Empowerment
Together, Let's Drive Improved Drug Access for Rare Diseases
e-Prescriptions Boost the Safety and Efficiency of Canada’s Health Care System
For patients, prescribers, and pharmacists, a digital option is superior to a paper one.
Michelle Sponagle
We live in a digital world, and in recent years, it has expanded to include prescriptions at an increasing rate. Canada Health Infoway (Infoway) is helping to lead the way in transforming health care through innovative digital solutions that increase patients’ ability to access health services and receive the medications they need.
One such solution is PrescribeIT®, a national e-prescribing service launched by Infoway in collaboration with Health Canada. In a short time, it has changed the way Canadians get their medications. It allows prescribers to electronically transmit a prescription directly from an electronic medical record to the pharmacy management system of a patient’s pharmacy of choice. It’s a safer and more secure way to handle medications by enabling the digital transmission of prescriptions.
Benefits patients and health care professionals
The system is recognized by both patients and prescribers, including doctors, nurse practitioners, and pharmacists, as a better option. Recent data shows that 83 per cent of Canadians prefer having a prescription sent directly to their pharmacy without receiving a paper prescription. Meanwhile, prescribers said that PrescribeIT® reduces paperwork (83 per cent) and allows them to provide more efficient care (83 per cent).
Pharmacists also feel more confident with a digital medication system, saying it reduces stolen or fraudulent prescriptions and it improves legibility and completeness. Consider this: pharmacists dispense about 750 million prescriptions each year, according to the Canadian Pharmacists Association. It emphasizes the importance of PrescribeIT® and how Infoway is making a positive impact in how Canadians manage medications more efficiently. To date, the digital system has successfully handled tens of millions of prescriptions.
Canada’s rare disease patient community is leveraging a $1.5-billion drug strategy to drive accelerated sustainable drug access for rare diseases and beyond.
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It’s Time to Change the Reality of an ALS Diagnosis
Equitable, affordable, and timely access to approved ALS therapies is an urgent issue for people living with ALS.
Tammy Moore, CEO, ALS Society of Canada
The ALS community measures time not by months or years, but by loss — loss of function and loss of life.
Amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease or motor neuron disease), a fatal neurodegenerative disease, results in progressive paralysis and, eventually, loss of the ability to move, speak, and breathe. Any person has a 1 in 300 chance of receiving a diagnosis in their lifetime. There is no cure, and few treatment options exist for most people.
Given how quickly ALS can progress, access to treatments as soon as possible is critical. Long drug access processes — some taking more than three years — further complicate this, meaning that in the time it takes for someone to get access, we will have lost thousands of people to this devastating disease.
This article was sponsored by PrescribeIT®
To change this reality, the ALS Society of Canada advocates for equitable, affordable, and timely access to approved therapies by amplifying the voices of the ALS community and influencing policy changes.
Together, we urge the federal, provincial, and territorial governments to improve access to therapies by:
Creating an environment that makes Canada a country of choice for industry to bring new therapies from research and development to clinical trials, through to new drug submissions;
• Streamlining and increasing transparency of regulatory processes and timelines; and
Asking governments to collaborate to address the health care and funding inconsistencies across Canada resulting in inequitable access to therapies.
With time as a precious resource for people living with ALS, they simply can’t wait. We must act now.
Why Patient Voices Play a Critical Role in Cancer Research
The next generation of cancer research aims to increase patient-researcher collaboration to develop more targeted, individualized treatment options and better patient experiences.
Sonya Friesen
The Ontario Institute for Cancer Research (OICR) works to advance cancer research and transform care for more than 14 million people diagnosed worldwide each year
Beth Ciavaglia, Chair of the OICR Patient and Family Advisory Council and breast cancer survivor, explains why patient voices are critical to the future of cancer diagnosis and treatment.
What is translational research?
Translational research applies findings to the real clinical environment and transitions those findings into the hands of the patients, wherever health care is being delivered. It recognizes that research is not just on the periphery of care, but delivering care that can be integrated into
day-to-day practice with the patient at the centre.
What role can patients play in cancer research?
