Brian Hughes lost his mother to advanced breast cancer eight weeks ago. Now, he is pushing her message in the fight for better cancer treatment funding. Photo / George Novak
Brian Hughes lost his mother to advanced breast cancer eight weeks ago. Now, he is pushing her message in the fight for better cancer treatment funding. Photo / George Novak
Brian Hughes describes his mother as a dynamic, outgoing and driven woman who did not do things by halves.
But Lucille Hughes is no longer with us.
She died in March, aged 78, after a formidable battle with cancer.
Now her son is telling her story in a bid tohonour her dying wish: To see the treatment she credited with extending her life funded and made available to anyone who needs it.
Lucille was a Metavivor, a group of advanced breast cancer fighters petitioning the Government for better access to life-prolonging drugs such as Ibrance and Kadcyla.
Today, the Metavivors will present a petition for their cause to Parliament.,
It will be one of eight petitions - collectively with more than 17,000 signatures - presented by advocacy groups that want the Government to fund several life-prolonging drugs used to treat different types of cancer.
Brian said his mum wanted to see everyone with advanced breast cancer have the chance to live a longer life, as she did.
Lucille Hughes was an outgoing woman who had a clear message about life-prolonging cancer treatment - it should be made available to anyone who needs it. Photo / supplied
She paid for her own Ibrance treatment "and was happy to do so", Brian said.
"She was really strong about that. She thinks if people that can afford it can, then they should [pay themselves].
"But if someone is a solo mum or dad, or looking after a young family, or running two jobs just to make ends meet; how can they be expected to pay $7000 a go? They can't."
Lucille was first diagnosed with breast cancer 20 years ago.
"She went through all the processes: The breast removal, chemotherapy, radiotherapy. She went back for the checkups every two years and the doctor said she was in the all clear," Brian said.
About eight years ago Lucille developed a cold "she just couldn't shake".
Lucille was told the cancer had returned, as Stage 4 lung cancer. This later spread to her liver, bones and part of her brain.
"Then she said 'no, I'm going to fight this'. 'I'm going to have my 75th birthday, four years from now'," Brian said.
And she did.
The family enjoyed another few years but in October 2018, Lucille's oncologist told the family, categorically, she had just six weeks to live, Brian said. The doctor also told the family of Ibrance, if she could afford it.
We want to see New Zealand as the leader on the world stage but we are embarrassingly behind.
In New Zealand, people seeking Ibrance need to pay upwards of $6000 to $7000 a month. For Kadcyla, they're looking at $10,000 a month.
Lucille paid and reaped the rewards.
Brian, who works in the health industry, said Ibrance not only prevented his mother's cancer from growing at its usual rate, it reduced the size of the cancer in her liver by half a centimetre over a two-month period.
Christmas 2018 – the Christmas Lucille was not expected to make – arrived and the family spent it together. They also enjoyed the celebration of Brian's father's 80th birthday in January.
"It was really special."
Brian said none of it would have been possible without the Ibrance treatment, and his mother's sheer determination not to let cancer win.
"She was still going to bridge and socialising. I was stoked for her."
Lucille died on March 9.
"Mum was 78 when she died. We can handle that, 78 good years of life," Brian said.
"I would hate for that to be 38 years old, or 18 years old. That's pretty heart wrenching. That's why I'm doing this, pushing mum's message."
Tracy Barr-Smith has stage four metastatic breast cancer and fighting for better funding for life-prolonging treatment. Photo / file
Petition to Parliament
Tracy Barr-Smith, 48, does not know how much time she has left.
The Tauranga woman is living with advanced breast cancer. But she's not going anywhere without a fight.
Tracy is a Metavivor and in March, she and others presented to the Select Health Committee about why life-prolonging drugs such as Ibrance should be funded or subsidised.
The committee is still considering the presentation and Pharmac said last month it had made no decision on whether to fund Kadcyla and Ibrance, in spite of a report funding for the former had been refused.
Today , the Metavivors group will today be joined by fighters of lung cancer, ovarian cancer, myeloma and chronic Lymphocytic leukaemia in the petition presentation.
Tracy Barr-Smith would be there if she could but is receiving treatment today instead.
"We want to see New Zealand as the leader on the world stage but we are embarrassingly behind," she said.
"Not just in cancer drugs but chronic illness and that's why we are coming together with these other groups. It's not just about is. It's about all of these other organisations that need to same kind of funding."
Tracy said a friend from Dunedin moved her family to Australia just before Easter and was already expected to start a fully-funded treatment of Kadcyla this week.
In New Zealand, more than 600 Kiwi women die each year from breast cancer, the nation's third most common form of cancer.
Breast Cancer Aotearoa Coalition chairwoman Libby Burgess said New Zealand was failing to "look after our people when they most need help and this is a travesty".
Much of the ire is directed at Pharmac, New Zealand's Government agency tasked with allocating drug funding.
Chief executive Sarah Fitt said Pharmac spent $220 million on cancer medicines last year, up from $203m the previous year.
More than $100m alone was spent on five cancer medicines.
"This shows just how expensive these medicines are and why it's so important that we're confident they work," she said.
Lucille Hughes was an outgoing woman who had a clear message about life-prolonging cancer treatment - it should be made available to anyone who needs it. Photo / supplied
"At any one time Pharmac is considering multiple medicines for funding and we must consider the relative priority of these medicines when determining which medicines to fund to get the best health outcomes for New Zealanders from within our fixed budget."
The separate petitions are expected to be received by MPs at Parliament's steps today. MPs will then present the petition to Parliament where it can be sent to a select committee to consider the request in detail.
Once the committee has examined and discussed the petition, it will report back to Parliament and the committee might make recommendations to the Government.
The petitions seek funding for Ibrutinib and Venetoclax for chronic Lymphocytic leukaemia; Lenalidomide for multiple myeloma, an incurable blood cancer; for Lynparza and Avastin to be funded for ovarian cancer; six drugs for myeloma; Myozyme for late-onset Pompe disease, a rare and fatal metabolic disorder; and medications including Keytruda, Alectinib, Osimertinib and Crizotinib for advanced lung cancer.
