials Currently Active in Canada Multiple Myeloma Elranatamab Monotherapy (NCT03269136): Elranatamab (PF-06863135) alone and combined with immunomodulatory agents in relapsed/refractory multiple myeloma. Canadian sites: Calgary x2 (AB), Edmonton (AB), Toronto (ON), Montreal (QC) Arlocabtagene Autoleucel — BMS-986393 (NCT06121843) CAR-T therapy (arlo-cel) in novel combinations for relapsed/refractory multiple myeloma. Canadian sites: Calgary (AB), Toronto (ON) MMSET Inhibitor Study (NCT05651932): First-in-class MMSET (NSD2) inhibitor in relapsed/refractory multiple myeloma. Canadian site: Toronto (ON) — Princess Margaret Cancer Centre MagnetisMM-4 (NCT05090566) Umbrella study of elranatamab in combination with other anti-cancer treatments in multiple myeloma. Canadian sites: Calgary (AB), Ottawa & Toronto (ON)

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Hematology Clinical Trials Currently Active in Canada Acute Myeloid Leukemia (AML) Oral Venetoclax in AML — Canada (NCT05424562): Real-world study assessing disease state change in adults with AML ineligible for intensive chemotherapy, receiving oral venetoclax. Canadian sites (20): Calgary, Edmonton (AB); Surrey, Vancouver, Victoria (BC); Winnipeg (MB); Moncton (NB); St. John's (NL); Halifax (NS); Hamilton, Kingston, London, Oshawa, Thunder Bay, Toronto x2 (ON); Montreal, Sherbrooke (QC); Regina, Saskatoon (SK) MyeloMATCH Treatment Trial — Newly Diagnosed AML (NCT05554406) Testing new targeted therapies for newly diagnosed, untreated AML patients, matched by biomarker. Canadian sites: Calgary (AB), Edmonton (AB), Winnipeg (MB), Halifax (NS), Ottawa & Toronto (ON — Princess Margaret), Greenfield Park & Montreal x2 (QC) MyeloMATCH IDH2-Mutated AML (NCT06317649) Trial for newly diagnosed AML patients with a detectable IDH2 mutation, assigned via the MyeloMATCH biomarkermatching platform. Canadian trial chair: Dr. David Sanford, Vancouver Coastal (BC); enrolling through the pan-Canadian Canadian Cancer Trials Group network MyeloMATCH Master Screening Protocol (NCT05564390) Biomarker screening study for suspected AML or MDS patients to match them to an appropriate myeloMATCH treatment trial. Canadian trial chair: Dr. Aly Karsan, BC Cancer – Vancouver Cancer Centre (BC)

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Hematology Clinical Trials Currently Active in Canada Myelodysplastic Syndrome (MDS) Oral Azacitidine, Low/Intermediate-Risk MDS (NCT05469737) Oral azacitidine plus best supportive care vs. placebo plus best supportive care in IPSS-R low- or intermediaterisk MDS. Canadian sites: Toronto x2 (ON), Montreal (QC) Luspatercept for Anemia in Lower-Risk MDS (NCT02631070): Luspatercept (ACE-536) to treat anemia due to very low-, low-, or intermediate-risk MDS. Canadian sites: Calgary (AB), Hamilton (ON), Toronto x2 (ON — Sunnybrook & Princess Margaret) MDS Risk Assessment in NET Patients (NCT06510868) Observational study evaluating MDS risk in neuroendocrine tumour patients planned for peptide radionuclide therapy. Canadian site: Toronto (ON) — Princess Margaret Cancer Centre

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Hematology Clinical Trials Currently Active in Canada Myelofibrosis Twice-Daily Momelotinib (NCT01423058) Safety study of twice-daily momelotinib dosing in primary myelofibrosis, post-polycythemia vera, or post-essential thrombocythemia myelofibrosis. Canadian sites: Toronto (ON) — Princess Margaret Hospital; Montreal (QC) — Jewish General Hospital Extended Access Momelotinib Program (NCT03441113): Extended/expanded access to momelotinib for adults with myelofibrosis who have completed a prior momelotinib study. Canadian sites: Toronto (ON), Montreal x2 (QC)

Essential Thrombocythemia (ET) Ropeginterferon Alfa-2b-njft / P1101 (NCT05482971) A single-arm, multicenter study assessing the efficacy, safety, and tolerability of ropeginterferon alfa-2b (marketed as Besremi) in adult patients with essential thrombocythemia. Ropeginterferon is already Health Canada-approved for polycythemia vera; this study is evaluating its use in ET.

