I lived a busy life in Guatemala, and my years growing up in Canada weren’t at the front of my mind.

I was working as general manager for the Guatemalan Zoo, and my husband, a former professional soccer player, was serving as sports director for the Guatemalan National Soccer Federation. Our children were healthy, happy and attending school.

But I’ll be forever grateful for what my Canadian citizenship meant when things changed in the summer of 2017.

We were on a vacation trip when Pablo, my 16-year-old, started complaining about nausea and stomach discomfort. We took him to the hospital and were not prepared for what we were told: He had chronic myeloid leukemia, a rare leukemia in children. We nearly lost him due to his very high blood counts but, fortunately, he responded well to the treatment he was given, and he was released from the intensive care unit after 11 days.

Three months later, Pablo became resistant to treatment, and we were told that they could only give him palliative care, as the only treatment that could save his life was a bone marrow transplant, and that is not done in Guatemala. We were also told that he had 24 hours to leave the country to pursue treatment elsewhere, or he would be so sick from his chemotherapy drugs that he would be unable to fly. Luckily, as a citizen of Canada, I had also passed citizen- ship on to my children. We contacted SickKids, the Hospital for Sick Children in Toronto, quickly packed two suitcases, said a tearful goodbye to our family and were off on Oct. 28, 2017, for his lifesaving treatment.

After spending over three weeks living in the hospital, we were told we could go home for a few days — except we had no home. Late that afternoon, a miraculous call came from Ronald McDonald House, saying there was a room for us there. You have no idea what that meant to a mother with a 16-year-old son who’s weak because he just finished a 21-day cycle of chemotherapy in preparation for stem cell transplant &mdash; 5,000 kilometres away from home.

During compatibility testing, we were told that there was no match for Pablo through the Canadian Blood Services’ OneMatch Stem Cell and Marrow Network, which helps patients find a stem cell donor outside their own families. However, things began to look up for Pablo when he got an extraordinary 17th birthday present on Dec. 1: news that his older brother, Gabriel, was a perfect match to be his bone marrow donor! This meant that his bone marrow transplant could proceed, and that one of his best friends was coming to stay with him.

Gabriel arrived in Toronto on Dec. 7. We had left Guatemala in such a state of crisis that everyone said goodbye to Pablo not knowing when or if they would see him again. So it was very emotional when my boys were reunited — not only because they were together again, but because their reunion represented Pablo’s path to wellness.

Pablo is now one year and five months post- transplant and doing very well. So far, he has responded well: no graft-versus-host disease, no pain and no rash of any kind. We couldn’t be happier! Needing to be near his doctors, Pablo finished high school at Central Technical School in Toronto, even playing on the soccer team, and is now working at a gourmet ice cream shop, as he has decided to take a year off to try and get healthy and decide on what comes next. And the rest of our family has come to join him, moving permanently to Toronto.

I never would have dreamed that I’d face such fear and anxiety as a mother — either during Pablo’s treatment or still today. All I can do is be thankful for the superb care Pablo received in Toronto and our family’s ability to come together to offer him emotional and lifesaving support. And I have to trust that scientific advances will be made so that we &mdash; and all the people who have cancer &mdash; can have a cure within reach and move on with our lives.

CLAUDIA SALAZAR SEGURA was born in Guatemala but lived in Canada during her childhood. After working in advertising and marketing for many years, she developed a savvy for entrepreneurship and founded various successful businesses. She was asked to join the Guatemalan National Zoo as its general manager in 2010 and later became the first woman member of its board of directors in the position of treasurer. Segura loves music, languages, writing, travelling and learning new things. The core of her existence is her family.

Articles

Voices

When a Guatemalan family faced cancer, they turned to the country where they had dual citizenship &mdash; and to each other &mdash; for help.

Turning to Canada

Imagine a world where more people practised cancer prevention strategies, and those who did get the disease received a diagnosis earlier and were given access to all the testing and therapy they needed, treated in a world-class health-care system and supported along the way with information and palliative care.

Cancer would certainly take a much smaller toll on the people of Canada: Fewer people would get the disease and more would survive with a better quality of life.

That’s the vision of the Canadian Partnership Against Cancer, which recently released an updated 10-year Canadian Strategy for Cancer Control. On behalf of the federal government, the partnership will help provinces and jurisdictions bring their healthcare systems into line with the plan, with a goal of more equitable prevention, treatment and support throughout the country.

 ®, you can learn about the effort in an article describing the partnership’s plan and the positive health outcomes it’s designed to generate. Then, as you use your province’s or territory’s health system, you can help push the plan forward by asking for the kinds of care it recommends — smoking cessation programs, human papillomavirus vaccines for everyone eligible, telemedicine for those in remote locations and more.

Even bigger changes to the Canadian health care system may be in store when it comes to coverage for prescribed drugs, and we explore this topic in our cover story about a universal pharmacare plan put forth by the federal government. The article delves into the details of the plan — what it would provide, how much it would cost and when it would roll out. It also considers a variety of opinions about the plan and how it will factor into the upcoming federal election.

The recent country-wide legalization of cannabis for recreational use also has implications for cancer care, as patients are now able to get the drug without a prescription. But is that a good idea for those using the substance to ease symptoms from cancer or its treatments? Find out in an article that addresses cannabis in cancer care.

We round out the issue with several articles aimed at helping patients navigate their treatment. One explains clinical trials and discusses how to find and enroll in them, and others look at the ins and outs of patient portals and treatments for chemo brain.

We hope that this array of articles leaves you feeling informed about changes to your health-care system and some key supportive strategies that can improve your quality of life during treatment. As always, thank you for reading.

Chairman

"We hope that this array of articles leaves you feeling informed about changes to your health-care system and some key supportive strategies that can improve your quality of life during treatment."

