&Health Equity
Two Blueprints for Equitable Access to Medicines in Canada
National Pharmacare and Rare Disease Drug Strategy charts different paths to equitable access, with shared goals and unique challenges.
cines and a variety of contraceptives.
Could the National Strategy for Drugs for Rare Diseases (SDRD) be a counterpoint to National Pharmacare (Pharmacare) in charting a pathway for public access to advanced therapies, particularly, those with potentially high impact and value but reliant on real-world data to validate benefits and risks?
These paradoxical strategies toward universal equitable access to medicines share some commonalities. Both are implemented through bilateral federal/provincial/territorial agreements, and both designate a list of conditions and therapies that provinces should cover. Pharmacare Bill C-64, introduced in February 2024, prioritizes “appropriate use” and patient safety along with “optimizing health outcomes” and “health system sustainability.” The Bill allocates $1.5 billion over five years for universal, single payer coverage of primarily first-line diabetes medi-
The RDDS aims for improved “access to new and emerging drugs” as well as investment in infrastructure.
In contrast, the three-year $1.5 billion Rare Disease Drug Strategy (RRDS), launched in March 2023, mandates coverage of 12 advanced therapeutics targeted for severe and untreated rare conditions. These are potentially life-altering but uncertainties in clinical trial results require monitoring for safety and benefits in real-world usage. The RDDS aims for improved “access to new and emerging drugs” as well as investment in infrastructure to “support enhanced access to existing drugs, early diagnosis, and screening” and, critically, facilitate access as early as possible, for better quality of life. Over time, genetically targeted therapies will become more prevalent for common conditions, Pharmacare may evolve toward the RDDS and the RDDS may become more universal with no co-pays.
How New Treatments Expand the World for PNH Patients
Though he loves to travel, Patrick Hanson usually limits his time away in case he catches a cold or needs a blood transfusion. Recently, however, he travelled to Europe for two weeks. The difference? Hanson is on a new treatment for paroxysmal nocturnal hemoglobinuria (PNH).
PNH is a rare disease of the bone marrow.
PNH causes fatigue, weakness, abnormally pale skin, shortness of breath, and an increased heart rate. People with PNH may also be prone to infections and abnormal blood clotting or hemorrhage.
Managing a difficult diagnosis
Hanson had aplastic anemia for many years, which is a risk factor for PNH. Though the symptoms of the two diseases are similar, Hanson started to notice some new symptoms, including dark-coloured urine. His wife, Nina, did some research and told him to ask his doctor about PNH.
Hanson says with aplastic anemia, he was dependent on blood transfusions to increase his hemoglobin levels and was getting one as often as every week. Hanson’s PNH treatment helped better manage his hemoglobin levels, but
they were still low and would drop every few weeks or months, when he would need another blood transfusion.
Reclaiming health and freedom
“I was always monitoring whether I would need a blood transfusion. If I didn’t have an infection or a cold, my levels would stay up for longer,” he says. “That was why I would only go away for six or seven days at the most. When I changed medication this year, it changed my life. In a few weeks, I had more energy, and my hemoglobin levels were in a normal range. They hadn’t been for 20 years, so that was a miracle for me,” he says.
Hanson wants other patients to learn from his experience and find hope in it. He says rare conditions like PNH don’t get a lot of attention and may not be the first thing that comes to mind for doctors.
“It’s important to educate yourself and to advocate for yourself,” Hanson says. “Learn about new approaches, speak to your health care provider. It can change your life completely. There is hope.”
Breakthrough treatments for paroxysmal nocturnal hemoglobinuria (PNH) offer new hope and better quality of life for patients.
Abigail Cukier
Durhane Wong-Rieger
Learn more about other patient experiences with PNH, scan here: This article was made possible by Sobi Canada.
Self-advocacy and Finding the Right Prosthetic Device CNIB Calls for Universal Access to Eye Exams for All Canadian Children
Lack of access to timely eye exams is leading to significant, lifelong repercussions for children. CNIB is advocating for this to change.
Tania Amardeil
Many children start school without ever having an eye exam — and many parents are unaware that this is an issue.
“A lot of parents think the red eye reflex exam done on infants is sufficient, when in fact the Canadian Association of Optometrists recommends that children have a comprehensive eye exam at six months, before starting kindergarten, and then every year after,” says Suzanne Decary-van den Broek, Vice-President, Central Canada at CNIB.
Advocating for better access
Undiagnosed vision issues can lead to poor academic performance, decreased participation in physical activity, behavioural issues, and reduced social interactions, according to Decary-van den Broek.
