What to do when the funding for your friend’s cancer treatment is “not in alignment with the criteria”

I first met Lucy Morkunas in the most in-passing way that one can: in the chaos of the summertime Charlottetown Farmers’ Market she stopped me, introduced herself, and told me I had to meet her friend Kent, who was in town from Ontario; she thought we’d get on (we did meet, several times, and did, indeed, have overlapping sensibilities).

Earlier this year I heard from a mutual friend that Lucy had been diagnosed with collecting duct carcinoma, a rare form of kidney cancer. Knowing that we’d already met, and that I’d some recent familiarity with life, cancer, dying, and death, our mutual friend suggested I might reach out. I did, and the result was a visit to Lucy’s home this summer bearing sandwiches from town.

If you read The Guardian, you might recognize Lucy’s name from the article P.E.I. woman forced to pay for cancer drug already on provincial formulary that ran in the paper on Monday: since that summertime sandwich Lucy and I shared, she’d started and stopped chemotherapy (because it wasn’t working), and has started taking Nivolumab, an immunotherapy that, in her case, has shown great promise.

The problem Lucy’s running into–and the reason for the article in The Guardian–is that the treatment’s costs aren’t being covered by provincial medicare, leaving her to pay the $7,000 per dose cost out of her own pocket. Lucy’s request to Health PEI to cover the cost was met with the response that it “is not in alignment with the criteria and therefore is not eligible for funding at this time.”

I had lunch with Lucy again today.

It was clear that as much as she is, understandably, concerned about getting her treatment funded, she is concerned about the opacity of Health PEI’s response: she wants to know what the criteria are, and why her situation is not in alignment with them.

She wants this for herself, but also, equally wants it for the rest of us who may one day walk down this road. Living with cancer is hard enough without having to run a part-time advocacy and logistics operation on the side, and Lucy is simply advocating for a process that is clear and transparent.

Catherine was fortunate that the treatments for her metastatic breast cancer were all covered 100% by medicare; we were never faced with having to lobby health officials for medication that could keep her alive.

Cancer care is a labyrinth, and Lucy is the first to admit that there are dead ends, points at which treatment must come to an end. What she simply wants to know–and what I think we, in whose name her treatment might be funded, should want to know–is what the rules are and how the decisions are made. We owe Lucy that. We owe ourselves that.