Working Toward Best Practices in Cancer Prevention, Diagnosis and Treatment in Every Part of Canada

For Gretta Hutton of Orillia, Ontario, signing up for a clinical trial was a no-brainer. That is, once she learned about one.

Her story started in May 2014 when she was diagnosed with stage 4 mantle-cell lymphoma, a rare form of non- Hodgkin lymphoma (NHL) that affects 6 per cent of NHL patients. Her oncologist at a nearby community hospital suggested she start standard-of-care R-CHOP chemo- therapy (each letter stands for the name of a drug used).

“He gave me two to five years with treatment,” she says.

But before she began the treatment regimen, both her sister and a neighbour looked on the ClinicalTrials.gov website and found a clinical trial of the targeted drug Imbruvica (ibrutinib) that was recruiting newly diagnosed patients with her condition. Her oncologist was unaware of the trial, but once she told him about it, hospital staff provided access to phone and fax numbers for the trial nurse. Hutton received the informed consent form, which provided details about the trial, and within days, she was in Hamilton at the Juravinski Cancer Centre, one of several Canadian centres participating in the trial. Hutton underwent additional tests to make sure she qualified — and she did.

“When the trial oncologist walked in, the first thing he said was, ‘We have lots of time to talk,’” she says. He explained the study, the medications that would be used, the risks and benefits and the steps involved in being in a trial.

Hutton was placed on either Imbruvica or placebo paired with the targeted drug Rituxan (rituximab) and the chemotherapy bendamustine — a different combination of medicines than the R-CHOP regime. She isn’t certain she received Imbruvica, but suspects she did: Her condition improved significantly and her cancer is in remission. She initially made monthly trips to Hamilton and now makes the two-hour drive from her home every other month.

“I was really sick when I first went in, so there wasn’t much to lose to try a trial,” she says. Besides, she knew she could quit any time and switch to standard care. Instead, her experience was so positive that she became a patient-spokesperson for the Canadian Cancer Clinical Trials Network, also known as 

, an organization that works to increase the number of academic trials conducted in Canada and encourage patient participation.

Clinical trials, which test new treatment strategies, are opportunities for patients to “access cutting-edge technologies, new drugs and new ways of doing things (as therapies) for their cancer. We’re always trying to improve how we treat patients with cancer, be it a new drug, a new pathway (treatment protocol) or a new way of doing radiation,” says Dr. Daniel Heng, a professor of medicine at the University of Calgary and medical director of the Clinical Research Unit at the Tom Baker Cancer Centre.

A trial can investigate the effects of things like diet and lifestyle changes, new medications or novel combinations of older ones or variations in surgical techniques, he says.

“Often, patients in a clinical trial get exposed to new therapies long before they are approved or reimbursed for use,” he says — and at no cost.

According to the 2018 Cancer System Performance Report put out by the Canadian Partnership Against Cancer, between 1 per cent and 6 per cent of Canadians with cancer participated in clinical trials through 2015. Today, that number hovers between 6 per cent and 10 per cent, says Dr. Janet Dancey, a professor of medicine at Queen’s University and scientific director of 3CTN. There are multiple reasons more people don’t participate: lack of interest, worry about trying something new, concern about ending up in a trial group getting standard treatment or placebo, discomfort with being a test subject, the amount of time involved, geographic distance and the inconvenience of travelling for multiple appointments.

For Hutton, the multiple trips to Hamilton are worth it. At first, she was so unwell someone had to drive her, but now she’s healthy enough to drive herself.

According to Heng, Alberta, where his institution is located, has a higher participation rate than the United States, where it is 5 per cent. He attributes this largely to a concerted effort by the province to help patients and doctors alike become aware of clinical trials, and to find ways to help rural patients have better access. He noted that participation rates vary between different types of cancers. For example, there tend to be more trials of the more common cancers such as breast or lung, and they often recruit much larger numbers of patients. There aren’t as many trials for rare cancers.

There are also other barriers to participation for many patients. Some trials require that participants have not yet taken any cancer treatment, and patients may need to meet a certain level of health or might be disqualified if the cancer is too extensive or if they have other health-complicating issues. Some groups of people are underrepresented in cancer clinical trials, including rural and Indigenous populations and those who aren’t proficient in English or French.

“We are working on initiatives that improve these issues,” Heng says. Heng points out that all trials are different, so a patient who doesn’t qualify for one might be eligible for another. Also, some trials help patients pay for travel if distance is an issue.

Patients can even participate in trials taking place in provinces they don’t live in, but it takes extra paperwork to ensure public health coverage. “It is possible,” Dancey says. “We can figure out a way to make it work, but it takes time to get that coverage in place. And then, to be in the trial may require you to relocate to a new place.”

Advantages of clinical trials include participants getting more monitoring and tests than they might in other treatment settings, as well as a very high level of care. That’s because researchers need to know if a new treatment or regimen is working, and also about any side effects.

Participating also gives patients opportunities to help move science and treatments forward.

Clinical trials in Canada are required to meet rigorous standards. “All trials have to go through a research ethics board that includes input from medical and legal experts, patient advocates and ethicists to ensure patients are being safeguarded. There is a lot of oversight for clinical trials in Canada,” says Dr. Sharlene Gill, a professor of medicine at the University of British Columbia and spokesperson for the Canadian Association of Medical Oncologists.

Because of her experience in a clinical trial, Hutton has been able to establish a new normal in her life. She has had to make some sacrifices — she continues to take medications that cause side effects, including a suppressed immune system, potential blood clots and a risk of bleeding that means she has to refrain from riding or showing her horses. However, Hutton is convinced that her outcome is better than it would have been on standard-of-care drugs, and she says she would certainly make the same choice again.

Dancey appreciates that commitment, noting that “the only reason we have treatment now is because patients went through trials before.”

One of the best ways to find a clinical trial is to go to the ClinicalTrials.gov website, Heng says. Canadian centres are required to register clinical trials on the site. It also lists trials from around the world.