According to CNIB, two per cent of preschool-aged children have amblyopia, which may result in permanent sight loss if left undetected or inadequately treated, and 10 per cent have refractive error, which can be corrected with glasses. But children often don’t realize that anything is wrong with their vision — they don’t know any different.
CNIB, a non-profit organization driven to change what it is to be blind today, is dedicated to ensuring all children have access to vital eye care.
“We’re advocating for all children to have access to comprehensive eye exams,” says Decary-van den Broek. “Many provinces, like Ontario, have coverage for the cost of an eye exam for children under 18, so the issue is more about awareness.”
She adds, “We recommend parents visit the Canadian Association of Optometrists’ website at opto.ca. It has a lot of information about the importance of eye exams for kids, how to spot early signs of sight issues, and how to connect with a local optometrist to set up an eye exam for your child.”
Early detection of vision issues means early treatment and better long-term outcomes — allowing all children to thrive inside and outside the classroom.
When it comes to prosthetics like microprocessorcontrolled knees, knowledge is power. Find out what’s available and advocate for what’s best for you.
Katherine Cappellacci
Microprocessor-controlled knees (MPKs) are modernizing the world of prosthetics. By using a microcomputer system, they’re able to control the extension and flexion of a knee joint throughout the stance and/or swing phase of every gait cycle.
There are many types of MPKs out there. As patients and caregivers, it’s important to explore all available prosthetic options. Always advocate for your health and find companies with which your personal goals align. Exercise and explore all funding possibilities, including private insurance, government funding, and non-profit funding. Remember that you have the power to optimize your prosthetics journey every step of the way.
One industry leader to consider is Ottobock. For over 100 years, they have been committed to improving and restoring independence for people with mobility challenges.
Forward-thinking mechanics
Today, they have MPKs for all levels of activity and rehabilitation. Available models include the C-Leg (the world’s most studied and most trusted MPK), the Kenevo, the Genium, and Genium X3. This September, they’re launching the newest, most-technologically advanced MPK. The Genium X4 will provide unmatched functionality with ample customization options and cuttingedge digital workings.
Ottobock works closely with Prosthetists and Orthotists to offer a wide range of technologically advanced products including microprocessor hands, mechanical knees, feet, and liners. A “people first” company, their vision and efforts align with and are inspired by the humans they help.
Early adoption is the key to patient success. Be your own advocate and research options like these to find the MPK most suited to you.
Assistive Equipment Is a Necessity, Not a Luxury, for People with ALS
Government programs for ALS funding and essential equipment fail to address urgent, complex needs — leaving charities to fill critical gaps in care.
Adiagnosis of amyotrophic lateral sclerosis (ALS) is devastating for the person receiving it and their loved ones. People struggle to navigate their journey, overwhelmed by a terminal diagnosis.
ALS progressively paralyzes people, as their brain can no longer communicate with their muscles. The reality is a swift decline in the ability to move, talk, eat, swallow, and eventually breathe. With no cure and few treatment options, 80 per cent of people with ALS die within two to five years.
For the 1,400 Ontarians living with ALS and their families, a referral to the ALS Society of Canada’s (ALS Canada) Community Services Program is a crucial first step. ALS Canada Community Leads throughout the province offer in-person support and guidance to help navigate the complexities of the disease and facilitate connections to health professionals, community resources, and equipment to help maintain independence, safety, and quality of life.
Securing access to critical services
As the disease rapidly progresses, a succession of mobility and communication devices become essential. While other provincial governments — British Columbia, Nova Scotia, and Quebec — fully fund these critical supports, Ontario does not. Due to its limited scope, the Ontario Assistive Devices Program (ADP) leaves people living with ALS at increased risk of injury and additional strain on caregivers.
Through the generosity of donors, ALS Canada’s Equipment Program has been there to provide equipment cost-free to individuals for as long as they need it. But is this just widening the gap rather than finding permanent solutions?
“The support required for people living with ALS is substantial and increases over time with the progression of the disease, which can lead to significant emotional and financial challenges,” says Tammy Moore, CEO of ALS Canada. “We’re grateful to our donors, whose generosity allows us to provide community support and equipment, but as demand increases for services, the Ontario government must step in to ensure that access to these critical services, which augment the health care system and ultimately save health care dollars, can continue.”
Advocating for change
Having access to equipment helps maintain my dignity and allows me to stay at home, which ultimately saves the province money.
In February 2024, people affected by ALS, health care professionals, and ALS Canada rallied at the Ontario Legislature to advocate for $6.6 million in funding to support the Ontario Provincial ALS Program — funding for clinics, equipment, and community services programs.
