Issuu

Heal Canada

ENGAGEMENT,EMPOWERMENT & EDUCATION

February 2024 Issue 2

Patient Support Programs My Blood My Health Emerging Treatments Mental Health Seniors' Health Patient Journeys Living Well

PLUS

Resources for Industry Stakeholders, Patients and Carepartners

TABLE OF CONTENTS

HEAL CANADA Founders Welcome

Embracing Bilingualism

The Importance of PSP's in a Healthcare Journey

Understanding Patient Support Programs

RWE Transforming Healthcare and Patient Support in Canada

12 Emerging Treatments

My Blood My Health

Mental Health Section

Seniors' Health

Patient Journey's

Advocacy Spotlight

Living Well

Ask the Expert

References

Patient-Reported Outcomes: 13 Enhancing Canadian Healthcare Through Real World Evidence and Support Programs

Diversity, Equity, and Inclusion in Patient Support Programs in Canadian Healthcare

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HEAL CANADA.ORG to download this current issue

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Founders Note Welcome to our Second Issue, of Heal Canada. A digital publication for Patient Advocates and Patient Centricity This edition delves into Patient Support Programs (PSPs) – a cornerstone in modern healthcare that significantly enhances patient outcomes.

PSPs are crucial in bridging the gap between patients and the often-complex healthcare systems. They offer personalized support, ensuring patients access the right treatments and the necessary guidance and emotional support throughout their healthcare journey. Understanding and participating in these programs can be transformative for patients. It empowers them with knowledge, resources, and a community that supports their unique needs. As we explore this theme, our goal is to illuminate the various aspects of PSPs and underscore their importance in patient care. We're deeply grateful to our readers for their continued interest and support. Your engagement is what drives us to bring insightful and valuable content in each issue. If you haven't already, we encourage you to subscribe and stay connected with Heal Canada Digital Magazine for future issues, where we'll continue to explore topics that matter to you and the healthcare community.

Heal Canada is a registered Not For Profit Organization in Canada.

Each Issue we will be adding new sections to be inclusive of entire Canadian Healthcare Ecosystem. This issue we are adding a Seniors Health section to address Advocacy Issues for this group! Thank you for being a part of our journey, and welcome to another enlightening 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.

www.healcanada.org

Cheryl Petruk, MBA, B.Mgt. Founder Heal Canada HEAL CANADA MAGAZINE |3

Heal Canada Embraces Bilingualism: Serving Canadians in Both Official Languages In a landmark move towards inclusivity and accessibility, Heal Canada proudly announces its transformation into a fully bilingual Not-for-Profit organization. This significant step is taken to serve Canadians in our official languages, English and French. With a commitment to embracing Canada’s cultural diversity, Heal Canada’s services, resources, and communications will now be available in English and French. This initiative will enable us to reach a wider audience, ensuring no language barrier hinders access to our valuable support and resources. “Our vision at Heal Canada has always been to create an inclusive environment where all Canadians feel supported and valued. By becoming a fully bilingual organization, we are better equipped to connect with and serve communities nationwide in their preferred language”. The transition to a bilingual framework includes our website, helplines, resource materials, and community programs. Our staff and volunteers have the necessary language skills to provide support and services in English and French. This change will strengthen our mission to provide compassionate and practical support to all Canadians. We invite you to explore our newly bilingual website and find the available resources in your preferred language. About Heal Canada: Heal Canada is a leading Not-for-Profit organization dedicated to providing support and resources for individuals and communities in need. With a focus on health, wellness, and community building, we strive to make a positive impact across Canada.

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Heal Canada would like to welcome Brigitte Leonard PHD, who has joined heal Canada as the Chief Scientific Officer. With an illustrious career spanning over two decades in healthcare and scientific research, Brigitte brings a wealth of knowledge and expertise to our organization. Brigitte Leonard holds a Ph.D. in biomedical science and has consistently demonstrated her commitment to advancing scientific innovation for healthcare. She has a proven track record of leading ground-breaking research initiatives in the Pharmaceutical industry. Her passion for improving patient outcomes and her dedication to scientific excellence align perfectly with Heal Canada’s mission. As our CSO, Brigitte will be pivotal in guiding Heal Canada’s research and development efforts. She will lead our My Blood My Health Program in providing new and innovative information on treatments and therapies to assist Patient Advocates in the healthcare landscape in Canada and beyond. Her strategic vision and leadership will drive our organization to new heights in Patient Advocacy information and Education. “We are thrilled to welcome Brigitte Leonard to the Heal Canada team, “Her exceptional leadership and scientific acumen will be invaluable as we continue to push the boundaries of medical research and bring transformative healthcare solutions to our communities.” Heal Canada remains committed to its mission of enhancing the health and well-being of Canadians through cutting-edge information dedicated to Patient Advocacy and Education and Information, and Brigitte Leonard’s appointment as CSO strengthens our dedication to this mission. Brigitte will sit on the Board of Directors of Heal Canada as part of her role. www.healcanada.org/blood-cancer-awareness - Heal Canada is also proud to support a similar initiative in the United States at: www.mybloodmyhealth.org.

About Heal Canada: Heal Canada is a leading Not-for-Profit organization dedicated to providing support and resources for individuals and communities in need. With a focus on health, wellness, and community building, we strive to make a positive impact across Canada.

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PATIENT SUPPORT PROGRAMS

The importance of PSP's in a healthcare journey

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PATIENT SUPPORT PROGRAMS by Brigitte Leonard, PHD & Cheryl Petruk, MBA

In the complex tapestry of Canada's healthcare system, Patient Support Programs (PSPs) have emerged as vital threads, providing comprehensive care beyond traditional medical treatments. These programs are increasingly recognized for their role in enhancing patient welfare and augmenting healthcare delivery. Impact on the patient and the caregivers PSPs in Canada are multifaceted services designed to assist patients in managing their health conditions more effectively. They range from educational initiatives, psychological support, and medication management to financial assistance programs. Integrated into the public and private healthcare sectors, these programs aim to provide a more holistic approach to health management. The most immediate beneficiaries of PSPs are the patients themselves. By offering emotional support, these programs address the psychological aspects of coping with illness, which are often overlooked in standard medical care. Assistance with medication management ensures that patients adhere to their treatment plans, a critical factor in chronic disease management. Additionally, PSPs often guide navigating the healthcare system and financial support, making healthcare more accessible and less burdensome. Impact on the Healthcare System Beyond individual benefits, PSPs contribute significantly to the broader healthcare system. By promoting effective disease management, these programs can reduce the incidence of hospital readmissions, a key indicator of healthcare efficiency. Improved patient outcomes and enhanced satisfaction with healthcare services are other notable impacts. Moreover, PSPs can be costeffective solutions, minimizing the long-term expenses associated with poor disease management. Consider the case of John, a diabetic patient from Toronto who benefited immensely from a PSP that provided dietary counseling and medication management. Or Sarah from Vancouver, whose battle with depression was alleviated through a PSP offering psychological support and therapy sessions. These stories underscore the tangible impacts of PSPs on individual lives. Challenges and Limitations Despite their benefits, PSPs in Canada face challenges. Issues like uneven accessibility, particularly in remote areas, and lack of awareness among patients hinder the reach of these programs. There's also variability in the quality and scope of PSPs, influenced by factors such as funding and policy differences across provinces. In Canada, the most important service offered by the PSP is the financial assistance, because reimbursement is a significant hurdle for patients and navigating the requirements can be very daunting for a patient who has just been diagnosed with a life threatening disease.

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PATIENT SUPPORT PROGRAMS CONT'D There are typically three levels of support or services offered by the PSP. PSP employees help patients at each step for private insurer submissions and battle in case of refusal if possible. Pharma organizations will sometimes offer bridging while negotiating with private insurance. Co-pay opportunities may exist. The Positive impact of PSP on a Patient’s Life and a Healthcare system Studies have shown that PSPs can positively impact patients' adherence to medication, satisfaction, or health-related quality of life. So these programs can improve long-term clinical outcomes, reducing resources and costs for the healthcare system. The Future of Patient Support Programs in Canada The future of PSPs in Canada looks promising, with trends pointing towards more personalized and technology-driven approaches. Telehealth and digital health tools are expected to play a significant role in expanding the reach and effectiveness of these programs.(IMC) With the modernization of the Canadian Healthcare system and the proper integration of Artificial Intelligence(AI) capabilities, healthcare practitioners (HCPs) will be able to support all patient needs more efficiently without having to rely on the private sector or Pharma Organizations. Patient support programs are more than just adjuncts to medical care; they are essential components that enrich the Canadian healthcare landscape. Their growing importance cannot be overstated, and it behooves healthcare stakeholders to invest and innovate in these programs, ensuring a healthier, more supported population.

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UNDERSTANDING PATIENT SUPPORT PROGRAMS: A SIMPLE GUIDE. NICOLE SERENA, PSP SOLUTIONS TM, A DIVISION OF WALDRON & ASSOCIATES

What Are Patient Support Programs? Patient Support Programs (PSPs) are unique services offered by companies that produce medications, called pharmaceutical Manufacturers. These programs aim to help patients needing extra care, particularly those requiring new, very specialized, or expensive medications. PSPs, therefore, offer various services that support patients by helping them overcome barriers to accessing medication. PSPs have existed in Canada for over 20 years and have become increasingly important in their ongoing role in assisting patients. Why Are They Confusing? The various functions and services PSPs offer can often be unclear to patients. Patients might wonder, "What is a PSP and how do I join one?" How can they help me with financing my medication, learning about my treatment, and other support?" By clarifying the role of PSPs, patients can feel confident in making decisions about their treatment plans and healthcare. What Does a PSP Do? A PSP offers many services that help both patients and their doctors. These services can include nursing support, guidance on paying for medicines, education about an illness and treatment plans, and more. Who Runs These Programs? In Canada, PSPs are usually run by third-party healthcare companies. Each program is designed based on the number of patients it supports, where they are located, and what it offers. Each PSP tends to focus on one specific disease or medication. What Services Do They Offer? PSPs offer many services, including: Helping with the cost of medicines. Guiding patients through getting their medicines paid for by insurance. Monitoring the patient's health with tests. Providing nursing and clinic services. Delivering medicines directly to where they are needed. Making sure the medicines are safe and work well. Teaching patients about their illness. Each patient may require different services based on their health needs and treatment plan.

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Understanding Patient Support Programs: A Simple Guide cont'd THE STEPS OF A PATIENT'S JOURNEY IN A PSP: 1. Doctor Visit and Diagnosis: The patient's journey begins when a patient is diagnosed, and their doctor suggests joining a PSP as part of their treatment plan. 2. Enrollment: The patient joins the PSP and learns about the services offered by the PSP. 3. Financial Help: The PSP helps the patient figure out how to pay for their medication. The patient may be placed on a First Dose or Bridging Program, where they are given free or subsidized medication for a short period so that they can begin their treatment while waiting for their financial assistance to be approved. 4. Pharmacy Coordination: The PSP arranges to get the medicine to the patient directly or to the clinic where the patient will be receiving their medication. 5. Appointments: The PSP schedules any appointments needed. At a minimum, patients can expect to be contacted anywhere from annually to quarterly, depending on the program. 6. Starting Treatment: The patient receives their medication and begins the treatment. 7. Ending the Program: The patient usually leaves the PSP when treatment is done. Some patients may be engaged in a PSP for months, while others may be engaged for many years and continue to cycle through various stages of the patient's journey. THREE EASY TIPS FOR USING PSPS: 1. Talk and Ask Questions: Be active in talking to the people in your PSP. Ask them anything that you are not sure about. 2. Know Your Rights: Understand how your personal health information is kept private in the PSP. The PSP stores all health records as per Canadian laws and regulations. 3. Handle Changes Smoothly: If your treatment or PSP changes, learn how to manage these changes and who to talk to for help. PSPs exist to make it easier for both patients and their doctors to access and use their medications. These programs guide patients through every step of their treatment and provide them with knowledge to support good healthcare decisions.

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Patient Advocacy Training contact: Info@CACHEducation.org

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Real-World Evidence: Transforming Healthcare and Patient Support in Canada by Cheryl Petruk, MBA

Canada's healthcare system stands at the forefront of integrating innovative approaches to enhance patient care and treatment outcomes. One such pivotal approach is the utilization of real-world evidence (RWE), a concept revolutionizing our understanding of how treatments work in everyday settings as opposed to controlled clinical trials. Particularly in the context of Patient Support Programs (PSPs), RWE is proving to be a game-changer in customizing and enhancing patient care.

PSPs are tailored services offered to patients, particularly those dealing with chronic illnesses or complex treatment regimens, to ensure they receive the best possible care and support. These programs often include medication management, education about diseases and treatments, and emotional support.

Real-World Evidence in Healthcare

Connecting RWE to Patient Support Programs

RWE refers to the data collected outside the conventional clinical trial settings, encompassing patient health status, treatment outcomes, and lifestyle data. Unlike data from randomized controlled trials, RWE offers insights into how treatments work in diverse, real-world populations, including various ages, ethnicities, and comorbidities. This evidence is crucial in understanding the long-term effectiveness and safety of treatments.

Integrating RWE into PSPs allows for a more tailored approach to patient care. By understanding how different patient groups respond to treatments in real-world settings, healthcare providers can customize PSPs to better meet the specific needs of each patient. For example, RWE can reveal that certain patient groups are more likely to experience specific side effects, leading to the development of targeted support strategies within PSPs.

Impact on Healthcare Policy and Decision-Making In Canada, RWE plays a significant role in shaping healthcare policies. It informs decision-makers about the real-world effectiveness of new treatments, influencing drug approvals and reimbursement decisions. For instance, RWE has been instrumental in demonstrating the effectiveness of new cancer drugs in a broader patient population, leading to their inclusion in public health plans.

Patient Support Programs in Canada

Several Canadian healthcare initiatives have successfully incorporated RWE into PSPs. One notable example includes the use of RWE in managing diabetes, where patient feedback and outcomes have directly influenced the structure and resources of diabetes-related PSPs. The integration of real-world evidence into the Canadian healthcare system, particularly in Patient Support Programs, marks a significant advancement in patient-centered care. As we continue to gather and analyze RWE, the potential to further refine and enhance healthcare delivery in Canada remains vast, promising even more personalized and effective patient support in the future.

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by Cheryl Petruk, MBA

Patient-Reported Outcomes: Enhancing Canadian Healthcare Through Real World Evidence and Support Programs by Cheryl Petruk, MBA

In Canadian healthcare, a paradigm shift towards patient-centered care is increasingly evident. This approach prioritizes understanding and responding to individual patient experiences and outcomes. Central to this transformation is the concept of Patient-Reported Outcomes (PROs). These are direct reports from patients about how they feel or function in relation to a health condition or its therapy. PROs offer invaluable insights into patients' perspectives on their health status and the effectiveness of treatments, thereby shaping a more responsive and tailored healthcare system. Understanding Patient-Reported Outcomes (PROs) Patient-reported outcomes (PROs) are diverse, encompassing symptoms, side effects of treatment, daily functioning, and overall health-related quality of life. Distinct from traditional clinical outcomes, which often focus on clinical or laboratory measurements, Patient-Reported Outcomes (PROs) provide a subjective view, reflecting the patient's health assessment. In Canada, various Patient-Reported Outcomes (PRO) measures are employed, ranging from general assessments like the EQ-5D (a standardized instrument for measuring generic health status) to disease-specific scales. These tools ensure that the patient's voice is integral in healthcare assessments and decision-making processes.

