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A Palmerston North woman and her family have been paying thousands of dollars a month for her cancer treatment because her disease is so rare.

The immunotherapy drug Keytruda (pembrolizumab) has become central to her treatment. But because it is not funded by Pharmac for her type of cancer, the family faces bills of about $9000 a session.

Frances Anderson, 65, was diagnosed with Merkel cell carcinoma (MCC) in 2023, but she said it had been misdiagnosed for a few years before that because the disease was so rare.

Frances Anderson, 65, was diagnosed with Merkel cell carcinoma in 2023.

“It was presented as a lump on my thigh and ... it was just like a fatty lump, but it didn’t seem to grow really big, just sort of sat there,” she said.

“But the colour got a bit pinker and, when it was diagnosed, I had surgery, and it was sort of growing inside my thigh and it was about the size of a cricket ball by that stage.”

MCC is a rare skin cancer that often spreads to other parts of the body. In Anderson’s case, doctors later found it on her thyroid, leg, pelvis and bowel.

Despite multiple surgeries and radiation therapy, she now requires immunotherapy to survive.

Logan Hayes, Pharmac’s team leader of pharmaceutical funding, said Keytruda was funded for seven different types of cancer.

“We have received a number of other applications to fund pembrolizumab for a range of different types of cancer, including Merkel cell carcinoma.

“In October 2022, Pharmac received a funding application for the first-line use of pembrolizumab for people with advanced Merkel cell carcinoma.

“We received clinical advice from our cancer treatments advisory committee, who considered this application in October 2023 and recommended pembrolizumab be funded for people with advanced Merkel cell carcinoma, subject to eligibility criteria. This application is currently under assessment”.

Frances Anderson's family considered moving her to Australia for treatment.

Anderson’s family considered treatment in Australia, where immunotherapy for MCC is funded. But because of her age and health, travelling was not feasible.

Anderson said the cost of treatment in New Zealand was high. “I’ve had my first invoice; with the oncologist fee, it’s nearly $9000.

“So that’s for one round. In three more weeks, it’ll be the same”.

She said oncologists had quoted total treatment costs of between $86,000 and $110,000.

She and her family have set up a crowdfunding page to help with costs, where they’ve already raised nearly $10,000.

Hayes told the Herald that the application for Keytruda funding to treat MCC would be compared against other applications “for other medicines that people would like us to fund on the Options for Investment list”.

“While we are always trying to fund more medicines, it’s important to recognise that our funding systems are unique to New Zealand and not directly comparable to those in other countries.”

Anderson and her family have encouraged those in power to consider expanding this sort of coverage to rarer forms of cancer so that others in a similar situation can afford the treatment they need.