Despite a clear solution to save health care dollars, Ontario’s 2024 Budget did not include the much-needed funding, leaving families and advocates feeling confused and frustrated.
“Having access to equipment helps maintain my dignity and allows me to stay at home, which ultimately saves the province money,” says Mike Cels, who was diagnosed with ALS in 2017. “I cannot stress enough how valuable the care has been for me and my family. Relying solely on donor funding puts this important program at risk.”
ALS Canada remains committed to supporting the ALS community and will continue efforts to secure the necessary funding from the Ontario government to help reduce health care costs and improve the lives of people affected by ALS.
This article was sponsored by Ottobock
Justin Edmonstone
Photo of Mike Cels with his wife, Carmen, and their two children, Jonathan, and Cynthia.
How The Kidney Foundation Is Advocating for Better Care
The Kidney Foundation of Canada is on a mission to raise awareness about kidney disease and improve patient access to quality care.
Did you know that your kidneys are just as important to your health as your heart or your lungs? For the 1 in 10 Canadians affected by kidney disease, this is a sobering reality to confront. People living with kidney conditions face daily challenges managing their health and life-altering consequences if their disease progresses to kidney failure.
Kidney disease can range from mild to severe and in some cases leads to kidney failure, also known as end-stage kidney disease. When the kidneys can no longer filter blood, two life-saving treatments exist: dialysis and transplant. Dialysis is gruelling — it’s exhausting, time-consuming, and financially draining. Transplantation is the best treatment option for many patients with kidney failure, but with over 2,400 people in Canada currently awaiting kidney transplants, the wait for a suitable donor can be long and uncertain.
With so many Canadians impacted, the need for support, education, and advocacy has never been greater. That’s where The Kidney Foundation of Canada comes in.
Improving patient access
For 60 years, The Kidney Foundation of Canada has been guided by a vision of excellent kidney health, optimal quality of life, and a cure for kidney disease. Its work focuses on ensuring access to care through both national and local efforts, including advocating for new therapies, supporting patients, funding innovative research (including through the KRESCENT program), and advocating for health care policies that
It’s critical that patients have a voice and a seat at the table.
improve the lives of Canadians affected by kidney disease.
“Patients and caregivers are at the heart of everything we do,” says Carrie Thibodeau, National Director of Programs and Public Policy at The Kidney Foundation.
The Kidney Foundation also works to raise awareness about prevention, early diagnosis, and organ donation and transplantation. Initiatives to improve the lives of those suffering from kidney failure through increased organ donation include the creation and administration of the Living Organ Donor Reimbursement Program and leadership of the Living Donor Circle of Excellence program in Canada, both of which increase financial support for kidney donors. This helps to alleviate the costs associated with donation and encourage more people to consider becoming living organ donors.
A new national framework for kidney disease
One of The Kidney Foundation’s most important advocacy initiatives currently underway is the development of a new national framework for chronic kidney disease. “Our ultimate goal is recognition and prioritization of kidney disease in Canada” says Thibodeau. “We’re focusing on prevention and early detection, equitable access to quality care, and research and data.”
Indeed, a public survey was launched to inform the framework.
“It’s critical that patients have a voice and a seat at the table,” says Thibodeau. “The purpose of the survey was to understand their kidney journey, and to seek their recommendations on improving kidney care. The completed framework will reflect the priorities that were identified by the patients and other members of the kidney community that we’ve spoken to.”
Thibodeau hopes that the framework will lead the government to recognize chronic kidney disease as a distinct disease, as opposed to a complication of other conditions like diabetes or hypertension, and lead to health policy decisions that improve outcomes for people affected by kidney disease.
EMPOWERING PATIENTS AND DONORS ACROSS CANADA
The Kidney Foundation is leading impactful advocacy efforts nationwide to support and empower those affected by kidney disease. Here are a few examples of its recent successes and ongoing initiatives:
Advocating on Parliament Hill
Patients, caregivers, and living donors from across Canada took their message to Parliament Hill Day in April, meeting with Ministers, MPs, senators, and government officials to increase awareness of kidney disease. The ultimate goal is to establish a properly funded and nationally recognized system for quality kidney care.
Addressing the Financial Burden of Kidney Disease
The Kidney Foundation plays a leading role in advocating for patients and families coping with the financial burden of kidney disease. One recent success in Alberta was securing continued funding for the Home Hemodialysis Utility Grant (HUG) and the Dialysis Transportation Program, which help ease the financial strain for dialysis patients accessing treatment.
