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Patient Access & Empowerment
Catherine Mulvale Chief Development Officer, MitoCanada
P H OTO C O U RT ESY O F T H E P R U C H N I C K I FA M I LY
Being Healthy Is a Privilege Catherine Mulvale
R
are diseases invade bodies without invitation. They steal health, hope, and dreams, leaving families devastated and overwhelmed. Amelia and Gerard Pruchnicki know this better than most. Their 13-year-old son, Cole, has a mitochondrial disease, one of more than 7,000 rare diseases impacting individual Canadians, their families, our communities, and Canada’s health care system. As a baby, Cole experienced frequent seizures, was rushed to hospital on a weekly basis, and suffered muscle weakness that left him unable to walk, challenged to communicate, and missing social interactions. Like so many living with rare diseases, Cole’s illness was leading to developmental delays and isolation. Amelia and Gerard have become mito experts. They emphasize that access to information helps empower them to make the best decisions they can. Amelia admits that not understanding how the system worked in the early days left them terrified. “We
didn’t know how to sift through the information to get to the important facts or understand how to implement solutions. In our house,” she adds,
We didn’t know how to sift through the information to get to the important facts or understand how to implement solutions. “making mistakes can end Cole’s life.” The Pruchnickis have become seasoned advocates. This is necessary to protect their son and enable Cole to have the best quality of life possible. Gerard constantly scours the internet for clinical trials, scientific publications, thought leaders, conferences, and pharmaceutical pipelines for mitochondrial drugs that are in development.
“Caring for a child with a rare disease is exhausting,” says Amelia. “We expend so much energy managing medications, preparing food, and educating family, friends, and educators to keep Cole healthy and living his best life. There are no short cuts.” Money is another issue. “It's difficult for most people to understand that when insurance plans and reimbursements don’t cover all the costs, we simply absorb the expenses,” says Amelia. It's not a choice. Paying for the additional expenditures is essential. Only about 60 percent of treatments for rare disorders make it into Canada, with many not getting approved up until six years later than in the U.S. and Europe. This means that the quality of life for Canadians diminishes and lives are lost unnecessarily. At a time when awareness of diversity, equality, and inclusion has been heightened, Amelia wants people to consider those with disabilities. “I don’t want pity for myself or my son," she says, "but we need to have difficult conversations to understand what is needed and accept that being healthy is a privilege.”
To learn more about mitochondrial disease, visit mitocanada.org.
Publisher: Natalie Jacome Business Development Manager: Chelsea Siemon Strategic Account Manager: Anna Sibiga Strategic Account Director: Jessica Golyatov Country Manager: Nina Theodorlis Content and Production Manager: Raymond Fan Designer: Kylie Armishaw Web Editor: Karthik Talwar All images are from Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve Toronto Star or its editorial departments. Send all inquiries to ca.editorial@mediaplanet.com.
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Leveraging Canada’s COVID-19 Testing Engine to Transform Cancer Prevention With all the new health care infrastructure the COVID-19 pandemic response has provided, could HPV screening and cervical cancer prevention be the natural next step? D.F. McCourt
T Michele D’Elia Executive Director of Medical & Scientific Affairs, Roche Diagnostics
François Drolet Executive Director of Access, Policy, & Government Relations, Roche Diagnostics
he past year and a half has been a battle, and one of the underappreciated victories has been the rapid and successful roll-out of tremendous new capacity for molecular testing. But the big question that people are just beginning to ask is: What are we going to do with all that new capacity as the need for COVID-19 testing eventually decreases? Because of COVID-19 testing, labs have been buying more instruments since they needed to run more samples than they typically would,” says Michele D’Elia, Executive Director of Medical and Scientific Affairs at Roche Diagnostics. For the time being, COVID19 testing remains key to overcome the pandemic as we face different waves due to new variants. However, these same instruments are also capable of performing a number of molecular tests, such as the HPV test.
