Surrounded by a supportive family, Toronto resident Gertrude Spatafora counts her blessings everyday.
“My family and just faith in God. I wake up for a new day, a new breath, and then try to make that day a positive day for somebody else in some way. And that’s what keeps me going,” she said.
Though it’s not easy.
Spatafora has been diagnosed with both Crohn’s disease and more recently ovarian cancer. The double diagnosis creates a treatment hurdle when it comes to the chemotherapy medications she needs to stay alive.
Treatments currently covered under her OHIP plan are platinum based, which can be highly toxic to the gut lining of people, like her, with Crohn’s disease.
“If I were to take those treatments it could hospitalize me for months and would require me to effectively stop chemo while I’m being monitored, which really is not an option,” Spatafora said.
Her doctors told her there is a drug that could work, called Elahere (mirvetuximab soravtansine), designed specifically for women with ovarian cancer who are unable to receive platinum-based chemotherapy.
“I need this particular treatment because it is a targeted medication and there have been case studies to prove that,” she said.
The problem is Elahere is not covered by any public drug plan in Canada. This is despite it being approved by both the Food and Drug Administration (FDA) in the U.S. and Health Canada for use. Canada’s Drug Agency (CDA-AMC) also recommends it be reimbursed by public drug plans for the treatment of adults like Spatafora.
“But it’s still not covered,” she said. “So now to get that targeted drug, you have to pay for it yourself and it’s up in the tens of thousands of dollars for one treatment.”
Spatafora has been told she may need at least three treatments a year.
“I have no choice but to find the money to pay for this, there are no other options,” she said — which is why Spatafora is speaking out about the hold-up in funding this treatment.
“Not just for me but there are so many women this medication can help.”
Speakers Corner discovered negotiations to fund the drug broke down last month.
Those talks were between the drugmaker AbbVie Canada, and the pan-Canadian Pharmaceutical Alliance or pCPA, an organization which negotiates prices for drug plans.
In a statement, a spokesperson for AbbVie said the pCPA left those talks, calling the move disappointing.
“Especially considering the important need for innovative treatment options for women living with platinum resistant ovarian cancer who are vulnerable and dependent on the public health-care system,” the spokesperson said.
When asked why exactly those talks abruptly ended, the pCPA would not say.
“We recognize this is not the outcome many were hoping for. We also wished for a different result. Negotiations are a two-way street, and both parties share responsibility for the outcome,” a spokesperson said, who went on to say they’re willing to re-open negotiations.
“We are ready to engage again if AbbVie decides to submit an unsolicited offer, and we are committed to work with our counterparts to keep looking for an agreement if AbbVie presents an offer.
As the back and forth between those two parties continue, patients like Spatafora are left with finding ways to afford the very drug, keeping them alive.
“I am urging Abbvie and the pCPA to go back to the table and restart these talks,” she said. “People should be able to access the type of medication that they need especially when it’s been researched and it’s proven to be good.”
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