Sophia Glenn
Photo: Delivered
Some colon cancer patients miss out on a government-funded cancer drug because they have a specific mutation, meaning they need an additional drug that isn’t funded, and because their tumor is on the wrong side of their body.
Bowel Cancer New Zealand and cancer specialists are calling for wider use of cetuximab for patients with advanced bowel cancer with a BRAF mutation.
When Sophia Glenn found out that the colon cancer drug cetuximab would finally be funded by the government, she was relieved.
Cetuximab was one of 13 cancer drugs the National Party campaigned for before the election and promised it would be funded in June. It became available in November.
“I was pretty excited, I thought this would be a huge savings for my family.
“And then we found out we’re not getting funded because the tumor isn’t on the right side.”
Before the cancer spread, the 41-year-old’s tumor was located on the right side of her intestine. She had to undergo a right-sided hemicolectomy to remove the tumor.
Pharmac only funds cetuximab if it is on the left side of the intestine, because the drug does not work on tumors on the right side of the intestine.
Glenn’s cancer is now terminal, but her specific cancer is treatable.
That’s because she has a specific mutation called B-RAFS v600E, which can be treated with cetuximab in combination with another drug, encorafenib.
But while cetuximab itself is government funded, the combination is not, so she must raise $80,000 for a course of treatment to extend her life.
“We do a ton of fundraising and do a Givealittle. Everyone in my family tries to do as much as they can. We don’t just have $80,000 lying around. We’re a young family, middle class.”
Sophia Glenn reads to her son in the hospital.
Photo: Delivered
Medical oncologist and professor of cancer medicine at the University of Otago, Chris Jackson, is among the cancer specialists who have written to Pharmac requesting funding for cetuximab when used in combination with encorafenib.
He said studies have shown the combination to be clinically effective for patients with the specific BRAF mutation.
“Do I think the combination works? – absolutely – I don’t think there’s any doubt about that, would I want it to be funded? – well absolutely – is this the best way to use Pharmac’s funding? Well, that is really up to them to decide.”
Cetuximab by itself is not effective in people who only have a right-sided tumor, but if they have the BRAF mutation and their tumor also happens to be on the right side of the body, the combination of cetuximab and encorafenib will be effective in them as well.
Jackson said cancer specialists aren’t entirely sure why cetuximab doesn’t work in patients who need to treat the right-sided tumor on its own, even though it involves how a person’s body develops as an embryo.
Chemotherapy is used alone to treat right-sided colon cancer.
However, Jackson said the combination of cetuximab and encorafenib has been available to treat BRAF mutations for several years, but the manufacturers of encorafenib have not submitted a funding application to Pharmac.
“I have had a number of people who have the BRAF mutation and want to access cetuximab in combination with encorafenib, but they feel left out and I understand that.
“From Pharmac’s point of view, I think just because a drug works in one situation doesn’t mean it will work just as well in another situation. And Pharmac solicits applications from pharmaceutical companies for each specific clinical situation, and the people with a BRAF mutation are in a different clinical situation than those without, and the data is different and the effectiveness is different.”
According to Pharmac, it is estimated that approximately 10 percent of patients with advanced colon cancer have a BRAF mutation.
Jackson said applications for some newer treatments are lagging because Pharmac’s budget was too small for too long.
“The situation in New Zealand with pharmaceutical companies is that Pharmac has been on a shoestring for a long time, and they haven’t funded many cancer drugs, and there’s a big gap between what’s funded in Australia and New Zealand.
“And many companies have responded to that environment by simply not showing up and not submitting applications.”
He said that now, with record investment in Pharmac, there is a greater chance that an application to finance the drug could be successful.
Bowel Cancer New Zealand CEO Peter Huskinson said hundreds of patients like Sophia Glenn are crying out for treatment.
“New Zealand is doing really, really poorly when it comes to the high rate of people with advanced disease and the poor outcomes in advanced disease in bowel cancer; one of the worst in the world.”
He said the patients were relieved. Cetuximab was made available for use on its own last month, but the combination therapy was needed and could benefit more than 100 people in the first year of funding.
He said when the science shows a treatment works and is available overseas, it should be available to New Zealanders.
About Sophia Glenn, she said she just doesn’t understand why the drug is publicly funded for some but not for others.
“It makes the last eight months difficult, it was supposed to be my last happiness, and now it has turned into a financial struggle.”
In a statement, a Pharmac spokesperson said the agency would welcome a funding application for the combination of cetuximab and encorafenib.
“We are aware that new studies have been published for cetuximab, used in combination with another medicine called encorafenib (a BRAF inhibitor) for people with BRAF mutations.
“We are aware that this combination is being funded overseas for BRAF mutated cancer. We have not received a funding application for cetuximab in combination with encorafenib and understand that encorafenib has not been approved by Medsafe.
“We would welcome a funding application for cetuximab in combination with encorafenib, in addition to a submission for Medsafe approval.
“This means we can review these drugs and prioritize other financing options. We have also shared this feedback with the supplier of encorafenib.”
Leave a Reply