A patient-reported outcome (PRO) is “any report of the status of a patient's health condition that comes directly from the patient without interpretation of the patient's response by a clinician or anyone else” (FDA 2009). The Link Between PROs and Real World Evidence (RWE) PROs are a critical component of Real World Evidence (RWE) — health care information derived from multiple sources outside typical clinical research settings. This includes electronic health records, claims and billing activities, and product and disease registries. In the Canadian context, integrating Patient-Reported Outcomes (PRO) data into Real World Evidence (RWE) helps in capturing a more comprehensive understanding of treatment effectiveness and outcomes in real-world settings. Real World Evidence (RWE), enriched with PRO data, is increasingly informing healthcare policies and practices, offering insights into the effectiveness, safety, and value of treatments in the diverse and complex real world.

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Patient-Reported Outcomes: Enhancing Canadian Healthcare Through Real World Evidence and Support Programs cont'd Patient Support Programs (PSPs) in Canada Patient Support Programs (PSPs) in Canada leverage Patient-Reported Outcomes (PROs) to offer more personalized patient care. These programs provide support beyond medication, including educational resources, counseling, and financial assistance. By integrating Patient-Reported Outcomes (PROs), Patient Support Programs (PSPs) can tailor their services to patients’ specific needs and experiences, enhancing patient engagement and treatment adherence. The benefits of Patient Support Programs (PSPs) are manifold, improving patient outcomes while providing valuable insights for healthcare providers and contributing to the efficiency and effectiveness of the healthcare system. Integrating PROs, RWE, and PSPs for Enhanced Healthcare The synergy between Patient Support Programs (PSPs), Patient-Reported Outcomes (PROs), Real World Evidence (RWE), and Patient Support Programs (PSPs) is pivotal in advancing Canadian healthcare. This integration facilitates a more nuanced understanding of patient experiences and treatment outcomes, enabling personalized healthcare solutions. It also aids in identifying gaps in care and areas for improvement. By leveraging this integrated approach, healthcare providers can deliver care that is not only effective but also aligned with the patients' values and preferences, leading to better health outcomes and enhanced patient satisfaction. Case Studies and Success Stories In Canada, several case studies exemplify the successful integration of Patient Reported Outcomes (PROs),Real World Evidence (RWE), and Patient Support Programs (PSPs). For instance, IQVIA's Patient Support Programs have evolved to offer comprehensive services, utilizing Real World Evidence (RWE) and Patient Reported Outcomes (PRO) data to enhance patient care significantly. Furthermore, CADTH’s initiatives in leveraging RWE in decision-making, particularly in the context of rare diseases, highlight the potential of these integrations in improving patient outcomes and informing healthcare policies.

IQVIA's Patient Support Programs (PSPs): Introduced in Canada over two decades ago, IQVIA's PSPs have evolved significantly. Initially, they provided drug bridging and financial support but have expanded to offer a more comprehensive range of services, including infusions, injection support, life coaching, and access to allied health professionals. These Patient Support Programs (PSPs) play a crucial role in enhancing patient care as they begin their treatment journey. The key to their success has been the generation and utilization of Real World Evidence (RWE). Patient Support Programs (PSPs) collect extensive patient-level data, which includes patient characteristics, drug utilization, and certain clinical outcomes. This data, when used with appropriate consent and scientific rigor, provides robust Real World Evidence (RWE) insights in a cost-effective and timely manner. This approach has significantly enhanced the understanding of real-world effectiveness and safety of therapies, helping to define the drug's value more clearly.

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Patient-Reported Outcomes: Enhancing Canadian Healthcare Through Real World Evidence and Support Programs cont'd CADTH's Real-World Evidence (RWE) Initiatives: The Canadian Agency for Drugs and Technologies in Health (CADTH) has made significant strides in integrating RWE into healthcare decision-making. CADTH partnered with Health Canada and other health system stakeholders to advance the integration of Real World Evidence (RWE) into decision-making. This includes developing a strategic framework and guiding principles for the transparent reporting of Real World Evidence (RWE) studies. One notable aspect of their work is the focus on drugs for rare diseases. CADTH recognized the need to develop knowledge, capabilities, and competencies related to RWE to meet this challenge. They initiated a learning period to optimize the use of Real World Evidence (RWE) in informing decision-making for drugs for rare diseases. This effort led to the development of four pillars necessary for the optimal integration of RWE into decision-making processes, including multistakeholder engagement, real-world data generation, collaborative partnerships, and guidance for Real World Evidence(RWE).

These case studies highlight how the combination of Patient Support Programs (PSPs), Patient-Reported Outcomes (PROs), Real World Evidence (RWE), and Patient Support Programs (PSPs) can lead to more personalized and effective patient care, better health outcomes, and more efficient healthcare delivery in Canada. The importance of all of this data in the Canadian healthcare system, is about the synergistic relationship between Patient Reported Outcomes, Real World Evidence, and Patient Support Programs, and how this integration is vital for advancing patient-centered care in Canada. The integration of Patient Support Programs (PSPs), Patient-Reported Outcomes (PROs), Real World Evidence (RWE), and Patient Support Programs (PSPs) represents a significant stride towards a more patient-centered healthcare system in Canada. This approach not only respects the individual experiences of patients but also harnesses their insights to improve healthcare delivery and outcomes. The future of Canadian healthcare seems promising, with this synergistic integration paving the way for advancements in patient care and the creation of a health system that truly understands and responds to the needs of its patients.

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DIVERSITY, EQUITY, AND INCLUSION IN PATIENT SUPPORT PROGRAMS IN CANADIAN HEALTHCARE by Cheryl Petruk, MBA

The Canadian healthcare system, acclaimed for its universal coverage, is a model of accessibility in providing medical services to citizens and permanent residents. However, this system-wide inclusivity masks the underlying disparities in patient support programs. The imperative to weave diversity, equity, and inclusion (DEI) into these programs is underscored by the social determinants of health, which significantly impact how individuals experience and access healthcare.

What does DEI mean in healthcare? Diversity, equity, and inclusion, collectively known by the acronym DEI, is a set of policies or practices that promote the full participation and fair treatment of all people, including populations that historically have been underrepresented or subject to discrimination. Understanding Diversity, Equity, and Inclusion Diversity, equity, and inclusion are foundational pillars for equitable healthcare. Diversity is acknowledging and appreciating differences across various dimensions, including race, gender, ethnicity, age, disability, and sexual orientation. Equity involves ensuring fairness and impartiality in access to healthcare resources. Inclusion, meanwhile, seeks to create an environment where diverse individuals can contribute and participate fully. Canadian Healthcare and Social Determinants of Health While Canada's healthcare system, under the Canada Health Act, is designed to provide necessary health services based on need rather than ability to pay, it often falls short due to the impact of social determinants of health. These determinants, including socioeconomic status, education, neighborhood and physical environment, employment, social support networks, and access to healthcare, play a significant role in shaping health outcomes. Challenges in Patient Support Programs Patient support programs in Canada are not immune to these challenges. Populations such as Indigenous communities, immigrants, refugees, LGBTQ+ individuals, and those with disabilities face barriers like language differences, cultural disconnects, and historic distrust in the healthcare system. These challenges are compounded by the social determinants of health, leading to unequal access and outcomes.

THE ROLE OF DEI IN ADDRESSING SOCIAL DETERMINANTS OF HEALTH The social determinants of health are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and qualityof-life outcomes and risks. These conditions are shaped by the distribution of money, power, and resources at global, national, and local levels, which are themselves influenced by policy choices. Social determinants of health include factors like: Economic Stability: Employment, income, expenses, debt, medical bills, and support. Education: Early childhood education and development, enrollment in higher education, vocational training, and literacy. Health Care Access and Quality: Health coverage, provider availability, provider linguistic and cultural competency, and quality of care. Neighborhood and Built Environment: Housing, transportation, safety, parks, playgrounds, walkability, and zip code/geography. HEAL CANADA MAGAZINE |17

Diversity, Equity, and Inclusion in Patient Support Programs in Canadian Healthcare cont'd Social and Community Context: Social integration, support systems, community engagement, discrimination, and stress. These factors interact with each other and can contribute to wide health disparities and inequities among populations. Addressing social determinants is crucial for improving health outcomes and reducing long-term health disparities. Public health efforts aim to enhance these determinants through policies and programs that promote fair access to health care, nutritious food, safe environments, and educational opportunities.

Enhanced Access and Outcomes: DEI principles help navigate the complex interplay of social determinants of health by ensuring that patient support programs are accessible and relevant to diverse populations. Cultural Competence and Sensitivity: Healthcare providers trained in cultural competence can better understand and respect different health beliefs and practices, leading to improved patient-provider relationships and outcomes.

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

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Diversity, Equity, and Inclusion in Patient Support Programs in Canadian Healthcare cont'd Tailored Care: Personalized care, sensitive to an individual’s background, can more effectively address the specific health needs that arise from their social and environmental context. Trust Building: Marginalized communities often have justified skepticism towards healthcare systems. DEI initiatives can bridge this gap, demonstrating a commitment to addressing past injustices and current disparities. Informed Policy Development: DEI should guide healthcare policy, ensuring that new initiatives do not overlook or disadvantage certain groups, especially considering the diverse social determinants of health.

Implementing DEI in Patient Support Programs Effective DEI implementation in patient support programs requires a multifaceted strategy: Training and Education: Healthcare workers need training in understanding the social determinants of health, cultural competency, and implicit bias. Community Engagement: Collaborating with communities to understand their unique needs, influenced by social determinants, leads to more effective and tailored support programs. Data-Driven Approaches: Collecting and analyzing data, including social determinants, helps identify and address disparities in healthcare access and outcomes. Policy Advocacy: Advocacy should focus on policies that promote equity and address systemic barriers, considering the full range of social determinants. Inclusive Leadership: Leaders in healthcare organizations should reflect the diversity of their communities and be committed to understanding and addressing the social determinants of health. Integrating diversity, equity, and inclusion in patient support programs, with a keen understanding of the social determinants of health, is critical for the Canadian healthcare system to serve its populace effectively. It's about providing the right support, tailored to the diverse needs influenced by these determinants, ensuring equitable access and outcomes for all. As Canada's demographic landscape evolves, its healthcare system must adapt, ensuring that patient support programs are as inclusive, equitable, and diverse as the population it serves.

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Emerging Treatments Brigitte Leonard, PhD. Chief Scientific Officer, Heal Canada In the rapidly evolving landscape of medical science, emerging treatments stand at the forefront of innovation and hope. It is always interesting to explore novel approaches and groundbreaking therapies that are transforming the way we tackle some of the most challenging health conditions. However, it is ten time more exciting to learn that they are available right now for you or your loved one. As the Chief Scientific Officer at Heal Canada, I am thrilled to bring to our readers the latest advancements that are accessible to Canadians. In this section of the Heal Canada digital magazine, the future is now. We will review all recent products approved by Health Canada. Also, we will provides insights how these new treatments improve the management of challenging health conditions and the quality of life for patients.

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Health Canada 2023 Approval Overview In this year's first edition, let’s acknowledge all patient communities’ gains reached in 2023. The Health Canada database shows that the agency received 91 new drug submissions during the last two years. In 2023, 33 products received marketing authorization for nine disease categories (Fig1).

1. Infectious disease The COVID-19 pandemic continued to impact the healthcare system, so, unsurprisingly, 21% of the approved products addressed infectious diseases with five new vaccines (active immunizing agents), one passive immunizing agent (antibody) and one antiviral treatment (Table 1).

Sixty percent of new vaccines target COVID-19: Nuvaxovid XBB.1.5, Comirnaty Omicron XBB.1.5 Spikevax XBB.1.5. HEAL CANADA MAGAZINE |21

During the pandemic, non-pharmaceutical interventions (NPIs) (confinement, masking, social distancing) have affected the transmission of all viruses, reducing community immunity levels. The situation with the Respiratory Syncytial Virus is particularly problematic. This virus is the primary cause of lower respiratory tract infections, contributing to infant and older adults' hospitalization(2). Arexvy, a vaccine developed by GSK, is now available to prevent lower respiratory tract disease in the elderly. Also, Beyfortus, an antibody allowing passive immunity developed by AstraZeneca, is available for neonatal infants, and children younger than two years with specific conditions. People have access to a new vaccine, Vaxchora. Taken ten days before the travel, it reduces the chance of moderate and severe diarrhea by 90%. Despite eradicating smallpox, the deadliest disease in history since the 1970s, concerns persist that the variola virus could reappear. To prevent catastrophic pandemics, governments have access to vaccines and treatments such as Tembexa for treating smallpox in adult and pediatric patients. 2. Cancer Statistics Canada estimated that about 2 in 5 Canadians will develop cancer in their lifetime, and about 1 in 4 Canadians will die (3). Access to new medication is crucial, and cancer treatment represents the second category, with 15% of products approved in 2023. Most products target progressive blood cancers (Table 2).

Asplarlas is used with chemotherapy to treat the most common type of leukemia in children: acute lymphoblastic leukemia (ALL). Asparlas is a long-acting enzyme that breaks down L-asparagine, lowering its levels in the blood. Cancer cells cannot produce L-asparagine, unlike normal cells, impacting their growing capabilities. Columvi and Epkinly are bispecific antibodies used to treat aggressive forms of lymphoma after other treatment failures. Unlike chemotherapy or cell therapy, these bispecific antibodies help immune system cells recognize and destroy cancer cells. Patients with aggressive lymphoma who failed several treatments have an expected one-year survival rate of 41% (5). Columvi and Epkinly were approved based on positive studies. In the EPCORE NHL-1 study, Epkinly induced an overall and complete response in 61% and 38% of patients. The overall duration of response is 15.6 months. In the NP30179 study, Columvi induced an overall and complete response in 56% and 43% of patients. The overall duration of response is 18.4 months. HEAL CANADA MAGAZINE |22

Tecvayli is another bispecific antibody treating multiple myeloma after other treatment failures. Over the last 20 years, breakthrough therapies for treating multiple myeloma have been developed. However, patients with numerous resistances can have as low as six months of life expectancy (6). This approval is based on the positive results observed in a clinical trial (MonumenTAL-1) with a 73% overall response rate and a one-year survival without disease progression reaching 54.4%. Imjudo, an antibody, was approved as a first-line treatment for unresectable liver cancer in combination with Imfinzi. The approval was based on positive results from the HIMALAYA Phase III trial. In this trial, patients treated with the combination of IMJUDO and IMFINZI experienced a 22% reduction in the risk of death versus the standard of care (7). Non-cancer rare disorders Consolidated efforts of international organizations with increased genetic testing capabilities allowed a better understanding and awareness of rare diseases. This knowledge is now translating to new treatment options developed by Pharma. Thanks to patient associations such as CORD and RQMO advocating for many years, it is now recognized that one out of twelve Canadians has a rare disease. Canadian policies have been implemented in 2023 to improve access to diagnosis and treatments (4). As a result of these joint efforts, the agency approved eleven products (33%) targeting rare and ultra-rare disorders (Table 3). Each product will be reviewed in its respective disease category.

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3. Nervous system diseases Five products have been approved by Health Canada in 2023, targeting nervous system diseases (Table 5).