A viral test to prevent cancer Widespread molecular HPV testing presents a unique opportunity to safeguard the health of Canadians due to the prominent role of the virus in the development of cervical cancer, which kills over 400 Canadian women each year. “Cervical cancer is caused by an HPV infection that has modified the cervical cell lining,” explains D’Elia. “Historically, we’ve collected the cells and looked at them to find out if there was a change, but the root cause of that change is an HPV infection. The technology today allows you to directly detect that clinically-relevant HPV infection.” The World Health Organization recommends a cervical cancer prevention policy that sees at least 90 percent of
women vaccinated against HPV, 70 percent screened for HPV, and 90 percent with pre-cancer receiving treatment. Canada has set an even more ambitious screening target at 90 percent. “Unlike most other cancers, most of these cervical cancers are totally preventable,” says Roche Diagnostics Executive Director of Access, Policy, and Government Relations, François Drolet. “If we want to eliminate cervical cancer, HPV vaccination alone won’t achieve it. We need a three-pronged approach, with screening, vaccination, and treatment.”
Bringing screening to the unscreened HPV Global Action advocates for equitable access to best practices for cervical cancer prevention through appropriate screening policies Canada-wide. “The switch to HPV testing from Pap testing as primary cervical cancer screening is safer, will provide more effective protection, and will save health care resources,” says a representative at HPV Global Action. “HPV testing access must be tailored according to the needs of the diverse populations that exist across Canada. Further, to ensure that this transition is met with acceptance by the general public, we need to assure widespread education about this innovative cervical cancer screening method to empower and engage people with a cervix in demanding HPV testing.” Cervical cancer screening, traditionally done through the Pap test, has long been a powerful tool in our prevention arsenal. But, as testing technology has become more advanced, and especially as the installed base of molecular
testing equipment has exploded over the course of the pandemic, Canada is ready to enter a new era of primary screening, particularly for those with access issues. “The Pap test has been a good test, but we’re probably at its limits in terms of how successfully we can fight cervical cancer through that technology,” says Drolet. “The HPV DNA test is a more accurate test, and it catches the disease earlier, providing more options.” One of the most exciting possibilities of the molecular HPV test is its ability to bring effective screening to populations that were previously unscreened. The opportunity for self-sampling particularly, where the test can be performed at home and sent into a lab for analysis, is a big potential win for Canadians in remote communities or facing other access barriers. Though self-sampling is not yet an approved collection method in Canada, it has had success in other countries such as Australia and the Netherlands, and Drolet reports that several provincial health ministries have expressed interest in studying it further. Access to the test currently varies by province and insurer. Rega rdless of how we move forward, one thing is clear. This incredible new base of molecular testing equipment has provided a rare opportunity to rethink how diagnostics intersect with care in Canada. And cervical cancer prevention is a major health issue that’s overdue for just such a transformation.
To learn more about HPV, visit hpvglobalaction.org. Talk to your doctor about HPV DNA screening. Help build a tomorrow without cervical cancer. Learn more at thenewpap.ca. This article was sponsored by Roche Diagnostics.
Accelerating Canada’s Rare Disease Drug Strategy, Post-Election Dr. Durhane Wong-Rieger
F Raise Your Voice to Make Parkinson’s a Priority in Canada Parkinson Canada is calling on the newly-elected government to make Parkinson’s a priority – and we need your help. Amanda Stanton
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ore than 100,000 people live with Parkinson’s in this country. That number will grow by 30 people tomorrow and 30 more the day after that until we reach 200,000 Canadians within the next 10 years. People living with Parkinson’s and their care partners need increased government support to improve on areas of greatest urgency, including reducing wait times for diagnosis, increasing access to care, and reducing costs for health care services and medications. It’s time Canada had a system of care for people impacted by Parkinson’s. Please join Parkinson Canada in raising your voice to call on our newly-elected Prime Minister and parliamentarians to #PrioritizePD and commit to improving health care for all Canadians living with Parkinson’s.
Amanda Stanton Director of Public Affairs & Regional Partnerships, Parkinson Canada
•
•
One in five people with Parkinson’s wait more than a year to receive a formal diagnosis after first reporting their symptoms to a medical professional. People living with Parkinson’s need regular access to specialists after diagnosis. The national average wait time to meet with a Parkinson’s specialist is 11 months, with some regions reporting wait times of more than two years. Nearly half of people in Canada living with Parkinson’s and their care partners find it difficult to pay for medical expenses.
