Cancer drug fight continues
It’s heartbreaking, frustrating, and it blows her mind.
Palmerston North cancer patient Lydia Pei is relying on crowdfunding for the $6000-a-month medicine that is offering hope of buying more time with her family.
The monthly bill for the unfunded drug Qinlock is making the possibility of moving away from friends and supporters to Australia seem attractive.
For there, the drug is available for $42 amonth.
‘‘It’s definitely somethingwe have to look at.’’
Pei is a 40-year-old mother, who was diagnosed with gastrointestinal stromal tumours eight years ago.
By late 2020, she was running out of treatment options, until her friends and colleagues at the Cancer Society, where she still works as a volunteer driver coordinator, launched a Givealittle campaign.
That bought her Stivarga, a drug funded in many countries but not by Pharmac in New Zealand, which cost $4703 amonth.
She began taking it, but although it temporarily stopped her tumours growing, ‘‘it nearly killedme’’.
Her past year had been about living every day as it came.
She married her partner, Victor Pereira, and did all she could with three sons Mason, Israel and NoahNesta.
‘‘It was about quality of life, and how best to spend that time. We ticked off a lot of things.’’
But without effective medicine, the cancer spread to her liver, and to her spine, and in April she had another round of radiation therapy, which seemed to have helped, pending final results.
And she started taking Qinlock. The drug comes in tablet form. She takes three pills each night, based on the theory that if she is asleep, she does not feel so sick.
Another Givealittle campaign has been launched to help with the $6000-a-month bills.
Pei said she was frustrated and became quite emotionalwhen she thought about how much easier life would be in Australia.
‘‘It blows my mind. It’s really quite disheartening.’’
She is campaigning and advocating for change in New Zealand.
Alongwith Patient Voice Aotearoa chairman Malcolm Mulholland and about 30 others, she will be at Parliament tomorrow to hear Finance Minister Grant Robertson deliver the Budget.
But she does so with no optimism there will be anything there to help her.
‘‘It’s not about me personally, but to advocate for others in similar situations, now and in the future.’’
Mulholland described Pei’s experience as ‘‘a sad example of everything that is wrongwith the way medicines are funded in New Zealand’’.
Mulholland’s own wife, Wiki, died of advanced breast cancer in November last year after the pair campaigned to have the cancer drug Ibrance paid for.
‘‘Lydia’s case also illustrates the medicine crisis facingNew Zealand,’’ he said.
He said even though other countries paid for Qinlock and Pei’s own oncologist recommended it, Pharmac still wanted more clinical evidence before it would approve it for funding.
So even if the Government found enough money to pay for every medicine on its options-forinvestment list, Qinlock would still miss out.
Mulholland and Pei said it was doubly disappointing that in a recent report the Cancer Control
Agency identified only
20 anti-cancer medicines that should be funded in New
Zealand. Qinlock missed out on that list, which had been created using a European scale of benefits, identifying the ‘‘must haves’’ but missing many others like Qinlock thatwere worthy.
‘‘... a sad example of everything that is wrong with the way medicines are funded in New Zealand’’.
Malcolm Mulholland
Patient Voice Aotearoa chairman