Epilepsy is a chronic neurological condition characterized by recurrent, unprovoked seizures. More than one-third of patients with epilepsies are refractory to current anti-seizure medications. Uncontrolled epilepsy is associated with ten-to-fifteen-fold more frequent mortality (8). Xcopri is a novel small molecule with a dual mechanism of action that showed potential for a high degree of efficacy in reducing seizures with an unprecedented seizure-free rate of up to 28% in this challenging patient population (9). Parkinson's disease is a progressive condition when the brain cells responsible for controlling voluntary or autonomous movements become damaged or die. In advanced stages, controlling symptoms becomes more challenging with currently approved medication. Vyalev combines two medicinal ingredients that significantly improve the day's activity level. Insomnia is an increasingly common sleep disorder, and 10% of people have symptoms that meet DSM-5 criteria. Sleep hygiene and behavioural strategies can sometimes be insufficient. Health Canada approved Quviviq, a medication blocking molecules promoting wakefulness, allowing one to fall asleep without altering the proportion of sleep stages. The effect of Quviviq on insomnia showed a significant improvement versus placebo on objective and subjective sleep variables. Familial amyloid polyneuropathy is a neurodegenerative disease characterized by pain, abnormal skin sensation, muscular weakness, and dysfunction of the autonomic nervous system (heart, bladder, intestine, …). These symptoms typically appear in adulthood, and the overall survival after the diagnosis is less than five years (10). A mutation in the gene producing the transthyretin protein is responsible for its misfolding, causing amyloid depositions and clusters in the body's nerves and organs (11). Amvuttra prevents the production of transthyretin, reducing the protein deposition in tissues (12). Amvuttra demonstrates its efficacy in one study (HELIOS-A) where patients who received the treatment improved on many tests assessing motor, sensory and autonomic capabilities versus the placebo group. Generalized myasthenia gravis is an autoimmune disease affecting the communication between the nervous system and muscles, causing weakness in voluntary muscles essential for breathing, swallowing and movements. Vyvgart was approved as the treatment for this disorder following a phase III study analysis demonstrating that 68% of patients improved their condition versus 30% for the placebo group. HEAL CANADA MAGAZINE |24

4. Blood disorders: Four products targeting blood disorders have been approved by Health Canada in 2023 (Table 5).

Platelets (thrombocytes) play a crucial role in blood clotting. Low levels of platelets can be observed in some diseases, such as immune thrombocytopenia (ITP) and chronic liver diseases. Doptelet is a molecule that increases platelet production. The approval was based on results from several clinical trials. In the ITP population, Doptelet was superior to placebo in maintaining platelet counts in the target range. In ADAPT-1 and ADAPT-2 studies, the proportion of patients requiring a platelet transfusion or any rescue procedure for bleeding was significantly lower in the two treated groups.

Hemophilia is another blood clotting disorder where patients have low levels of specific proteins (Factor VIII or Factor IX) in the blood involved in the clotting process. The deficiency of Factor VIII causes Hemophilia A, and the deficiency of Factor IX causes Hemophilia B. Alhemo is an antibody that inhibits a protein (TFPI) that prevents clotting in hemophilia A or B patients. In the EXPLORER-7 study, spontaneous and traumatic bleeds were reduced by 86% with a preventive treatment with Alhemo compared to the on-demand treatment group. Also, the estimated annual bleeding rate was lower at 1.7 versus 11.8 for the on-demand group. Later in October, Health Canada authorized Hemgenix, a gene therapy, for treating adults with hemophilia B who require routine prophylaxis to prevent or reduce the frequency of bleeding episodes. The approval is based on results from the HOPE-B trial, where 96% of patients discontinued prophylaxis and remained free of previous continuous routine prophylaxis therapy. Some patients need blood thinners (Factor Xa inhibitors) to prevent blood vessel clots. Ondexxya is an injection that rapidly reverses the effects of blood thinners in case of a life-threatening or uncontrolled bleed.

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5. Endocrine diseases Three products have been approved by Health Canada in 2023 targeting Endocrine disorders (Table 6).

Uterine fibroids and endometriosis are associated with pain, heavy menstrual bleeding, and anemia. They are mainly underdiagnosed due to several reasons, including the false notion that these symptoms are typical. Myfembree, approved to manage heavy menstrual bleeding associated with uterine fibroids and moderate to severe pain associated with endometriosis, is composed of 3 drugs: Relugolix, estradiol and norethindrone. Two studies reviewed by the agency, where Myfembree treatment demonstrated a significant reduction of blood loss and pain compared to placebo, as well as an improvement of anemia. Growth failure due to growth hormone deficiency (GHD) is a rare disorder affecting ~ 1600 children in Canada. Without growth hormone replacement therapy, children will have persistent growth attenuation and a short height in adulthood. Available since 2013, somatropin, a form of human growth hormone, necessitates a daily injection. Daily injection can impact long-term adherence to a treatment in chronic diseases. Sogroya is a long-acting formulation of human growth hormone, allowing a weekly injection with a growth velocity like the daily treatment. Some rare genetic disorders lead to severe obesity by disrupting the hunger pathway such as BardetBiedl syndrome, POMC, PCSK1 or LEPR deficiency. Like obesity in the general population, these patients are susceptible to the same serious consequences at a very young age. Imcivree is a hormone analog approved for weight management in patients with these disorders by demonstrating that 36% to 86% achieved a ≥10% weight loss.

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6. Heart, vascular and metabolic diseases Three products have been approved by Health Canada in 2023 targeting heart, vascular or metabolic diseases (Table 7).

SIBBORAN is indicated for the short-term reduction of ventricular rate in patients with supraventricular tachycardia including atrial fibrillation and atrial flutter in perioperative, postoperative, or other acute circumstances where short-term control of the ventricular rate with a short acting agent is desirable. Many patients with chronic heart failure, even when taking guideline-based therapy, will experience progressive worsening of symptoms. In conjunction with existing approaches, Verquvo restores a deficient pathway, which plays a critical role in the progression of heart failure. In combination with standard-of-care therapy, VERQUVO has demonstrated a reduced risk of rehospitalization and decompensation events in the VICTORIA study. Homozygous Familial Hypercholesterolemia is a rare genetic disorder characterized by a high level of low-density lipoprotein cholesterol (LDL-C) and heart disease in the 1st decade of life, sometimes as early as 2 or 3 years old. A maximum of 100 individuals should be affected by the disorder in Canada. Survival improved over the years when diagnosed. Combined with a low-fat diet and other lower cholesterol agents, Evkeeza reduces the LDL-C levels by blocking a protein that stops the body from removing it. Three studies have been included in the analysis, and the LDL-C reduction rate is generally around 50%. 7. Inflammatory disease Two products have been approved by Health Canada in 2023 in this category (table 8).

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Ulcerative colitis is an inflammatory bowel disease that causes inflammation and ulcers in the digestive tract. This disease can lead to life-threatening complications. Omvoh has demonstrated efficacy in managing several aspects of ulcerative colitis, even in patients who failed conventional immunosuppressives, biologic therapies, and/or tofacitinib. Unlike plaque psoriasis, generalized Pustular Psoriasis (GPP) is a group of rare and severe skin diseases. If untreated, potentially serious complications such as sepsis and cardiovascular failure can occur (13). Spevigo is an antibody that specifically blocks the activation of a receptor involved in the pathogenesis of GPP. In the EFFISAYIL®-1 study, over half of the SPEVIGO® -treated patients were free of pustules one week after receiving a single dose. 8. Rare genetic liver diseases Bylvay and Livmarli have been approved for treating life-threatening rare genetic cholestasis diseases: Progressive Familial Intrahepatic Cholestasis and Alagille Syndrome.

Progressive familial intrahepatic cholestasis (PFIC) is a group of diseases diagnosed in infants caused by defects in bile acid transportation leading to liver failure. Native liver survival is better when the serum bile acid levels are lower. Bylvay can significantly reduce bile acid in a patient’s blood. This treatment might be able to prolong native liver survival while improving some of the complications related to this fatal condition. Alagille syndrome is another group of liver diseases diagnosed in infants caused by a progressive loss of the bile duct, leading to liver failure due to an accumulation of bile in the organ. Livmarli has been able to reduce bile acid significantly versus placebo, as well as improving some of the complications related to this fatal condition.

9. Skin Diseases Two dermatological products have been approved (Table 10). WINLEVI is indicated for the topical treatment of acne vulgaris in patients 12 years of age and older. ONAKTA is indicated for the topical treatment of non-hyperkeratotic, non-hypertrophic actinic keratosis (AK) (Olsen grade 1) on the face or scalp in adults.

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CONTACT HEAL CANADA TO ASSIST YOUR ORGANIZATION IN HELPING GROW AWARENESS AND RAISE VALUABLE DOLLARS FOR YOUR MISSION ADMIN@HEALCANADA.ORG

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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 neighboring 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.

email: patadvhub@gmail.com

www.patadvhub.org

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mybloodmyhealth.ca

monsangmasante.ca encouraging Canadians to get their blood checked yearly

My Blood My health is a awareness campaign encouraging Canadian's to look after their blood health at their yearly check up.

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United States Of America My Blood My Health.org My Blood My Health.us encouraging Americans to get their blood checked yearly

My Blood My health is a awareness campaign encouraging American's to look after their blood health at their yearly check up. This program will be administered by PAT ADV HUB. HEAL CANADA MAGAZINE |32

Canadian MPN Network Patient Advocacy and Education Group

Providing MPN Patients Support and Education

Info@canadianmpnnetwork.ca

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THE LIFESAVING IMPORTANCE OF ANNUAL BLOOD CHECKS FOR CANADIANS INTRODUCTION BY CHERYL PETRUK, MBA

In today's fast-paced world, prioritizing health often takes a backseat. However, one simple, yet crucial step Canadians can integrate into their annual health routine is a blood test. This seemingly minor procedure plays a significant role in preventive health care, offering a window into the body's complex workings and an opportunity for early detection of potential health issues. Understanding Blood Tests A blood test is a routine procedure in which a healthcare professional draws a small amount of blood, usually from a vein in your arm. This sample is then analyzed in a lab. Blood tests can provide a wealth of information about your bodily functions and are used to detect diseases and conditions such as anemia, diabetes, heart disease, and more. Early Detection and Prevention One of the primary benefits of annual blood tests is the early detection of diseases. Many serious health conditions, such as high cholesterol, diabetes, and kidney issues, often show no symptoms in their early stages but can be detected through blood work. Early detection means early intervention, which can significantly improve outcomes. Monitoring Health Conditions For those already managing chronic conditions like hypertension or thyroid disorders, annual blood checks are vital to monitor the effectiveness of treatments. Adjustments in medication or lifestyle can be made based on these results, ensuring optimal management of the condition. Nutritional Insights Blood tests can reveal deficiencies in essential nutrients such as iron, vitamin D, and B12. Canadians, especially those living in regions with limited sunlight, may be at risk of Vitamin D deficiency, which is crucial for bone health. Identifying these deficiencies early can lead to dietary adjustments or supplementation to improve overall health.

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The Lifesaving Importance of Annual Blood Checks for Canadians Introduction cont'd Encouraging a Proactive Health Mindset Regular blood testing encourages a proactive approach to health. It fosters a better understanding of one’s body and promotes responsibility for one’s health. This proactive stance can lead to healthier lifestyle choices, such as improved diet and exercise, further preventing health issues. Accessibility and Healthcare System Efficiency In Canada, the accessibility of healthcare services, including blood testing, is a significant advantage. Regular blood tests can reduce the long-term burden on the healthcare system by preventing diseases that are costly to treat and manage. Annual blood tests are a simple yet powerful tool in maintaining good health. They provide crucial insights into your health, allowing for early detection and prevention of diseases, monitoring existing conditions, and promoting a proactive health mindset. As Canadians, taking advantage of this accessible health resource can lead to longer, healthier lives. Remember, prevention is always better than cure, and a yearly blood check can be your first step towards a proactive health journey.

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Watch our website for the My Blood My Health digital publication

mybloodmyhealth.ca

monsangmasante.ca HEAL CANADA MAGAZINE | 37

Have your voice heard! Visit the My Blood My Health website and participate in our Quality of Life Survey mybloodmyhealth.ca

monsangmasante.ca

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www.cllcanada.org

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Welcome to the Mental Health section of Heal Canada Digital Magazine, a dedicated space where we embrace the journey towards mental wellness with open arms and open hearts. In this edition, we delve into the empowering world of patient advocacy, engagement, empowerment, and education. Our focus is to illuminate the pathways through which individuals grappling with mental health challenges can not only find their voice but also harness it to drive their own healing journey. We believe that an informed and engaged patient is an empowered one and through enlightening articles, expert insights, and inspiring stories, we aim to equip our readers with the tools and knowledge necessary to navigate the complex landscape of mental health care. Join us as we explore how patient advocacy, active engagement, and comprehensive education can transform the experience of mental health care, turning obstacles into opportunities for growth and healing.

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FORGET (FOMO) 2024 IS ABOUT FINDING BALANCE AND ALL ABOUT (JOMO) - THE JOY OF MISSING OUT. By Wendy Reichental, Content We have all heard of the widely used acronymized (FOMO) fear of missing out. But did you know there’s an interesting antithesis to this that focuses on the encouraging aspects of missing out and celebrates it? That’s right! (FOMO) was so last year! This year, (FOMO) is out and (JOMO) the joy of missing out is actually in and trending! Experts are referencing the many benefits it can add to your mental health by shifting your perspective and finding contentment inward.

Contributor

In a recent Washington Post article on this subject, new findings suggest that missing out need not be daunting; instead, it can be embraced and integrated into your daily life as a source of enjoyment and positivity. While much of the research on JOMO has been on its impact in relation to social media, incorporating a sense of JOMO into other aspects of our lives yields remarkable outcomes for our mental wellbeing and physical health. To read the full article visit: www.washingtonpost.com/wellness/2024/01/04/fomojomo-joy-missing-out/# WHAT EXACTLY IS FOMO? The term stands for “Fear of Missing Out”. It is often used to describe a feeling of anxiety and unease people experience when they compare themselves to others, leading to feelings of inadequacy among friends or peers. As social media platforms emerged and soared in popularity, so did this phenomenon of (FOMO) and people comparing their lives with the perceived more attractive aspects of others, leading to this fear of not being part of something exciting or desirable.

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Psychologists began using the term FOMO in the early 2000s to describe a phenomenon associated with the use of social networking sites. It has gained greater attention over the years as our social media presence has increased,” says Natalie Christine Dattilo, Ph.D., the founder of Priority Wellness Group and a psychology instructor at Harvard. “FOMO includes both the perception of missing out, which triggers anxiety, and compulsive behaviors, like checking and refreshing sites, to maintain social connections,” she says. “It is closely related to the fear of social exclusion or ostracism, which existed long before social media.” www.forbes.com/health/mind/the-psychology-behind-fomo/ WHAT ARE SOME OF THE NEGATIVE CONSEQUENCES OF FOMO? Stress and anxiety: While the desire to stay informed and engaged is commendable, it's crucial to discern between essential information and the constant barrage of Instagram posts and TikTok trends, celebrity tweets, or political scandals. The incessant flood of social events and news bulletins can trigger anxiety, a phenomenon exacerbated by our brain's inherent tendency to prioritize negative and sensational information. Our desire to keep up with everything and not wanting to miss out on something important or exciting can give rise to stress and anxiety, potentially resulting in various health issues, including sleep disturbances. Addictive behaviour: The need to stay tethered to your devices for fear of not being in the loop, coupled with the immense compulsion to regularly check and respond to your emails, messages and social media feeds, can trigger an addictive behaviour pattern. In addition, the continuous stream of information about other people’s lives, via social media platforms can lead individuals to see how they measure up to others. The craving for external validation and approval with perceived societal standards further fuels addiction. Jealousy and envy are emotionally draining: Believing everything you read and see on social media already lays the groundwork for a perilous downside. Add to this the perceived notion that everyone else’s life is much more fabulous than yours, or believing that others possess more opportunities or advantages than you - can ignite a sense of injustice, envy and jealousy and take a toll on your mental health.