No matter what, Parkinson Canada is committed to raising the voices of people affected by Parkinson’s. Together, we can keep the conversation going by calling on the government to prioritize Parkinson’s (#PrioritizePD) and improve health care for the Canadian Parkinson’s community.
For more information and to send a letter directly to your elected officials, visit parkinson.ca/election.
This article was sponsored by Parkinson Canada.
Dr. Durhane Wong-Rieger President & CEO, Canadian Organization for Rare Disorders
CORD has committed itself to forging a rare disease drug strategy that works for all Canadians and that addresses various stakeholders’ priorities. Beginning last September, CORD hosted over 25 multistakeholder consultations to work toward optimizing the access and cost-effectiveness of rare drug treatments. From January to March, the federal government also hosted a series of stakeholder meetings. CORD will continue its series of consultations immediately post-election this fall, planning for collaborative action toward the spring 2022 initiation of Canada’s rare disease drug strategy.
Key issues around Parkinson’s in Canada •
or the past year, the Canadian Organization for Rare Disorders (CORD) has committed itself to forging a rare disease drug strategy that works for all Canadians and that addresses various stakeholders’ priorities. Federal and provincial governments share a common concern regarding a national rare disease drug strategy: managing the budgetary impact. Payers have expressed concerns about the “proliferation” of rare disease drugs — there have been over 700 rare disease drugs approved in the U.S. and over 200 in the E.U. Because they’re for such rare diseases, these therapeutic products tend to cost more. And while the number of eligible patients is small and the impact on overall drug expenditure is therefore also small, the sticker shock of individual therapies remains.
To learn more, visit raredisorders.ca.
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Empower Yourself with the Facts on Ovarian Cancer and Advocate for Your Health Peggy Pickett’s ovarian cancer journey was transformed when she found her empowerment. Anne Papmehl
P
eggy Pickett, 57, was leading a full and active life — working full-time at a job she loved, travelling, volunteering, knitting, playing guitar, and enjoying her family. In early 2012, she started feeling a strange pain on her upper right side. Being a diabetic, she checked in regularly with her family doctor and would frequently mention it to him. “He basically dismissed it as a pulled muscle and nothing that proper diet and exercise couldn’t fix,” says Peggy.
A long two years until a diagnosis After repeated attempts to describe her condition to her physician with no outcome, Peggy decided to stop talking to her doctor about it. But the pain persisted, and in September 2013, her husband Jack watched her suffer an excruciating episode. Something needed to be done immediately. Her family doctor ordered an ultrasound, which she received in December. That same evening, her doctor called to report that the results showed something suspicious. Peggy was immediately referred to a cancer centre, where she had more tests. Six days later a gynecologic oncologist told her she had two tumours — one the size of a cantaloupe on her right ovary and another the size of an orange or small grapefruit on the left one. In January 2014, surgery confirmed a diagnosis of advanced high-grade serous ovarian cancer. There were 11 tumour sites and multiple clusters of tumours, including a few on her liver. The pain on her upper right side turned out to be from the tumours on her diaphragm. “They would twist with exercise or breathing, and I’d been living with that for two years,” she says. One month later, on her 50th birthday, Peggy started her first chemotherapy treatment.
Awareness of early signs is imperative for women Typical symptoms of ovarian cancer are bloating, difficulty eating, pain, and changes in bladder habits — but these non-specific symptoms can
easily be confused with other benign conditions. A woman may also experience other symptoms, as Peggy did, that don’t seem related to ovarian cancer. “The pain I had on my right side wasn’t a classic ovarian cancer sy mptom,” she says.
From patient to self-advocate and advocate for other women Peggy has come to terms with her anger about her complaints being dismissed. “I had stopped being a self-advocate and I realize now that doctors can’t diagnose what you don’t tell them. If they don’t suspect it, they won’t detect it and if they don’t detect it, they can’t treat it,” she says. Then something changed after her second round of chemo. “I felt the need to know more about what was happening so I could make informed decisions,” says Peggy.
