How Self-Advocacy can Save Your Life: Lorna’s Journey as a Cancer Patient and Advocate
Lorna McKinley has been living with Polycythemia vera (PV) blood cancer since 2012. As a former special education teacher, Lorna knows firsthand how important self-advocacy can be. Lorna has been lucky to receive excellent care, but now as a full-time advocate, she has learned just how lucky she has been compared to others across the country.
When Lorna was first diagnosed, she was sent to her local cancer center in Kitchener for treatment. For four years, she had very basic treatment until her platelet count went up in 2016. At this time, she learned about a myeloproliferative neoplasm (MPN) specialist in Hamilton and requested a referral from her hematologist. Lorna is lucky to live only a 45-minute drive from the MPN specialist, as there are not many across the country. On the West Coast, Vancouver has one and Calgary has two, in Ontario, Hamilton has two, London recently hired one, and Toronto has several. In Quebec, Montreal has three. For those living with PV outside of these regions, there is no access to a specialist outside the urban areas
Lorna’s cancer is currently being treated by a drug that would cost $60,000 out of pocket. Thanks to Cancer Care Ontario, Lorna’s costs are subsidized for the treatment. Again, in other provinces this is not the case.
Since retirement, Lorna has dedicated her free time to advocacy. In this world of online information, she recognizes there is a surplus of information available, but it can be hard to find good and reliable information. Through her support groups, Lorna’s goal is to equip PV patients with the information they need to self-advocate within their medical support teams. For PV patients, next generation sequencing is extremely important. This is where clinical trials and precision medicine play a key role. Lorna knows she has been extremely fortunate but has met others who have taken years to get diagnosed because of a lack of access to genomic testing and next generation sequencing.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
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