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The loneliness aspect: Indulging in extensive social media scrolling may appear entertaining, but its darker side is that it could paradoxically amplify feelings of loneliness. Your time on social media can be productive or leave an unsettling sense of emptiness. Recognizing we are social beings, it’s crucial to acknowledge that virtual interactions may not adequately replace genuine, meaningful, in-person connections and experiences. WELCOME THE ZEN EFFECT OF JOMO The joy of missing out (JOMO) is quickly gaining recognition. Its traction underscores its core principle: prioritizing and relishing mindful activities over frenetic activity and constantly connecting across endless social feeds or needing to be “everywhere all at once.” It promotes taking a step back, valuing your well-being and personal time for genuine relaxation and pursuing meaningful fulfilling experiences. HOW CAN YOU CULTIVATE MORE JOMO INTO YOUR LIFE? Fortunately, some self-care proactive tips can help you mitigate and quell the stress of FOMO and embrace JOMO, starting with: SET BOUNDARIES. Setting boundaries that protect your time and energy doesn’t have to be drastic; it can be just occasionally unplugging for a few hours. Spending endless time scrolling through Facebook, Instagram, and X (formerly Twitter) comes with risks. Social media platforms have their benefits, but unfortunately, they also have their dark sides. Be mindful of the time you spend online, and ask yourself periodically if the time you spend on social media is bringing you a sense of meaning and purpose or leaving you feeling empty. BE MINDFUL OF YOUR TIME. Engage in activities that foster calm; this can be stress-reducing activities like meditation, gentle yoga or practicing simple breathing techniques that can help you feel less anxious, grounded, and in the present moment. Taking deep intentional belly breaths or trying "square breathing," holding your breath for a count of four, and exhaling for four can trigger your body's relaxation response, quickly putting you at ease. The ultimate goal of mindfulness is to create that sense of serenity, living in the “now,” and feeling in control.

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SHOW SOME GRATITUDE. Taking the time to acknowledge the good things in your life and appreciate what you have rather than what you lack feeds the soul and has the potential to cultivate a sense of contentment. Another upside to being “thankful” is that it can transform anxiety and reframe your perspective. Finding satisfaction in the small things can redirect your focus away from envy and comparison and the constant need to seek external validation. WHEN IN DOUBT - OPT OUT! Seek out quality over quantity. Good relationships keep us happy and healthy. Strengthen and build on your connections with a few close friends and be selective in your activities. It’s ok to say “no” to events that don’t align with your interests or priorities. This sentiment is echoed by psychologist Susan Albers, who explained to the Cleveland Clinic, “You may need to get comfortable with saying this. And it’s also about not being apologetic for saying no. You don’t have to defend your decision or give an explanation.” https://nypost.com/2024/01/08/lifestyle/how-to-transform-your-fomo-into-jomo-according-toexperts/ ENJOY SOME SOLO TIME. Enjoying solitude does not mean you have turned into a grumpy antisocial curmudgeon! It means you appreciate your alone time and use it for self-reflection and activities that bring you joy and revitalize you mentally, physically, and emotionally. In the New York post on the recent subject of transforming your FOMO into JOMO, Chris Barry, a psychology professor at Washington State University, further explains, “Embracing missing out isn’t about cutting out the connections or self-isolating; it’s about disconnecting intentionally and giving yourself time to recharge.” https://nypost.com/2024/01/08/lifestyle/how-to-transform-your-fomo-into-jomo-according-toexperts/

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FINAL THOUGHTS. The essence of embracing the joy of missing out (JOMO) is about accepting your choices and wielding control of how you engage with technology. It revolves around selfacceptance and authenticity, leading to a better sense of self-worth and self-esteem that diminishes the compulsion to compare yourself with others. Armed with this heightened self-awareness, the goal is to focus on endeavors that consistently nurture your wellbeing. This could be done by implementing effective strategies to manage and allay stress and anxiety by setting boundaries, practicing mindfulness, and establishing a harmonious balance between online and offline activities. JOMO is not about turning your back on life’s opportunities; instead, it’s about striking the right balance that harmonizes more with your needs while fostering your mental and physical well-being. ASK FOR HELP. It’s always okay to ask for help. If the fear of missing out (FOMO) is reaching a level that significantly affects your daily life and well-being, don’t hesitate to reach out for support. Talk to your friends or family members, let them know how you are doing, and know that numerous supportive groups, resources, and professionals are readily available. https://www.camh.ca/en/camh-news-and-stories/no-mofomo WENDY REICHENTAL HOLDS A B.A. (LINGUISTICS) AND A DIPLOMA IN HUMAN RELATIONS AND FAMILY LIFE EDUCATION FROM MCGILL UNIVERSITY.

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PSYCHEDELIC-ASSISTED THERAPY: A NEW FRONTIER IN MENTAL HEALTH CARE JOSEPH L. FLANDERS, PHD OPQ PSYCHOLOGIST FOUNDER, REFUGE LICENSED CLINICAL PSYCHOLOGIST ASSISTANT PROFESSOR (PROFESSIONAL), MCGILL UNIVERSITY

In recent years, there has been a significant shift in the landscape of mental healthcare. One of the most groundbreaking developments is the emergence of psychedelic-assisted therapy. This practice is rapidly gaining recognition for its potential to break down barriers between medicine and psychology, mental and physical health and mind and body. This innovative approach is reshaping our understanding of mental health and empowering individuals to take an active role in their own healing. The Historical Context Psychedelic substances have been used for centuries in various cultural practices for spiritual and healing purposes. However, it was not until the mid-20th century that these substances began to be explored within the context of Western medicine. Despite early promising research, the cultural and political climate of the 1960s and 70s led to a stringent prohibition of these substances, halting scientific inquiry. It is only in recent years that there has been a renaissance in psychedelic research, bringing new insights into their therapeutic potential. The Mind-Body Connection The cornerstone of psychedelic-assisted therapy is its integrated approach to healing. Current Western medicine often treats mental and physical health as separate domains, with the siloed expertise of medicine and psychology. However, psychedelic therapy challenges this dichotomy by promoting a more collaborative approach within multi-disciplinary teams. It underscores the interconnection between the mind and the body, recognizing that emotional and psychological well-being is deeply intertwined with physical health.

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The Mechanism of Healing Psychedelic substances, such as psilocybin (found in magic mushrooms), MDMA (commonly known as ecstasy), LSD, DMT, and ketamine, are known to induce profound changes in consciousness. When used in a therapeutic setting, these substances can help promote the psychological flexibility required to confront and process deeply buried emotions and trauma. This process often leads to significant insights and a restructured understanding of one's self and life experiences, which can transform mental and physical health. The process is not without risk. Psychedelic compounds are powerful disruptors of brain networks; that is precisely what makes them powerful tools for personal growth. However, this disruption can sometimes be more than we bargained for. In the days or weeks following a psychedelic experience, people can feel sensitive and disoriented as they try to make meaning out of their experience, apply what they learned, and recover a sense of normalcy. This phase of the treatment is called Integration Therapy and is essential for ensuring that the experience is fully digested and integrated into their broader life. Suppose a skilled therapist does not accompany the individual, in that case, the psychedelic experience may simply land as a strange, disconnected memory or, worse, leave the person vulnerable to further mood disruptions, traumas, and addictions. The tragic story of Matthew Perry is an excellent example of psychedelic therapy gone wrong. The Role of the Therapist In psychedelic-assisted therapy, the role of the therapist is crucial. Unlike traditional drug therapies where medication is administered with minimal psychotherapeutic intervention, psychedelic therapy is deeply interpersonal. Therapists collaborate with individuals in preparation to curate a safe and supportive set setting. This is an essential and underestimated part of the process that can go a long way in preventing a so-called “bad trip” and allowing the psychedelic compound to catalyze the person’s innate healing capacity. Not much actual therapy takes place during the actual psychedelic journey. Instead, the therapist is present and available to the person, ensuring they feel safe and supported and helping them navigate the complex emotional landscapes they encounter. Finally, the therapist plays a more active role in Integration therapy, ensuring that the insights gained during the experience translate into lasting therapeutic benefits.

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Empowering the Individual A unique aspect of psychedelic-assisted therapy is its emphasis on empowering the individual. Traditional mental health treatments often position the individual as a passive recipient of care. In contrast, psychedelic therapy encourages active participation. Individuals are involved in the therapeutic process and are not only involved in the therapeutic process but are also encouraged to take ownership of their healing journey. This empowerment is a critical component of the therapy's effectiveness, fostering a sense of agency and self-efficacy in individuals. Clinical Evidence and Future Directions The growing body of clinical evidence supporting the efficacy of psychedelic-assisted therapy is compelling. Studies have shown promising results in treating a range of conditions, including depression, anxiety, PTSD, and addiction. These findings are not only reshaping our understanding of these conditions but also opening new avenues for treatment. The use of psychedelics in a controlled, therapeutic setting offers a unique opportunity to address some of the most challenging and treatment-resistant mental health conditions. Psychedelic treatment protocols are showing promising responses for the most severe and refractory cases of depression, addictions, and PTSD. This is not only a ray of hope for those suffering from these conditions but also a call to rethink and expand our approaches to mental health care. As research continues to evolve, it is becoming increasingly clear that psychedelic-assisted therapy has the potential to revolutionize the field of mental health care. By fostering a more integrated approach to health, challenging traditional boundaries, and empowering individuals, this innovative therapy is paving the way for a more holistic and effective model of care.

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The journey of psychedelic-assisted therapy from the fringes to the forefront of healthcare research and practice is a beacon of hope for many. It challenges the conventional wisdom of separating mental and physical health and provides a space where emotional, psychological, and physical healing can occur in tandem. This approach underscores the importance of treating the individual as a whole, acknowledging the intricate interplay between various aspects of health. This emerging field also brings a fresh perspective on patient autonomy and participation in health care. By actively involving individuals in their treatment processes, psychedelic therapy empowers them to be architects of their healing journey. This empowerment is a significant shift from the traditional paternalistic healthcare model and marks a move towards more participatory, collaborative, and personalized care. The future of psychedelic-assisted therapy is bright and full of potential. As societal attitudes shift and the scientific community gains a deeper understanding of these substances, we will likely see them integrated more fully into mainstream health care. This integration promises to bring more compassionate, effective, and holistic care to individuals, transcending the traditional boundaries of mental and physical health.

JOSEPH L. FLANDERS, PHD OPQ PSYCHOLOGIST FOUNDER, REFUGE LICENSED CLINICAL PSYCHOLOGIST ASSISTANT PROFESSOR (PROFESSIONAL), MCGILL UNIVERSITY

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Seniors Health In today's society, the health of senior citizens stands as a paramount concern, particularly within the framework of the Canadian healthcare system. This heightened focus is more than just a response to the growing number of seniors. Still, it is deeply rooted in recognizing their invaluable contribution to society and their unique challenges in their twilight years. Like many developed countries, Canada is experiencing a demographic shift that underscores the urgency and importance of addressing senior health as a top priority. As of the latest statistics, Canada is witnessing a significant rise in its senior population, predominantly driven by the aging of the Baby Boomer generation – those born between 1946 and 1964. This demographic shift is profound; the Baby Boomers represent one of the largest age cohorts in Canadian history. As people transition into their senior years, they bring unique health and social needs. According to Statistics Canada, the number of Canadians aged 65 and older surpassed the number of children aged 14 and under for the first time in recorded history, a trend that is expected to continue and intensify in the coming years. This shift presents challenges and opportunities for the Canadian healthcare system and society. In our Seniors Health section, we will provide information to help you in your journey, navigate daily life as a Senior, and provide resources to help you have the best quality of life.

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The Importance of Advocacy in Seniors' Health by Cheryl Petruk, MBA

Patient advocacy, especially for seniors, is a crucial element in the healthcare system. We will look at the importance of exploring various aspects and providing insights into why it's essential for the well-being of senior citizens. Understanding Patient Advocacy in Senior Health Care Patient advocacy refers to the actions and decisions made to protect and promote the rights and interests of patients, particularly those who may be vulnerable, such as the elderly. In the context of senior health, it involves ensuring that they receive appropriate care and respect and that their voices are heard in healthcare settings. The Growing Need for Advocacy in Aging Populations The world is experiencing a significant increase in its elderly population. With this demographic shift comes a range of health issues peculiar to older adults, such as chronic diseases, mobility issues, and cognitive impairments. These conditions often require specialized care and a greater need for patient advocates. Challenges Faced by Seniors in Healthcare 1. Complex Medical Needs: Older patients often have multiple health conditions, making their medical care more complex. 2. Communication Barriers: Age-related issues like hearing impairment can hinder effective communication. 3. Cognitive Decline: Conditions like dementia can affect a senior’s ability to make informed decisions. 4. Physical Limitations: Reduced mobility can make it difficult for seniors to access healthcare services. Understanding and participating in senior patient advocacy programs can be transformative for patients. These programs play a crucial role in bridging the gap between seniors and the oftencomplex healthcare systems. We deeply appreciate the continued interest and support of our health care professionals and our readers in this important topic.

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The Importance of Advocacy in Seniors' Health cont'd

The Role of Patient Advocates Patient advocates for seniors can be healthcare professionals, social workers, family members, or even legal representatives. Their roles include: Ensuring Effective Communication: They help translate complex medical information into understandable terms for the patient and ensure their concerns are communicated to healthcare providers. Navigating the Healthcare System: They assist in scheduling appointments, arranging transportation, and understanding health insurance policies. Upholding Patient Rights: This includes obtaining informed consent and maintaining privacy and confidentiality. Emotional Support: Advocates provide emotional and moral support, crucial for mental health. Importance of Patient Advocacy in Senior Health Improved Healthcare Outcomes: Advocates help make informed decisions, leading to better health outcomes. Enhanced Quality of Care: They ensure seniors receive appropriate, respectful, and compassionate care. Empowerment: Advocacy helps empower seniors, making them active participants in their healthcare. Safety and Protection: Advocates play a crucial role in safeguarding against medical errors, abuse, or neglect. Legal Aspects of Patient Advocacy Legal advocates ensure that the rights of elderly patients are upheld. They may deal with issues like elder abuse, healthcare directives, and guardianship. Understanding legal aspects is crucial in advocating effectively for a senior’s health and well-being. The Impact of Technology on Senior Patient Advocacy Modern technology, such as telemedicine and health monitoring apps, has opened new avenues for patient advocacy. It allows for remote monitoring and consultation, which is particularly beneficial for seniors with mobility issues. Challenges in Patient Advocacy for Seniors

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The Importance of Advocacy in Seniors' Health cont'd While patient advocacy is crucial, it has its challenges. These include: Resource Limitations: There may be a lack of resources, including time and financial constraints. Ethical Dilemmas: Sometimes, a patient’s wants may not align with what is medically advised. Cultural and Language Barriers: can hinder effective advocacy in diverse populations. The Role of Policy and Legislation Governments and healthcare institutions play a significant role in facilitating patient advocacy. Policies and laws must be in place to protect senior patients' rights and ensure their needs are met. Patient advocacy is vital in ensuring seniors receive the care and respect they deserve. It involves a holistic approach, considering the medical, emotional, and legal aspects of a senior's health. As the population ages, the role of patient advocacy in senior health becomes increasingly important, calling for concerted efforts from individuals, healthcare providers, and policymakers. By acknowledging and addressing the unique challenges the elderly face, patient advocacy can significantly enhance the quality of life and healthcare outcomes for seniors.

