A Rotorua woman with a rare and incurable disease says she feared she would die as she fought to overturn a decision blocking her from using her $25,000 KiwiSaver to fund life-extending treatments.
Kirsten Bangs told the Rotorua Daily Post that after a month-long battle, her withdrawal application was approved last week and had been paid.
She is now calling for KiwiSaver legislation to be reviewed to make the criteria clearer.
Bangs was diagnosed with Felty’s syndrome in 2015. The rare autoimmune condition is treatable but incurable. It is usually associated with rheumatoid arthritis, an enlarged spleen and low white blood cell count.
She said she had controlled the disease into remission by 2021 but after contracting Covid-19 and chicken-pox last year, her condition worsened and she had to seek other treatment options.
Bangs said she had been advised she needed a “combination of drugs” and treatments, some unfunded in New Zealand. The cost to her was still being determined but one estimate was $100,000.
“It will be a combination of chemoimmune therapy and plasma treatment. It’ll knock me around. I’m anticipating it’ll get a lot worse before it gets better,” Bangs said.
She said she was waiting to have her spleen removed. “My pain’s not good. A lot of nights I don’t sleep.”
On top of that, she said she was advised last month to have four rounds of chemotherapy costing $35,000, and was diagnosed with another autoimmune disease – lupus.
Bangs said she applied to her KiwiSaver provider, BNZ, for $25,000 she had saved to be released on serious illness grounds on October 30 but was initially declined.
She said scheme supervisor Guardian Trust contacted her and suggested her GP adjust the application letter to better match legislative language when describing the likely impact of her condition.
“He [originally] wrote, ‘it is unlikely Kirsten will return to work’.”
Under the KiwiSaver Act 2006, people can apply to withdraw funds early for serious illness permanently affecting their ability to work or posing a risk of death.
In Bangs’ view, the rules “were basically asking us to bring a crystal ball with us and let them know how my condition is going to be in the future and if I will react to treatment, will I go back to work and all these kind of answers that we just don’t know”.
She said after the application was declined, she feared she was “going to die” before she could access the money.
Her GP submitted more information and Bangs was told last week her application had been approved.
She believed the KiwiSaver legislation needed to be reviewed and clarified.
“The way most people would interpret a serious illness is probably an illness that’s life-threatening [or] cannot be cured, which I do fit the criteria for,” Bangs said.
She said, in her opinion, the legal wording should be changed from “serious illness” to “terminal illness” as that would better reflect, in her experience, the tests being applied to applications.
BNZ general manager of wealth Peter Forster said Guardian Trust was the supervisor of the BNZ KiwiSaver Scheme.
Bangs’ application was revised and accepted after “further evidence from Kirsten’s doctor was provided to the supervisor”.
Forster said criteria for application under serious illness medical grounds in the KiwiSaver Act 2006 were “the same for all KiwiSaver providers”.
BNZ had received about 20 applications per month during the past year and “the vast majority” were approved by the supervisor.
He said serious illness was considered injury, illness, or disability resulting in “the member being totally and permanently unable to engage in work for which he or she is suited by reason of experience, education, or training, or any combination of those things.
“Or, that poses a serious and imminent risk of death.”
A Guardian Trust spokesperson said the “test for a serious illness withdrawal is legislatively very prescriptive”.
Bangs’ application was “initially declined as the supporting documents we received from the medical practitioner did not allow us to be reasonably satisfied that the member met the test”.
The spokesperson said after the conversation with Bangs, her medical practitioner provided more information supporting the application and following further review, the application was able to be approved.
The spokesperson said the majority of applications were approved but seeking additional clarification was common.
A Ministry of Business, Innovation and Employment spokesperson said KiwiSaver was primarily intended as a long-term retirement savings scheme, to give people a better standard of living in retirement.
Early withdrawal criteria were restricted “to ensure members do not miss out on the benefits of compounding growth in savings and investment returns”.
In addition to serious illness, other grounds for early withdrawal potentially relevant to this case included life-shortening congenital condition or significant financial hardship from medical treatment costs.
“[The ministry] is happy to receive suggestions for possible improvements to KiwiSaver early withdrawals, which can be considered if there is a review of these provisions in future.”
Patient Voice Aotearoa chairperson Malcolm Mulholland said patients who could not access their KiwiSaver were confronted with options such as “mortgaging their homes, shifting overseas (normally to Australia), accessing the drug via a compassionate access scheme, starting a Givealittle page, or dying prematurely”.
He believed if it was clear a patient was “suffering from a serious illness or is dying, then they should have the ability to draw down their KiwiSaver”.
Michaela Pointon is an NZME reporter based in the Bay of Plenty and was formerly a feature writer.