Nova Scotia patient advocates are calling on the provincial government to reconsider funding a life-sustaining drug for those battling one of the world’s deadliest forms of cancer.
Onivyde, a second-line treatment for pancreatic cancer, was approved by Health Canada in 2017 but is currently not funded or distributed anywhere in Canada. Its clinical data boasts a 45 per cent increase in overall patient survival, and it’s currently available in the United States.
“We’re seeing more patients present with later-stage disease than what we’re used to seeing,” said Dr. Ravi Ramjeesingh, a medical oncologist in Halifax who treats between 70 and 80 per cent of Nova Scotia’s pancreatic cancer patients. It’s anecdotal, he added, as it’s too early for any data on the topic.
“Having a drug out there that’s being utilized in other countries that we don’t have access to — it’s a really hard discussion to have with patients as well, while they’re trying to stay around as long as they can.”
According to the Canadian Cancer Society, pancreatic cancer kills at least 90 per cent of patients within five years and is often diagnosed at a late stage, leaving limited time to say goodbye.
Due to a general lack of testing and cancer services during the COVID-19 pandemic, the Canadian Cancer Society and other advocacy groups anticipate a surge in late-stage cancer diagnoses in 2021 — which is particularly bad news for those with pancreatic cancer, say local advocates.
“There’s been quite a bit of modelling happening,” said Clara MacKay, CEO of the World Ovarian Cancer Coalition and chair of the Craig’s Cause Pancreatic Cancer Society. “Some predictions are that for example, for every one week in delay of an urgent cancer referral, that patient may have a significant — up to one per cent — impact on their cancer outcome.”
MacKay, who lives in Lunenberg, N.S., said it’s “incredibly important” for governments to fund Onivyde, which could provide a few extra months for the patients likely to be diagnosed at the metastatic stage of pancreatic cancer this year.
She also said pancreatic cancer has not received the same attention and services as other, more treatable forms of cancer, possibly because of the “nihilism” associated with it.
Onivyde, produced by Shire Pharma Canada ULC, was recommended by both the pan-Canadian Oncology Drug Review and the Quebec Institut national d’excellence en santé et en services sociaux, provided its cost-effectiveness could be improved. It can extend live by several months.
In 2019, however, negotiations to fund the drug ended “without agreement” at the pan-Canadian Pharmaceutical Alliance (pCPA), an alliance of federal, provincial and territorial governments that negotiates on a range of public drug plan initiatives. The negotiations are conducted behind closed doors and remain confidential.
The pCPA has previously stated that “clinical effectiveness, safety, cost effectiveness and affordability” all weigh into deliberations on whether to approve a drug for funding, and in a Friday written statement, confirmed it is not “actively engaged” in any new negotiations for Oniyvde.
Provincial governments could choose to fund Onivyde independently, but a statement from the Nova Scotia Health Department suggests Nova Scotia will follow the pCPA’s lead.
“In accordance with the pCPA guidelines, should the manufacturer be in a better position to address improved cost-effectiveness, the pCPA may reopen the negotiation upon request by the manufacturer,” wrote spokesperson Marla MacInnis.
“Nova Scotia works collectively with other jurisdictions through pCPA and remains open to considering additional proposals from the manufacturer.”
Darren Zwicker, a pancreatic cancer survivor who lives in Mahone Bay, N.S., said it’s “disappointing and shocking” that governments don’t fund Onivyde, given its low cost relative to other cancer treatments that they do pay for. If his first-line treatment had been unsuccessful, he told Global News, he definitely would have wanted access to the drug.
“I’m living proof that it’s not necessarily a death sentence. There are solutions and I think we need to spend some time trying to figure out what the solutions are,” he said.
“I was fortunate enough that I didn’t require it, but had I required and was not able to get it, that would have been a very difficult thing to go through.”
Heather Parsons of Albert Bridge, N.S., who is still being treated for pancreatic cancer, said the concept is “maddening.” She, too, would “definitely want it” if the time came, although she’s confident she’ll kick cancer to the curb.
“How can you put a dollar stamp on someone’s life?” she asked. “You can’t … this shouldn’t even be an option.”
This year, the Canadian Cancer Society projects about 6,000 Canadians will be diagnosed with pancreatic cancer, 5,300 of whom will die. In Nova Scotia, the disease currently impacts about 170 patients.