The teenage daughter of a "community-spirited" Waikato school bus driver says her family is desperate to access a non-funded cancer drug that could double her father's life expectancy.
James Cameron was diagnosed with advanced non-small cell lung cancer on June 15 and told by doctors the next day the disease is terminal, before receiving a prognosis of just six months to live.
As his family scrambled to understand the most effective treatment measures available, the 56-year-old's loved ones were gutted to learn a move to fund immunotherapy drug Keytruda - known to have more effective results than chemotherapy - had been postponed by Pharmac.
Lung cancer is New Zealand's most common cancer killer, and immune therapies are an effective part of treatment for many patients with the disease.
Kiwi cancer patients are able to access Keytruda privately but the drug alone costs $7000 per infusion, with a treatment plan commonly recommended to be administered over three months once every three weeks. Additional costs include the infusion itself, consultations and progress screenings.
Tessa says the family is scraping together money for the first round, and her dad won't rule out remortgaging the family home to afford doses. A crowdfunding page has also been set up in the hope of collecting donations.
"The plan going forward is to hope that the treatment works, and try to make the rest of his life the best life and do whatever he wants to do," the 17-year-old said.
She says her dad - who has raised Tessa and her sister, 20-year-old Chenara - on his own for the last nine-and-a-half years is dedicated to helping those around him.
"He's really community-spirited, he's touched so many lives, and means so much to not only our family but the whole area that we live in," Tessa said.
"It's not just us going through this, it's not just our family that will be affected by his passing, he's made such a significant impact on so many people."
Cameron owns a lawnmowing business and drives the school bus in Turangi, taking students on local daily runs and out-of-town trips. He is also a mentor for the Blue Light charity that works with the police to deliver programmes and activities to youth.
The father-of-three initially sought medical advice earlier this month after experiencing a dry cough, feeling cold and suffering strong chest pains before completely losing his breath. He called Healthline, which encouraged him to have a test for COVID-19 at his nearest hospital in Taupo, where doctors later told him his lung had collapsed.
After being transferred to Rotorua Hospital, medical staff found Cameron had advanced non-small cell lung cancer.
An oncologist then told the family about Keytruda's potential to improve and extend the quality of life he has left.
Tessa says they were disappointed to realise the anti-cancer drug is funded in 54 countries, but not New Zealand.
'We need to be responsible'
It was revealed in April that Pharmac decided to halt intentions to publicly fund Keytruda, unable to afford the investment due to budget constraints.
Plans were outlined in September last year to issue a Request For Proposals (RFP) for immune checkpoint inhibitors for lung cancer - including Keytruda - but that was withdrawn by Pharmac.
"We are disappointed that we aren't able to progress the RFP in the timeframes we had originally planned; however, we need to be responsible with the fixed budget that we manage," Pharmac director of operations Lisa Williams told Newshub.
According to Williams, COVID-19 has slowed or halted activities in manufacturing plants and impacted the importation of medicines and devices globally. As a result, she says, product prices are increasing, and there is increasing disruption to supply.
Williams said Pharmac will reconsider issuing the RFP as soon as it is able to.
"The majority of our medicines and medical devices are imported from countries that have been severely hit by COVID-19 and we are currently working through the fiscal impacts of those disruptions."
She said Pharmac will be seeking further advice from its cancer treatments subcommittee at its next meeting in July regarding the current landscape for immunotherapy treatments.
'A terrible blow'
Lung Foundation chief executive Philip Hope told Newshub about 30 patients a week are dying prematurely in New Zealand due to the lack of funding for immunotherapy as part of their treatment program.
He said the decision to halt funding was a "terrible blow" for lung cancer in New Zealand and those families that are dealing with a diagnosis.
"I know one of the key performance indicators for Pharmac, that's one of the guiding principles of the coalition government, is equitable outcomes, and what we're seeing is equities becoming a very trendy word but we're not seeing it demonstrated in this particular instance."
He says there are growing concerns as to whether Pharmac has done rigorous scientific analysis about the impact on rationing access to treatment.
"What we're seeing here is systemic underfunding of medicine in New Zealand and rationing of a standard of care treatment for patients that need better.
"The future of cancer care is here, but it's not readily available in the public health system in New Zealand and that's where we're failing middle New Zealand."
Thames man Steve Wilson credits the drug for saving his life after cancer was found again in his bowel and spleen in 2017.
The sixty-three-year-old battled cancer for more than a decade, with tumours found in his colon, kidney, and stomach, before paying $100,000 out of his own pocket to receive Keytruda treatment.
He wants it made accessible through funding from Pharmac for a number of other cancers including the one he had.
Hope says it's the whānau who are the biggest losers and New Zealand is falling behind the OECD.
"We need to do better. New Zealand has demonstrated to the rest of the world that we've performed well with minimising the impact of COVID-19, yes there have been some rationing in the health system, but we've contained that pandemic, what we're not doing is providing chronically unwell fragile people access to treatments."
He says New Zealand currently has 105 medicines sitting on a waiting list that would treat over 200,000 patients who are very unwell, including 1800 people suffering from lung cancer, dying prematurely because they don't have access to essential care.
Pharmac approved Keytruda for melanoma patients in 2016, but it remains yet to be funded for other types of cancers.
New Zealand has a one-year survival of 39.9 percent and five-year survival of 15.5 percent, according to statistics supplied to Newshub by the Cancer Society.
Lung cancer survival and survival improvements gained in one-year and five-year survivals between 1995-1999 and 2010-2014 were significantly lower in New Zealand compared to other high-income countries, including Australia.
Cancer Society of New Zealand CEO Lucy Elwood says Pharmac has been reviewing funding for immune therapies for lung cancer for more than four years - a process that has been "far too slow".
"It has left patients uncertain about whether or not they could wait for Pharmac funding or if they would miss out," she told Newshub.
Elwood says Pharmac's processes are delaying decision-making on immune therapies that should have been made some time ago.
While sympathetic the impact of COVID-19 has a flow-on effect on drug costs, Elwood says the Cancer Society is concerned for patients affected by lung cancer who would have benefitted from a funded treatment.
"We also expect that this means that very few if any, new cancer therapies will be funded this year. This again is deeply disappointing."
In the wake of Health Minister's announcement to give Pharmac a $160 million boost over the next four years ahead of this year's Budget announcement, Michael Woodhouse slammed the $10 million allocation toward 2020-21 as a "pathetic shadow" of what is needed just to maintain medicine supplies.
"The $10 million increase to Pharmac in 2020-21 is less than 1 percent of its baseline and falls well short of inflation. It pales in comparison to the previous National Government's annual increases, which averaged to $24 million a year," he said.
"At a time of real need it beggars belief that the Government is skimping on funding. There is going to be increased pressure for medicines as a result of the COVID-19 crisis and we need to be prepared."
Malcolm Mulholland from Patient Voice Aotearoa told Newshub COVID-19 highlighted the systemic underfunding of Pharmac for a number of years. He wants to know who within the Government is going to take responsibility for "denying patients life saving and prolonging drugs".
"Australia funds over 60 more cancer medicines than NZ. Keytruda, for multiple applications of cancers, is one of them."
He says he has been contacted by patients and their families who have been dealing with mental health issues, including suicidal thoughts because they can't access drugs they need to keep them alive.
The Ministry of Health declined to comment.