Soyean Kim is head of products at the Centre for Infectious Disease Genomics and One Health (CIDGOH) at Simon Fraser University.
I am a Canadian, living in Vancouver, with Stage 3 cancer. This means my cancer is advanced and may be spreading.
I also work at the Centre for Infectious Disease Genomics at Simon Fraser University. I am an accredited professional statistician and a member of the United Nations Privacy Enhancing Technology lab. My work deals with health care IT infrastructure and technologies that support genomics-based innovation.
As such, I have a unique perspective on Canadian health care. And I am certain we can do far better for cancer patients, the medical system and the taxpayer, all at the same time.
Like many cancer patients, I have been receiving Canada’s one-size-fits-all standard of care for cancer, which is comprised of multiple rounds of chemotherapy and radiation. It’s excruciating, and I empathize with everyone who goes through it. For me and many others, the injections result in neuropathy, open sores, massive weight loss, vomiting and perpetual nausea. Toxicity is 100 per cent, all for a smaller than 48-per-cent chance of efficacy. Essentially, it’s a coin flip.
But a more targeted, “smart” genomics approach is available to Americans and other patients around the world. Many types of cancer are accompanied by “circulating tumour DNA,” or ctDNA, which comes from the tumour and circulates in the bloodstream. It can be used as a biomarker for the advanced stages of many cancers, including ovarian, liver, pancreatic, bladder, colon, lung, stomach, and others. Genomics-based ctDNA tests can help patients answer a key question: What treatment and/or management will work best for me based on my tumour’s genetic makeup? In a ctDNA test, blood and tissue samples are analyzed to determine a patient’s unique set of tumour mutations, and follow-up testing – often in the form of simple blood tests – leverages this unique profile to monitor and manage a patient’s therapy response.
Early evidence shows this novel, ctDNA-guided approach can reduce chemotherapy use without compromising the chance of survival. An individualized treatment approach may be associated with improved survival and quality of life through better organ preservation. In short, the ctDNA test can mitigate suffering, reduce costs and improve outcomes by better matching patients with the most promising treatments and management strategies available.
How much would a modern genomics-based option cost the Canadian health care system? In relative terms, not much.
Cancer treatment is notoriously expensive and could span the entire lifetime of a patient. While costs are difficult to pin down due to many variations, Canadian data shows colorectal cancer costs around $44,000 (in 2009 dollars) in the first year alone after diagnosis. Breast cancer costs range from $30,000 to $36,000, including chemotherapy, radiation, surgery, hospitalization and home care in the first year.
In recent years, partially owing to dramatically increased activity in the genetics field during the COVID-19 pandemic, pricing for personalized genomics-based testing has become commoditized and available to consumers. The list price for a typical ctDNA test is $949 in the United States, although the actual cost can vary. Clearly, integrating a genomics option does not break the bank. In fact, it could save Canadian taxpayers millions of dollars, as genomic data could lead to better treatment choices. It’s a far better scenario than the coin flip that today’s treatments beget.
Ultimately, I leaned on my health industry connections around the world to improve my own treatment. After consulting with colleagues at a U.S. genomics conference, I am working with multiple providers to access better care. For example, my pathology samples – basically slices of my tumour – have been sent internationally for analysis. Ironically, my cancer is living its best life travelling to places I always hoped to visit. I suppose, in a morbid way, “I” am there.
My struggle to supplement my Canadian health care has come at a personal financial cost, but in some ways I am lucky – my Canadian oncologist eventually supported my decision. The most challenging aspect of advocating for change is the feeling of helplessness and a lack of agency; moving through the system as if I am a passive package where critical decisions regarding my own survival are made for me and not with me. It’s life or death for me. The boundary between private and public has blurred.
Unfortunately, despite its promise, access to genomics tools is out of reach for most Canadians. I encourage Canadian health care decision makers to undertake a systematic review of this new technology, including a detailed cost-and-benefit analysis, as a first step toward improving patient outcomes and reducing health care costs.
After all, a solution for better, cheaper cancer care may be hiding in plain sight, right within our genes.