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The importance of senior health in today's society extends beyond the sheer numbers. by Cheryl Petruk, MBA Seniors contribute significantly to their communities – as mentors, volunteers, and active civic and cultural life participants. Ensuring their health and well-being is crucial for their personal quality of life and the continued benefit of their experience and wisdom to society. Moreover, seniors often require more medical attention, resources, and care as they age, which puts considerable pressure on healthcare systems and social services. Therefore, addressing the health needs of this age group is not only a matter of compassion but also a practical necessity for the sustainability of healthcare systems. In the context of the Canadian healthcare system, the increasing prevalence of chronic conditions, age-related diseases, and the need for long-term care are vital concerns. The system faces the challenge of providing accessible, high-quality care while managing limited resources and increasing service demand. This situation calls for innovative approaches to healthcare delivery, including a greater emphasis on preventive care, home-based services, and integrated care models that can adequately support the complex needs of seniors.

Furthermore, the issue of senior health is intricately linked to broader social determinants of health such as income, housing, and social connections. Many seniors live with fixed incomes and face challenges such as affordable housing, access to nutritious food, and social isolation – factors that significantly impact their health and quality of life. Addressing these issues requires a holistic approach that goes beyond medical care to include social support systems, community-based resources, and policies that foster age-friendly environments. The need to help seniors live longer and better lives is not just a matter of extending life expectancy but also of enhancing the quality of those extra years. This goal aligns with the principles of active aging and age-in-place, which advocate for conditions that enable seniors to live in their own homes and communities safely, independently, and comfortably. It also involves ensuring that seniors have access to preventive care, mental health resources, and opportunities for social engagement and physical activity. HEAL CANADA MAGAZINE |54

The importance of senior health in today's society extends beyond the sheer numbers. cont'd The significance of senior health in today's society, especially within the Canadian context, cannot be overstated. With a rapidly aging population, particularly the Baby Boomer generation, Canada faces unique challenges in meeting the health needs of its senior citizens. Addressing these challenges is critical not only for the well-being of seniors but also for the sustainability and effectiveness of the healthcare system and the vitality of the broader community. The Canadian healthcare system, policymakers, and society as a whole must prioritize senior health and adopt a multifaceted approach that encompasses medical care, social support, and policies that foster healthy aging. By doing so, Canada can ensure that its seniors not only live longer but also enjoy a better quality of life, continuing to contribute to society in meaningful ways.

Canada.ca - Seniors Section: Offers extensive information on various aspects of senior health including disability, diseases, healthy eating, medication, mental health, physical activity, and preventing falls. It's a comprehensive resource for various health-related topics relevant to seniors. Programs and Services for Seniors - Canada.ca: Provides information on caregiving benefits, health resources like COVID-19 and flu information, physical activity, mental wellness, and managing money. It also covers safe living guides and services for veterans. Aging and Seniors - Canada.ca: Covers a range of topics including dementia, chronic pain, agefriendly communities, elder abuse, and programs and services for seniors. There's also information on senior safety and security. Active Aging Canada: Offers resources on active living for aging adults, with articles and guides on topics like hot weather safety, falls prevention, and physical activity for older adults. They provide information in multiple languages and have resources specifically for practitioners. CIHI - Seniors’ Health: The Canadian Institute for Health Information provides data and research on health care for seniors, including studies on drug prescribing and long-term care homes. It also has indicators and reports related to senior health. Healthy Aging CORE National: Offers webinars, reports, articles, and tip sheets on various topics related to healthy aging and independent living for older adults. Topics include dementia care, cold weather safety, and ageism. HealthCareCAN: Focuses on providing better financial and social supports for unpaid caregivers and improving access to palliative care. They offer insights into healthcare transformation and support for older adult care. Services for Seniors Guide - Canada.ca: A guide to federal programs and services for seniors, including information on health care, home care, health insurance, and more. It also provides links to provincial and territorial seniors/health ministries for localized information.

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AGELESS FLEXIBILITY SERIES VITALITY THROUGH SENIOR-FRIENDLY STRETCHING As people age, there is a natural decrease in flexibility and muscle elasticity. This loss can lead to stiffness and an increased risk of injuries for seniors, making it more challenging to maintain independence and compromising general physical function. The encouraging news is that regular stretching can improve circulation, alleviate muscle tension, and even help delay the onset of health-related issues like arthritis. Stretching exercises can improve flexibility, joint range of motion, and overall mobility. Moreover, stretching can significantly play a role in fall prevention by helping you maintain better balance, posture and overall strength. Another advantage is that no expensive gadget, equipment, or fancy gym wear is needed to perform a few basic stretches. However, there is nothing wrong with strutting your stuff in a fashionable outfit that radiates positivity! Here are a few popular stretches often accomplished sitting or standing. (If using a chair, ensure it is sturdy and has no wheels!)

Gently and slowly tilt your head to one side, bringing your ear toward your shoulder. Hold for 15-30 seconds, feeling a gentle stretch along the side of your neck. Repeat this movement on the other side.

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AGELESS FLEXIBILITY SERIES VITALITY THROUGH SENIOR-FRIENDLY STRETCHING This helps loosen up your shoulder joint, a common site for muscle pain. This can be done sitting or standing. Bring your left arm across your chest. Use your left hand to pull your right arm closer to your chest gently. Hold for 1530 seconds, feeling a stretch in your shoulder. Repeat with the right arm.

This revitalizing side stretch works great to loosen up the abdomen, back and shoulders and offers flexibility, whether standing tall or comfortably seated. Begin confidently by positioning your feet shoulder-width apart, then raise your arms overhead. Slowly lean to the left and hold this pose for 10 to 30 seconds, then return to the center before transitioning into the same stretch on your right side.

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AGELESS FLEXIBILITY SERIES VITALITY THROUGH SENIOR-FRIENDLY STRETCHING

While standing, hold onto a sturdy surface or chair for support. Lift one foot off the ground and bring your heel toward your buttocks. Hold your ankle with your hand and feel the stretch in the front of your thigh. Hold for 10-30 seconds, let your leg back down, and switch to the other leg. You can also try the seated ankle stretch, which is also an excellent stretch for your quadriceps.

Seated in a comfortable position, clasp your right knee and slowly pull it towards your chest, feeling a stretch permeate your lower body. Hold this position for 10-30 seconds, before guiding your leg back down to the floor and repeating this movement with your other leg. This lower body stretch extends its benefits far beyond the lower limbs as it also improves the flexibility of your lower back and boosts joint mobility in your hips and knees. KEY FINDINGS Embarking on a journey of well-being involves a determined and mindful approach. Maintaining mobility at an older age can be difficult. It’s essential for older adults to start slowly and gently and to listen to their bodies consistently. For anyone with pre-existing health conditions or concerns, it’s advisable to always consult with your healthcare provider before embarking on a new exercise or stretching routine. Incorporating your stretching routine with additional exercises while maintaining proper hydration and a well-balanced diet is essential to sustaining and promoting overall health. For more information on active aging please visit: www.activeagingcanada.ca/

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Advocacy Spotlight The "Advocacy Spotlight" section of Heal Canada Digital Magazine serves as a dynamic platform dedicated to shining a light on patient advocacy groups, both new and established. This special feature aims to introduce these vital organizations to a wider audience, highlighting their missions, achievements, and the critical support they offer to patients and their families. Each edition of this segment meticulously selects a different group, delving into their specific focus areas, ranging from rare diseases to common health challenges. By showcasing their stories, initiatives, and community resources, Heal Canada Digital Magazine not only amplifies the voices of these groups but also fosters a deeper understanding and connection within the broader healthcare community. This section is more than just an informational piece; it's a celebration of the tireless efforts and significant impact of these advocacy groups & empowering readers by connecting them with valuable resources and support networks.

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In spring 2022, as COVID-19 restrictions were being lifted across Canada (and the world), there was still a great deal of concern from immunocompromised people about how to navigate what the majority of society called the ‘post-pandemic world’. In response, a patient action group convened to discuss issues facing immunocompromised Canadians. This initial group evolved to become the Canadian Immunocompromised Advocacy Network (CIAN), which now has 10 patient groups and 3 patient advocates with lived experience. When the group first formed, some of the initial objectives were to provide a space to discuss the latest COVID-19 developments and risks to inform individual decision-making, share strategies on raising awareness around the persistence of COVID-19, and identify strategies on how to protect oneself beyond only vaccination through things like Evusheld, a prophylactic antibody designed for immunocompromised patients who were known not to respond well to COVID-19 vaccines due to inadequate antibody production. Unfortunately, by fall/winter, new variants were emerging which rendered Evusheld ineffective. Immunocompromised people who had only just stepped out of their homes with a sense of protection for the first time in more than two years were forced to begin isolating again. More than ever, CIAN felt an urgency to support the immunocompromised community. A critical part of CIAN’s focus is to understand the varying perspectives of immunocompromised Canadians to ensure the groups goals are in line with the needs of the community. However, as we have moved through the pandemic, much of the data which was available has been discontinued. To that end, CIAN was fortunate to participate in a survey run by the Canadian Association of Retired Persons (CARP).

THE CANADIAN IMMUNOCOMPROMISED ADVOCACY NETWORK (CIAN) – ADVOCATING FOR IMMUNOCOMPROMISED PEOPLE ACROSS CANADA

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THE CANADIAN IMMUNOCOMPROMISED ADVOCACY NETWORK (CIAN) – ADVOCATING FOR IMMUNOCOMPROMISED PEOPLE ACROSS CANADA CONT'D

This survey, which ran in spring 2023, had 2,945 respondents from across the country, of which 26% reported being immunocompromised in some way. Some key findings were: 80% of immunocompromised respondents were somewhat or very concerned about COVID-19, compared to 64% of non-immunocompromised respondents. 76% of immunocompromised respondents felt it was very important for immunocompromised Canadians to have additional protection/support in dealing with COVID-19, as compared to 65% of non-immunocompromised Canadians. Twice as many immunocompromised respondents (40%) respond feeling anxious compared to nonimmunocompromised respondents (20%) when it comes to COVID-19. 65% of immunocompromised respondents report that COVID-19 is significantly impacting their day-to-day life as compared to 43% of non-immunocompromised respondents. Ultimately, the survey showed that in order for the immunocompromised population to return to as much normalcy as possible additional supports were needed. With information from this survey and interviews with our network members,. CIAN drafted a position paper outlining four critical calls to action around COVID-19 and other diseases. Increased and ongoing knowledge generation and dissemination around COVID-19 Greater alignment on definitions of immunocompromised across Canada Targeted infection control measures to protect immunocompromised patients Easier and more equitable access to prophylactic and therapeutic options for COVID-19 and other potentially infectious or pandemic pathogens, COVID-19 uncovered a whole population of Canadians who had previously been dealing with often invisible conditions and who had been forced to reveal their medical conditions to advocate for themselves. While most people have had the luxury of moving on, many immunocompromised Canadians have not, which means further advocacy is required. Thanks to the efforts of organizations like CARP and CIAN and their international counterpart, the International Immunocompromised Advocacy Network, the light still shines on the ongoing challenges of the communities in Canada and beyond.

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The Canadian Immunocompromised Advocacy Network (CIAN) – advocating for immunocompromised people across Canada cont'd While there is an understanding that the task of advocating for support related to COVID-19 is ambitious due to low tolerance and COVID-19 exhaustion, CIAN is made up of high-energy and laser-focused organizations and advocates who are determined to make a difference. In 2024, CIAN is committed to improving the overall quality of life for immunocompromised Canadians, collaborating and supporting their network members with essential resources to inform their constituents, and will advocate for equitable and timely access to lifesaving therapeutics. If you or someone you know would like to join or endorse the Canadian Immunocompromised Advocacy Network, please email: info@19tozero.ca

Canadian Immunocompromised Advocacy Network (CIAN). This work outlines calls to action that unify and amplify the diverse voices of all immunocompromised Canadians to increase awareness of our continued challenges and advocate for broader, faster, and more equitable access to lifesaving prophylactics and therapeutics. 1. Join CIAN: If you or someone you know is interested in joining CIAN as a group member, we would be delighted to hear from you. 2. Endorse: We recognize that some may wish to support our cause without further time/resource commitment. We warmly welcome endorsements from individuals and organizations that align with our mission. 3. Spread the Word: One of the simplest and most impactful actions you can take is to share our mission with others. By sharing the CIAN website/position paper with your network, you are helping increase awareness and support for our cause. Our goal is to protect more Canadians to improve the quality of life and significantly reduce hospitalization for vulnerable people. We hope you'll join us! To find out more please visit https://immunocompromised.ca/

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RARE DISEASE DAY FEBRUARY 29, 2024. Each year, the last day of February is dedicated to recognizing Rare Disease Day. This annual observance is more than a day on the calendar; it is an opportunity for organizations and communities to unite collectively to participate in activities that involve sharing patient stories and include educational initiatives highlighting the challenges and issues faced by people living with rare diseases. The primary purpose of holding “Rare Disease Day” is to spread awareness to improve understanding of rare diseases among the general public, policymakers, researchers, and healthcare professionals. WHAT ARE RARE DISEASES? Rare diseases are conditions that have a low prevalence in the population. A Rare Disease is when it affects a small percentage of the population, often defined as fewer than 1 in 2,000 individuals. Rare diseases can be genetic or chronic and occasionally be life-threatening. Due to their infrequent occurrence, rare diseases can pose distinctive problems for efficient diagnosis, treatment, and accessibility of resources and support. WHAT IS THE GLOBAL GOAL? The global effort aims to address the unique needs of those battling rare diseases by accelerating the development of better diagnostic tools, expediting clinical trials, and expanding research for potential treatments and cures. In championing these goals, advocacy continues to ensure that those affected by rare diseases have equitable access to healthcare services, medical treatment and social inclusion. PURPOSE OF RARE DISEASE DAY. To address the challenges related to rare diseases and effectively convey a sense of urgency. Better understanding and dispelling misconceptions and stigmas surrounding rare diseases. Emphasize the need for ongoing vital research and breakthroughs in diagnostics and treatments. Rare Disease Day spotlights the role of community support, amplifying the voices of those living with rare diseases, raising much-needed awareness for funding, research and resources and offering a message of hope and a brighter future.