Becoming educated in my disease and the medical system and becoming an advocate for myself and other women has been my road away from powerlessness. She contacted Ovarian Cancer Canada to request a free copy of their resource book, which she received in the mail, along with a follow-up call. “This was a pivotal moment when I went from being a patient to a self-advocate,” she says.
About Ovarian Cancer Ovarian cancer can start from three common cell types: epithelium, germ cells and stromal cells. The most common type of ovarian cancer is epithelial, which accounts for 90% of all cases of ovarian cancer. Fallopian Tube
Epithelial Ovarian Cancer (EOC) Cancer can arise on the surface layers of the ovaries, fallopian tubes or peritoneum.
Epithelial Layer
Rather than waiting for her treatment to end and then pick up her life again, Peggy made a choice to live as much as the day could hold, find good sources of information, and share the power of her experience rather than give that power away. “I set out to become the world’s leading expert on Peggy and, as such, have become a valuable member of my medical team,” she says. While Peggy went through three recurrences, two more rounds of chemotherapy, and two rounds of radiation, her take-charge self-advocacy approach ensures she has access to the latest and most effective treatments for her needs. She’s now a peer volunteer with Ovarian Cancer Canada, and constantly looks for opportunities to improve the outcomes for women living with the disease. “Becoming educated in my disease and the medical system and becoming an advocate for myself and other women has been my road away from powerlessness,” says Peggy. Her advice to other women: “Become the world’s leading expert on you. Know yourself, know your body, and know your options,” she says.
Ovarian cancer is a form of cancer that occurs due to the abnormal and uncontrolled growth of cells from the ovaries, fallopian tubes, or peritoneum.
Causes
Signs & Symptoms
It’s not clear what causes ovarian cancer, but risk factors include: i,ii
Many women with early ovarian cancer have no signs or symptoms and when present, they are similar to other, more common and benign conditions. This can make for a challenging and late diagnosis. Some early symptoms are: i,ii
• Family history of ovarian or breast cancer • Deleterious gene mutations including the BRCA gene
• Infertility • Smoking • Lynch syndrome (genetic disorder)
Ovary
iii
Patients & Prevalence An estimated 3,100Canadian women were diagnosed with ovarian cancer in 2020. An estimated 1,950 have died from the disease iv
Epithelial ovarian cancer is the
most common type of ovarian cancer i
Ovarian cancer is the 8th most common cancer in women and is the
most fatal gynecological cancer in Canada iv
References
Nearly
75% of women
diagnosed with advanced ovarian cancer will experience
relapse v
5-year survival
Nearly
75% of women with ovarian cancer are diagnosed at
later stages (Stage III/IV)
v
• Abdominal pain, swelling or bloating • Changes in bowel movements
• Increasing age
Adapted from Medline Plus.
With the patients’ voice at the heart of our mission, at GSK we are committed to fulfilling unmet patients’ needs by developing innovative medicines that help improve the quality of life and outcomes for Canadian women living with the disease.”
Marni Freeman Medical Director, GSK Canada
Find information and support at ovariancanada.org.
• Previously having endometriosis
Cell tumour =
Raising awareness around ovarian cancer, including the signs and symptoms, is critically important. Well informed, Canadian women have a better chance of discovering the disease early and having a positive outcome.
• Pelvic and lower back pain • Fatigue • Frequent or urgent need to urinate
Diagnosis
Treatment
To help diagnose ovarian cancer, exams and tests may be used, such as: ii
In general, treatment for ovarian cancer may include a combination of the following: i,ii
• Biopsy
• Surgery
• Physical evaluation and pelvic exam
• Targeted therapy
• Ultrasound and other imaging tests
• Chemotherapy
• Blood tests
rate according to Canadian Cancer Statistics 2019 report for 2012–2014 period is
45% iv
i. Drapkin, RI. Ovarian Cancer. National Organization for Rare Disorders (NORD). https://rarediseases.org/rare-diseases/ovarian-cancer/. Accessed April 2020. ii. Ovarian Cancer. Genetic and Rare Disease Information Center (GARD). https://rarediseases.info.nih.gov/diseases/7295/ovarian-cancer. Accessed April 2020. iii Ovarian Cancer. MedlinePlus. https://medlineplus.gov/ovariancancer.html. Published August 20, 2019. Accessed April 2020.
