Navigating Your Lung Cancer Care

Access to treatment: a lung cancer patient story

“I’m a unicorn,” says Anne Marie Cerato. “I’m a rarity.” Anne Marie was diagnosed with stage III lung cancer in 2009, when she was just 30 years old. At the time she wondered if she would live more than a year or two. “Cancer changed everything,” she reflects.

Six months into an intensive treatment plan, Anne Marie was given the opportunity to take part in a clinical trial that would change her life. The trial gave her access to crizotinib, a targeted therapy that she could take in pill-form. In addition to causing less intense side effects, this new therapy meant that she could fight her lung cancer comfortably from her own home. Game changer.

Anne Marie’s game-changing treatment wasn’t widely available at the time, and it wasn’t publicly funded by her home province of Ontario. In fact, years passed between the drug’s approval in the United States, to approval in Canada, and finally to funding by the province of Ontario. If it wasn’t for the clinical trial, accessing the treatment would have been an uphill battle – maybe an impossible one.

More than a decade later, Anne Marie has defied survivorship statistics thanks to unprecedented advancements in lung cancer treatment. In fact, her experience with targeted therapies has lead her to advocate harder than ever for treatment access.

Around 30,000 Canadians are diagnosed with lung cancer each year. Without access to the right treatments, few will survive to call themselves unicorns.

Why treatment access matters

• Because acting fast is everything when it comes to lung cancer treatment. More treatments (unlocked by early molecular testing) mean a better chance of finding a fit that’s just right for you as early as possible in your treatment journey.
• Because access isn’t just about getting the treatments – it’s also about making sure that you can afford them. Nobody should go broke while fighting lung cancer.

What we’re doing about it

The Lung Health Foundation is confronting the issue of treatment access in three key areas: increasing access & affordability, improving the diagnosis and molecular testing system, and finding efficiencies in health technology assessment (HTA) processes/approvals. Read more in our Precision Medicine policy paper, The Right Treatment for the Right Patient at the Right Time.

When care is far from home

It is often more difficult for people in rural and remote areas to access lung cancer screening, screening, diagnosis and treatment. If you live a long way from your cancer centre, you may need some extra help.

The first step is to talk to your cancer care team about the time and travel commitments for the treatment you have chosen. If your treatment requires regular visits (for example, radiation
can require daily appointments at the cancer centre) then you may need to find a place to stay close to the cancer centre for a period of time. You may be able to make arrangements for this type of stay through the staff at the cancer centre. Some cancer centres have hostels or partnerships with local hotels.

If you require fewer trips to the cancer centre, you might make travel arrangements with family and friends. You should also talk to your healthcare team to see if some parts of your treatment are available at a healthcare facility closer to your home. This would mean you would not have to make a lengthy trip to the cancer centre.

Many cancer centres have arrangements for parking passes that cancer patients can use when they come for an appointment. Be sure to ask the staff at the cancer centre about such arrangements.

Advanced Care Planning

Advanced care planning is a process of thinking, talking and telling others about what we want for the healthcare we want to receive in the future. When you have a serious illness, it is important to talk with your healthcare team about several things: what might lay ahead, what type of care you might need, what choices might be available for you, and the type of decisions that might need to be made. Talking these things over with your family and your healthcare team members, and letting them know about your wishes, will help you feel comfortable and confident about future decisions that could be made on your
behalf.

Taking the time to write your instructions down is another important step. This document is called an advanced care plan. Visit advancarecareplanning.ca to learn more.