SHAMROCK, P.E.I. — Most people would likely be challenged to put a specific dollar figure on the value of their life.
Lucy Morkunas, though, knows exactly how much needs to be spent for her to keep living.
The 59-year-old Shamrock woman has a rare form of cancer called collecting duct carcinoma, which is an aggressive form of renal carcinoma that presents at an advanced stage and has a poor prognosis.
Chemotherapy was prescribed. Morkunas stopped after half a round of treatment. It simply was not working.
Fortunately, she was well enough to try another treatment, this time immunotherapy in the form of a drug called nivolumab.
She has taken the drug intravenously four times. It appears to be working well.
“It makes me stronger and not so tired," she says.
And, most importantly, nivolumab could keep Morkunas alive.
The problem with this treatment is the personal cost. Morkunas has been paying for the drug out of her own pocket.
And the drug is pricey: $7,000 for a single dose.
Morkunas has received one full dose and three half doses. That adds up to $17,500.
Her health insurance will not cover the cost. The province has also left Morkunas to fend for herself.
The latter is a strong bone of contention.
Nivolumab is on the provincial formulary, which means the province will fund the drug for Islanders. But only Islanders that meet the criteria.
Her request for the province to pick up the tab, she was told in a vaguely-worded letter from Health P.E.I., “is not in alignment with the criteria and therefore is not eligible for funding at this time."
Morkunas wants a clearer explanation. And, more than that, Morkunas wants the province to step up and fund the drug that makes her better and could extend — and possibly even save — her life.
The Guardian has also been waiting for more than a week for Health P.E.I. to comment on this woman’s health crisis.
Green Party MLA Trish Altass is fighting for Morkunas.
She is urging Health P.E.I. to reconsider their decision not to fund Morkunas.
She points out in a letter sent to Health P.E.I., as well as to Health Minister James Aylward, that Morkunas should qualify for free access to nivolumab through the provincial formulary.
Altass says her “interpretation" of the criteria outlined by the Canadian Agency for Drugs and Technologies in Health pan-Canadian Oncology Drug Review clearly states treatment using nivolumab on patients like Morkunas pose greater benefit than risk.
Morkunas is adamant that she wants the government to pay for her treatment, rather than continuing to drain her depleting resources. She is also dead set against asking for hand-outs from the public.
“Fundraising will not do the trick here and the stress around the uncertainty that fundraising entails is not going to help me heal," she says.
“Also, it seems silly to be fundraising for a drug the government already dispenses, if not grudgingly."
The retired school teacher, who enjoys gardening and singing in a choir, says her situation as she sees it at the moment is quite cut and dried unless the government comes to her aid.
“If I decide not to pay for it (nivolumab), I’m going to die – it's that simple," she says. “Right now, my future is just day to day."