The National Cancer Institute also has a 

cancer clinical trials searchable database

, which focuses on trials available to patients within Alberta. Trials in Ontario are listed 

“Definitely ask your oncologist about clinical trials,” Heng says. “They can look to see what’s available. It helps for patients to be proactive and see what they can find on the web to open up the discussion.”

Treatment

Clinical trials offer a chance to try experimental treatments and move the state of science forward. Here’s what patients need to know.

Trial Run: What You Need to Know About Clinical Trials in Canada

It’s been close to four years since Daniel Malka, of Montreal, was told he had six to eight months to live.

After eight rounds of chemotherapy and 21 rounds of radiation treatment for his stage 4 small-cell lung cancer, he not only survived but has been in remission for more than two years. The fact that he’s now doing well is some- thing Malka attributes, in part, to judicious use of cannabis along with his regular therapies. He says the plant, which was legalized in Canada for medical purposes in 2001 and for recreational use in 2018, has helped him feel much better over the past three years.

While his medical and radiation treatments helped Malka fight his cancer, they also contributed to significant pain in his affected lung and his back, as well as complications including inflammation of the esophagus, the bacterial infection C. difficile, diverticulitis, appetite disturbances, sleep problems and nausea. His daughter suggested he try cannabis, and so, with some searching, he was able to find an oncologist specializing in rehabilitation who was on board with authorizing it.

Malka says the cannabis has eased his pain enough to enable him to stay away from opioids: “During the past three and a half years, I haven’t used any pain medications except for Tylenol and cannabis oil and vaping.”

There is some scientific evidence that cannabis can ease pain, as well as nausea and vomiting, according to guide- lines for medical cannabis use from the College of Family Physicians of Canada (CFPC).

But there are a lot of unknowns with respect to the immediate and long-term effects of the drug on the body and the disease, says Dr. Marc Kerba, a radiation oncologist and clinical associate professor of medicine at the University of Calgary.

Plus, cannabis and its components can have dramatically different effects on individuals, not all of them helpful.

The bottom line is that, although cannabis is now widely available in Canada, people need guidance from their doctors to help avoid adverse effects, says Dr. Antonio Vigano, director of the Cancer Rehabilitation Program and an associate professor of oncology at the McGill University Health Centre.

Cannabis contains over 400 chemical compounds. More than 60 are cannabinoids, many of which have a variety of biological effects. There are also compounds called terpenes (which give a plant its scent) and flavonoids (which are antioxidants), and many of their effects are not well understood. There are varying combinations and ratios of these compounds in the wide variety of cannabis plants available. Many of the compounds have not been studied, and how each affects people is unknown — which makes it challenging, Kerba says, to sort out the details when it comes to using cannabis to treat patients.

While many anticancer medications were initially derived from plants, those plants usually had only one active compound that was extracted and purified for clinical use, such as the chemotherapy paclitaxel, which was first derived from Pacific yew tree bark. With its large number of biologically active compounds, cannabis is far more complicated.

Some cannabis compounds may interact with chemotherapy or other medications patients are taking, Kerba said. For instance, benzodiazepines, antidepressants and all other central nervous system medications may cause adverse effects when taken with cannabis.

Some studies suggest that certain cannabis compounds may help inhibit the growth or spread of certain types of cancers. In fact, Malka is convinced that cannabis is keeping his at bay.

However, other studies show that some cannabinoids may do unhelpful things such as suppress parts of the immune system that fight cancer. In fact, cannabis may interfere with immunotherapy, Kerba says, a point illustrated by a study from Israel of patients with cancer who were taking Opdivo (nivolumab): Those who were using cannabis had a significantly reduced response rate to the treatment.

Throwing more uncertainty into the use of cannabis in cancer care is the fact that patients are free to choose any formulation they want, whether recreational- or medical-grade.

Malka selects flowers from licensed producers to make his own CBD and THC oil formulas. Being a biochemist, he identified formulations he thought were best suited for his condition.

“It’s up to the patient which products they get and how they use them — which is very different from traditional prescription medications where the molecules in the product are known and standardized, as are doses,” says Ted Findlay, a clinical assistant professor of family medicine at the University of Calgary, a consultant for Alberta Health Services Chronic Pain Centre and an author of the CFPC guidelines.

In its guidelines, the CFPC does not strongly recommend cannabis to treat any side effect. It states that there is very low evidence for the use of cannabis to treat chronic pain and low-to-moderate evidence for its use to treat chemo- therapy-induced nausea and vomiting. The organization recommends that cannabis be used only when these conditions have not sufficiently responded to other treatments.

The guidelines also suggest that synthetic cannabinoids made by pharmaceutical companies, such as Cesamet (nabilone) or Sativex (nabiximols), be tried first, because their effects are better understood.

The strongest evidence cited in the guidelines for cannabis use pertains to treating nausea and vomiting from chemotherapy. The drug eased nausea and vomiting for 47 per cent of users, compared with 13 per cent of patients who took a placebo, according to a meta-analysis of seven randomized controlled trials.

The studies on pain evaluated by the CFPC showed less obvious benefit, and it remains uncertain whether cannabis is beneficial in treating this symptom. The organization recommends that cannabinoids be used only “after patients have had a reasonable therapeutic trial of two or more established agents for cancer or palliative pain.”

But Vigano says both animal and human studies are unravelling how cannabis might help relieve certain types of pain. One way is by reducing inflammation that can cause pain. Others involve affecting pain transmission in the nervous system and altering the way the brain interprets pain. “Cannabis will help a patient to dissociate pain from their emotional reactions to it,” he said. The drug reduces the anxiety and stress around pain, which in turn reduces its impact.

 “Typically, the patient will report that maybe the pain intensity remained at a certain level, but the patient can still cope with it, can still live with it, can have a better quality of life, can be more functional,” he says.