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Canadian sites (confirmed via Health Canada's Clinical Trials Search Portal): University of Calgary — Tom Baker Cancer Centre (Calgary, AB) St. Paul's Hospital — Providence Health Care (Vancouver, BC) Juravinski Cancer Centre (Hamilton, ON) Princess Margaret Hospital (Toronto, ON) Status: Active, not recruiting (as of mid-2026) — worth confirming directly in case new cohorts open, given the drug's approval trajectory. Sponsor: PharmaEssentia Corporation Shorespan-006 — Bomedemstat vs. Best Available Therapy (NCT06079879) Phase 3 trial of bomedemstat (an LSD1 inhibitor) vs. best available therapy in ET patients with inadequate response to or intolerance of hydroxyurea. Global trial (U.S., Europe, AsiaPacific) No Canadian site currently confirmed in available records, though this may change as enrollment continues. Worth checking directly with Merck/MSD Canada. Shorespan-007 — Bomedemstat vs. Hydroxyurea, Treatment-Naive ET (NCT06456346) Phase 3 trial comparing bomedemstat to hydroxyurea in patients with ET who have not yet received cytoreductive therapy. Global recruitment underway. No Canadian site is currently confirmed in available records.

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Hematology Clinical Trials Currently Active in Canada Polycythemia Vera (PV) VERIFY — Rusfertide (NCT05210790) Phase 3, randomized, placebo-controlled trial of rusfertide (a hepcidin-mimetic peptide, since approved by the FDA as Mimrylo) added to standard of care in phlebotomy-dependent PV patients. The trial met its primary endpoint (77% clinical response with rusfertide vs. 33% placebo), and rusfertide received FDA approval in August 2026. Canadian site confirmed: Princess Margaret Cancer Centre, Toronto, ON — hematologist Dr. Aniket Bankar served as a site investigator and has publicly discussed the trial's design and results. Status: The randomized, placebo-controlled portion is complete; patients are in the long-term open-label extension. New enrollment may be closed or limited at this stage — confirm directly. Sponsor: Protagonist Therapeutics / Takeda GIV-IN PV — Givinostat vs. Hydroxyurea (NCT06093672) Phase 3 trial of givinostat (an oral HDAC inhibitor) vs. hydroxyurea in JAK2V617F-positive, high-risk PV patients. Recruiting internationally at ~76 sites. No Canadian site currently confirmed in available records — the trial has sites in the U.S. and Europe. Worth checking directly with Italfarmaco given the size and pace of this trial.

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Hematology Clinical Trials Currently Active in Canada Sickle Cell Disease RUBY — EDIT-301 Gene Editing (NCT04853576): CRISPR-based gene-editing therapy (EDIT-301) for severe sickle cell disease. Canadian sites: Ottawa (ON), Toronto (ON — Princess Margaret Cancer Centre), Montreal (QC — CHU Sainte-Justine) Etavopivat for Sickle Cell Disease (NCT06612268) Oral pyruvate kinase activator etavopivat evaluated in people with sickle cell disease. Canadian sites: Calgary (AB), Edmonton x2 (AB), Vancouver x2 (BC), London & Scarborough & Toronto x2 (ON), Montreal x2 (QC) Matched Related Donor Transplant vs. Disease-Modifying Therapy — Pediatric SCD (NCT06941389): Comparing matched related donor hematopoietic stem cell transplant to disease-modifying therapy in children with sickle cell disease. Canadian sites: Calgary (AB), Vancouver (BC), Winnipeg (MB), Toronto (ON — SickKids), Montreal (QC — Ste-Justine)

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Hematology Clinical Trials Currently Active in Canada Broad Hematologic Malignancies Nemrutinib Hematologic Malignancies Basket Study — see #3 above (To round out the list with a distinct entry): Managed Access — Momelotinib in Myelofibrosis with Anemia (NCT05582083). Compassionate-use/managed access program for momelotinib in intermediate- or high-risk myelofibrosis (including post-PV/ET) with anemia, for patients who don't qualify for other trials. Available through participating Canadian hematology centres by physician request (managed access program, not a standard recruiting trial — confirm current availability with the sponsor). A note on using this list: Recruitment status on ClinicalTrials.gov changes frequently — trials close cohorts, open new sites, or pause enrollment. Before referring a patient or writing about a specific trial, verify the current status, full eligibility criteria, and contact information directly on the ClinicalTrials.gov record (search by NCT number) or through the hospital's clinical trials office.

