She says her best chance of being around for Augustina is having three-monthly private CT scans. While her cancer is incurable, it’s currently undetectable and she relies on the scans to monitor any changes that would mean resuming immunotherapy medication.
But a November 2025 change to her Nib insurance policy, which she’s held for 25 years, introduced a mandatory co-pay of 20% towards the cost of some specialist consultations and diagnostic testing, meaning Sophia may no longer be able to afford the scans.
Sophia Perera and her daughter at Valentina’s Grave. Photo / NZ Woman’s Weekly
Each scan costs $2400 through the private system, and Sophia and her husband Cam Warren are now responsible for $480 of that. They also pay $543 a month in insurance premiums.
For the most recent visit in June, Sophia used the free public system to avoid the hefty co-payment, but it also meant waiting an extra six weeks for an appointment.
“When I was first diagnosed and had surgery to remove the tumour, it grew back within a month, so the fear always in the back of my mind is that it doesn’t take long to return,” explains Sophia. “Six weeks could make all the difference in being able to proactively treat something.”
Sophia and Auggie at the Auckland Hospital in 2021. Photo / NZ Woman’s Weekly
Since Sophia first took out health insurance, she’s never considered cancelling the policy.
“Even in the times I thought, ‘We can’t really afford this’, I kept up with it because my belief was you paid for insurance so that if you do need it, it’s there.”
Sophia was first admitted to hospital with acute abdominal pain and suspected appendicitis in August 2020. Within days, she was sitting in front of a private oncologist planning for cancer treatment.
In December 2020, Sophia underwent surgery to remove the tumour. By February 2021, the cancer was back and she was given an official diagnosis of follicular dendritic cell sarcoma – a rare cancer that forms in the soft tissue.
Subsequent chemotherapy failed to stop the cancer and at one point, Sophia was told she likely only had 12 weeks to live.
Immunotherapy drug Nivolumab has proved, for now, to be a lifeline. Initially, it cost $8000 a month, but from August 2021 until March this year, Sophia was part of a funded trial. She’s currently taking a break while her cancer is undetectable but will resume treatment if this changes.
Cam, Sophia and Augustina at the Westlake Girls Theatre in 2025. Photo / NZ Woman’s Weekly
Asked what keeps her going, Sophia doesn’t hesitate. “My daughters. I always feel like my angel in Heaven, Valentina, is looking over us and Augustina here on Earth is keeping me going. They’re my reasons for being,” she says.
Most afternoons are spent at the local dance studio watching Augustina practise and weekends are often for dance competitions.
It can be exhausting for Sophia, who also works part-time for the charity Family For Every Child, but she’ll never take for granted the privilege of watching her girl grow up.
“The first significant milestone was actually seeing her start school,” reflects Sophia. Augustina was just 4 when her mum was diagnosed.
Sophia is speaking to Woman’s Weekly about how the insurance changes are deeply affecting her life in the hope of creating change for herself and other patients in the same situation. She admits some days are incredibly hard.
“But I try to find a little glimmer in each day.”
You can learn more about Sophia’s insurance battle on the new series of Paddy Gower Has Issues, airing on Three and streaming on ThreeNow.
Nib told the show that insurers can change their policies to reflect “rising costs and advances in medicine”. It pointed out that co-payments were introduced with a three-month grace period for those like Sophia with serious health issues, meaning she was covered for one more CT scan.
Nib said it was unwilling to make an exception by covering the full cost of Sophia’s scans because that would be “unfair” to other clients. It noted it had paid out around $400,000 in claims to Sophia and promised to keep supporting her.
To support Sophia, visit givealittle.co.nz.