Because of this, he has seen patients take less of their other pain medications, many of which have their own potential side effects.

Reducing those side effects can contribute to improved feelings of well-being, a result that was shown to be the most significant advantage of cannabis in patients with cancer attending Vigano’s medical cannabis clinic at the McGill University Health Centre.

Quality-of-life outcomes were the focus of a study out of McMaster University that looked at marijuana use among 148 patients with newly diagnosed head and neck cancer. Approximately half the patients used marijuana and half did not. Results showed that the marijuana users experienced less pain, fatigue, depression, anxiety, appetite problems and drowsiness and reported better general well-being.

Cannabis may also help some patients with advanced cancer who are experiencing cachexia (weight loss associated with decreased appetite and muscle wasting). A study Vigano worked on showed that some patients with cachexia experienced an improved appetite and quality of life after being treated with cannabinoids.

More studies are needed to sort out regimens and which type of cannabis may be the most helpful to patients with cancer, Vigano says.

When patients with cancer discuss cannabis with their care teams, doctors don’t write prescriptions, Findlay explains. Instead, they write letters of authorization. These letters allow patients to purchase medical-grade cannabis products from licensed vendors.

Not all doctors can provide authorization letters. Many provinces require registration for physicians or nurse practitioners who want to give them. In addition, many health-care providers aren’t comfortable with cannabis and don’t provide authorizations. Many are concerned about potential risks or simply don’t feel they know enough.

When patients do get authorization, they should start with low doses and slowly work their way to up a dose that has the effect they want in order to minimize possible side effects, Findlay says.

It’s hard to say whether legalization of cannabis has influenced more people to “self-medicate,” but Findlay, who specializes in non-cancer pain, frequently sees patients who have tried it before consulting him for help.

A survey of cannabis use that included almost 2,000 patients with cancer, published in June 2018 by Alberta researchers, found that 43 per cent reported using cannabis at least once in their life. Four in five acquired cannabis through friends, and only 10 per cent acquired it through regulated medical dispensaries. Of the 356 patients who reported cannabis use within six months before the survey, about 36 per cent were new users, with 46 per cent of those saying they tried it for cancer-related pain, 34 per cent for nausea, 31 per cent for other cancer symptoms and 56 per cent for non-cancer-related reasons (some reported multiple reasons).

Findlay urges any patient trying cannabis to stick with medical-grade products because they are standardized and without contaminants. He encourages patients to avoid recreational cannabis products or those sold on the street and to make sure their medical teams know about their cannabis use.

Features

Now that it’s legal for both medicinal and recreational use in Canada, cannabis is widely available to patients with cancer. How much it can help them is largely undetermined.

Weeding Out Uncertainty

Cancer brain fog — the fuzzy, slow thinking that often accompanies cancer and its treatments &mdash; is no picnic.

The condition, referred to in scientific circles as cancer- related cognitive impairment or cancer&#8208;related cognitive dysfunction, can involve trouble with remembering things such as words and problems with attention, problem- solving speed and executive function — the mental processes that enable us to plan, focus, remember instructions and multitask.

For most, it’s a temporary issue that gradually improves over time, but for some the “chemo brain” lingers long after treatment stops. The problem affects upwards of 75 per cent of patients during treatment and 35 per cent for months afterwards.

Studies show correlations between “chemo fog” and changes in brain function through imaging techniques, and it is increasingly recognized by health-care providers.

Nevertheless, there are no medications or standard protocols or programs for treating it, and resources can vary between centres across Canada.

There is help for people with the condition, though. Strategies — mainly physical and mental exercises &mdash; exist to help with specific aspects of the problem, and experts recommend that patients ask for them if they aren’t offered.

While the terms “chemo brain” and “chemo fog” are commonly used, “cancer-related brain fog” is a better name for it, says Lori Bernstein, an assistant professor of psychiatry at the University of Toronto who also works in the Department of Supportive Care at Princess Margaret Cancer Centre. “Chemo fog makes it sound like chemotherapy is the sole cause, but it’s not necessarily the cause in everyone. It’s only one of many things that can lead to the problem.”

Its causes can also include other cancer treatments (radiation, targeted drugs, immunotherapies, hormonal therapies or stem cell transplants), low red blood cell counts, poor sleep, fatigue, medications that generate drowsiness such as sleeping pills or pain medications, poor nutrition, dehydration, anxiety and the anesthesia used during surgery. It can even be a side effect of the cancer.

The effects and intensity of cancer- related brain fog vary from person to person. Even people who’ve had the same type of cancer and treatments have different experiences, making the condition difficult to predict.

This uncertainty remains because the exact mechanisms of how chemo brain happens are not well under- stood, Bernstein says.

Still, there is some data about the bodily processes that result in chemo brain. Some studies suggest that cancer treatments may cause central nervous system toxicity, which could have both direct and indirect effects on the brain. A 2017 study on animals by researchers in Alberta supports this, suggesting that chemotherapy leads to a process that essentially causes the brain to age during therapy. In addition, a 2018 study conducted at the University of California Los Angeles with breast cancer survivors found a link between cognitive decline and the biological aging of cells due to chemo- therapy and radiation.

Other studies suggest that inflammation is associated with cancer-related brain fog and may be an effect of medications or simply part of the cancer disease process.

Cognitive problems can occur before chemo- therapy, too. In a study from 2011, researchers at the University of Ottawa did brain scans of women with early-stage breast cancer while they performed neuropsychological tests. The scans were done after the patients had undergone surgery but before they began chemotherapy. Results were compared to those of a group of women who didn’t have cancer. While both groups had similar results on some of the tasks, the breast cancer patients were slower to respond on others and made more mistakes in visuospatial activities. The study showed that cognitive changes started before chemotherapy, as did differences in activity in several parts of the brain.