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PATIENT ENGAGEMENT IN HEALTHCARE: TRENDS, BEST PRACTICES, AND CONSIDERATIONS BY URSULA MANN, PRINCIPAL AND CHIEF PATIENT OFFICER (CPO), PATIENTVOICEPARTNERS Patient engagement in healthcare has undergone significant transformation in recent years. In today's rapidly evolving healthcare landscape, patient engagement has become a central theme. Patients are no longer passive recipients of care; they are active participants in their health journey. This article delves into the trends shaping patient engagement, the critical importance of privacy and compliance, the role of patient advisory boards, multistakeholder perspectives, diversity and inclusion, global trends, and the invaluable contribution of patient organizations to both patients and the healthcare system. Trends in Patient Engagement: Patient engagement is no longer passive, and the healthcare landscape is shifting towards a patient-centric model. Patients are increasingly taking an active role in their healthcare journey. Patients and caregivers are more informed and empowered and several trends illustrate this evolution: Digital Health Tools: The proliferation of smartphones and wearable devices has given patients access to an array of digital health tools. Patients are using apps, wearables, and telemedicine for better access and monitoring. These tools allow patients to monitor their health, track their conditions, and even consult with healthcare providers remotely. Telemedicine, in particular, has seen tremendous growth, especially during the COVID-19 pandemic, making healthcare more accessible and convenient. Personalized Medicine: Advances in genetics and data analytics have paved the way for personalized medicine. Patients can now benefit from treatments and care plans tailored to their unique genetic makeup and needs, reducing the one-size-fits-all approach to healthcare. Peer Support Communities: Online communities, forums, and social media platforms have become vital sources of peer support for patients. These platforms allow individuals to connect, share experiences, and provide mutual assistance. Patients can learn from the experiences of others facing similar health challenges, leading to increased knowledge, emotional support, and empowerment. Privacy and Compliance Considerations: Patient data is becoming more digital and the need for robust privacy and compliance measures is paramount. Patients must trust that their data is secure and their privacy respected. Regulatory compliance, such as HIPAA in the United States and GDPR in Europe, plays a crucial role. The digital transformation of healthcare has brought data privacy and regulatory compliance to the forefront.

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PATIENT ENGAGEMENT IN HEALTHCARE CONT'D Privacy considerations need to go far beyond data security. Another important privacy consideration is developing and supporting practices and systems that allow patients and caregivers to share their healthcare experiences and needs anonymously. This allows a broader range of patients and caregivers to share their voices and honestly, be willing to do so. Here are some key considerations: Educating Patients: Ensuring patients are informed about how their data will be used and the steps taken to protect their privacy. Robust Data Security Measures: Implementing strong encryption, secure servers, and regular cybersecurity audits. Informed Consent: Requiring patients' informed consent for data collection, sharing, and use. Data Minimization: Only collecting the data necessary for the intended purpose, and not overstepping the bounds of what is necessary for effective engagement. Transparent Policies: Clearly articulating privacy policies and providing patients with easy access to information about how their data is used. The Role of Patient Advisory Boards: Patient advisory boards, focus groups, or perspective sessions are best practices for obtaining patient, caregiver, patient organization, health care professional, and stakeholder perspectives. It is vital that all stakeholders, including patients and caregivers, can share their voices. These perspectives help to provide valuable input into healthcare decisions-making and bringing the lived experiences and perspectives of patients into the decision-making process. They ensure that the patient’s voice is heard at all stages of care delivery, in developing new therapies and policy development. For instance, a patient advisory board in a children's hospital may advise making pediatric wards more child-friendly. Another example, at the cancer center, may offer insights into the emotional and psychological support needed by cancer patients and their families. In these examples, patient advisory boards help healthcare institutions better understand and meet patient needs, thus enhancing the overall quality of care. For a healthcare company, patients can comment on experiences with current therapies and challenges in managing the disease that can impact service offerings, treatment development, and access. Patient advisory boards can support public agencies, healthcare companies, and patient organizations to innovate with insights. If developed and executed correctly, they also support the earlier-mentioned system of supporting patients and caregivers to share their voices while maintaining privacy and anonymity. It is essential to be transparent about who is asking for this information and how the responses will be used, including who is doing the contracting, payment, and storage. Processes used for health care professional paperwork do not require a higher level of data security as patient paperwork processes, raising the question that systems and processes need to be reviewed to ensure compliance and appropriate fit for patients and caregivers. The question “can” we do this is important but equally important, is “should” we do this? Organizations need to challenge themselves on ensuring they are gathering current patient voices to inform business decisions and providing privacy. HEAL CANADA MAGAZINE |66

PATIENT ENGAGEMENT IN HEALTHCARE CONT'D The Importance of Multi-Stakeholder Perspectives Decisions often impact various stakeholders in healthcare, including patients, providers, payers, and policymakers. Multi-stakeholder perspectives ensure that the interests of all relevant parties are considered. Collaboration thrives when everyone is at the table, and healthcare policies and practices become more effective and inclusive. The advantages of multi-stakeholder engagement are particularly evident in addressing complex healthcare challenges such as chronic disease management, health disparities, and public health crises. During the COVID-19 pandemic, for example, multi-stakeholder collaboration was essential. Healthcare providers, government agencies, researchers, pharmaceutical companies, and patient advocacy groups worked together to develop vaccines, disseminate accurate information, and ensure equitable access to care. Diversity and Inclusion in Patient Perspectives Diversity in patient perspectives is essential. Patients come from different backgrounds, cultures, and experiences. Of consideration is age, sex, and gender as well. Including a wide range of voices ensures that healthcare solutions are sensitive to the needs of all individuals, addressing health disparities and fostering a more equitable system. The FDA now requires pharmaceutical companies to provide their diversity and inclusion plan as part of the clinical trial overview for a treatment submission. By including individuals from different ethnic backgrounds and socioeconomic statuses, researchers can gather more comprehensive data about how treatments and interventions work in real-world settings. The Value of Patient Organizations: Patient organizations, often called patient advocacy groups, are crucial in connecting patients with healthcare systems. They bridge individuals living with specific conditions and the healthcare infrastructure. Patient organizations play a crucial role in providing support, education, advocacy, and supporting the voice of patients. Support and Education: Patient organizations provide a wealth of information and resources to help patients better understand their conditions, treatment options, and available support. They offer educational materials, webinars, support group meetings, and helplines. Advocacy: Some organizations advocate for patients at the policy level. They work to influence healthcare policies and regulations to serve the interests of patients better. This advocacy can include efforts to secure better access to care, insurance coverage, and funding for research. Supportive Voice: By bringing patients together, these organizations create a collective voice that can impact change. They can share their experiences, challenges, and ideas for improvement. They can partner and collaborate with health care professionals and public agencies.

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PATIENT ENGAGEMENT IN HEALTHCARE CONT'D

Global Trends in Patient Engagement: Patient engagement is not a localized concept; it is a global trend. Countries worldwide are embracing patient-centered care and promoting patient engagement in healthcare decisions. International trends include Patient Advocacy: Patients and patient advocacy groups worldwide are increasingly vocal about their rights and needs, pushing for more patient-centered healthcare. Involving Patients in Research: Many research initiatives involve patients directly. These initiatives recognize the value of patient input in setting research priorities, designing studies, and interpreting results. International Collaborations: International organizations and collaborations focusing on advancing patient-centered care. The World Health Organization (WHO) promotes patient engagement to achieve universal health coverage and improve healthcare quality. Patient engagement is not just a buzzword; it's a fundamental shift in healthcare dynamics. As patients and caregivers take a more active role in their care, the healthcare industry is adapting and evolving. Privacy and compliance considerations are paramount, and patient advisory boards, multi-stakeholder perspectives, diversity, and inclusion are all best practices in this evolving landscape. Patient organizations play a vital role in supporting patients with healthcare systems and driving this transformation. By understanding and embracing these trends and practices, healthcare can become more patient-centered, equitable, and effective, ultimately benefitting all stakeholders.

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Patient Journey's

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Life Challenges. By Harjeet Kaur

In May 2018, I moved to Edmonton from India with my husband hoping for a new career, a new life, and to start a family. Things were all right at first. Everything was going smoothly; I was living my normal life, but life had different plans. In May 2019, I began experiencing high fevers with no other symptoms. Weeks passed, and I found myself in the emergency room numerous times. I was told it was just a normal viral fever and took Tylenol to relieve it. Weeks passed, but the fever persisted. I visited my general practitioner and even the emergency room again, but there were no answers. I don’t know how often I went to the emergency room, waited for seven to eight hours, and always got the same answer: “It’s just a fever. You don’t have any other symptoms, so take Tylenol.” I was on Tylenol every two hours, back-to-back for three months. I was admitted to the hospital. There, I was treated as a subject to extensive scans, biopsies, X-rays, bloodwork, and even a laparoscopy. I underwent numerous biopsies and surgeries and was seen by various specialists and doctors for two and a half months at the University of Alberta Hospital, but still, there were no answers. I felt like a research patient where every doctor came to see me, and no one had any answers. After three months of being in the hospital, with swelling due to IV fluids, along with continuous fevers, fainting, and ulcers, I gave up. Unable to find any answers in Edmonton, my husband contacted doctors in India who suggested that I should come back to India so that they could examine me in person, and we could get answers. At the same time, the doctors at the U of A Hospital wanted to do one last biopsy after the endless number of biopsies already done within those three months. It was a skin biopsy, and I was promised that it would be the last one. Exhausted and discouraged, I was reluctant at first. I had so many scars on my body and had gone through so many scans and bloodwork for the past three months, still, my husband said that I should give it a try, and so I did. After almost three months in the hospital, on August 28, 2019, I was diagnosed with stage 4 subcutaneous panniculitis-like T-cell lymphoma (SPTCL). My diagnosis was complicated by hemophagocytic lymphohistiocytosis (HLH), an autoimmune disease. This form of cancer is very rare with only 150 cases reported worldwide.

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Life Challenges. cont'd I didn’t know anyone with cancer, nor did I have a family history of cancer. Hearing that you have cancer changes your life and the lives of those who care about you. When faced with the most significant obstacle and the only choice is to live, you take a breath and focus. Cancer was a condition I could not control, but the way I reacted was up to me. It was so challenging to take everything in at that time when my doctor said the “C word.” Nobody wanted to hear that. The doctors were rushing me into aggressive treatment right away because my cancer was at an advanced stage, and my health condition was getting worse every day. My husband wanted a few hours to discuss it and take some time to process it. For the past several months, they’d had no answers, and now they learned it was cancer. I received my first chemotherapy session at the U of A Hospital on August 29, 2019, and the oncologist explained to me the type of cancer that I had and the treatment plan. I had a very rare type of cancer, and they weren’t able to diagnose it until now because the symptoms for it are still insufficient. After the first two of six chemotherapy sessions, I was finally discharged from the hospital. Chemotherapy itself wasn’t easy, but I was relieved to be finally home again after four months. For the remainder of my chemotherapy sessions, I went to the Cross Cancer Institute. The treatment was somewhat successful but not completely. They suggested that I should undergo a stem cell transplant, which would allow me to live a little longer; the alternative was to continue with chemotherapy until my body could take it. In December 2019, I met with a fertility specialist and was told that my fertility was also compromised, and I was told that I had gone into early menopause. I wonder sometimes that if I had been diagnosed earlier and had been told about potential complications with my fertility, I may have gotten my eggs frozen. I also met with my team for the stem cell transplant at the Tom Baker Cancer Centre in Calgary. The plan was that I would receive aggressive chemotherapy every week in January and February 2020 to put my cancer into partial remission so that my body would be ready for the transplant. Whether I would survive or not, I just wanted to pass over this process and my thoughts. In January 2020, I lost my right eye vision due to CMV retinitis. I felt disappointed that no one took me seriously at that time even though I tried reaching out to my team and went to the emergency room.

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Life Challenges. cont'd The stem cell transplant occurred in April 2020 during the height of the COVID-19 pandemic. As a result, I was isolated for 32 days with a strict, no-visitor policy. The stem cell transplant was unbelievably tough for me without having my family around for support. But with my younger brother being my 100% donor match, it was ultimately successful. Being in the hospital by myself, I wondered whether I would get out alive or not. I was fighting for my life every single day. Fortunately, the stem cell transplant was successful. However, it wasn’t easy due to the amount of stress and changes to my mental health and physical appearance. This whole experience has given me a new perspective. My amazing husband and family got me through those tough times. It’s been a long journey to get here. At some points, I felt like this day would never come. But here I am, getting better every day and living my life. I accepted that this is my new normal, and I’m trying to live each day. I was lucky to get a second chance at life. My stem cell transplant will be four years in April 2024. I am currently NED (no evidence of cancer), but I do go for my follow-ups (every three months for bloodwork) and PET scans every year. Along with my other specialists, I see six specialists every 2/3 months. It’s just too overwhelming. Every story and journey is different, but if we have the strong willpower to live and survive this, we will do it. I know it isn’t easy, but we have to. I want to leave you all with a message of hope and resilience. Cancer may have been a part of my life, but it does not define me. I am a survivor, and I am stronger because of it. Let us all stand together, united in our fight against cancer, and continue to inspire hope in the hearts of those who need it most. I feel happy if I'm at least able to help others and bring change to those dealing with cancer in our social community. I am Working on my health, “taking one day at a time.” Blogger “My Cancer Battle – My Journey”: Social Media Influencer & Advocate (Cancer recovery and life-affirming on IG along with storytelling - IG Handle - @hk_thriver Cancer Patient advocates with the Canadian cancer society and is involved with other cancer communities in Canada and globally. My Cancer Articles, videos, interviews, and Volunteer work: https://linktr.ee/Hk_Thriver

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ENDURING LOVE & ADVOCACY: A FAMILY'S JOURNEY THROUGH PALLIATIVE CARE AND LOSS" PAM ROBERTSON RIVET, PHD

When Dad went into hospital, we knew what was coming. He’d had a cough since the end of October, but he’d been declining steadily since the previous March. My sister had taken him to the doctor several times, but Dad didn’t often let her into the examining room despite how hard of hearing he was. He wanted the doctor to speak directly to him, he said, and not a helper. Finally, Dad realized he was not getting what was needed, and he relented to let my sister in his doctor’s appointments, which led to lab tests getting ordered on November 23 (seven weeks after the coughing started). I called Home Care and invited them to see Dad and Mom together. However, Dad was not open about his problem and said he and Mom could handle it without Home Care. Mom is pretty frail, so to say we were worried is an understatement. I had a follow-up call with Home Care to let them know we needed their support. More advocacy by my sister and a persistent cough finally led to a chest x-ray on December 21. My brother, sister-in-law, and sister started taking turns sleeping over because Dad decided that he would rather sleep in a recliner than his bed. He shares a few incidents, and it is clear he is having intermittent confusion, and he is hallucinating. The chest x-ray showed a large mass in one lung, along with pneumonia. With the holidays, there were delays accessing an emergency CT scan, but the scan finally occurred January 3. I popped into the doctor’s office the following day to track down results, and was told to bring Dad into the office. I had to bundle him into a wheelchair in freezing winter weather so he could be the last patient of the day on January 4. The news was a lot worse than pneumonia, and the doctor filling in for Dad’s family doc told Dad he had metastatic cancer. “You’ll want to know how much time you have,” the doctor said. “Everyone asks that question. I really don’t know, except to say it’s weeks rather than months.”