Increasing Access to Kidney Care
In Quebec, The Kidney Foundation of Canada collaborated closely with the Atikamekw of Manawan to improve access to kidney care and raise awareness of risk factors for kidney disease. This involved information sessions, including radio broadcasts, screening clinics, and educational activities for youth on healthy lifestyle habits.
Promoting Living Donation
The Living Donor Circle of Excellence program recognizes employers that support the lost wages of organ donors during their recovery. This initiative, spearheaded by BC/ Yukon Branch in partnership with the Canadian Transplant Society and program founder the American Society of Transplantation, reduces financial barriers for living donors and is available across Canada. Recent efforts to grow the program were supported by the BC government.
Tania Amardeil
How Pfizer Puts Patients First and Leads with Integrity
Pfizer is leading the way in patient-centred care, prioritizing integrity and transparency in every collaboration.
Tania Amardeil
It’s a simple yet revolutionary concept in health care: listen to patients and put them first. This patient-centred approach is critical to driving innovation, improving patient outcomes, and building trust between patients and the medical community — and Pfizer Canada is leading the way.
“Pfizer is committed to putting the patient at the centre of everything we do,” says Manon Genin, Director of Patient Advocacy at Pfizer Canada. “We believe that patient centricity exists at Pfizer when we listen and learn from the patient perspective, acting as partners with accountability and integrity, to deliver outcomes that matter most to patients and those involved in their care.”
Embracing patient-centricity
Pfizer’s commitment to patient centricity can be seen through its unwavering dedication to meaningful collaborations with patient advocacy groups, its innovative patient engagement programs, and its transparent approach to addressing patient needs at every stage of care.
In the PatientView survey, an annual global study that gives patient advocacy groups an opportunity to comment on and assess the pharmaceutical industry’s performance, Pfizer Canada was recently ranked number one by 100 Canadian patient advocacy groups, highlighting the company’s dedication to fostering strong relationships with patient groups.
Pfizer’s Patients in Focus Week, an annual week-long activation taking place from September 30th to October 4th this year, is another example of Pfizer’s commitment to patient-centricity.
“This annual event celebrates and showcases our work with patients and patient organizations around the world,” says Genin. “It’s an opportunity to learn from each other, share best practices, and recognize the achievements and contributions of our colleagues and partners in patient advocacy.”
Pfizer’s commitment to ongoing collaboration with patient advocacy groups
By working together, we can develop more innovative medicines and solutions that address patients’ unmet needs.
— along with its global resource platform, the Patient Advocacy Leadership Collective — can be credited to the organization’s recognition of the pivotal role that patients, caregivers, and advocates play in its mission.
“These collaborations help Pfizer gain a better understanding of patient needs, challenges, and priorities,” says Genin.
“By working together, we can develop more innovative medicines and solutions that address patients’ unmet needs.”
Here are some of the patient advocacy groups that Pfizer is currently collaborating with to enhance patient engagement and empowerment, improve patient outcomes and quality of life, and drive patient-centric innovation and research.
The Quebec Cancer Coalition: Pioneering Patient-Centric Cancer Care
We’ve done many projects with Pfizer in line with our mission, including improving access to clinical trials in oncology, supporting patients’ and caregivers’ sexual health and well-being, preventing avoidable cancers and environmental risk factors, improving access to precision medicine, and more,” says Eva Villalba, Executive Director of the Quebec Cancer Coalition. “The project that we’re most proud of is our Value-Based Health Care (VBHC) Demonstration Project in Colorectal Cancer (CRC), in collaboration with several industry partners, the first of which was Pfizer Canada.”
The Quebec Cancer Coalition’s mission is to give people affected by cancer a voice and to improve public policies for and with them, and the VBHC Demonstration Project in CRC is an example of that. “The project is already having a profound impact on cancer care in Quebec,” says Villalba.
The Women’s Health Coalition: Empowering Women’s Voices in Health Care
Members of the Women’s Health Coalition (WHC) enjoyed the opportunity to provide insights into beliefs, fears, and questions about vaccines during pregnancy through a Pfizer collaboration. “Women who are pregnant have a lot to think and worry about, but they still need to be included,” says Carmen Wyton, Chair, President, and Founder of the WHC. “And every woman’s experience is unique. The best opportunity for improved health outcomes lies in women taking authority of their health journey. Pfizer’s consideration of the patient experience and the resources made available are empowering.”
With Pfizer’s support, the WHC was also able to engage patients through its webinars and as experts for its podcast series.