There are no quick medication fixes to help with brain fog. Some researchers have investigated using medications such as memantine, used in patients with Alzheimer’s disease, but “the jury is still out” on its effectiveness, says Kristin Campbell, a physical therapist and director of the Clinical Exercise Physiology Laboratory at the University of British Columbia.

Campbell is investigating the role of moderate-to-vigorous aerobic exercise, such as walking or cycling, on cognition in patients with brain fog. “There is emerging research suggesting physical activity can improve cognition in patients,” she says.

A 2016 review of 19 studies investigating the effects of physical activity on brain fog in animals and humans found that forms of exercise such as yoga may help reduce both symptoms and inflammation. And a 2017 study on women treated for breast cancer found that moderate-to-vigorous exercise can help ease both chemo brain and fatigue.

Generally, you can’t go wrong with being active to a level that feels comfortable, according to Campbell. Walking is a great place to start, she says, and besides yoga, activities such as gardening or tai chi may help, though there are additional benefits for those who can do more intense aerobic exercise.

“Tell your health-care providers if you are having problems and ask what help is available locally,” Campbell says. Sources of help include occupational or physical therapists, patient counsellors, support groups and psychologists. Some larger cancer centres have programs designed to help with brain fog. Help generally focuses on teaching strategies to cope with brain fog, such as doing memory exercises or creating reminder systems such as using sticky notes.

There are also online resources, including the Princess Margaret Cancer Centre’s “

” booklet, which Bernstein authored. It discusses the condition, causes and practical tips for managing the difficulties brain fog causes.

Patients can also find resources through the 

Survivorship

Cancer brain fog, or chemo brain, interferes with daily life for many patients. Help can take the form of mental or physical exercise.

Out of the Haze of Chemo Brain

You may not be very familiar with the Canadian Partnership Against Cancer (the Partnership), but the non-profit organization is working for you.

The Partnership was created by the federal government in 2007 to be the steward of a plan — created by an alliance of grassroots organizations &mdash; to improve cancer prevention, diagnosis and care in the country. It’s largely been accomplishing this by working behind the scenes to help provinces and territories change the way things are done in their individual health systems. Now, with the help of nearly 8,000 Canadians who shared their own priorities and ideas, the organization has created a new version of the plan for the decade ahead, the 

. The document, released June 4, is devoted to reducing the number of people who get cancer, helping more survive and improving their quality of life.

“We are a federally funded organization that is working with all of the provinces and territories in a true partnership to try to make all aspects of cancer care better and more equitable across the country,” says Dr. Craig Earle, vice president of cancer control at the Partnership and a practising oncologist at Sunnybrook Hospital’s Odette Cancer Centre in Toronto.

In overseeing the original plan, Earle says, the Partnership worked with provinces and territories to identify their challenges in providing cancer care and help them share best practices with each other. As a result, there is now only one Canadian province that doesn’t have a colorectal cancer screening program. The plan also resulted in a more uniform ability for provinces and territories to build cancer registries that reflect details about the stage of each cancer recorded, he says. And under the plan, the Partnership launched a landmark research database that collects health and lifestyle information from more than 300,000 Canadians to understand why some people get cancer and others don’t.

The 2007 plan was updated, Earle says, to reflect the advances in technologies and treatments over the past 12 years. The new plan is also different in that it includes more narrowly defined action items than the original one, which was essentially a list of all the important concerns in the cancer arena.

The Canadian Strategy for Cancer Control is focused on five basic priorities:

This will be done through smoking cessation or prevention, as well as other proven practices.

While other organizations such as Health Canada will take the lead on smoking cessation in general, the Partnership will continue to lead one aspect of the effort: encouraging tobacco cessation among patients with cancer. “A few years ago, the Surgeon General in the United States pulled together data to support the importance of this — not for prevention, but for cancer treatment,” Earle says. “It’s all more effective if you’re able to quit smoking. We’ve helped every jurisdiction develop a program, and now some are reaching out beyond cancer centres to hospitals without formal cancer programs to do tobacco cessation programs there.”

Another big goal within this category is the near- elimination of cervical cancer.

“The World Health Organization has made an international call for this to happen, so the time is right. We really could eliminate a cancer” — or at least bring its frequency rate to just a few cases per every 100,000 people, Earle says. That would be done by vaccinating everyone eligible against the human papillomavirus, moving away from pap testing and toward HPV testing to screen for cervical cancer and optimizing the latest treatments for the disease.

Earle noted that, while all jurisdictions have access to the HPV vaccine, “some still give it only to girls in their early teens, others give it to boys and girls, and there are differing policies about people beyond school age getting it.”

Yet another preventive strategy would be to automatically test everyone with colon cancer for Lynch syndrome, a familial predisposition to that cancer and some other types; if patients tested positive, this would allow genetic testing of their family members so that those affected could be preventively screened for cancer. Similarly, the preventive removal of the fallopian tubes in women undergoing hysterectomy could head off some cases of ovarian cancer, and the practice will be promoted by the plan.

The Partnership will address this by facilitating quicker access to diagnostic appointments for patients when cancer is suspected. It will also work to strengthen screening efforts by establishing lung cancer screening programs throughout Canada and navigating the appropriate patients to them.

“No large jurisdiction has a significant lung screening program, but we have some provinces doing pilots of how it would work,” Earle says. One problem so far has been that doctors are sending ineligible patients — those who have smoked, but not heavily &mdash; for screening while those more likely to benefit from the testing are not getting it. Another issue has been the use of higher-dose radiation tests, which is not called for in screening guidelines, he says.

Deliver high-quality care in a world-class system.

This effort will involve establishing best practices and standards and creating new care models.

The Partnership will pave the way toward this goal by focusing on underserved communities and those that are rural and remote, as well as ensuring that care can be delivered between provinces when necessary.

The Partnership is considering the creation of a virtual cancer centre of the North that would capitalize on advances in telemedicine, patient portals, electronic health records and more to reach patients who live in remote northern areas of provinces and territories.