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ENDURING LOVE & ADVOCACY CONT'D At home later, Dad and I talked about the difference between palliative care in a hospital setting versus staying at home and having Home Care help. If Dad was going to die at home, we needed Home Care involved, because Mom couldn’t keep doing all this together. I explained what Home Care told me…they could provide a hospital bed and teach my sister and me how to administer his pain meds properly. Dad is keen for a swift end since his situation is terminal, and it’s been in his personal directive for years that he didn’t want life support, tubes, or living without purpose. We end up talking about a drive-thru type of approach to end-of-life and Canada’s recent adoption of medically assisted dying (MAID). Could MAID provide him with the drive-thru approach he was hoping for? It’s gallows humor at its finest. The following day, I researched MAID (Medically Assisted In Dying). According to their website, it can take weeks or longer to arrange. Dad said he wanted to apply for MAID, and if he were to die naturally before MAID could help him, then so be it. “What pain medication is he on?” people such as my auntie, who is a nurse, asked. I called the doctor’s office for a prescription. They’d rather his family doctor issue a prescription, but that doctor is off on an indefinite leave. I push. They relent and send a prescription off to the drugstore, but it’s just enough to last until the regular doctor is expected to return. I started cooking some of Dad’s favourite things to tempt him to eat. He had already reduced his intake to try and avoid the coughing spasms. Ginger Ale in tiny cans helped give him some relief. A morning cup of coffee from Starbucks brought a smile and for a few minutes his shoulders would relax. Then there’d be more coughing, as spasms racked his body.

By January 8, Dad was too weak to get himself to the bathroom, and Mom was struggling to help him stand up. He said he wanted to go to the hospital for a catheter. When the paramedics arrived, they were kind and gentle, and also spoke loudly so Dad could hear them. They topped his thin frame with as many blankets as they could to keep him warm on the way to hospital. After six hours in the emergency department, Dad was admitted and then catheterized. Staff were both impressed and mortified that he had coped at home given that he had cancer in his lungs, brain, liver, adrenal glands, and it had broken vertebrae and ribs on its invasion.

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Enduring Love & Advocacy cont'd

A nurse tried to remove his glasses as they settled him into bed on the ward, and Dad stopped her. “I can’t afford to lose those,” he admonished. “It’s okay Pops,” she cheers him along. “I am putting them right here for you.” The following days were marked by the incessant ticking of a cruel clock in Dad’s hospital room. Tick. Tick. Tick. “The days are going by so slowly. Why am I still here?” he said angrily. The highlight of his day at this point was a visit from a physiotherapist who set him up with a portable oxygen tank so he could take a little walk around the unit. I overheard one nurse saying it was fine for them to modify the doctor’s orders, and another nurse saying it wasn’t. I had challenged them as to why he wasn’t on pain meds around the clock, since that’s what the admitting doctor had ordered. The nurses were going into his room and asking Dad if he wanted something for pain, and he would answer, “no.” Without the medications, his pain was severe and the hallucinations were terrifying him. His admitting physician stopped by for a visit, and explained how his confusion and hallucinations could be on account of his extreme pain, caused by metastatic cancer. He reluctantly agreed to the pain medications. On January 11, Dad was up with a walker and wobbling around his room. He didn’t want to go back to bed, partly because of boredom and discomfort from the rubberized mattresses and plastic coated pillows that made him too hot. He was stiff from laying in bed, and preferred to be sitting up. Sore spots on his elbow and groin, however, were irritated by being in a hospital wheelchair. I went to the nursing station to ask why he was up, and the nurse's reaction was she didn’t know how he managed. He ought not to have been able to walk and express himself as he did, given the extent of his cancer, and yet there he was. Up walking around, and swearing under his breath. I visited what passed for a nourishment centre to make him some tea. It’s actually just a hot water spigot, and we have to bring in tea bags from home. I also started packing a lunch bag for Mom, but she rarely ate anything from it. She held Dad’s hand, and talked to him, sometimes singing, and other times just comfortably quiet together. They’d been married 63 years…they don’t have to chat every minute of the day anymore. I read The Wind in the Willows to him and it made me feel good that he’d close his eyes and smile as he listened. When I brought in his shaver to clear the stubble on his face, he smiled and checked his reflection by using the reverse camera on my phone. I knew it was the last time I would ever do anything so personal for him. I have cut his hair since I was 15, but his skin was never so thin and brittle as it was right now. His Viking light red hair had shed itself of its colour, and turned a mousy grey. Two days later, Dad was moved into a shared room where the poor woman in the next bed had to hear him cough and gasp every 90 to 180 seconds. His glasses were nowhere to be found, despite looking in both rooms and everywhere in between. He swears under his breath, stuck in a liminal space, calling for an end, yet frightened of what’s to come.

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Enduring Love & Advocacy cont'd

My sister and I finally got to talk with the palliative care nurse, who is lovely but also looks after an enormous geographic area. She arranged for an additional medication to help dry Dad’s lungs better and make him more comfortable. She also spoke about other medications that could be used to help with his increased agitation and the difficulty in managing his pain. The nurse on the ward arranges for some cream for Dad’s nose because the constant use of an oxygen line irritates his nose, and he likes to pull it off. The next day, he got moved into a palatial room designated for palliative care. My brother brought in some music, and homemade trifle (a favorite dessert), while my sister-in-law treated him to massage and energy work to soothe and comfort him. I made him tea whenever he wanted, and we stocked the fridge with ginger ale and treats. I’m not sure if it was the lack of hydration or the growing cancer, but his voice changed from a whisper to a gasp only heard when he pushed on an exhale. He was finding it more challenging to grasp the right words and put his head in his hands as if trying to convince his brain's massive lexicon to open. “Please,” he exhaled one day. “Faster.” “I’m trying, Dad. We have to be patient.” I rub his hand and arm. ”That’s what your mom says. Patient. I am not patient,” he grimaced. Not enough nurses could see the number of patients on the unit. And, when a winter cold snap leads to -40 degrees for several days in a row, the staff shortage hits hard. When Dad experiences a problem, whether it’s a cough that won’t stop or medication is late, we have to find a nurse to see him. When he started balling his fists or crying out with “help” or “I’m frightened,” we sat with him and made calming sounds, but none of us knew what to do. On those cold days, it was difficult to get me and my Mom to the hospital to stay for the entire day. He didn’t eat much. Frontline staff don’t have much time for him, and in his weak state, he cannot remove the lids off things they bring him; the foil on top of his applesauce, and the plastic lid on the hot water for his tea are impossible for him to get off. In between, he cheerfully ate the trifle my brother made, shut his eyes, and relished a fresh raspberry I popped between his lips. On his 91st birthday, day 10 of hospitalization, Dad underwent the first assessment with MAID. The assessor came from out of town to explain the program. He was kind, compassionate, and very direct. Dad scoots forward in his wheelchair so he doesn’t miss anything, and he’s wearing his hearing aides. He initials, signs the forms, and then sighs heavily between wracking coughs.

He was troubled by all the bother he feels like he is causing. He was keenly aware of the health care dollars committed to keeping him comfortable, and that his family have all mysteriously been available to step away from work and other commitments so they can be with him at the hospital. The fussing becomes part of his irritation.

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Enduring Love & Advocacy cont'd

The next day, Dad was shuttled unceremoniously out of the palliative care suite and into a tiny room around the corner and out of sight from the nursing station. The suite was needed to host someone who was more ill than Dad and was expected to pass at any moment. This increased Dad’s irritation hugely, despite being understandable to all of us. The new room and made it difficult for us to keep Dad company, since there was barely space for Mom’s walker and Dad’s hospital issued wheelchair. There is no fridge, of course, and the distance to the nourishment station with the hot water spigot is too far for Mom to travel. She’s been in and out of the hospital and walked those long hallways using her walker, but her knee is giving out and we are putting a brace on it daily to give her added support.

Dad had long said that he didn’t want to go into people’s storage before dying, and now here he was in a living hell with pink walls and loud clocks. Tick. Tick. Tick. I spoke with the palliative care nurse again, and she came with a nursing colleague to visit Dad and Mom at the hospital. She has a kind and supportive way about her, checking in with Mom to make sure Mom has access to what she needs, but Mom has no idea what to ask for. Instead, Mom shares a vignette about how much Dad enjoys people being dressed nicely and that she is wearing lipstick to the hospital daily for him since she can’t also wear perfume since the hospitals are scentfree. A pastoral guide also came to visit, but Dad chased him off, saving his energy for the second MAID assessment, still three days away. His agitation and irritation increased steadily, and the overnight staff park him with the other sleepless patients near a television at the nursing station for several hours at a time. When he is in bed, they attach an alarm to his pyjamas so they can hear when he is restless and trying to escape the guardrails of his bed. He can feel the Grim Reaper on the edge of the room and tells us about a cloak that is floating nearby, and that it scares him.

For Specific information on MAID https://www.canada.ca/en/health-canada/services/health-services-benefits/medical-assistance-dying.html

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Enduring Love & Advocacy The second MAID assessment gets completed, but Dad only gets more impatient. He turns away from food, and starts cont'd to resist the nursing staff who are trying to keep him comfortable. When I rub his back, he is just skin and bones under the hospital issued pyjamas. He won’t let me read to him, and doesn’t want music played. It’s too many balls in the air, he says, and he gestures upward with his hands as if the balls are above his head and need tightening like a lightbulb. “Too many balls!” he gasps. My sister-in-law continues to offer massage and does an admirable job at getting him ready for bed in the evenings, but in the morning, there he is seated at the nursing station among the other night time escape artists. The wait is unbearable.

Dad’s 14th day in hospital was the worst one of all. Dad’s emotions were raw, despite being on heavier medication and sleeping most of the time. He continually removed his oxygen, and we’d patiently put it back on, because at least when he was on it, he was experiencing less bouts of fear or confusion. A visit from the palliative care nurses meant some good company for my Mom that afternoon, and they were kind and caring, chatting about lipstick and looking good for Dad. They spoke to Dad during that visit, but he wasn’t responsive given the heavier doses of medication to help keep him comfortable. He wasn’t coughing much, but he was sitting up in bed and he’d open an eye and then shrug at us before returning to sleep. Mom held his hand for hours, and he gripped hers tightly. When we said goodnight to him, I wondered if he would still be there in the morning. I got a call from the hospital hours later, saying he had died in the wee hours of the morning on the 15th day in hospital, five days after his 91st birthday. Recommendations Caregivers working in palliative care are lovely people. However, the system is harrowing for patients who get shuffled from room to room, have their personal effects lost, and feel frightened as they become more ill and less in control of their lives. Staff are run off their feet. Palliative care patients have not necessarily lost their capacity to think, even when they have lost much of their ability to communicate. They need to have their care plans discussed with them so they (and their families) understand what to expect. Staff must have time to communicate. Patients like Dad are fully aware, but need extra time to process information. Nurses and doctors who speak too quietly, or too fast, are hard to understand for the hard of hearing and for people with brain injuries or in this case, cancer, and this adds fear to the patient’s experience rather than alleviating it. Dad, Your life was so much more than your last 15 days on Earth. I love you, and though you’ve only been gone a few days as I write this, I miss you. xxx Pam Robertson Rivet, PhD, is a writer and researcher, currently on time out from her work in fabric design, and sharing the stories of women who work behind the scenes, particularly as we experience the 80th anniversaries connected to the Second World War.

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Living Well In this vibrant corner of Heal Canada Digital Magazine, we're excited to introduce you to our "Living Well" section – a treasure trove of inspiration and guidance for those seeking a healthier, happier, and more balanced life. Our mission is to empower you with expert insights, the latest health trends, and personal wellness stories that resonate with real-life challenges and triumphs. Here, we explore the many facets of well-being: from nourishing your body with wholesome nutrition to rejuvenating your mind through meditation and mindfulness. You'll find practical advice on exercise, mental health, and preventive care, all tailored to fit into your busy lifestyle. But "Living Well" is more than just a guide; it's a community. We encourage you to engage with us, share your journeys, and learn from others who are on similar paths. Whether you're taking the first steps towards a healthier you or are further along your journey, we're here to support and inspire you at every turn. Living Well will provide topics that matter the most to your health and happiness. Let's celebrate the joy of living well together!

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THE BENEFITS OF EXERCISE FOR OVERALL WELLBEING BY: KELLY PEREIRA, NASM CERTIFIED PERSONAL TRAINER AND CANCER EXERCISE SPECIALIST We all know that exercise is beneficial for our health and that we should participate in some type of physical movement. Do you know the extent of why exercise is so important and the official recommendations? In this article, I will first outline the reasons why you should include movement in your daily routines, followed by the recommended exercise guidelines for adults. If you don’t enjoy exercise, you need to be motivated by educating yourself on its many benefits. Immediately after a single bout of moderate to vigorous exercise, you are highly likely to experience improvements in your overall sleep quality, less anxiety, and a reduction in blood pressure. On the days you don’t feel like exercising, remind yourself that you will feel better after! The long-term benefits of exercise include: Brain health: It reduces risks of developing dementia (including Alzheimer’s disease and reduces depression). Heart health: It lowers the risk of heart disease, stroke, and type 2 diabetes Cancer Prevention: It lowers the risk of many cancers, including breast, colon, lung, kidney, lung, bladder, stomach, and endometrium. Maintaining a Healthy Weight: Obesity is related to diabetes, cancer, and other health conditions. One’s strength: Regular resistance training and impact exercises help bones get stronger and improve bone density. For osteoporosis, it can slow the progression of bone loss. Balance and Coordination: Adding balance-challenging exercises into your routine and being strong can help prevent your risk of falling. Improved Immunity: Exercise gets the immune cells moving throughout the body. Younger-looking skin: The fibroblasts that produce collagen are supported by increased oxygen and nutrients to the skin and the removal of toxins. Source: Physical Activity Guidelines for Americans, 2nd edition https://www.cdc.gov/physicalactivity/basics/adults/health-benefits-of-physical-activity-for-adults.html

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The Benefits of Exercise for Overall Wellbeing cont'd Now that you are convinced and motivated to include exercise in your life habits, here are the guidelines to help you plan your routine. Any progression toward these guidelines will provide health benefits. The Canadian Society for Exercise Physiology (CSEP) recommends that you participate in 150 minutes of moderate to vigorous aerobic exercise. This could be running up the stairs or a quick jumping jack session where you become slightly out of breath but can still speak a sentence. An accumulation of 150 minutes is all that is required. If you enjoy more organized activities, you can strive for 30 minutes, 5 times a week. Additionally, CSEP recommends 2 days of muscle-strengthening exercises using major muscle groups. These can be done at home with dumbbells or resistance bands.

If you are nervous about various health issues, you can consult an exercise professional to discuss how you can safely move more. CSEP also has a list of guidelines for various health conditions and age groups on their website. https://csepguidelines.ca The overall goal is to move throughout the day. You do not need to have an all or nothing mindset. The idea of “Progress Over Perfection” is what has helped many people stay the course for lifelong wellness! If you need more information, help or guidance you can reach out to www.fit2beatdisease.ca

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Winter Snacking

Healthy snacks are an important part of a heart-healthy diet. Good snacks can: • Provide nutrients that help protect you from heart disease, stroke and other chronic diseases. • Help you stay energized throughout the day, especially if you get hungry mid-morning or midafternoon. • Fight off hunger and keep your metabolism going. This can help you maintain a healthy weight. Just remember to keep portion sizes small. Snacks are supposed to tide you over, not replace a meal. Two is better than one Choose snacks that combine at least two different types of foods • lower-fat, lower-sodium cheese and whole grain crackers • celery and peanut butter • pita with hummus • vegetables and a lower-fat dip • nuts with fresh fruit Combining foods this way will boost your energy and leave you feeling satisfied longer. Plan ahead Plan ahead for your snacks the same you do for meals. Include snacks on your shopping list. This will help you resist unhealthy snack choices that may be high in salt, fat and sugar.

