Liver cancer: Whakatāne patient diagnosed after getting hepatitis C from blood transfusion

It should have been a harmless bit of fun. Whakatāne man Rhys Drayson was hunting in the bush when he decided to swing on a vine. But it ended in disaster with a broken leg, hepatitis C and ultimately terminal cancer. Two drugs have extended his life as part of a trial but they were on the National Party’s list of 13 cancer treatments it promised to fund if elected in 2023. But this funding has been delayed and now he is calling on the Government to fulfil that promise.

Rhys Drayson’s decades-long health ordeal started when he was hunting with his brother and father in the Te Urewera National Park in 1982.

“I swang [sic] on a rātā vine and it broke, so I landed very, very heavily on my leg,” the now 63-year-old said.

He estimated falling between 3m to 4m.

Drayson was airlifted to Whakatāne Hospital and transferred to Tauranga Hospital.

Whakatāne man Rhys Drayson pictured in 1982, about three months before his accident in the same area in the Te Urewera National Park.

“The [left] leg was going gangrenous ... so it was a matter of having to amputate it to save my life.”

Six months later, Drayson got an artificial leg, which has allowed him to work fulltime, swim, cycle, and play pickleball.

But losing his leg wasn’t the only life-altering consequence of his accident.

At the hospital, Drayson needed a blood transfusion and he was “infected with contaminated blood”.

He found out he had hepatitis C in 1993 after a blood test.

Health New Zealand Te Whatu Ora said blood donors were not screened for hepatitis C before 1992. The virus was only discovered in 1989, and a reliable test was developed in subsequent years.

Unfortunately, Drayson was transfused before hepatitis C screening for blood donors became available.

In 2015, Drayson was cleared of the virus when he took the drugs Harvoni and Ribavirin.

However, he was warned he was at risk of developing hepatocellular carcinoma (HCC or liver cancer) and needed regular ultrasounds.

Drayson given six to 12 months to live

An ultrasound in March 2022 showed something was wrong. A CT scan confirmed he had liver cancer.

The father-of-two was told he needed a liver transplant.

While on the transplant waitlist, he was offered a clinical trial to help prevent the cancer from spreading which had “limited success”.

Whakatāne man Rhys Drayson pictured in 2019 at a fishing village in Cornwall.

In September 2023, the cancer was found to have spread to his lymph nodes, ruling out a transplant.

He found out about a clinical trial to receive cancer drugs Atezolizumab with Bevacizumab.

In November 2023, Drayson was assessed to see if he met the trial’s criteria.

There, a doctor told him he had six to 12 months to live.

He remembered leaving the hospital and thinking he had to tell his family.

“There I am telling my 91-year-old dad that I’ll be dying before he does.”

‘Overall complete response’ from drugs

Drayson was accepted for the trial and started treatment in December.

He has been travelling to Auckland every three weeks since. The pharmaceutical company involved pays for his accommodation, travel costs, and the drugs.

“At this stage, it’s for the rest of my life.”

After 18 weeks, an MRI scan showed he had an “overall complete response”.

Whakatāne man Rhys Drayson was diagnosed with liver cancer in 2022 after he developed hepatitis C from a blood transfusion in 1982.

The doctor told him while it was good news, he still needed to be “cautious”.

Drayson knows the drugs are giving him an extension of life, not a cure.

“I don’t ask a lot of questions because there’s a lot of ifs and buts.”

’Absolutely disgusted’ drugs weren’t funded

Drayson said the drugs would have cost more than $100,000 per year without the trial.

He had planned to use his KiwiSaver and remortgage his house if he was denied.

Drayson said it was “ironic” that if the treatment prolonged his life, “you’d probably get to a stage where you end up having to sell your house then you’d end up on the state benefit anyway”.

“That’s why I can’t understand why the Government’s not funding it to start off with.”

In 2023, the National Party campaigned on funding 13 cancer treatments available in Australia but not New Zealand, paid for by bringing back the $5 prescription fee. This included Atezolizumab with Bevacizumab for liver cancer.

In Budget 2024, the Government confirmed funding would not be available for at least another year.

Drayson had “applauded” National for promising to fund the drugs but was “absolutely disgusted” when they were not funded this year.

“You’re playing with people’s lives – you’re filling somebody with false hope and promise. Especially for those that there’s no way they can afford the drug.”

Whakatāne man Rhys Drayson pictured in 2019 on the ferry from Scotland to Dublin.

Drayson said his health was “wonderful” and he had a “great” quality of life.

“We really need these drugs funded. They are making such a huge difference to me and there are such limited options for people with HCC – why should Kiwis miss out on what patients in other countries get as standard treatment?”

‘Devastated’

Gut Cancer Foundation chief executive Liam Willis said the organisation was “devastated” for the patient community when funding was not included in this year’s Budget.

“In many cases, our patients have been waiting for years to access treatments that are readily available and standard of care all around the world. Nowhere was this injustice felt more acutely than in our liver cancer patients.”

For eligible patients, Atezolizumab with Bevacizumab could be a “game-changer”, Willis said.

“To have this hope dangled in an election promise, only to see it taken away again was truly devastating.”

Willis said the treatment had been publicly funded in Australia since 2020.

“New Zealanders with advanced liver cancer have no funded options available to extend their lives and give them more time with loved ones.”

Willis said on average, 408 New Zealanders were diagnosed and 302 died with liver cancer annually.

Drugs on Pharmac’s options for investment list

Pharmac’s director of pharmaceuticals Geraldine MacGibbon said Bevacizumab with Atezolizumab for liver cancer was a combination of medicines it would like to fund.

The agency had assessed a funding application for this and ranked it on its options for investment list, she said.

MacGibbon said Pharmac was working on a competitive procurement process to see if it could widen access to Bevacizumab for some cancers, including liver cancer.

This was a process it had to go through when there was more than one supplier of medicine, she said.

MacGibbon said Pharmac was assessing bids it had received from suppliers.

Pharmac would release public consultation before any decision was made to widen access to Bevacizumab and expected to publish this in December (subject to change), she said.

Pharmac was also talking to the supplier of Atezolizumab.

“We know cancer medicines make a big difference in people’s lives and we’re working as hard as we can to fund as many medicines as we can following our budget increase from the Government in June.”

Associate Health Minister responds

Associate Health Minister David Seymour said he acknowledged the hardship faced by people in situations such as Drayson.

He said Pharmac operated independently of the Government and “at an arm’s length” from the minister in its decision-making.

Associate Health Minister David Seymour. Photo / Ben Dickens

As minister, Seymour said he had power over funding and expectations for Pharmac.

“That’s why we have given Pharmac a record level of funding and set the expectation that they will focus relentlessly on improving access to medicine.”

Seymour said Pharmac had told suppliers it would like the medicine to be available by April 2025.

“If Pharmac can fund Bevacizumab for liver cancer, it would also fund Atezolizumab as the medicines need to be used together.”

A Health NZ spokeswoman said that since 1992, all blood donors had been tested for hepatitis C.

As a result, there had been no cases of transfusion-acquired hepatitis C “as our blood supply has been free of the virus since screening was introduced”.

Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.