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Hematolgy Advocacy Groups

List of Hematology Advocacy Groups- Canada National & Regional Hematology Advocacy Organizations Network of Rare Blood Disorder Organizations (NRBDO)

A pan-Canadian coalition representing patients with rare blood disorders such as hemophilia, thalassemia, aplastic anemia, and von Willebrand disease. NRBDO focuses on advocacy, healthcare access, and best practices in care delivery.

Canadian Hemophilia Society (CHS) Founded in 1953, CHS supports individuals with inherited bleeding disorders through education, research, and advocacy. It operates chapters in every province Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) Provides education, peer support, and research funding for Canadians living with aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH). Offers local support meetings and webinars. Leukemia & Lymphoma Society of Canada (LLSC) A national charity dedicated to curing leukemia, lymphoma, Hodgkin's disease, and myeloma. LLSC provides patient support services, education, and funds research across Canada. Lymphoma Canada Focuses on education, support, and advocacy for lymphoma patients. Offers virtual and in-person support groups across provinces, including Ontario.

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List of Hematology Advocacy Groups - Canada Myeloma Canada The only national organization exclusively focused on multiple myeloma. Provides educational resources, promotes clinical research, and advocates for patient access to new therapies. CLL Canada A national advocacy group supporting Canadians affected by Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL). Offers education and works to improve treatment access. Alpha-1 Canada Provides peer-to-peer support and disease management services for Canadians diagnosed with Alpha-1 Antitrypsin Deficiency. Engages in national and international advocacy efforts. aHUS Canada Advocates for individuals with atypical Hemolytic Uremic Syndrome (aHUS), focusing on education, support, and access to treatment. Canadian Hemochromatosis Society Founded by Marie Warder, this organization raises awareness and provides support for those affected by hereditary hemochromatosis. Offers educational materials and advocacy. The Canadian CML Network is a community of people living with Chronic Myeloid Leukemia. We are dedicated to providing emotional, social and educational support to people living with CML and their families.The Canadian CML Network works with patients and healthcare providers from all across Canada, and is focused on building CML patient groups nationally 121

List of Hematology Advocacy Groups - Canada

Canadian MPN Network Patient Advocacy Group A Formal Canadian network of patients and caregivers. Provides a platform for sharing best practices and connecting with local support groups.

Know your Blood A Formal Canadian organization dedicated to the Black/Caribbean community. Provides a platform for sharing and connecting for specific diseases to this community

Informal Groups (Facebook, other social media) CLL/SLL Information & Support (Canada) A Canadian community for individuals living with Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL), their families, and professionals. Members share experiences, ask questions, and offer mutual support. Facebook CML Friends of Canada A group for Canadians living with or supporting someone with Chronic Myeloid Leukemia (CML). It serves as a space for sharing experiences, information, and support among members. Lymphoma Canada – Facebook Page While not a group, Lymphoma Canada's Facebook page offers resources, updates, and information on virtual support groups, including monthly sessions co-hosted with Wellspring for lymphoma and CLL patients. Lymphoma Canada

If you would like your group listed here, please email us at admin@healcanada.org

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List of Hematology Advocacy Groups - USA Blood Cancer United (formerly)Leukemia & Lymphoma Society (LLS) LLS is the largest nonprofit dedicated to curing leukemia, lymphoma, Hodgkin's disease, and myeloma. It provides patient support, funds research, and advocates for policies to ensure access to quality, affordable care. National Bleeding Disorders Foundation (NBDF) Formerly the National Hemophilia Foundation, NBDF focuses on awareness, care, and treatment of inheritable blood and bleeding disorders like hemophilia and von Willebrand disease. International Myeloma Foundation (IMF) IMF is dedicated to improving the quality of life for myeloma patients through research, education, support, and advocacy. It offers resources for patients, caregivers, and healthcare professionals Leukemia Research Foundation This foundation's mission is to cure leukemia by funding research and supporting patients and families. It provides educational resources and financial assistance. Lymphoma Research Foundation As the nation's largest lymphoma-focused health organization, it is devoted to funding lymphoma research and providing patients with education and support services CancerCare CancerCare offers free, professional support services for people affected by cancer, including counselling, support groups, educational workshops, publications, and financial assistance.

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List of Hematology Advocacy Groups - USA National Marrow Donor Program (NMDP) NMDP manages the Be The Match Registry, facilitating bone marrow and umbilical cord blood transplants for patients with life-threatening blood cancers Aplastic Anemia and MDS International Foundation (AAMDSIF) AAMDSIF provides support and education for patients with aplastic anemia, myelodysplastic syndromes (MDS), and related bone marrow failure diseases. MDS Foundation The MDS Foundation offers support and resources for patients with myelodysplastic syndromes, including information on support groups and treatment options.

