As a Registered Nurse, I was recently invited to attend the International Myeloma Foundation’s annual Nurse Leadership Board (NLB) meeting in Dallas, Texas. This meeting was well attended with 16 nurses from across the major cancer centres in the United States, most of which are advanced practice nurses (ie, Nurse Practitioners, MSc’s and PhD's). I had the honour of representing Canada on the NLB as an International Affiliate along with another member from Australia. Interestingly, a couple of main themes resulted from this meeting, such as "shared decision making" and "financial toxicity".

Shared decision making is an important topic that is gaining more recognition by healthcare professionals. As patients are increasing their understanding of their disease and treatments, they are becoming more empowered. Those that feel empowered will be more likely to take their health into their own hands, make better lifestyle decisions (exercise and good nutrition) and will be more compliant on very complicated treatment regimens. Empowerment also places the patient as the captain of the team, with their healthcare professionals "on the bench" with them, as opposed to the patient feeling separate from the team, isolated and helpless. In my experience, an empowered patient is a resilient patient, and resilience is key for the turbulent course of the myeloma journey.

Financial toxicity is an interesting topic as its meaning is different in Canada versus the United States (US). It was an enlightening experience for me and for my American colleagues to learn from. In the US, some patients who do not have health insurance literally have to choose between paying for their electricity bill, or a few months of myeloma treatment. Many patients re-mortgage their home in order to pay for their treatments, even if they have health insurance. The option to re-mortgage their home is only an option for those who actually own a home, which of course is not an option for many. So, what do those patients do? They die. This was very shocking and quite upsetting for me to hear. In Canada, I've seen only a few patients re-mortgage their home, but these were mainly rural patients that needed to finance their caregiver to be with them for the course of their transplant, which is only done in Vancouver (for BC and Yukon patients). All Canadian patients receive some form of treatment, although it can vary from province to province based on which Health Canada approved agents are publicly reimbursed.

Some solutions the NLB discussed were to:

Although these solutions help, they are not sufficient and further strategies are needed. Here is an idea: make research cheaper. This would decrease the costs that pharmaceutical companies need to recuperate. How can we accomplish this? First, use technology, like Webinars, instead of flying people all over the world for meetings. Secondly and most importantly, researchers need to work together on similar projects in order to be more cost-effective. Interestingly, when I brought this up at the meeting, many nurses laughed and said “good luck, doctor’s egos are too big to work together” to which I replied, “well we're proving that its possible with the Myeloma Canada Research Network”. Kudos to our Canadian team for making waves in myeloma research on an international scale and proving that when we work together, big things can happen.

For more information on Myeloma Canada and the Myeloma Canada Research Network, visit www.myeloma.ca.