Watching a loved one fall terribly ill is a family's worst nightmare. But often, severe illness does not just take a physical and mental toll - it can also create a financial strain that just makes that hell burn even hotter. Bay of Plenty Times reporter Jean Bell speaks to a family who is fighting to keep their dearly loved father alive and get funding for a cancer drug.
A Tauranga father and daughter are taking the funding fight for a cancer drug to Parliament after spending over $100,000 on his life-prolonging treatment.
Tourism Bay of Plenty chief executive Kristin Dunne and her father Stephen Dunne presented a petition to Parliament this week calling for Pharmac to fund Cetuximab, also known as erbitux, for bowel cancer patients.
Stephen Dunne has been fighting stage four bowel cancer for five years, which has now spread to his lungs and liver.
He and his wife, Therese, have drained their life savings, sold their rental property and have considered selling their home to continue paying for the drug.
Dunne, 79, moved from Auckland to Tauranga around eight years ago and was diagnosed with bowel cancer in December 2014.
He mentioned to his doctor that his bowel movements had changed. A colonoscopy revealed cancer, which was removed successfully through an operation and no follow-up treatment was required.
Eighteen months later, a check-up showed cancer had spread to his liver. Dunne was told he was terminal and nothing could be done.
He was told he would live six to nine months without treatment and 12 to 18 with treatment.
"I thought 'that's the end. You don't survive this'," Dunne said.
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But Dunne and his family fought on.
He received chemotherapy and the family searched for a surgeon overseas to remove his liver tumours.
He said he was sick all the time with chemo and did not like to leave the house.
"Someone said to me, 'it won't be cancer that kills you, it will be the chemo'."
Surgery overseas would have been too expensive but speaking to foreign surgeons gave them hope that something could be done.
They found a surgeon in Auckland. During the operation, the surgeon flipped over Dunne's liver, saw even more tumours, and decided to halt the surgery as it would do more harm than good.
The family was devastated at the time but went on to undertake directed radiotherapy to the liver.
This stopped the tumours in their tracks but the reprieve came at a $35,000 price tag in private health care.
Dunne continued with the chemo and began taking Cetuximab.
The drug had boosted their total bill to $110,000 but he has enjoyed much better results and a greater quality of life.
The drug was free after a certain amount of treatments. Dunne had passed that point, but it still cost $2000 to administer.
It was supposed to be given every fortnight but he had pushed this to every three weeks to cut costs, as he and his wife were on superannuation with a $1200 fortnightly income between them.
A keen soccer fan, he used to coach soccer for the Blue Rovers, Bethlehem College and Aquinas College teams but his ill health forced him to give it up.
"No one should have to go through what we've been through," he said.
"I go to the cancer treatment centre and see people of all ages. There are about 30 seats in the waiting room and they are always full whenever I go.
"I think to myself, 'God, there must be a lot of people with cancer in this country."
Family members have helped pay for Dunne's treatment.
His daughter, Kristin Dunne, said it was her duty to contribute.
"They [her parents] have looked after us so it's time for us to look after them."
She said it was difficult knowing that if her father lived in a different country, the drug would be funded.
"Things like the Wellness Budget are quite jarring," she said.
"You can't call it a Wellness Budget and not fund these drugs."
Kiwis were urged to get checked for cancer but Kristin Dunne said there was not the services or funding to get all diagnosed people the treatment they needed.
"You're almost better not knowing."
She said the extra birthdays, Christmases and other celebrations she and her family have enjoyed with their father that they did not expect to get have been priceless, but the financial, physical and emotional stress was overwhelming.
The family was forced to have those "heart-breaking" discussions around how to afford the life-prolonging treatment.
Kristin Dunne said her father's tumours have shrunk and decreased in number on the drug, with the only side effects being a skin rash.
Tauranga-based bowel cancer survivor Alan Sciascia said everyone's experience was different.
Sciascia was diagnosed in 2016 and got fully-funded treatment through the public healthcare system.
He said he moved quickly to see a doctor when he noticed his bowel movements had changed.
Sciascia said funding for treatment was paid for by the taxpayer's dollar, which was "sadly a finite resource".
Speaking about bowel movements could be a "taboo subject" but he urged people to get checked if they had any concerns or noticed any changes.
"The cancer is already there when the warning signs arrive," he said.
A Pharmac spokesperson said Cetuximab was being assessed for funding.
The spokesperson said it had been referred to the cancer subcommittee for assessment, which is a group of clinical experts made up of oncologists, but it was not possible to give a timeframe for when a decision would be made.
Ministry of Health population health and prevention deputy director general Deborah Woodley said this was a sad situation for the Dunne family.
Woodley said early diagnosis of bowel cancer was key to achieving good treatment outcomes.
She said the Government has invested $197 million in the National Bowel Screening Programme since it began in July 2017.
"The primary objective of bowel screening is to reduce the mortality rate from bowel cancer, by diagnosing and treating bowel cancer at an early curable stage.
"An additional objective is to identify and remove pre-cancerous advanced adenomas from the bowel before they become cancerous, which can, over time, lead to a reduction in bowel cancer."
She said Bay of Plenty District Health Board was set to provide free bowel screening by 2021.
Signs and symptoms
Signs and symptoms of colorectal cancer are many and varied, including:
- Blood in the stools and/or bleeding from the rectum
- A change in bowel habit lasting longer than six weeks (eg loose stools, diarrhoea or constipation)
- Stomach pain (often severe)
- Lumps or a mass in the abdomen
- Weight loss
- Weakness and tiredness (symptoms of anaemia).
Source: Southern Cross Medical Library
Bowel cancer in the Bay of Plenty - the numbers
The number of new diagnoses in the Bay of Plenty area:
2016 - 204
2017 - 182
2018 - 190
Source: Midland Cancer Network