iv.Canadian Cancer Society. Ovarian cancer statistics. 2020 v. Lheureux, S., Braunstein, M., & Oza, A. M. (2019). Epithelial ovarian cancer: evolution of management in the era of precision medicine. CA: a cancer journal for clinicians, 69(4), 280-304.0
This page was made possible with support from GSK Canada.
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Taking Control of Prostate Cancer Elizabeth Holmes
H
ow well do you know your b o dy ? K now i ng what ’s normal for you helps you notice changes. When you notice something different about your body — like a new growth or lump, increased fatigue, or dramatic weight loss — it needs to be checked out. There are also tests that help find different types of cancer before you’ve even noticed symptoms. If you have a prostate, you may want to consider the benefits and limitations of testing for prostate cancer. When prostate cancer is found and treated early, the chances of successful treatment are better. Get regular health checkups and see your doctor if you have any symptoms or are worried about your health.
PSA testing The prostate-specific antigen (PSA) test is a key step in detecting prostate cancer early. It’s a blood test that can determine if a person’s PSA levels are higher than they should be — this can indicate that something might be wrong before symptoms are noticed. The Canadian Cancer Society recommends talking to your doctor about the PSA test, considering your personal risk factors, and then making an informed decision about whether the PSA test is right for you. • If you’re at average risk of developing prostate cancer, consider testing from age 50. • If you’re at high risk of developing prostate cancer, consider testing from age 45. Black men and those with a family history of prostate cancer are considered to be at high risk.
There are a number of benefits and limitations that come along with PSA testing. For example, some benefits include potentially finding prostate cancer early before you have symptoms, and if the result is normal then you might feel reassurance. Limitations could include false positives and negatives, or test results could potentially lead to unnecessary treatment that may have side effects.
It’s your decision Still trying to decide about the PSA test? Research hasn’t yet clearly shown if the benefits of testing for prostate cancer outweigh the limitations. Deciding whether to be tested for prostate cancer can be confusing. You may assess the benefits and limitations of doing a PSA test differently than someone else based on your values and preferences. It’s important to talk to your doctor about what’s right for you so that you can make an informed decision.
Deciding whether to choose PSA testing Almost every test or procedure has benefits and limitations. You might think of these as pros and cons. Before having any test, it’s important to be aware of them so that you’re making an informed decision that’s right for you. Testing for prostate cancer early — before you have any symptoms — is your choice.
How e-Prescribing Makes It Easier to Manage Your Health
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Elizabeth Holmes Senior Manager of Health Policy, Canadian Cancer Society
To learn more, visit cancer.ca.
hen life gets busy, it can be easy to put your health on the backburner. With so many things to do in a day, it might feel like taking time for a doctor’s visit, or taking your prescription to the pharmacy, can always be done “tomorrow.” But it’s important that when life does get busy, you stay healthy, remembering that your medications are only effective if you can access them. PrescribeIT® takes some of the burden off you by making prescribing simpler and safer. By electronically sending prescriptions from prescribers to pharmacists, PrescribeIT® helps ensure your medications are there when you need them. Virtual doctors’ appointments are one way to make busy days easier. And if you’re having a virtual appointment, why not get a virtual prescription? With e-prescribing, prescriptions are sent electronically to your preferred pharmacy, so you don’t have to worry about papers or faxes. Head straight to your pharmacy to pick up your prescription: from couch to counter, with no extra steps.
Similarly, if you need an in-person appointment to renew a prescription, you might need to take time off work, arrange childcare, and spend money on parking or public transit — making it easy to put renewals off. PrescribeIT® enables renewal requests to be sent to your care provider. Just ask your pharmacist. Finally, when it comes to your health, safety and accessibility are especially important. Because PrescribeIT® sends your prescriptions directly to the pharmacy, you know they won’t get lost or diverted. Since pharmacists can send e-renewal requests, you also know you’ll be able to access additional medication if needed.