Patient-researcher collaboration integrates a patient directly into a research team, giving them a seat at the table in the research process. The goal is that the patient’s voice will help offer researchers a unique, individualized perspective, leading to better, more targeted, and impactful results.
Why do patient voices matter?
Cancer is a time when you’re feeling vulnerable. To be able to have any say in your day-to-day life is vitally important. Each person’s cancer is individual. Patients need to feel like they’re decision-makers.
What is precision medicine?
Precision medicine recognizes that each person’s cancer is unique to that individual and must be treated accordingly. It explores the make-up of individual cancer at a genetic level, investigating treatment options for each specific situation. The goal is to deliver a more effective, customized or personalized treatment plan with fewer long-term negative outcomes for patients.
How is personalized care giving the cancer community a glimmer of hope?
As cancer treatments become more individualized and less invasive, the hope is that patients will live life with limited to no side effects. When working in the cancer research space, you’re always filled with hope that your contribution is going to make a positive impact in some way.
Beth Ciavaglia Chair, OICR Patient & Family Advisory Council
Tammy Moore CEO, ALS Society of Canada
Patients Deserve Faster Access to Innovative New Medicines
Long wait times for new medicines in Canada, averaging two years, hinder patient access and limit life sciences investments.
Innovative Medicines Canada
Nolan Caskanette was only six weeks old when his mother, Kerri Beirnes, noticed he couldn’t lift his head during tummy time — something his sister Fiona had done easily when she was the same age. By the time Nolan was diagnosed with spinal muscular atrophy (SMA) type 1 at six months old, he was already in extreme respiratory distress due to a virus and needed a tracheostomy to clear his airway and a gastrostomy tube for feeding.
SMA is a rare genetic neuromuscular disease that causes muscles to weaken over time. Beirnes says that before treatments became available for SMA, most patients with type 1 didn’t live to see their second birthday.
Fortunately, only a few months before Nolan was diagnosed, a new treatment for SMA was approved in Canada and he was given early access by a pharmaceutical company through a compassionate use program. Today, although he still needs an electric wheelchair and 24/7 monitoring of his airway, six-year-old Nolan goes to school, plays in a bowling league, and is an avid Spider-Man fan.
While Nolan’s story is a powerful example of why it’s important to ensure fast access to approved new treatments, it’s not the reality for many patients. Canadian patients wait two years, on average, for access to new drugs through their public drug plans, which is a year longer than patients in most peer countries. This delay not only harms patients and their loved ones, it also limits Canada’s attractiveness for future life sciences
For many patients, every month that goes by without access to an approved new treatment has the potential to decrease their quality of life and, in the worst cases, lead to loss of life.
investments, clinical trials, and drug launches.
Canada’s complex drug access process
The long wait times for access to new medicines are due to the complexities within Canada’s public drug access process. The process starts with a drug submission to Health Canada, which evaluates the safety, efficacy, and manufacturing quality of a new drug. Once Health Canada approves a drug, health technology assessment (HTA) agencies make funding recommendations to Canada’s public drug plans.
After the HTA assessment is complete, the pan-Canadian Pharmaceutical Alliance (pCPA) leads drug pricing negotiations on behalf of public drug plans, including with provincial, territorial, and federal governments. Finally, once a negotiation is completed, patients must wait until their province or territory puts the drug on their formulary, which outlines the specific drugs that are covered under their plan. Only then can patients gain access to the medication.
It takes an average of 732 days for a Health Canada-approved drug to be listed on a public drug plan. Patients deserve better.
Speeding up access for patients
Governments have an immediate opportunity to significantly reduce wait times for new drugs by addressing unnecessary delays in two key steps of the process.
First, governments who participate in a pCPA negotiation need to commit to listing drugs on their formularies within 30 days of a completed negotiation. While the delay in how quickly new drugs get listed after a negotiation varies from 51 to 247 days depending on the province, in all cases these periods serve no purpose and are too long for patients in need of life-saving or life-improving innovative treatments.
Secondly, governments can eliminate the 119-day delay between when the Canadian Agency for Drugs and Technologies in Health issues a recommendation for a drug and the pCPA starts its review of that drug. That’s almost four months of dead time with no progress for patients.