Mood Disorders Society of Canada: Harnessing AI to Transform Mental Health Support
Interested in implementing AI to support people with mental illness to find appropriate and safe resources for their needs, Mood Disorders Society of Canada (MDSC) reached out to Pfizer. It soon received seed funding support for a project named MIRA. “Without the generous support of Pfizer this innovative project would not be possible,” says Dave Gallson, National Executive Director of the MDSC. “This project has had a positive impact on the mental health community and supports other patient organizations’ needs as well.”
Pfizer is also a long-time sponsor of the MDSC’s Defeat Depression mental health national campaign. “The support we receive from Pfizer helps to support our efforts to improve mental health literacy, reduce stigma, and support community mental health organizations,” says Gallson.
Manon Genin Director of Patient Advocacy, Pfizer Canada
Carmen Wyton Chair, President, & Founder, WHC
Eva Villalba Executive Director, Quebec Cancer Coalition
Dave Gallson National Executive Director, MDSC This article was made possible by the support of Pfizer Canada.
Dealing with a mental health issue or a gambling or substance addiction can feel very lonely. Not knowing where to seek help can make it even more difficult. ConnexOntario aims to ensure that no one goes through it alone.
Funded by the Ontario government, ConnexOntario provides 24/7 access, 365 days a year, to reliable information about mental health, gambling, and addiction services for children, youth, adults, and seniors.
Instead of using Google to search for appropriate services, Ontario residents can access accurate, reliable information on services that are right in their community from a database of more than 5,000 programs.
Services available in more than 130 languages ConnexOntario is free and available through confidential phone, chat, texting, and email and can provide service in more than 130 languages, including live translation of web chats and text messages.
When you place a call or send a message to ConnexOntario, you’re connected with a trained professional who asks for
Pneumonia is an infection of the lungs that can cause mild to severe illness in people of all ages. But some people are at increased risk for getting pneumonia and for complications from the disease, including adults over age 65, people with chronic lung disease, people who have illnesses such as diabetes or chronic lung disease 1 , people who smoke, people who are immunocompromised due to cancer treatment or taking certain medications, and people with other serious illnesses such as heart disease2
In addition to its own possible complications, pneumonia can lead to the worsening of pre-existing conditions, hospitalization, or even death. In fact, according to the Canadian Institute for Health Information, pneumonia was in the top 10 reasons for admission to hospital for all ages in many provinces in 2021-2022 and that same year, it was the number 10 reason for hospitalization for adults aged 65 and over across Canada3. It was also the number eight cause of death in 2018 amongst people living in Canada who were between the ages of 65 and 74 years at time of death4
Pneumonia can seriously impact quality of life
Dr. Marla Shapiro, a family doctor and professor in the Department of Family
information about your concerns to provide the right support. They listen without judgment and then recommend or refer to local programs, such as treatment services, crisis lines, self-help groups, or distress centres.
Sometimes you’re referred directly to a service, while others receive contact information and help with the referral process.
Most of the programs are funded by the Government of Ontario. Team members will also listen, offer support and basic education, and help you get started with coping strategies.
New user-friendly website features blogs, service directory
A recent revamp has also made the ConnexOntario website more userfriendly. It features blogs, a service directory, and information on its partnerships, such as Good2Talk, which is a free, confidential helpline that provides professional counselling, mental health and addictions information, and connections to local resources for post-secondary students.
ConnexOntario also aims to help governments, educators, researchers, and mental health professionals improve services
across the province. With the largest, most comprehensive mental health, gambling, and addiction services database in the province, ConnexOntario provides data health planners to identify system trends and inform the ministry about service gaps.
The information assists health systems, governments, and policymakers in developing mental health, gambling, and addiction resources. The service has also recently updated its database inclusion criteria to reflect the province’s diverse population and help ensure Ontarians receive culturally sensitive care.
This collaboration with community and government organizations also ensures the ConnexOntario team has the most up-to-date information on program wait times and the availability of new services.
No matter how difficult your situation may be, ConnexOntario is available to help and to provide a safe, non-judgmental space to share your concerns and ease your path to recovery and well-being.
and Community Medicine at the University of Toronto, says that for seniors, pneumonia can truly be life-changing. “Your pre-pneumonia lung capacity may not return. You may have less energy and become more sedentary and lose your independence. It can cause increased frailty. It can impact your quality of life,” she says.
Dr. Shapiro notes that recurrent hospitalization with pneumonia in frail patients 65 years of age and older may be associated with a higher rate of death one year after being discharged5. “Also, in older people and adults hospitalized with pneumonia, there’s a higher rate of cardiovascular complications. For example, following hospitalization for pneumonia, there’s roughly a 19 per cent chance of a negative cardiac event, such as heart failure 6 ,” she says. But one way to help prevent pneumonia is vaccination7,8,9,10.