“It’s a huge geographic area, but not such a huge population,” Earle says. “Could we start and focus our efforts there, helping to navigate them through the system and bringing them to a province to have a procedure sometimes? We’d like to at least initially explore how to work with our partners to do these things.”

Provide information and support to patients and their families.

This will include addressing the limited and uneven access to palliative and end-of-life care across the country and supporting children, adolescents and young adults in their cancer journeys.

The plan also places a special focus on priorities of First Nations, Inuit and Me&#769;tis people, who together compose about 5 per cent of Canada’s population. These priorities include the provision of culturally appropriate care closer to home; peoples-specific, self-determined cancer care; and research and data systems governed by these communities.

“In the initial strategy, there was little mention of indigenous peoples,” Earle says. “In Canada, these are populations that have been (medically) underserviced. (One reason is that) about half live in fairly remote and rural settings. In addition, there’s been an unfortunate history of colonialism; we’ve not treated our indigenous peoples well. So, there’s a strong movement for reconciliation and to improve things for this population.”

In preparing the plan, the Partnership interviewed thousands of Canadians from all provinces and territories.

“The largest chunk was the Choicebook, an online survey anyone could do, and we did a major campaign to publicize this work and encourage people to fill out this questionnaire. We asked people their priorities. In my favourite one, we asked, ‘If you had $100 to spend on cancer, how would you divide it up between prevention, screening, diagnosis, treatment, palliative care and survivorship?’ Prevention of cancer was the number one thing they picked, but in public health, prevention is not where our major spend goes.” That insight helped shift the focus of the plan.

The Partnership also spoke with people at public sessions across the country, some of them targeting specific under-served groups such as LGBTQ people or indigenous peoples. Other meetings included health-care providers, and one brought together the heads of Canada’s cancer agencies.

“Although we couldn’t include everything that was brought up, in the end we came up with a list of priorities and actions that we didn’t hear any disagreement about,” Earle says.

While patients can’t join the Partnership in its behind-the-scenes role working with health-care systems, they can make their wishes known. One way is by asking for the care called for in the plan when visiting their doctors, Earle says. The Partnership also regularly does work with patient and family advisers. It is working to grow this network and encourages any Canadians affected by cancer — patients, families, friends, caregivers &mdash; to get involved by e-mailing 

In any case, Earle believes it’s helpful for Canadians to know that the Partnership is working to support them through their cancer journeys — and to prevent more of those journeys from ever starting.

“It’s good to know about your health-care system, and that we are trying to make it as equitable as possible for all Canadians, no matter where you live or who you are,” he said.

A new national strategy for cancer prevention, diagnosis and care aims to make the provision of services and support more equitable across Canada.

A Fair Shake

When waiting for the findings of a cancer test, “I had already made up my mind that I was definitely not going to get my results online,” says Maureen Barlow, a Toronto-based graphic designer. “I couldn’t imagine sitting in my living room on my laptop and getting my diagnosis without a doctor to decode the pathology jargon, skimming through the paragraphs of clinical notes until I found the dreaded word, ‘carcinoma.’”

The 48-year-old had been complaining to her family doctor about a strange ache in her armpit for more than a year when, finally, she was referred to a breast surgeon at Toronto’s Mount Sinai hospital who ordered her a mammogram, an ultrasound and then a biopsy to be done at the nearby Princess Margaret Cancer Centre. Princess Margaret is a part of the University Health Network (UHN), which is made up of five hospital sites and operates a secure website called myUHN that allows patients in the network to see their results and appointments in real time.

“At Princess Margaret, I was set up on the myUHN Patient Portal (which requires a registration code that is given to patients at their clinic) and told that the (biopsy) results would be available in 10 to 14 days,” Barlow says. “Six days after the biopsy and two days before my appointment with the breast surgeon, I got an alert from the portal saying I had new results.”

Barlow, who had long expected that she had breast cancer, stayed true to herself and waited until her appointment so she could go over the results with a doctor. But even though that’s the way it was always done before the era of digital technology, she felt he was hoping she already knew what they were going to talk about that morning “He said, ‘So you’ve seen the results?’ and then I told him that I had chosen not to look online and that I wanted the news from him,” she says. “He looked slightly weary and then, of course, delivered the expected blow, telling me that I had inflammatory breast cancer.”

This conversation was a critical part of Barlow’s cancer experience, she says; it was important to her to hear the details of the diagnosis and next steps in person. “I also needed to see his face to see if I could glean any good news. Unfortunately, he kept saying, ‘This is not good.’”

The upside to waiting for her results was that, once she had them, she was hustled over to a nurse right away to set up all of the necessary appointments, instead of reading the results online and then having to endure an anxious wait.

While getting scary test results online without medical guidance is not for the faint of heart, it turns out Barlow is in the minority when it comes to finding out health results in real time. Many people are taking advantage of the growing number of patient portals that electronically share health information with patients with the goal of giving them ownership over their own health care. Shared privately, the information can give patients the opportunity to check their health records for accuracy, find out when upcoming appointments are and prepare for them, and review facts they missed during talks with doctors.

“Ninety-four per cent of patients prefer to look at their results as soon as they are ready, even if they could be worrisome,” says Vasiliki Bakas, manager of the myUHN Patient Portal, citing results of a survey that looked at patient perceptions of myUHN and of the practice of accessing test results online. The same percentage feel better prepared for appointments and report better management of their care when they have early access to their results, and 92 per cent feel better able to make decisions about their care, the survey found. Ten per cent of patients found incorrect or outdated information in their portals, improving the safety of care by allowing them to point out the problems, a summary of the survey results stated.