International Waldenstrom's Macroglobulinemia Foundation This foundation provides support and education for patients with Waldenström macroglobulinemia, a rare type of non-Hodgkin lymphoma, and funds research for improved treatments. Children's Cancer and Blood Foundation (CCBF) CCBF is the first and largest charitable organization in the U.S. dedicated to supporting the care of children with cancer and blood diseases MPN Advocacy & Education International This organization offers educational programs, patient and caregiver conferences, and resources tailored to MPN patients. They aim to empower patients through knowledge and support. MPN Education Foundation The foundation provides information and support for MPN patients, including the MPN-NET online support group, which facilitates discussions among patients, caregivers, and healthcare professionals.

If you would like your group listed here, please email us at admin@healcanada.org 124

List of Hematology Advocacy Groups - Global The Acute Leukemia Advocates Network (ALAN) A global patient advocacy organization dedicated to improving the lives of people affected by acute leukemias. By connecting patients, caregivers, and advocates, ALAN promotes awareness, facilitates access to information, and supports research to ensure patient voices shape leukemia care and policy worldwide. CML Advocates Network An informal global network moderated by Chronic Myeloid Leukemia (CML) patients and caregivers. Provides a platform for sharing best practices and connecting with national support groups. The Global MPN Scientific Foundation (Global MPNSF) A non-profit organization committed to improving the lives of individuals affected by myeloproliferative neoplasms (MPNs), a group of rare blood cancers. Through education, advocacy, and research support, Global MPNSF raises awareness, connects patients with specialists, and promotes advancements in treatment and care.

List of Hematology Advocacy Groups - Online

MPN-NET Online Support Group Hosted by the MPN Education Foundation, MPN-NET is an email-based discussion group where patients and caregivers share experiences, information, and support related to MPNs. Facebook Groups Several Facebook groups offer informal support for MPN patients: Myeloproliferative Neoplasms (MPN) Support Group: A global community where members discuss various MPN-related topics. Polycythemia Vera (PV) Support Group: Focused on individuals diagnosed with PV, sharing experiences and coping strategies. Essential Thrombocythemia (ET) Support Group: A space for those with ET to connect and support each other. Myelofibrosis (MF) Support Group: Dedicated to discussions around living with MF, treatments, and research updates.

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Alliances

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Alliances

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Supporters

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My Blood, My Health Team Cheryl Petruk, MBA B.Mgt. Cheryl A. Petruk is a multifaceted professional whose career spans across patient advocacy, business, and post-secondary education, showcasing her dedication to making a significant impact in each of these areas. Cheryl's transition into patient advocacy was driven by a passion from her family circumstances and a deep commitment to ensuring patients' rights and access to care. Cheryl has worked tirelessly to bridge the gap between the healthcare system, patients, and pharma stakeholders, ensuring that patients' voices are heard and their needs are met. Her work involves collaborating with Stakeholders and Patient Advocacy Organizations, lobbying for patient centricity, and providing patient support and guidance. Cheryl's empathetic approach and dedication to advocacy have made her a respected figure in this field, admired by patients, healthcare professionals, and fellow advocates. Cheryl also leads and is the lead faculty member at CACHEducation, Patient Advocacy Training. Cheryl is a certified greenbelt in VBHC, a certified Trainer in VBHC, and is a DBA Student

Heal Canada and its signature initiative, My Blood My Health, collaborate with a diverse array of consultants who bring specialized expertise to support our mission of advancing patient advocacy, education, and engagement in hematological health. These consultants include healthcare professionals, patient engagement strategists, medical writers, clinical research advisors, digital health experts, legal and regulatory specialists, and communications and media consultants. Each contributes uniquely—whether it's crafting patient-centered educational content, guiding ethical and regulatory compliance for clinical outreach, developing digital tools for patient engagement, or ensuring that advocacy messaging resonates across platforms. This multidisciplinary approach ensures our programs are informed, inclusive, and impactful, amplifying the patient voice while driving meaningful change in healthcare. 129

My Blood, My Health September 2026 | Issue 9 Blood Cancer Awareness Month

My Blood My Health Digital Magazine – Copyright Statement © 2025 My Blood My Health Digital Magazine. All rights reserved. This publication is intended for informational and educational purposes only. No portion of this magazine may be copied, republished, or shared without express written permission, except as allowed under fair use for non-commercial educational purposes. For inquiries or permissions, contact: admin@healcanada.org My Blood My Health is a patient-focused initiative of Heal Canada, dedicated to raising awareness of blood cancers and supporting the patient voice.

MBMH September 2026