More awareness needed regarding pneumococcal vaccination
Most adults only receive one pneumococcal vaccination in their lifetime, while those with risk factors may receive another dose. The National Advisory Committee on Immunization set a target that by 2025, 80 per cent of adults aged 65 and over have one dose of pneumococcal vaccine11. But uptake is slow.
In 2021, 54.8 per cent of seniors 65
and older had received the vaccine, along with 26.2 per cent of adults aged 18 to 64 with chronic medical conditions, such as asthma, lung disease, diabetes, and liver and heart disease12
“There’s a lack of awareness. Many adults don’t even know there are pneumococcal vaccines. Others don’t think they’re recommended,” says Dr. Shapiro.
Vaccination is a strategy to help protect yourself
There has been significant progress made to help protect against pneumonia with the introduction of pneumococcal vaccines. However, the pattern of disease in adults has changed due to the benefit afforded to adults from routine childhood vaccines. Vaccination is still recommended in adults to help protect against pneumonia 13
Older adults or younger adults with chronic conditions can ask their doctor about pneumococcal vaccination, Dr. Shapiro says. Other ways to help prevent pneumonia may include washing your hands frequently, quitting smoking and maintaining your general health such as a healthy diet, rest, and regular exercise.
Abigail Cukier
The New Program Connecting People with Dementia to Community Supports
The success of the DREAM program in diverting undiagnosed or non-acute dementia patients from hospital admission underscores the need for its expansion.
Christina Stergiou-Dayment Chief of Programs & Clinical Operations, Alzheimer Society of Ontario
Janine Reimer Manager of Clinical Programs & Services, Alzheimer Society of Brant, Haldimand, Norfolk, Hamilton, Halton
The number of Canadians living with dementia is growing and will continue to do so. “In Ontario alone, over 300,000 people are currently living with some form of dementia and this number is expected to reach 2.9 million by 2050,” says Christina Stergiou-Dayment, Chief of Programs and Clinical Operations at the Alzheimer Society of Ontario.
Early detection allows for advanced care planning, which is the gateway to better outcomes and cost-effective management within the health care system. “We know that people living with dementia can be well-managed at home with appropriate community supports and that the majority of them prefer to stay there for as long as possible, where they can be surrounded by their families and preserve their quality of life,” says Stergiou-Dayment. However, doing that successfully requires robust primary care infrastructure and services that can link patients to timely diagnosis and community supports.
Better supporting dementia patients
Current gaps in primary care and people’s understanding of dementia are preventing many people living with dementia from receiving that critical early diagnosis and the supports to live well at home. They or their family members may not recognize their symptoms and those who do may not understand how to navigate the health care system to obtain a cognitive assessment, diagnosis, and home care support. Additionally, primary care providers may have limited knowledge of the community support infrastructure and limited time to conduct full investigations leading to diagnosis. “Add to that the fact that wait times to see a dementia specialist can range from one year to 18 months,” says Stergiou-Dayment.
As a result, dementia patients frequently end up in hospital emergency departments (EDs) when a crisis occurs or their care partner feels overwhelmed. From there, they may be admitted and occupy a hospital bed without needing acute care until community supports or a long-term bed are available. “These patients account for half of the alternative level of care days in Ontario with over 3,000 hospital beds being used unnecessarily on any given day,” says Stergiou-Dayment.
Introducing the new DREAM program
This is the gap that the DREAM (Dementia, Resource, Education, Advocacy, and Mentorship) program aims to fill. “The DREAM program began in 2021 at
Brantford General Hospital after ED staff noticed a significant increase in the number of people with dementia coming in without a diagnosis or medical reason, other than the care partner being overwhelmed and unable to access the resources they had prior to COVID-19, like the adult day program,” says Janine Reimer, a registered nurse and Manager of Clinical Programs and Services at the Alzheimer Society of Brant, Haldimand, Norfolk, Hamilton, Halton.
Through DREAM, a staff member from the Alzheimer Society with dementia training and knowledge of community resources is embedded in the hospital ED and tasked with diverting non-acute patients living with dementia away from hospital admission. This individual finds out where patients are in their care journey and what they need, and then connects them to resources available through the local Alzheimer Society, such as care navigation, respite services, behaviour support, and social programming. Diverted patients are then able to go home with the supports they need, thereby greatly reducing the risk of repeat ED visits and admissions, improving patient outcomes, and saving health care dollars and resources.