The survey, completed by almost 10,000 UHN patients, was launched in fall 2017, about nine months after myUHN expanded across all hospital sites. Bakas notes that the findings echoed feedback received from patients after the initial launch of myUHN in seven early-adopter clinics. Meanwhile, a survey of nearly 800 staff members in early 2018 found 83 per cent in favor of patients being able to decide how they want to access their results. Seventy-six per cent believe that waiting for test results causes anxiety for patients, and also that portals improve patient-provider communication. Eighty per cent said the portal improved management of care.

But what happens after patients receive online results that leave them wondering about the gravity of their condition or how it will be treated?

“We have received anecdotal feedback that calls to physicians and their offices about results have increased,” Bakas says. “In our evaluation, 41 per cent of staff reported an increase in calls, 39 per cent responded neutrally and 20 per cent reported no increase.” Bakas notes that her team has developed patient and staff resources and training to help with these challenges.

Dr. Jeff Lipton, a medical oncologist at Toronto’s Princess Margaret Cancer Centre, says that while access to test results can sometimes be helpful because patients don’t have to contact him for results, his workload has increased since the portal’s inception because patients frequently contact him anyway to ask questions about those results — a situation that can be frustrating and taxing on the doctor-patient relationship.

“I generally have troubles with the portal because most patients don’t understand the results or how normal values are obtained, and do not see or understand the trends,” he says. “It generates a lot of anxiety and a million irrelevant questions, and then patients are jumping from the portal to the Internet and self-diagnosing.”

Dr. Lipton’s experience may be a clue as to why the province of Nova Scotia has taken a bit of a different approach to allowing patient access to test results. MyHealthNS, which launched in 2016, puts the control over information in the hands of doctors instead of patients.

“We have given family doctors the ability to manage their own practice settings for the release of results to their online patients,” says Andrew Preeper, media relations adviser at the Nova Scotia Department of Health and Wellness, adding that physicians are advised to explain possible outcomes to patients when tests are ordered as a way of managing expectations and reducing anxiety.

“Unlike some jurisdictions in Canada, where patients have access to results as soon as they are available from the lab, some doctors have set up a hold so they are sure to have reviewed the results before sharing them with the patient,” Preeper says.

Despite these challenges, patient access to test results signals a significant turning point in patient care, Preeper says.

“A major advantage is that the old ‘no news is good news’ approach to sharing test result information is replaced by a much higher standard,” he says. “Not only does this improve the level of patient involvement in their own care, but it adds a new dimension of quality to the patient experience.”

Online access to tests and health records also offers enhanced efficiency for both patients and physicians, since it reduces the number of appointments that have to be made, which opens up time for other patients, Preeper says. Other advantages, he says, include improved safety, since patients can check that their medical information is correct and push for follow-up care after receiving results.

One only has to think back to the tragic story of 31-year-old Calgary resident Greg Price, who died in 2012 of complications from testicular cancer that was diagnosed too late because of referrals to specialists that were never carried out and diagnostic reports that were never acted on. The well-known story also inspired a film called “Falling Through the Cracks: Greg’s Story,” which has become a part of the curriculum for first- year medical students at the University of Calgary and helped to launch a study into Price’s death by the Health Quality Council of Alberta (HQCA). One of the conclusions made by the HQCA was that patient access to electronic reports and the ability to track specialist referrals needed improvement.

“Patients who have their reports and results are better informed on their health status and can make more informed decisions about health care and manage their health,” Preeper says.

“Having access to your test results is a great thing,” says Machado, of Toronto. “Sure, if I see scary results, I Google everything. But I want to know. I feel it softens the blow of bad news. And good or bad, I want to know. It’s my right as a patient.”

Machado was diagnosed with stage 4 hepatocellular carcinoma, an aggressive liver cancer, in September 2014 at the age of 39. After five radiation treatments over two weeks and almost two years of taking a daily oral cancer medication called Nexavar (sorafenib), he was told in June 2016 that he was cancer-free. Since then, he has had a scan every three months to check for relapse, and after every scan he logs into myUHN to find out the results. Last year, as he skimmed through the report, the word “metastasis” made him catch his breath.

“Sure, it was scary, but the anxiety of waiting between the test and the doctor’s appointment is way worse,” he says. “First, online access lets me find out things that put my mind at ease. For example, I had been worried about a strange pain around where my liver was, but I saw in the report that I had a fractured rib, which stopped my anxiety and saved me a trip to the doctor. There are three weeks sometimes between the scans and when I see someone. I can’t wait that long to find out. That’s three weeks of anxiety.”

While you might argue that knowing bad results for three weeks before seeing a doctor would make anxiety worse, Machado disagrees.

“You are worried already,” he says. “I want transparency. I want to see what they write. I want to know what’s happening. I also want a moment to freak out by myself without a doctor telling me how I should react.”

Machado does believe there are a few aspects of patient portals that could be improved. One would be for healthcare facilities to allow immediate contact between the patient and the treating doctor in cases where the diagnosis will cause significant worry and anxiety, such as in cases of cancer.

Digital health in Canada has been slowly coming of age over the last two decades, largely driven by Canada Health Infoway, an independent, federally funded, not-for-profit organization with a mandate of getting digital health solutions like electronic health records into use across Canada to help Canadians manage their health better.

Infoway, which collaborated with the government of Nova Scotia to develop MyHealthNS, is governed by 14 federal, provincial and territorial deputy ministers of health, and in 2018 it launched its Driving Access to Care strategy to increase the use of digital health solutions in Canada. The strategy includes ACCESS 2022, a movement to provide more Canadians with access to their personal health information and to digitally enable health services anytime and anywhere from the device of their choice. Infoway’s mandate means that comprehensive digital access, for records ranging from electronic medical records to test results, will eventually be available to patients and clinicians in every part of Canada. Currently, the extent of digital access across the country ranges from comprehensive, like myUHN in Ontario, to none at all, as is the case in Newfoundland, where Karen Pike lives.

Pike, who lives in Portugal Cove-St. Philips, just 15 minutes outside of St. John’s, relies on follow-up appointments with her doctor in order to find out test results. She can request results before an appointment as well as health records, but she has to pay for them.