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Don’t drink your calories Sugary drinks including energy drinks, fruit drinks, 100% fruit juice, soft drinks and flavored coffees have lots of sugar and little to no nutritional value. Avoid fruit juice, even 100% fruit juice. Although fruit juice has some of the benefits of the fruit (vitamins, minerals), it is high in sugar and low in fibre. Limit highly processed snacks Potato chips, cookies, doughnuts and candy bars add lots of unnecessary calories, fat, sugar and salt to your diet. Unlike healthy snacks, these foods can actually make you feel less energetic. Beware of healthy foods that aren’t healthy at all Some granola, cereal bars and energy bars can be very high in calories, sugar and fats. Be prepared At home: Stock your pantry and fridge with quick, easy snacks: Fresh fruit, cut-up vegetables, plain popcorn, unsalted nuts, granola bars (make your own), and lower-fat yogurt and cottage cheese. At work: Stock your desk drawer with portion-size containers of whole-grain crackers, peanut butter, unsweetened instant oatmeal, , nuts, seeds and cans of tuna. It’s a good idea to keep a knife, fork, spoon and napkins in your desk too. On the go: Pack small baggies with crackers, nuts and seeds, cut up veggies in your purse, glove box or briefcase as you leave in the morning.

For more healthy snack options: https://www.dietitians.ca/Advocacy/Toolkits-and-Resources/Resources-N-S/RecipeeBook-Nutrition-Month-2021?ext=.

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PREP TIME 5 MIN

COOK TIME 15 MIN

SERVINGS 4

HONEY GRILLED SALMON AND ASPARAGUS Ingredients

Marinade: 15 mL (1 tbsp) lower sodium soy sauce 10 mL (2 tsp) vegetable oil 10 mL (2 tsp) liquid honey 10 mL (2 tsp) packed brown sugar 5 mL (1 tsp) chopped fresh thyme or 2 mL (½ tsp) dried thyme leaves 1 mL (¼ tsp) ground pepper Fish and asparagus: 4 salmon fillets (about 565 g/1¼ lb) 1 bunch fresh asparagus, trimmed ½ lemon Directions 1. Prepare the marinade: In a small bowl, stir together soy sauce, oil, honey, sugar, thyme and black pepper. 2. Place salmon in a shallow dish. Pour marinade over top of salmon, spreading evenly. Cover and refrigerate for 15 to 30 minutes, turning once if possible. 3. Lightly spray asparagus with cooking spray and place on preheated and oiled grill on medium high heat. Grill, turning a couple of times until tender crisp. Add salmon fillets and grill for 5 minutes. Discard marinade. Turn salmon over and grill for about 5 minutes longer or until fish flakes easily when tested * . Serve with asparagus. Squeeze lemon over asparagus just prior to serving. Recipe developed by Emily Richards, P.H. Ec. for Health Canada and the Heart and Stroke Foundation. https://food-guide.canada.ca/en/recipes/honey-grilled-salmon-asparagus/

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LENTIL BURRITOS This makes a satisfying vegetarian lunch with a touch of heat Recipe and photo provided by CanolaInfo.org 340 cal Serves 8 Prep time 0h 10m Cook time 0h 25m Total time 0h 35m

Ingredients • 1 1/2 cups (375 mL) split red lentils • 3 cups (750 mL) water • 2 tsp (10 mL) canola oil • 1 medium onion, diced • 1 cup (250 mL) green pepper, diced • 2 large garlic cloves, minced • 1 1/2 tsp (7 mL) chili powder • 1/2 tsp (2 mL) ground cumin • 1 cup (250 mL) water • 6 tbsp (90 mL) tomato paste • 8 whole grain tortillas (6-inch/15-cm in diameter) • 8 tbsp (120 mL) fat-free sour cream, divided • 8 tbsp (120 mL) salsa, divided • 8 tbsp (120 mL) shredded low-fat cheddar cheese, divided

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LENTIL BURRITOS Directions Step 1 Rinse and drain lentils. Bring lentils to a boil in a saucepan, and cover and simmer for 20 minutes— slightly undercooked. Drain if necessary. Step 2 In a sauté pan, sauté onion, green pepper, and garlic in canola oil, but do not brown. Add chili powder, cumin, cooked lentils, water, and tomato paste. Stir for 2 minutes until the mixture starts to thicken. Cover and cook another 5 minutes. Step 3 Lay the tortilla flat, place 1/2 cup (125 mL) of lentil mix in the center, and roll up. Top each burrito with 1 tbsp (15 mL) of sour cream, salsa, and cheese. Nutritional information Per serving (1 burrito) Calories 340 Total fat 6 g Saturated fat 1.5 g Protein 17 g Cholesterol 5 mg Carbohydrates 53 g Fibre 8 g Sodium 420 mg Sugars 5 g Potassium 517 mg Added sugars 0 g https://www.heartandstroke.ca/healthy-living/recipes/meatless-main-dishes/lentil-burritos

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GRILLED CHICKEN PASTA SALAD

Ingredients 4 cups cooked orzo pasta 2 cups skinless, grilled chicken breast, chopped or cut into strips 1 cup cherry tomatoes, chopped 1 cup corn ¼ cup red onions, chopped ⅓ cup green onions, chopped 1 tbsp Dijon mustard 2 tbsp lime juice 1 tbsp olive oil ½ tsp cumin ½ tsp chili powder This recipe makes 8 servings

Directions

Combine orzo, chicken, tomatoes, corn, and both onions in a large bowl. Whisk mustard, lime juice, olive oil, chili powder, and cumin in a small bowl. Pour dressing over pasta and toss to mix. Nutrition Facts: Per 1 serving: 258 calories, 17g protein, 39 g carbs, 4 g fat.

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s s lne

u f d n i

Mindfulness, an ancient practice rooted in Buddhist tradition, has evolved into a secular therapeutic tool, gaining widespread recognition in the healthcare sector for its profound benefits for patients and caregivers. The essence of mindfulness lies in cultivating a nonjudgmental awareness of the present moment. This seemingly simple concept has profound implications in healthcare, a field often riddled with stress, anxiety, and emotional turmoil. 1. Enhancing Patient Care For patients, the journey through illness and healing is often marked by a rollercoaster of emotions, physical discomfort, and anxiety about outcomes. Mindfulness offers a tool to navigate this challenging landscape. By practicing mindfulness, patients can learn to accept their current physical and emotional states without judgment, reducing feelings of stress and anxiety. This acceptance does not imply resignation but fosters a more compassionate self-awareness. Studies have shown that mindfulness can lead to significant reductions in symptoms of anxiety, depression, and chronic pain. For instance, mindfulness-based stress reduction (MBSR) techniques have been effective in mitigating chronic pain and improving the quality of life for patients with conditions like fibromyalgia, cancer, and heart disease. Mindfulness meditation can also enhance the body's immune response, a vital factor in recovery and overall health. 2. Empowering Caregivers The role of caregivers, whether professional healthcare providers or family members, is inherently stressful. The constant demands, coupled with the emotional labor of caring for others, can lead to burnout, compassion fatigue, and even secondary traumatic stress. Mindfulness practice serves as a vital counterbalance to these challenges.

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Mindfulness

For healthcare professionals, mindfulness can enhance patient care by improving focus, empathy, and emotional regulation. It fosters a heightened awareness of their reactions and responses, enabling more compassionate and effective patient interactions. Mindfulness practices can reduce the symptoms of burnout and improve overall job satisfaction, leading to better patient outcomes. Family caregivers also benefit from mindfulness. It helps them manage caregiving's emotional and physical demands, providing a tool to cope with stress and anxiety. By maintaining their well-being, caregivers can be more present and effective, directly impacting the quality of care provided to their loved ones.

3. Building a Mindful Healthcare Environment Incorporating mindfulness into healthcare settings goes beyond individual practice. Creating a mindful healthcare environment involves integrating mindfulness into the culture of care. This can include mindfulness training for staff, mindfulness-based therapies for patients, and a general emphasis on empathy and presentmoment awareness in all interactions. Such an environment not only improves the well-being of patients and caregivers but also enhances the overall quality of care. A mindful approach to healthcare encourages a deeper connection between patients and caregivers, fostering a therapeutic alliance that is crucial for effective healing and care. The importance of mindfulness in healthcare cannot be overstated. For patients, it offers a pathway to cope with illness and enhance their quality of life. For caregivers, it is a crucial tool for maintaining emotional and mental health in the face of demanding roles. As the healthcare sector continues to evolve, integrating mindfulness into care practices promises a more compassionate, effective, and holistic approach to health and wellness.

When we practice mindfulness, we’re practicing the art of creating space for ourselves—space to think, breathe, and between ourselves and our reactions.

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Ask the Professional Maureen Carpenter, CD BSC, RN provides her insight.

Caregiver Burnout As a registered nurse deeply involved in patient care, I've witnessed firsthand the toll that caregiving can take on individuals. The Cleveland Clinic describes caregiver burnout as physical, emotional, and mental exhaustion. It emerges from the daily tasks of caregiving and the emotional weight of managing someone else's health and safety. Understanding caregiver burnout is crucial in this era where information is at our fingertips, especially through social media. Based on insights from the Johns Hopkins Centre and my own experiences, I want to highlight the causes and signs of this burnout, hoping to offer support and awareness to those in the throes of caregiving. Caregivers face immense emotional and physical demands, often in situations where improving the patient's condition is not possible. This prolonged strain can lead to helplessness or hopelessness significantly as the patient's condition deteriorates. The tasks, ranging from physical assistance to complex medical care like wound dressing and medication management, can be overwhelming. It's common for caregivers to experience resentment, fatigue, and a sense of being overwhelmed.

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Ask the Professional Recognizing the signs of burnout is critical. These may include: Feeling easily flustered or frustrated. Persistent fatigue. Forgetfulness or a foggy mind. Quickness to anger and loss of patience. A loss of interest in previously enjoyed activities. Anxiety or depression. Changes in appetite. Blaming others for the caregiving burden. Constant worrying and feeling burdened. Unhealthy sleep patterns. Frequent headaches or flu-like symptoms. Social withdrawal and compassion fatigue. A sense of loss of control. Caring for a terminally ill loved one can also lead to physical symptoms like elevated blood pressure, teeth grinding, heart palpitations, and weight fluctuations. To manage or prevent caregiver burnout, consider the following tips: Don't hesitate to ask for help and accept it when offered. Recognize your limits. I would like you to focus on achievable tasks. Please educate yourself about the patient's condition and empathize with their emotions. Set realistic goals and break tasks into manageable steps. You can use caregiving services such as transport, meal delivery, and house cleaning. Join support groups where you can share experiences with those in similar situations. You can engage in social activities outside your caregiving role to prevent isolation. Prioritize your health. Engage in physical activities and try to maintain a positive outlook. Allow yourself to feel guilt, anger, resentment, fear, and sadness. It's okay not to be strong all the time. Consider respite care options like in-home health aides, day programs, or short-term stays in care facilities. As a nurse, my message to caregivers is this: You're doing an essentially, often unseen job. Acknowledging your challenges is the first step towards seeking the support you need and deserve. Remember, taking care of yourself is not just beneficial for you, but it's also crucial for the well-being of those you care for.

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Resources

Care partners Are you a care partner for a patient? Visit our website for resources that can assist you in helping your patient with a better quality of life living with their diagnosis, and find resources that can assist you as a care partner. Visit www.healcanada.org

Patient Advocacy Groups

Visit our website at www.healcanada.org for resources needed to help your advocacy group grow and assist your community

Stakeholder Resources Visit our website at www.healcanada.org for resources needed to help you in working with advocacy groups

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Join Heal Canada's Patient Advisory Council Be part of the Heal Canada Resource Advisory Council. Provide ongoing feedback on issues relevant to Patient Advocacy in Canada. We are looking for Patients, Care-partners, and General Advocates Send you information to: Admin@healcanada.org or visit our website and fill out our application form and find out more details about time commitment required.

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Share your Patient Journey Story with us! Share your story with us! If you would like to share your story about your journey, as a patient, caregiver, or advocate, send us a short (150 words) description of your journey, for consideration in an upcoming issue! email your submission to: Healcanadamagazine@healcanada.org

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References 1. PSP Solutions. Introduction to Patient Support Programs. Council for Continuing Pharmaceutical Education. 2023. Version: PSP6t.03. http://www.ccpe-cfpc.org/ 2. Respiratory syncytial virus after the SARS-CoV-2 pandemic — what next? | Nature Reviews Immunology 3. 2023_pdf_en.pdf (cancer.ca) 4. Government of Canada establishes Advisory Group to help Canadians living with rare diseases - Canada.ca 5. Post Relapse Survival Rates in Diffuse Large B-Cell Lymphoma | Blood | American Society of Hematology (ashpublications.org) 6. Gandhi UH, Cornell RF, Lakshman A, et al. Outcomes of patients with multiple myeloma refractory to CD38-targeted monoclonal antibody therapy. Leukemia 2019; 33: 2266–2275 7. Imfinzi and Imjudo US prescribing information; 2022. 8. Mesraoua B., Deleu D., Hassan A.H., Gayane M., Lubna A., Ali M.A., Tomson T., Khalil B.A., Cross J.H., Asadi-Pooya A.A. Dramatic outcomes in epilepsy: Depression, suicide, injuries, and mortality. Curr. Med. Res. Opin. 2020;36:1473–1480. 9. Is Cenobamate the Breakthrough We Have Been Wishing for? - PubMed (nih.gov) 10. Hereditary ATTR (hATTR) Amyloidosis Life Expectancy - Rare Disease Advisor 11. Familial amyloid polyneuropathy - Wikipedia 12. Keam SJ (September 2022). "Vutrisiran: First Approval". Drugs. 82 (13): 1419–1425. doi:10.1007/s40265-022-01765-5. PMID 35997942. S2CID 251725617. 13. Generalized Pustular Psoriasis: A Review on Clinical Characteristics, Diagnosis, and Treatment (nih.gov 14. Epidemiology and burden of progressive familial intrahepatic cholestasis: a systematic review Orphanet Journal of Rare Diseases | Full Text (biomedcentral.com) 15. Health Canada. (2019, April 16). Optimizing the use of Real World Evidence to inform regulatory decision-making. Government of Canada. https://www.canada.ca/en/healthcanada/services/drugs-health-products/drug-products/announcements/optimizing-real-worldevidence-regulatory-decisions.html 16. Weldring T, Smith SM. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs). Health Serv Insights. 2013 Aug 4;6:61-8. doi: 10.4137/HSI.S11093. PMID: 25114561; PMCID: PMC4089835. 17. Stanford FC. The Importance of Diversity and Inclusion in the Healthcare Workforce. J Natl Med Assoc. 2020 Jun;112(3):247-249. doi: 10.1016/j.jnma.2020.03.014. Epub 2020 Apr 23. PMID: 32336480; PMCID: PMC7387183.

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