Giving hope to patients
A 2022 Conference Board of Canada report found that if Canadians living with five types of cancer had been able to access breakthrough treatments in the last decade, there would have been up to 226,445 life years gained and $5.9 billion in potential economic value.
For many patients, every month that goes by without access to an approved new treatment has the potential to decrease their quality of life and, in the worst cases, lead to loss of life. Governments must eliminate these unnecessary wait times so that six-year-old Nolan’s story becomes the norm, and not the exception, for Canadians accessing cutting-edge new treatments.
Nolan Caskanette & his sister
Caskanette Family
Canada's ALS Community Deserves So Much Better — Here's Why
Despite recent advances in ALS treatments, Canadians living with the rare neurodegenerative disease still face terrible barriers in accessing therapies.
Tania Amardeil
You’ve likely heard of the rare neurological disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. But do you really know what it is and what it means for people affected? Muscle twitches, cramps, and stiffness; slurred and nasal speech; and progressive muscle weakness, which eventually affects chewing, swallowing, speaking, and breathing — these are the horrific and debilitating symptoms that people living with ALS face. The disease progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we’re typically able to move at will. Worst of all, ALS has no cure and an average life expectancy of just two to five years from the time of diagnosis.
But while there have been limited to no effective treatment for ALS for decades, times are changing. New advances in research and new medication development mean that there are now drugs available that may slow progression of the disease. Why, then, do so few Canadians with ALS have access to treatment?
The overwhelming burden of ALS Kris Noakes is a citizen of the Anishinabek Nation, a member of Nipissing First Nation, and a community advocate at the municipal, provincial, and federal levels. She and her family have been greatly impacted by ALS for generations — Kris, her father, her grandmother, and many other family members either live with the disease or have died from it.
“An ALS diagnosis is a family’s worst nightmare,” says Kris. “And it’s not just the people diagnosed with ALS who are affected. We hear about PTSD amongst family members and caregivers who experience the disease with the people they love who are living with ALS. It’s a terrifying disease. And it’s one of the most under-funded, under-acknowledged, and misunderstood diseases.”
The burden of disease is significant when it comes to ALS — not just physically and psychologically but emotionally, financially, and socially. And because ALS has a progressive nature, time is of the essence when it comes to diagnosis and treatment.
The clock is ticking
another neurologist,” she says. “A whole different world opened up. Finally, I was embraced and supported.”
The ALS community understands the urgency of the advocacy work that’s happening in the space, including by the ALS Society of Canada, where Kris is now a member of the Board of Directors.
Achieving equitable access is imperative, whether it’s to genetic testing, care, drugs, or treatment.
“In my family, my father is one of the only ones who have lived through their 60s,” says Kris. “There’s urgency here.
The clock is ticking.”
Kris was diagnosed with ALS in 2021 after a long period of coping with unexplained symptoms. She struggled to receive care, faced discrimination and systemic barriers, and was disheartened at the care she was given. “I was told there was nothing for me — no hope, no treatment, nothing,” she says. “That was really devastating.”
Kris began doing her own review, and what she found astounded her. “I discovered all this research that was happening, I found the ALS Society of Canada, and I got connected with
Fighting for change
The ALS Society of Canada is a fierce advocate for affordable, timely, and equitable access to therapies for Canadians living with ALS. Although there are three Health Canada-approved treatments for ALS, it can be challenging for people with the disease to gain access. People living with ALS are often forced to wait years watching a series of drawn-out, confusing, redtape-filled processes before decisions are made on whether the drug will be covered by federal, provincial, and territorial drug plans. But people with ALS, like Kris, simply don’t have this luxury of time.
We must do better. There’s a dire need for change in Canada's drug approval and reimbursement processes for people living with ALS. Greater access to medicines for all Canadians and an investment in research are critical.
“Achieving equitable access is imperative, whether it’s to genetic testing, care, drugs, or treatment,” says Kris.