The DREAM program also provides emergency staff with strategies and tools to help manage some of the patients’ behavioural challenges, such as music players, iPads, and various activities. “This helps keep the patients calm and reduces the need for staff to have to use sedation, medication, or restraints to manage them,” says Reimer. And it appears to be working. “At Brantford Hospital, the percentage of admission rates for someone with dementia in 2019 was 58 per cent. So far in 2024, it’s 26.7 per cent, so that’s a significant drop,” she says.
DREAM needed across Ontario
Since its inception, the DREAM program has expanded to 15 hospitals across Southwest Ontario. Given its initial success, advocates hope to see it expanded across the province. “It’s a simple solution that’s cost-effective, plus you’re ensuring the safety of individuals,” says Reimer. “With the number of Canadians with dementia who live in their own home expected to increase from 55 per cent today to 62 per cent by 2038, we need to have adequate home care and community supports available across the province,” adds Stergiou-Dayment.
People who have benefitted from the DREAM program or feel they would benefit are encouraged to engage with key decision-makers and advocate for its expansion.
Anne Papmehl
This article was made possible by the support of Eisai Canada.
How Ontario Could Lead Access to Alzheimer’s Medicines
As Ontario works to better prioritize public access to new medicines, disease-modifying Alzheimer’s medicines must be prioritized.
Tania Amardeil
Alzheimer’s disease is on the rise amongst the Canadian population.
“The numbers are growing,” says Dr. Sharon Cohen, a neurologist specializing in Alzheimer’s disease (AD) and Medical Director of the Toronto Memory Program, Canada’s largest memory clinic for AD and the largest clinical research site for AD. “This is an all-too-common disease affecting many Canadians.”
The Organisation for Economic Co-operation and Development reports that over 35 million people worldwide had dementia in 2010. According to Statistics Canada, approximately 750,000 Canadians are living with AD or another form of dementia, with this projected to increase to 1.7 million by 2050.
Approximately 299,000 Ontarians live with dementia, two thirds due to AD. “By the end of this decade, we expect we’ll have an additional 100,000 Ontarians living with dementia and by 2050 we could be tripling that amount,” says Dr. Cohen.
Health care system challenges
The pipeline from a new medicine’s development to its inclusion on Canadian public formularies is often painstakingly slow.
“It takes a long time — often up to two years — for medications that are already approved by Health Canada to get cost coverage, which is really tragic, especially for progressive diseases like AD,” says Dr. Cohen.
There are challenges, however. “Early detection and diagnosis are crucial for making effective use of the new disease-modifying treatments,” says Adam Morrison, Senior Director of Public Policy and Partnerships at the Alzheimer Society of Ontario. “In Ontario, people often wait years for a formal dementia diagnosis.”
“We do have the technology now to diagnose very early — amyloid-PET scans, spinal fluid assessment, and, soon, blood tests,” says Dr. Cohen. “The problem is that we don’t have cost coverage for these tests and we don’t have enough availability.”
The impact of new treatments
Long wait times to see a dementia specialist, delayed referrals, and patient stigma also contribute to diagnostic delays. The result is that patients are being left behind, especially those who live in rural or remote areas or who have cultural or language barriers.
As Ontario works to better prioritize public access to new medicines, it’s clear timely access to AD treatments would have broad impacts not only on patients and care partners but on Canada’s society and economy at large.
Reducing ER visits, hospital stays, and long-term care could save society millions.
This delays access for patients without private insurance. It can also mean that by the time a new treatment is covered, their disease may have progressed past the point of eligibility, losing a crucial window for early intervention.
Premier Doug Ford recently addressed this issue, vowing to improve timelines. “Canada currently ranks last in the G7 in the time it takes to approve and provide patients access to innovative and often life-saving medicines,” he said. “This needs to change.”
Prioritizing public access
Canada currently has two disease-modifying AD treatments going through the approval process at Health Canada. Prioritizing public access to these innovative treatments is important for patients and caregivers alike. Since the new medicines don’t just treat AD symptoms but in fact slow the progression of the disease, there’s a huge opportunity to relieve the burden on caregivers and to keep AD patients active, engaged members of their communities, families, and even workplaces for longer.
“Reducing ER visits, hospital stays, and long-term care could save society millions,” says Dr. Cohen. Morrison adds, “175,000 care partners provide 4.8 million hours of weekly care, costing tax payers about $30 billion annually.” According to a study commissioned by the Alzheimer Society of Ontario, Ontario could save nearly $10 billion over 20 years in avoided costs with the introduction of disease-modifying AD treatments.
Advocating for change
Speeding up access timelines to treatments in order to improve the lives of patients and society requires strong partnerships and collaboration between clinicians, policymakers, and industry.
