A group of women battling terminal cancer tell the Herald what they would do with extra time
One Rotorua woman has had to sell her rental property to pay the thousands of dollars needed monthly for breast cancer treatment, Ibrance.
The parents of another cancer sufferer have had to give up their retirement savings to cover the cost of the unsubsidised drug.
Both women have stage 4 metastatic breast cancer and are part of a national support network of Metavivors, secondary breast cancer sufferers, fighting to have the drug, which they say is extending their lives, subsidised.
The breast cancer treatment drug Ibrance, which is publicly funded in the UK and Australia, costs upwards of $5500 a month, depending on the dosage.
However, despite approval by the New Zealand Medicines and Medical Devices Safety Authority, there is no funding for the drug here.
The Rotorua woman says on top of her Ibrance treatments, each month her Vitamin C treatments, supplements, and travel to appointments costs up to $4000.
She also has a "major mental illness", and is on a benefit, which "under no circumstance" could fund her treatment.
Evans lives with her parents, who have used their retirement savings to fund the majority of her treatment costs.
"Pooling our money, some weeks we have had less than $20 between us, to cover food, petrol, GP visits ... Health is secondary after paying water, rates, power, and the phone bill."
Seeing the effect on her family members was "devastating", Evans said.
"It is heartbreaking listening to family members make multiple phone-banking calls in the hope that something may have changed. It is gut-wrenching knowing I am the cause of that."
She has had two treatments, covered by donations from friends, and made a Givealittle page which has left her feeling "incredibly vulnerable".
"I have experienced periods of rejection when nobody has donated, to feelings of guilt when people do."
The "huge burden" of financial pressures have left her feeling depressed.
"There is a very real human cost to Pharmac's decision making."
March on Parliament buildings by women carrying a petition to improve access to breast cancer medication last year. Photo / File
Another Rotorua woman, who wanted to be known by her first name, Raewyn, started Ibrance treatments in Autumn last year, selling a rental property to pay for it.
"As far as I was concerned there was nothing wrong with me because I was able to do all the things I wanted to do. At each of my three-month scans, my tumours have reduced.
"I believe I'm a perfect example of how well this darned Ibrance is working."
March on Parliament buildings by women carrying a petition to improve access to breast cancer medication last year. Photo / File
"I haven't got any grandchildren so I've got to stay alive until one of my children produce some," she said.
In October, 200 people marched on Parliament and delivered a petition with more than 30,000 signatures calling for Ibrance funding for Kiwi women with advanced breast cancer.
March on Parliament buildings by women carrying a petition to improve access to breast cancer medication last year. Photo / File
National's health spokesman Michael Woodhouse accepted the petition.
He said it was a "clear signal" and the time for funding was now.
National MP Michael Woodhouse in Parliament. Photo / File
Louisa Wall, Labour MP for Manurewa. Photo / File
Metavivors are also seeking an independent inquiry into Pharmac and how its run.
The Health Select Committee has since asked them for submissions about the impact of unfunded medicines on their lives.
March on Parliament buildings by women carrying a petition to improve access to breast cancer medication last year. Photo / File
The Cancer Treatments Subcommittee has recommended funding Ibrance but only for those who hadn't already received a hormonal treatment for metastatic breast cancer.
That means many women with advanced breast cancer would be excluded.
Breast Cancer Aotearoa Coalition chairwoman Libby Burgess told the Rotorua Daily Post the group hoped the Health Select Committee deem socio-economic inequities in breast cancer survival "unacceptable in New Zealand where we strive for equity and fairness".
"We expect the committee will be under pressure from the Minister of Health, who keeps repeating the statement that Pharmac is doing a great job and he won't intervene. If they succumb to this pressure they will say 'it's not within our brief' and nothing will change."
In response, Minister of Health Dr David Clark said he was sure the eight members of the Health Committee - which included four opposition MPs - "will be giving this [Metavivors submissions] due consideration".
Health Minister Dr David Clark. Photo / File
In last year's Budget, Pharmac was allocated $985 million for drug funding.
Pharmac chief executive Sarah Fitt said "Ibrance is just one of many medicines" it was considering for funding from its fixed budget, and each one needed "careful consideration".
"We need to be absolutely sure they will deliver the benefits claimed, and that we spend public money wisely."
Evans doesn't need convincing. She considers the drug "life-changing".
Evans doesn't want to spend her limited life expectancy campaigning for treatment and worrying about the price tag, but says "life is worth fighting for".
"We had to fight to have Herceptin funded and now it is. So that gives me hope."
Jackie Evans' breast cancer timeline
2008 - Diagnosed with early form of breast cancer, ductal carcinoma in situ (DCIS), removed with lumpectomy. 2009 - Radiation to chest wall 2010 - Developed swollen nymph lode in right armpit 2011 - Cancer confirmed in chest wall 2012 - Mastectomy breast removal, then six months of chemotherapy and five months of radiation 2016 - Diagnosed with stage 4 breast cancer 2017 - Oral and intravenous chemotherapy 2018 - Alternative medicine and Ibrance treatments
Breast cancer in New Zealand
- Third most common cancer - Accounts for more than 600 deaths every year - Risk of being diagnosed increases with age - Not common in women under 50 - Around 25 men are also diagnosed each year Source: Breast Cancer Foundation