Noakes Citizen of the Anishinabek Nation, Member of Nipissing
Patient Voices Matter: The Kidney Foundation's Advocacy for Kidney Health
The Kidney Foundation of Canada advocates for disease awareness, self-advocacy, and federal recognition while involving patients in shaping a national framework.
The Kidney Foundation of Canada
Kidney disease affects 1 in 10 Canadians. Symptoms are silent and people can lose 50 per cent of their kidney function before they even start to notice anything is wrong.
Unlike your lungs or your heart, where it’s obvious what these organs do for your body, the kidneys are a bit more under the radar as they work to remove waste and fluid from the body, help to make red blood cells, and regulate blood pressure.
When someone’s kidney function decreases or their kidneys fail, treatment options include dialysis or kidney transplant.
The Kidney Foundation of Canada’s programs and services can help people navigate the lifelong impacts of kidney disease. The Foundation advocates on behalf of Canadians at every level of engagement, from municipal to provincial to federal governments, and empowers patients to advocate for their own health care needs.
Critically, The Kidney Foundation of Canada amplifies the collective patient voice to influence change at a societal and political level.
Self-advocacy
— be it at a doctor’s office or in a letter or in the media — is a powerful tool to achieving better care for all kidney patients and those at risk.
“We work with patients and their loved ones to empower them to make change happen,” says Elizabeth Myles, National Executive Director of The Kidney Foundation of Canada.
“Self-advocacy — be it at a doctor’s office or in a letter or in the media — is a powerful tool to achieving better care for all kidney patients and those at risk.”
Patient voices in action
Vince Andrews, who is on dialysis and has often advocated for both himself and other patients, couldn’t
agree more. “Nothing is more impactful than a patient speaking of lived experience with emotion,” he says. “We reveal our vulnerabilities when we share.”
Andrews’ commitment to self-advocacy started early, when he began dialysis treatment. During his introductory phase for dialysis, he was given a piece of literature which mentioned the importance of patients being their own advocates. He took this advice to heart.
“Who is more invested in our outcomes than patients ourselves? You’re speaking to medical experts, but they don’t fully understand what your own body, mind, and emotions are telling you,” says Andrews. “The psychological factor is strong. When you advocate for yourself, some people may feel as though they’re questioning authority. I don’t look at it like that. You’re taking care of yourself and you have way more insight. Speak up and ask questions. Get clarity from your health care professionals.”
Whether it’s calling on provincial governments to change their policy around organ donation or fighting for proper access to treatment or medication and getting on the government’s radar, patient advocates have done it all.
Andrews points to a recent example where patients collaborated with The Kidney Foundation to deliver impactful results. “The foundation participated in advocacy during COVID,” he says. “Not all areas had dialysis patients on the priority list for vaccinations. Their vulnerability and the high probability of bad outcomes from COVID were real. We got that changed.”
Impactful advocacy
“When voices come together to advocate for change, good things can happen, especially when it’s done through an organization as prominent as The Kidney Foundation,” says Andrews. “It’s a much stronger voice. I feel the foundation really comes into play — it’s recognized as the voice of
When voices come together to advocate for change, good things can happen, especially when it’s done through an organization as prominent as The Kidney Foundation.
the kidney community in the country. And it’s important as it can identify where advocacy is needed.”
The Kidney Foundation has more important advocacy work ahead.
“The Public Health Agency of
Canada currently doesn’t recognize kidney disease as a chronic disease in Canada,” says Myles. “This highlights the critical need for us to advocate at all levels for improvements in prevention, diagnosis, treatment, research, and access to care. The Kidney Foundation is developing a national framework for chronic kidney disease. Gaining federal government support is critical.
To achieve this, we’re incorporating as many perspectives as possible to ensure the framework reflects the real-world needs of those living with kidney disease.”
At the end of the day, the most important people in this work are those living with kidney disease and their families.
“The Kidney Foundation is lucky to be able to tap into an amazing network of patient advocates like Vince who have been fighting for greater awareness of kidney disease,” says Myles.
Elizabeth Myles National Executive Director, The Kidney Foundation of Canada
Vince Andrews Kidney Foundation Board Member & Transplant Hopeful
This article was sponsored by The Kidney Foundation of Canada