“These partnerships are vital to success,” says Dr. Cohen. “We learn from each other and not all goals are going to be attained all at once, so we have to be working together to prioritize the immediate groups who need urgent access and then expand from there.”
Canadians can raise their voices to advocate for equitable access to all innovative treatments, helping to drive change. “We need all hands on deck to push and to advocate,” says Dr. Cohen. “Share your personal stories and your experience,” encourages Morrison. “Make your voice heard. And get educated. The Alzheimer Society of Ontario’s Advocacy College is a great place to get started and to learn about grassroots advocacy.”
Dr. Sharon Cohen Neurologist & Medical Director, Toronto Memory Program
Adam Morrison Senior Director of Public Policy & Partnerships, Alzheimer Society of Ontario
Shield Your Health This Fall To Breathe Easy All Season Long
As we head into the cold weather season, it’s time to consider which vaccines we need to protect ourselves against respiratory infections.
Anne Papmehl
Though we are now officially post-pandemic, we are entering the time of year when respiratory infections are on the rise. “The months of September, October, and November herald the onset of our flu season as well as other viral illnesses like covid and respiratory syncytial virus (RSV),” says Dr. Marla Shapiro, C.M., Professor in Family Medicine, University of Toronto, and a specialist in Preventive Medicine and Public Health. “Another common respiratory infection we tend to see in the colder months is bacterial pneumonia,” says Dr. Shapiro.
Why the rise in infections during the colder season?
“A lot has to do with the fact that people are going back to work or school, spending more time indoors, and are in closer contact with other people,” says Betty Golightly, an Albert-based pharmacist.
Age and existing diseases are risk factors
One potential complication of viral respiratory infections is developing a secondary infection. “This is where you might get a bacterial infection on top of your viral infection, so now you’re dealing with more than one infection at a time,” says Dr. Shapiro.
A main risk factor for severe illness or complications from respiratory infections is age. “While it’s super important to try to stay active and healthy as we age, there’s a natural waning of our immune systems that starts around age 50 and that puts you at higher risk,” says Golightly.
The risk increases with the number of pre-existing diseases or comorbidities you have. “These include things such as cardiovascular conditions, lung conditions like asthma and chronic obstructive lung disease (COPD), diabetes, kidney disease, and obesity,” says Golightly. “We know that the older you are and the more underlying illnesses you have, the higher the likelihood of getting a more severe episode of the disease or an exacerbation of an underlying illness,” adds Dr. Shapiro.
There can also be long-term health effects. “We often find that six months after their RSV infection, for example, many patients still haven’t returned to their pre-illness state,” says Dr. Shapiro. “They may have significant residual shortness of breath, fatigue, loss of energy, and difficulty with daily living activities,” she says. Finally, “the post-infection inflammation can result in new health conditions, such as heart attack, stroke, or even shingles,” adds Golightly.
Preventing severe disease and complications Prevention is key to maintaining good health over the cold season and avoiding problems. “You don’t want to find out by having that illness that you’re the individual who is going to have a particularly severe outcome or be left with ongoing residual complications,” says Dr. Shapiro.
Vaccines play a critical role in protecting us from respiratory illness. “We now have multiple vaccines aimed at preventing or at least attenuating each of
these four illnesses so that the course is not as severe,” says Dr. Shapiro.
Determining which vaccines are best at protecting you is an individual matter and best done in consultation with your healthcare provider. “I think being informed is the single most important thing you can do to advocate for yourself and having a conversation with your healthcare provider is the best way to do this,” says Dr. Shapiro. “Whether it’s with your primary care provider or a pharmacist, you want to have that conversation in terms of your personal risk and what is good for you as an individual, looking at your age, health status, and any comorbidities you may have,” says Dr. Shapiro.
Barriers reduced through new public funding
While influenza and COVID-19 vaccines are publicly funded and therefore free of charge, this hasn’t been the case for the RSV and pneumonia vaccines. However, new public funding from most provinces and all territories has been put in place for eligible at-risk groups to have access to the RSV and pneumonia vaccines. “From a health equity perspective this is not only great news to the individual but also for society, because the more people we vaccinate, the more we get herd immunity and protect everyone,” says Dr. Shapiro.
And with most pharmacists across Canada now able to administer vaccines, this is also good news for patients who lack a primary care provider or live in underserved or rural communities.
“For many of these people, it’s easier to find a pharmacy than a public health clinic or physician, so this opens the door for these high-risk individuals to have access to these publicly-funded vaccines,” says Golightly.
This article was made possible by the support of Pfizer Canada.
Dr. Marla Shapiro, C.M. Professor in Family Medicine, University of Toronto
Betty Golightly Pharmacist