Triple negative breast cancer is an aggressive form of the disease that does not respond to hormone-blocking treatments. The immunotherapy drug Keytruda, administered alongside chemotherapy, is recommended to treat both early and late stages of the disease.
Catherine Cooke, 53, is paying $85,000 for unfunded treatment for grade 3 triple negative breast cancer. Photo / Catherine Cooke
Cooke isn’t eligible for funding and is paying for her own treatment, with the help of a Givealittle page.
Her petition to fund Keytruda for early TNBC, published in February this year, has been signed by 17,096 people. Cooke will today present her petition to list MP Nancy Lu, who will receive it on behalf of her local MP Mark Mitchell and take it to Parliament.
Cooke hopes it will bring about change for other Kiwi women who have been or will be diagnosed and face the same impossible choice between going into debt and a chance at survival.
“It’s been very sobering. You’ve got people, mostly out of Auckland, that have been told they don’t qualify for Keytruda, even though it’s the only line of defence,” she tells the Herald.
“They’re telling me they’re not even being offered it to self-fund - they’re just being told they don’t qualify.
“It’s been humbling and also heartbreaking. We are Kiwis that are just trying to live, and yet we’re denied a fighting chance. People don’t want the burden of debt, and not everyone’s going to be lucky to be able to fund it.”
Catherine Cooke is petitioning the Government to fund Keytruda for early triple negative breast cancer. Photo / Catherine Cooke
Cooke is paying for 17 infusions of Keytruda at $8000 each. The cost means some choose to undergo chemotherapy alone, waiting until their cancer reaches the advanced stage - though as she points out, “When you’re advanced, there are absolutely no guarantees.”
Cooke’s treatment has almost completely eliminated her cancer, with a lumpectomy planned for next week to remove what’s left. Her results show what the outcome could be for other TNBC patients, she says.
“If you funded [this treatment] for early triple negative breast cancer, you would have fewer people getting to the advanced stages. You would have less burden on the health system, you would have less burden on the welfare system. You’d have even less burden on the mental health system; I’m seeing mental health issues for lots of people, including myself.”
Cooke is “endlessly grateful” to those who have donated to her Givealittle page, particularly to one anonymous donor who gifted her $50,000 after reading about her in the Herald.
“The gift has enabled me to continue accessing Keytruda, a treatment that is saving my life.”
Catherine Cooke says she will keep advocating for others like her diagnosed with TNBC. Photo / SuperGibo Photography
While the overwhelming feeling is one of gratitude, it’s also bittersweet. “It made me feel extremely guilty, because there’s people out there that still can’t get past $5000.
“I’ve cried so many tears, I could just about fill a lake or a river, up and down the country. There are so many people affected, and it doesn’t just affect the patient, it affects the community.”
Cooke says that handing the petition over is not the end of her campaign.
“The fight continues for me. I’ll continue to advocate until changes are actioned.
“It’s for all the others who don’t yet know that they’ll need this fight. It’s for those who shouldn’t have to choose between treatment and financial ruin.
“Don’t make us wait until we die before we’re eligible. Who wants a death sentence hanging over them, knowing that help exists but it’s out of reach?”
Breast Cancer Foundation New Zealand chief executive Ah-Leen Rayner.
What is triple negative breast cancer?
According to the Breast Cancer Foundation NZ, 350 women are diagnosed with TNBC each year, accounting for 10% of all breast cancer diagnoses. It’s the deadliest form of breast cancer - one in three of those women will see their cancer become incurable within five years.
Keytruda is the only targeted treatment for this type of cancer, and is fully funded in 40 other countries, including Australia, Canada and the UK.
Breast Cancer Foundation CEO Ah-Leen Rayner says, “Patients with early triple negative breast cancer that receive Keytruda are 34% less likely to die and 32% less likely to have the cancer spread beyond the breasts.
“That means 5 years afterwards, 87% of Keytruda recipients are still alive.
“It makes no sense that we’re not making Keytruda available to patients when they’re in the early stage of disease. When the cancer has spread beyond the breast, the cost of treatment goes up, it’s more aggressive, the impacts on the health system are far greater,” Rayner says.
“The Government needs to increase spending on Pharmac’s budgets... what we also then need to see is Pharmac making sure that the timelines and processes are timely, so that patients can get access to new medicines as soon as humanly possible.
“It’s been more than 2.5 years since Pharmac was asked to fund Keytruda for early triple negative breast cancer, and given how aggressive it is, we can’t afford to keep waiting for a funding decision.”
Rayner says Cooke’s advocacy while undergoing cancer treatment has been “phenomenal”.
“We’re incredibly grateful for her dedication to act on behalf of all women who take this drug. It’s an incredible achievement, on top of probably the most stressful time of her entire life.”