“Copies of test results can be requested through a release-of-information application to the Health Information Services Department,” she says. “While the fees vary depending on what’s requested, it’s generally $10 for up to 25 pages and 25 cents for every page above that.”

Pike says that when online access comes to her province, she will definitely use it to keep up with medical tests and reports. However, she acknowledges that it’s not for everyone.

“I believe when it comes to access, it’s great for what you actually understand, but when it comes to results, we should leave it to the professionals,” she says, adding that it’s important to remember that they are experts and skilled at interpreting the results. “Ask questions, absolutely. You are your best advocate. But we, as patients, have enough to deal with just living with diseases. We can do without the additional role of having to worry about what exactly results mean.”

Despite Barlow’s initial reluctance to read her reports online, she now embraces the portal.

“After the initial shock wore off, the former scientist in me got curious,” she says. “I calmly went online and read the results on my terms. I was able to look up definitions and was comforted by the fact that my story to this point was on record, and that I had access to it.” She adds that patients don’t always get to see the actual test results or pathology reports, but it helps “to give the whole picture,” especially if you miss something during an appointment.

“It’s so easy to miss something that the doctor says during an appointment,” she says. “I’ve often read and re-read their clinical notes to clarify something I was unsure of.”

Barlow is now a cancer survivor, but because she is still on active treatment, she continues to use the portal for test results as well as appointment updates.

“I actually really enjoy being able to see these results and compare them to previous results as a graph,” she says.

In Preeper’s opinion, online access to health information is “a new frontier in health care.”

For Canadians like Barlow, Machado, Pike and others, it’s a frontier that promises to transform the way patients interact with Canada’s health-care system — and may improve the quality of care.

Real-time access to test results and doctors’ reports is putting control over health into the hands of patients.

Power to the Patients

With Canada’s patchwork of pharmacy plans that offer varying benefits and leave many uncovered, accessing drugs can be difficult and confusing. As a drug access navigator at North York General Hospital, my mission is to help patients meet any challenges they face when it comes to getting the medicines they need.

In providing this aid, drug access navigators like me usually follow one of two paths, defined by the parameters of either private or public drug coverage. Knowing which type of plan the patient has or is eligible for determines what we will explore, which drugs will be available and when they can be obtained.

For example, if a patient has a private drug plan — one of thousands that exist in Canada &mdash; he or she may be able to obtain drugs that are not in the approved formulary of the Ontario government. This can allow patients to get newer drugs, but that is assuming their private drug plan will pay. We run into many challenges with private drug plans. Before being dispensed, almost every cancer drug must be pre-approved by these drug plans, with very specific criteria for those seeking pricier drugs. Even patients who need swift treatment may have to wait two weeks for a decision. Then, if the plan approves the drug, it may charge a co-pay (many private drug plans, in my experience, ask patients to pay 10 per cent to 30 per cent) or place an annual or lifetime cap on what it will pay. For example, if a drug costs $8,000 a month and a plan caps drug payments at $10,000 annually, then a patient is only covered for one month of the therapy in a year.

If a patient does not have a private drug plan, we will look into public coverage. For instance, patients in Ontario who are over 65 or under 25 are automatically covered by the Ontario Drug Benefit (ODB). This will pay for drugs as long as they’re on the government formulary. Almost all oncology drugs covered under this program must be authorized by the Exceptional Access Program (EAP), run by the Ontario Ministry of Health, so navigators often submit requests to this program on behalf of patients. These requests usually take one to two weeks to process, but in the meantime, patients can often start therapy immediately with help from the drug’s manufacturer.

If patients are over 25 but under 65 and have been prescribed expensive medications, we assist them in applying to Ontario’s Trillium Drug Program. This program provides access to the same drugs that are available to people over 65 or under 25, but patients must first meet a deductible equalling 4 per cent of their net household income; for most families, this works out to between $1,000 and $3,000 per year.

Often there is a gap of one to two years between Health Canada approving a new oncology drug and it becoming a benefit under the ODB or Cancer Care Ontario formularies. During this gap period, patients with a private plan may be able to get the drug, but it will not be paid for by the government. For those without a private plan, drug manufacturers may provide these drugs compassionately.

So, while drug access navigators are looking through coverage options, we often will enroll patients in patient support programs run by drug manufacturers. These programs provide financial support to patients who have co-pays, and can include free drugs. As drug access navigators, we rely on these programs heavily. For example, if someone is prescribed a drug that costs $6,000 a month with 80 per cent private coverage, the 20 per cent they owe will come to $1,200 a month. Instead of the patient paying $14,400 per year out of pocket, we would seek to have that $1,200 per month paid for by the patient support program. There are many such programs, and each has its own criteria and offerings. It is best to check with a drug access navigator to see what opportunities may exist for your specific situation.

In addition to these pathways, we also assist with requests to the Health Canada Special Access Program (SAP) for drugs not yet approved for use in Canada. For these requests to be approved, drug manufacturers must agree to provide the medication. There is no charge to patients for SAP drugs.

A final way that drug access navigators can help is with cancer genetic testing. These tests are often expensive, but they allow genetic alterations to be identified so that targeted therapies may be used. These kinds of requests are becoming more and more common in cancer care, as not all gene testing is paid for publicly. Unfortunately, coverage for private testing is limited right now, but patients with health spending accounts can use those dollars to pay for the tests.

If you’re a patient with cancer who is paying out of pocket for expensive medications or who needs assistance with drug coverage, you may be able to find aid. Many provinces have drug access navigators or reimbursement specialists at their cancer clinics who can look at your situation to see if there is any way to help; you may just need to ask. If you’re an Ontario resident, please visit 

It can be challenging and confusing to get prescription drugs paid for in Canada. Drug access navigators can help.

Summer 2019 | CURE, Canadian Edition