Learn more about how PrescribeIT® helps make it easier to receive, manage, and renew prescriptions at prescribeit.ca. This article was sponsored by PrescribeIT®.
Revolutionary Imaging Technology Lets Doctors Visualize the Whole Heart Like Never Before Ventripoint Diagnostics’ heart analysis system provides cardiac metrics with an accuracy comparable to MRI with the ease of ultrasound, improving comfort and accessibility for patients. Abigail Cukier
A
new technology using artificial intelligence (AI) is allowing physicians to understand the whole heart in a way that wasn’t previously possible, helping improve care for patients with cardiac disease. A key aspect of the Ventripoint Diagnostics’ VMS+ 3.0 whole-heart analysis system is that it provides a clear image of the function of the right side of the heart. “It’s difficult to get functional images of the right side of the heart with a conventional 2D ultrasound,” says Dr. George Adams, CEO and Executive Chairman of Ventripoint. While an MRI gives clear, sharp images, it requires patients to be in the MRI machine for one to two hours and the waiting list to get an MRI can be several months. In addition, due to the use of a strong magnet, MRI cannot be performed on patients with such devices as implanted pacemakers, cochlear implants, and metal prosthetic devices. “The VMS+ 3.0 gives doctors the ability to visualize the right side of the heart quickly, accurately, and precisely,” says Dr. Adams.
Technology improves the understanding of how the right side of the heart is performing The VMS+ 3.0 system was created as a better way to care for patients rather than having to perform an MRI. Using Ventripoint’s patented Knowledge-Based Reconstruction AI technology, the system takes data from a patient’s ultrasound image and reconstructs an accurate 3D representation of the patient’s actual heart, from which cardiac metrics are derived. “Ventripoint has harnessed the power of AI to improve cardiac imaging, namely how we
analyze ultrasound imaging of the heart,” says Dr. Howard Leong-Poi, a Clinician Scientist at the Keenan Research Centre for Biomedical Science and Head of the Division of Cardiology at St. Michael’s Hospital. “The vast majority of cardiac ultrasound imaging (or echocardiography) is performed using two-dimensional imaging, taking multiple slice views of the heart, which the reader uses to make measurements, assess heart function, and identify pathology. Of course, the heart is a beating three-dimensional organ, so it makes sense that 3D imaging would be more accurate to evaluate the heart. Ventripoint has developed an AI-based system to take everyday 2D echo images and extract 3D-quality data.”
System improves cardiac care for all patients The VMS+ 3.0 system connects to conventional ultrasound machines found in any cardiac echo environment, making it convenient to use, while providing the cardiac metrics with an accuracy comparable to MRI. This opens up many possibilities for doctors and patients. Physicians can more easily monitor patients receiving cancer therapy, which can often cause chronic heart conditions, to see if they need to adjust treatment to minimize heart damage. Pregnant women with cardiovascular issues can also be monitored carefully and safely during their pregnancies. “Integral to the care of patients is an ability to non-invasively evaluate right heart function, which is difficult,” says Dr. John Granton, Professor of Medicine at the University of Toronto and Consultant in Pulmonary and Critical Care
The VMS+ 3.0 gives doctors the ability to look at the right side of the heart quickly, accurately and precisely. Medicine at Toronto General Hospital. “The Ventripoint system has recently been installed and we’re looking forward to it complementing our clinical care and research enterprise. We’re especially enticed by the ease of analysis of images in a busy clinical setting.” Dr. Adams says there are medications and techniques to treat right heart failure that differ from those for the left heart failure. “The critical thing is to determine what kind of heart failure is happening and treat it properly. Routine use of the VMS+ 3.0 allows for repeated exams and close monitoring of patients. After all, you cannot treat, what you cannot see.”
Dr. George Adams CEO & Executive Chairman, Ventripoint
Learn more about Ventripoint Diagnostics in Canada at ventripoint.com. This article was sponsored by Ventripoint Diagnostics Ltd.