Concerned stakeholders explore how employers can make the experience easier for cancer patients

The man at the front of the room has a friendly but uncertain smile. Bob is sixty-two years old, a resident of Nova Scotia, a non-smoker and a social drinker. He’s a car salesman by occupation, with a wife named Mary, two children, and grandchildren.

With his trim figure, it’s easy to believe that Bob has been healthy for his whole life. But he has cancer.

At Benefits Canada’s 2014 Employers Cancer Care Summit, Dr. David MacDonald, a hematologist at the Queen Elizabeth II Health Sciences Centre in Halifax and assistant professor of hematology with Dalhousie University’s Faculty of Medicine, shared the story of this hypothetical patient through photos and dialogue to show the typical reactions of a newly diagnosed cancer patient.

Upon receiving a cancer diagnosis, the average patient’s concerns go well beyond the medical to focus on issues such as work, finances and family, MacDonald explained. Like most patients, Bob’s mind leaped quickly toward worst-case scenarios. When MacDonald told him his chance of survival was 70%, what Bob heard was that he had a 30% chance of dying.

How to improve the quality—and outcomes—of this initial doctor/patient conversation? MacDonald said he wished that more people were involved.

“In the cancer clinic, there should be a multidisciplinary approach to every new patient,” he suggested. “It shouldn’t be necessary for me to ask Bob if he has personal insurance. The clinics need to be set up differently so that patients meet the social worker before they meet the doctor, so I don’t have to approach those difficult topics that won’t go over well and just cause the patient stress.” MacDonald added that a medical resources specialist might help to deal with related issues, such as the financial burden and social isolation.

What Employers Can Do
MacDonald was clear on the role that employers need to play in the financial and practical aspects of a cancer diagnosis. “I want to impress on people that your decisions can make Bob’s life easier or harder.”

For example, in a post-presentation interview, he urged employers to let patients set the pace for returning to work. “The experience that I have with patients is them handing me their back-to-work forms, and I have to say to them, ‘How long can you carry a 10-pound box?’ That’s nonsense; that’s irrelevant,” he stressed. “They’re tired, and they can’t quantify that. Patients feel the employer is trying to push them back to work earlier than they are ready—rather than try to provide access to rehabilitative programs and emotional and psychological support.” MacDonald added that such programs could include everything from gym memberships to access to nutritionists.

Dr. Sunil Verma, a medical oncologist at Sunnybrook Odette Cancer Centre and associate professor at the University of Toronto, also suggested ways that employers can help with the patient experience, specifically relating to breast cancer. “We need to make the cancer journey as smooth as possible and as fruitful as possible for [employees] to return to their workplace and a normal life,” he said.

Verma listed a number of side effects that persist after treatment, including depression, weight gain, cardiovascular issues, chronic fatigue (as a result of the cancer or the treatment), joint pain, osteoporosis (a side effect of the antiestrogen pills sometimes given in treatment), sexual dysfunction, cognitive dysfunction (known as “chemo fog”) and hot flashes. It is at this point, he explained, that support is crucial.

“In the recovery phase and the transition to [patients’] ‘new normal’ is where I feel sometimes the system doesn’t do them justice,” he added. “We’re very good at treating the patients, treating the disease, offering them support during the treatment phase. But I don’t think we’re very good, as a cancer system, in helping patients integrate back into society—not good at saying, ‘How else can we help?’”

Verma says if he had a wish list for follow-up, it would include having drug plans and funding from employers complement current funding for treatment to ease the financial pressure on patients, and provide access to support programs to help them cope with treatment and the transition back to their daily lives. “This is where all of you employers and folks from the drug plan industries can help us—to say, ‘Can we set up rehabilitation programs?’” he stressed. “Cancer rehab works to get patients back to their normal activity levels. Evidence shows that, with exercise, you are able to tolerate chemotherapy much better, get back into the workplace and reduce risk of recurrence.” Verma added that psychosocial programs (e.g., support groups and access to counselling) are also very important.

Advocating for New Solutions
When it comes to improving the experience for all cancer patients, one challenge is the way cancer drugs are currently being covered. Deborah Maskens, co-founder of Kidney Cancer Canada, shared her personal story about living with Stage 4 kidney cancer as a terminal but stable patient for more than 16 years—thanks to expensive oral drugs. As part of the CanCertainty Coalition of 34 cancer groups (cancertaintyforall.ca), she is advocating to equalize payment for oral and intravenous cancer drugs.

Employers can provide support and raise awareness on this issue. Outlining how different provinces cover cancer drugs on different bases—including age, type of cancer and income—Maskens noted that until the provinces comply with the advocacy group’s requests, the role of employers and private insurance companies is to bridge the gap that currently exists.

On the education front, Prostate Cancer Canada CEO Rocco Rossi spoke about the importance of regular testing and public awareness. He suggested that a prime way for employers to help is to post resources directly on their company’s intranet, especially if there is a health section. Cancer is no longer a death sentence, yet it’s still a tough road for employees struggling with the disease. But employers can alleviate some of that strain by offering the right kinds of support, so that Bob—and others—have a better experience.

How rare are rare cancers?

Although experts debate the number, a rare cancer—according to RARECARE, an EU-based project investigating rare cancers—is defined as one where the incidence is roughly six cases per 100,000 annually. But considering that these cancers account for 22% of all cancer diagnoses and that there are 186 of them (according to a 2011 article in the European Journal of Cancer), they’re not really so rare.

Almost as worrying is the attitude toward rare cancers in Canada. Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders, noted that while the U.S. and the EU have passed legislation that encourages research on these cancers, Canada lags behind.

“For the most part, nobody is doing the research and development for these drugs,” she said, adding that although Health Canada drafted an Orphan Drug Regulatory Framework in 2012, it was never approved.

How can employers help? Participate in the Canadian Life and Health Insurance Association’s risk-pooling scheme. “[It] will allow employers to support their cancer patients without dramatically affecting the overall cost of the insurance plan and the premiums for all other employees.”

There are also ways to support employees directly. For example, they may need to try different treatments. “Some of these will not be approved indications for the cancer (i.e., they are using the drug ‘off label’). Plans should allow for both experimentation and off-label prescribing.”

The Genetics of Immuno-oncology

Most cancer patients have to endure some combination of this treatment trio: surgery, chemotherapy and radiation. Dr. Awny Farajallah, vice-president, medical, for Bristol-Myers Squibb Canada, introduced a fourth: immuno-oncology, which harnesses the body’s immune system in the fight against invaders.

Cancer is a tricky invader, as it can genetically modify itself or hide, or trigger an inhibition of the immune system, he said. By understanding how cancer works in relation to the immune system, researchers can recruit the latter to fight it.

Immuno-oncology agents are designed to harness the natural capabilities of the patient’s immune system to fight cancer by targeting the very same pathways that tumour cells use to evade recognition and destruction.

“What happens is that you trigger the immune system, saying, ‘It is time to activate—go and take care of this,’” he explained, noting that Bristol-Myers has an extensive research program exploring the use of immunotherapy across multiple tumour types, including metastatic melanoma, lung, renal, and head and neck cancer.

Suzanne Bowness is a freelancer writer based in Toronto.

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