ruth bader ginsburg: a reminder we need treatment
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file photo: justice ruth bader ginsburg attends the lunch session of the women's conference in long beach, california october 26, 2010. reuters/mario anzuoni/file photo org xmit: fw1
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we have lost one of the world’s greatest supporters of gender equality.
ruth bader ginsburg was a supreme court justice, a feminist icon and had five bouts with cancer. in 1999, she was diagnosed with colon cancer, pancreatic cancer in 2009, and lung cancer nine years later. in 2019, the pancreatic cancer came back, along with liver lesions. doctors say she died yesterday of metastatic cancer of the pancreas.
ginsburg is just one in a long line of famous people to battle the aggressive cancer. canadian gameshow host and actor alex trebek recently announced that he was receiving treatment for pancreatic cancer last december. in march of this year, he reported he had beat the deadly cancer with the help of experimental immunotherapy. and in early september, he told ap news that he expects to mark his two-year survival next february.
trebek’s story provides hope for many pancreatic cancer patients, but such a lengthy survival following diagnosis is not common. “queen of soul” aretha franklin was diagnosed in november of 2017 and died in december, 2018. dirty dancing star patrick swayze died just over a year after his pancreatic cancer diagnosis. michael landon, who played the loving patriarch charles ingalls of little house on the prairie passed away just three months after his diagnosis was confirmed and oakland raider hall-of-famer gene upshaw died just three days after his cancer was discovered.
typically not diagnosed until late stages, pancreatic cancer is a particularly aggressive cancer that kills approximately 92 per cent of patients within five years. of the 225,800 new cancer diagnosis expected in canada in 2020, 6,000 canadians are expected to be diagnosed with pancreatic cancer, and 5,300 are expected to die. these projections make pancreatic cancer the third leading cause of cancer death in canada.
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treatment, and hope
in a fight to help people beat these odds, pancreatic cancer canada is in the midst of battling the pan-canadian pharmaceutical alliance (pcpa) to approve funding of a treatment green-lit by health canada three years ago — a process they say in dire need of transparency.
onivyde (irinotecan liposome), acquired by servier canada, is a chemotherapy medication that has shown promise. a phase three clinical study looking at the effects of the drug in 417 patients across 14 different countries found that this medication typically extends the life of patients with pancreatic cancer by two months –— a critical development for patients whose survival rate is measured in months, not years.
onivyde was granted regulatory approval by health canada in august 2017, but negotiations between servier canada and the pcpa to publicly fund the treatment ended in 2019 without resolution.
“we clearly have a drug that has benefit in pancreatic cancer patients…they have limited treatment options. it doesn’t make a lot of sense to me as to why it’s not funded,,” says rebecca prince, a medical oncologist who works with patients with pancreatic cancer. “it’s not like they have a choice and can go and take something else if this isn’t approved.”
the canadian cancer statistics advisory committee write there have been limited improvements in the survival rate for pancreatic cancer since 1984, in stark contrast to the improvements seen in other conditions such as breast and lung cancer.
the pcpa declined to comment on why the negotiations were closed or where the two organizations were unable to come to an agreement, citing confidentiality requirements inherent to the negotiation process.
“when considering drug pricing negotiations, the pan-canadian pharmaceutical alliance (pcpa) has a responsibility to consider clinical effectiveness, safety, cost effectiveness and affordability. an important factor that is considered is will it provide a better health outcome than existing medications, and does its cost reflect that benefit,” a spokesperson for the pcpa wrote in a statement.
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pancreatic cancer “no better than a death sentence”
joanne furino convinced her husband salvatore to see a doctor for his digestive concerns in november of 2015. they were going on a vacation soon and, thinking it was gallstones, joanne wanted to play it safe before she and sal left. at the hospital the physicians were concerned about the results of some of their tests and sent sal in for an mri. the results came back: pancreatic cancer.
“imagine a ton of bricks, falling on your head,” joanne says about learning of her husband’s diagnosis. “i was always thinking when i heard of somebody being diagnosed with [pancreatic cancer] that it’s no better than a death sentence. and it happened to us.”
cancer affecting the pancreas typically causes only mild signs and symptoms – so mild that they are often mistaken for something else or brushed off. by the time the symptoms become severe enough to signal that something is seriously wrong, the cancer has often already reached advanced stages, according to cancer.org.
“it is quite often that people will go to the doctor a number of times complaining of really easy symptoms – some mild back pain, mild nausea, itchiness to the skin – and won’t get diagnosed with anything,” says michelle capobianco, ceo of pancreatic cancer canada. “they eventually can’t stand the pain and they go into emergency. that’s when they finally do an mri and find out it’s cancer.”
vacation cancelled, sal was sent for a whipple procedure – a surgery in which parts of the pancreas, small intestine, gall bladder and bile duct are removed to try to eliminate the presence of the cancer in the body, according to mayo clinic. soon after the surgery, sal began chemotherapy. the procedures didn’t work, however, and in the fall of 2016 doctors found presence of the cancer in sal’s liver.
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with few other options available in canada, sal and joanne travelled to germany to meet with a doctor who said he could help (this procedure did not use onivyde). the promise of just a few months more was enough to drive sal and joanne to a procedure in a foreign country, even braving a stressful flight home soon after the procedure.
“the focus of his recovery was he so desperately wanted to be able to [take a trip] with our family,” says joanne. “we were able to do it, and we have wonderful memories of that because around that holiday, christmas and new year’s, he was feeling…a lot better than he had been.”
sal passed away in june 2017, twenty months after being diagnosed. joanne says she is thankful for the extra time they were able to have together with their family.
in his memory, joanne, her children, and family friends host an annual golf tournament to raise money for pancreatic cancer.
a backlog of drug negotiations leaves patients in the lurch
canada is unique in the oecd as it has a universal medicare program, but not a universal pharmacare program. as a result, multiple different public (provincial, territorial, federal) and private programs cover various segments of the population.
the pcpa was established to “get greater value for publicly funded drug programs and patients” by acting as a single bargaining unit for the various public drug programs. citizens are not privy to the negotiations between pharmaceutical companies and pcpa – timelines, negotiation processes and reasons negotiations are stalled or ended are kept secret.
“why can’ we get an idea of how far apart people are?” asks capobianco. “there’s no reason they can’t say to me ‘we’re $300 apart’.”
a previous study published in frontiers in pharmacology on the implications of the pcpa further recommends that “challenges need to be addressed to improve efficiency, transparency, and ultimately reduce pcpa timelines.”
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“you end up with a drug company saying government won’t be reasonable. you end up with the government saying those pharma companies care about big money,” continues capobianco. “patients are the ones in between and we have no voice. we’re not even allowed to know how much money we’re talking about.”
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